From Mugs to Medication: Fundraising for Si Buko Uganda

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A letter from Francis

We recently received a touching email from Francis, a friend of Cándido, who is one of our cherished CUE1 users. With Francis’s permission, we’d like to share his words with you.

Good afternoon Lucy,

First of all, thank you very much for your time dedicated to Cándido.

You cannot imagine what your visit represents in the life of Candido.
He knows, he is very, very intelligent, that his life is already a marked calendar, life is terrible inside him. It is a prison, as I was telling you two yesterday, from which he can never escape again, i.e. a jail.

For more than a decade I took care of my father, Mr. Dimas Duque, hour after hour, day after day, night after night. And suddenly one day the thought begins to seriously fail inside him, he knows it, he is aware of it but only his eyes can transmit it to him. The suffering is already shared with the caregiver, in this case, me.

My father, Dimas, passed away on December 14, 2022. He could not reach your technology in time for just a few months. I have been waiting for you for three long years, since 2019, since I studied your incipient research in an international magazine that mentioned Nature.

One day, January 2023, after my father’s death, walking desolately through Villaviciosa de Odón, I found Cándido again, once the Covid-19 pandemic had passed, but Cándido was already transformed into his suffering gaze.

I knew immediately what was happening to him, i.e. neurodegeneration disorder, and I gave him, with all my support and personal affection, the opportunity of yours, your applied science, to which my father could not arrive in time.

Yesterday, when Cándido and I walked together to his house, and at our goodbye with a hug, Cándido cried disconsolately.

I know those tears perfectly, and that is why I want to repeat to you and ‘express to your magnificent team’, that CUE1 represents the faithful companion who hears the heartbeat of someone who suffers from the terrible Parquison’s disease, especially in its stages 4 and 5 of aggravation and end of the patient’s life.

CUE1 beats, CUE1 you can touch it, talk to it, place hope in it that your next years of life will not be so terrible, that it will allow you to walk among the trees once more, that it will allow you to see the sunshine on the path one more day on one’s own feet.

This is what CUE1 represents for Cándido; that is why when he said goodbye to me yesterday at the door of his house he cried, of hope, of gratitude, with immense and deep gratitude to your team, i.e. Charco Neurotech, who have reestablished “HARMONY” for a few months or years [ 조화 ] almost lost.

The exact words that define CUE1 are as follows: 나의 고통을 돕기 위해 당신의 삶을 공유해주셔서 진심으로 감사드립니다.

Warmest regards,
– Francis

Cándido, walking in the forest without a walking stick. :)

Thank you, Francis, for your touching letter. Hearing this amazing story means the world to us and reinforces the significance of our mission: bringing back smiles to people with Parkinson’s.

If you would like to share your story like Francis and Cándido, please visit https://charconeurotech.com/share-your-story/ or drop us an email at [email protected].

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Support Matters: Parkinson’s Support Groups with Elaine Payne

We had the pleasure of spending an afternoon discussing support groups with Elaine Payne, chair of Friends of Parkies based on the border of North Shropshire and South Clwyd. Elaine shares the significance of Parkinson’s support groups, what unfolds in these gatherings, and how to find them.

How did you get started? How did you start bringing people into the group, and is it more general discussions, or do you focus on specific topics?

Elaine: The group was already up and running when I was diagnosed. For two years after my diagnosis, I was absolutely in denial, in shock. It took me two years before a friend said, “Yes, you need to go along.” So, I did, and I just walked straight back out again. It wasn’t me. I was so scared; I walked out.

About six months later, I thought, “I’ve got to do something about this.” So, I went back, and gradually, found there were more ways to improve the group. Now, I’ve ended up as chairman, for my sins. The most important thing about the group is the chat, the talking. If people get to chat with each other, they can learn far more than when they go to see their doctor or neurologist once every six months to a year. Sitting and talking to somebody in the same situation, whether you have Parkinson’s or you’re the other half of the person, is crucial because they have a lot more to share. It’s a really important group for both people with the condition and those who look after them.

What usually happens at a meeting? What kinds of things do you talk about?

Elaine: We hold monthly meetings with 50-60 participants wearing name badges. Typically, we feature speakers such as artists, physiotherapists, pharmacists, Pilates instructors, and experts in singing and voice training. Last month, the pharmacist talked about their role in the community and what they can help us with. We try to make it light but informative to keep it interesting. Charco has visited us, as speakers twice now, which has been really good.

We try to make the talks Parkinson’s-related, but not always. You sit and chat in comfortable surroundings. It goes very quickly; we’re only there for two hours, and we get so much done. The most important part of the whole meeting is when people just sit and chat with each other. That’s the best part. Then, if someone doesn’t know something or wants to know something, there’s always somebody else who knows somebody. 

(Christmas Lunch Event, FOP, 2023)

What would you say to someone who might be hesitating, or reluctant to go to a support group?

Elaine: Unfortunately, what puts people off is that they might see things they don’t want to see, like I did the first time I went. You see some far worse than you are, much further down the line. You think, “Oh, I don’t want to see this.” But, as you all know, we are all so different in our Parkinson’s journey. So, that’s really important – that you have to accept that you might see things, but they’re not all bad, and you’ll find out far more and make good friends.

Well, you’ve got nothing to lose. Just go, just go once. If you hate it, start your own group. If you put out the call, be it on Facebook, or posters in the local supermarket, people will come along, and then you can start up your own ideas of how you would like it to look and what you would like to have.

For me, it’s given me my raison d’ȇtre – my reason to be. It’s given me so much. If you just go along and sit down, you might come out with an application for a blue badge or a personal independence payment (PIP) which you might never have known anything about. You might talk about DBS; you might talk about all these. There are things that your neurologist hasn’t got the time to talk to you about. You’ve got the time to sit down and chat to somebody who’s already been through it, and you’ll come out with so much more than you went in with. So, that’s the reason to go; you will get more out of it.

“I also have a life outside Parkinson’s which is fantastic but my main raison d’être is to make sure that people get the support that is available they just didn’t know about it”

Is there a story that you can share with us where you didn’t know about something that you were able to find out by joining the support group?

Elaine: I knew nothing after my diagnosis. My neurologist told me, “Mrs. Payne, you have Parkinson’s. We’ll see you in six months. Here’s some medication. Just to keep an eye on yourself.” I knew nothing about Parkinson’s UK, support groups, PIP, medication changes etc. In fact I knew absolutely nothing. I walked away, sat in my car, and I cried my eyes out. I went in for a sore arm and came out with Parkinson’s. So, I knew absolutely nothing. I went to the internet. Unfortunately, when you go on the internet, it’s not always good. You find out far worse things. So, what I did was slowly, gradually talk to people, and that is the best way to learn. So, I have gone along gradually, and the more I learn, the more I know that I don’t know, and the more I find out. There is so much available out there people don’t know about it. But when you get to a group, there are more people there to share what is available, so you will find out.

With your support group, is it mostly people who are diagnosed with Parkinson’s or can family members also join in?

Elaine: Absolutely, they’re going through the journey as well. It’s as important, if not more important, for them to have room and space at the meeting. So, we often put them in a separate room with a different speaker. Parkinson’s can become very boring if all you ever talk about is Parkinson’s. So, it gives them something else to talk about. What they do is that they will sit and chat to each other and they’ll find out more. As I say, while we’re all talking about medicines and consultants and moaning about this and that, the family members are talking about uplifting things that they can do instead. They’ll get together, do sponsored walks, and that sort of thing to raise funds for the group. So it’s really important for the other halves to be looked after because they’re the ones that do the driving, they’re the ones that do the unpaid care generally. We have our medication, we have our consultants, they have nobody. So, this way, they can now have somebody to talk to. They’re really, really important for family.

(Friends of Parkies Choir Singing Carols at the Christmas Lunch Event, 2023)

Can you tell us about a time when your support group had a really positive impact on a person with Parkinson’s?

Elaine: A couple of years ago, our group had a stall at a vintage car show, and we were selling raffle tickets for prizes. This lady came along, and she said, “Hey, can I have some tickets?” I said, “Yes, of course you can. Do you know anybody who’s got Parkinson’s?” She said “I was diagnosed just last week,” and I gave her a big hug. She said, “Just for somebody to say I’ve got it as well,” she said, “that made all the difference.” and she has been coming to our group since that day. So, for me, that’s what groups do. They make you feel as if you are part of something, not just going through it alone.

“If I can help somebody make life a little bit easier then I definitely will.”

Are there challenges of having a support group? What kind of things do you think can be helpful for the support groups to be more effective?

Elaine: Fundraising, information, and support— We make everything inclusive so people don’t have to pay to come along. We have a raffle ticket, people bring a raffle prize, and you can then choose to buy a raffle ticket or not. There’s no charge for coming to the group. We do fundraising towards our CUE1s, our lunches, our outings. The way to keep going is to have funds to pay for the rent for the hall and that sort of thing. We often receive offers from complete strangers. So, what we do is we challenge our members. We say, “Come on, 2024 is coming up. How are we going to keep going? Do we want to keep going? Yeah, we want to keep going. How do we keep going? Right, we’re going to have a sponsored walk.” The challenge for us is to keep the thing as interesting and as different as we can, and have speakers that are interesting to the people.

Where do you find the support group that is right for you? Do you think there is anything that we can do to help spread the word about support groups? How can people find them?

Elaine: I use Facebook every month. Every month I put, “Are you affected by Parkinson’s? Come along.” So, the thing to do is look on the internet. And if you’re not on the internet, go to your local supermarket, look on the notice board, and see if anybody’s putting posts up, which we do all the time. Ask your doctors because they’re supposed to know about all the social prescribing these days, and anybody should be able to go to them and ask, “I’ve been diagnosed with Parkinson’s or MS. What do you have for me?” So, local supermarkets, doctors, the internet, and Facebook.

(Friends of Parkies Facebook Page)

Parkinson’s support groups are more than meetings; they are communities that empower with understanding, knowledge exchange, and strength. 

As Elaine mentioned, you can find independent groups near you by visiting local supermarkets, doctors, the internet and Facebook. You can also find a Parkinson’s UK-associated groups near you at the following links :)

https://localsupport.parkinsons.org.uk/

https://www.parkinsons.org.uk/information-and-support/full-list-local-groups

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Finding Hope and Joy Through Adversity: Jeff’s Journey with Parkinson’s

We recently had the opportunity to speak with Jeff Crow, one of our long-term CUE1 users, to hear more about his journey and how his CUE1 has supported him. Jeff’s story originally made waves on BBC and ITV news in April 2023. 🙂

Recently, Jeff and his wife, Gill, visited Charco, sharing their experiences living with Parkinson’s and how the CUE1 has made a difference. Jeff’s visit left us inspired by his positive attitude and approach to life. It was a heartening reminder of the strength within all of us. 

Embracing Change and Acceptance

Jeff’s journey with Parkinson’s began with a noticeable tremor in his hands back in 2011. After receiving the diagnosis, he faced a period of uncertainty, not knowing how the condition would impact his life.

The realisation that Parkinson’s symptoms may take him away from playing in bands, a passion that had brought him so much joy, was a difficult pill to swallow. However, Jeff’s positive outlook allowed him to cherish the happy memories he had created through his music, finding solace in the knowledge that those moments would forever live on within him.

Embracing Support and Giving Back

Despite the challenges he faced, Jeff found strength in the unwavering support from his loved ones and various agencies, particularly the NHS. In his quest to make a difference, he began volunteering for charity and research organisations, eager to contribute in any way he could. He mentioned, “I’d like to be able to do something to help. If it helps someone down the line, that’s fine. If I don’t get anything out of it, it doesn’t matter. You’re helping someone else.”

A Beacon of Hope

Amidst the trials and tribulations of his journey, Jeff found a sense of purpose and hope through his involvement with Charco. The realisation that he was directly benefiting from being part of the research was a turning point, filling him with a renewed sense of optimism and purpose. Jeff’s experience stands as a beacon of hope, not only for himself but for others with similar challenges. His willingness to share his story and experiences serves as a source of inspiration and encouragement for those navigating their own paths with Parkinson’s.

A Heart Full of Gratitude

Jeff’s journey with Parkinson’s serves as a touching reminder that even in the face of adversity, hope, joy, and purpose can be found. His unwavering positivity and determination to make a difference are an inspiration to all of us at Charco.

To hear more about Jeff’s journey with his Parkinson’s and the CUE1, please watch our latest video featuring Jeff here:

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Sue Rossiter: Teeing Off for Parkinson’s Awareness at the Four Nations Golf Tournament

We’re excited to introduce you to Sue Rossiter, a golfer living with Parkinson’s, who has been given a remarkable opportunity—to represent England in the prestigious Four Nations Golf Tournament charity event. We’re excited to join her on this remarkable journey, supporting her every step of the way.

Sue’s Story

Sue embodies more than just a passion for golf; she’s a dedicated mother to two, a cherished grandmother to four, and a loving wife to one. Seven years ago, her life took an unexpected turn when she received a Parkinson’s diagnosis. Looking back, she suspects that she may have been experiencing symptoms for at least four years before the official diagnosis. The initial period was tough for Sue, and she battled depression for the first six months.

In the past five years, she’s had to undergo two hip replacements, adding another layer of adversity to her journey. Throughout it all, Sue has had the support of her incredible family and friends; especially a steadfast friend who has stood by her side during her toughest moments. She mentioned as well that she was able to get through the beginning thanks to a supportive neurological physiotherapist

The Power of Golf and Exercise

For nearly two decades, golf has been a central part of Sue’s life. She understands firsthand the importance of exercise when living with Parkinson’s. Golf, with its unique blend of physical activity, balance, and the social aspect of belonging to a club, has been instrumental in helping her maintain her physical and mental well-being.

In fact, Sue’s dedication to golf and her commitment to staying active have allowed her to achieve something remarkable—she’s reduced her handicap by four shots. According to Sue, such progress would not have been possible without the help of the CUE1.

How the CUE1 Helps Sue Play Golf

In an interview with us, Sue has said “Obviously I have what everybody calls my buzzer, my CUE1. It has made a considerable difference. If you get a CUE1 it’s not a ‘wow’ transformation the second you put it on. for me it’s more subtle than that. You know, you notice that your legs don’t get so heavy when your medication is wearing off. Your stride is a little longer. My sleep is so much better. My energy levels have increased. I just generally feel better.”

She also added that “Interestingly, last year, my friend and I ran off the day playing golf and my shots were going more wide and not as long as they had been a few days earlier and I realised I had not turned my buzzer on. And within 20 minutes they straightened up. 

My husband pointed out, he also plays golf; we do the front nine and then depending on my timing I tend to run out of what I call my personal juice, my meds start running out, as I have the hill to walk up, and so you get a bit sloppy with your walking.

But we noticed with the CUE1 that I was still lifting my feet. So if I’m not wearing it, my legs go dead and heavy. And if I am wearing it, I have a longer time before I notice that my legs have gone. And it’s normally that trigger that makes me think I forgot to take the medication again.

But so it extends my period of time that I can go without my medication, I suppose. That is a way of putting it. So it definitely helps that.”

Sue’s Opportunity to Shine

Now, Sue has a golden opportunity to represent England in the Four Nations Golf Tournament charity event, set to take place at the Belfry golf course on October 10th and 11th. It’s a chance to shine a spotlight on the incredible impact that sports and exercise can have on those living with the condition.

With the help of the community, we have raised £870, equivalent to 115% of the target funds necessary for Sue’s sponsorship, which is essential for her entry into the tournament. Charco has matched the contributions, and we would like to thank those who have joined us in supporting Sue. Your sponsorship has made it possible for Sue to pursue this amazing opportunity.

We want to wish Sue the best of luck as she prepares to represent England in the Four Nations Golf Tournament. We are confident that you will shine brightly on the golf course and as an advocate for Parkinson’s awareness. :)

Teeing Off for Parkinson’s Awareness

Sue’s journey is a testament to the resilience and strength of people living with Parkinson’s. It’s a reminder that with determination, support, and the right tools, one can continue to pursue their passions and make a difference in the world. We, at Charco, are grateful to be able to stand beside Sue on this journey, and we invite you to join us in cheering for her as she tees off for Parkinson’s awareness at the Four Nations Golf Tournament today. 


If you are a CUE1 user and would like to share your story, please don’t hesitate to contact us by emailing [email protected]. We would love to be part of your journey. :)

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Bringing your CUE1 to your doorstep

From the moment we first met Keith, a wonderful gentleman with Parkinson’s, keeping a personal connection has been at the heart of everything we do at Charco. We believe that staying engaged with you is the most crucial aspect of our mission. That’s why we organise open days each month and actively participate in local Parkinson’s foundation events and groups.

As a part of this personal engagement, we go for a hand-delivery of the CUE1. This is an opportunity to interact with you personally.

Here we take you behind the scenes of our visits to help set up the CUE1, and what our team and community think about hand deliveries. :)

A hand delivery to the community

A visit from the team

The visits themselves are always tailored to each person, to ensure that we get the most out of our time with you. Whether that’s explaining how the CUE1 works, showing you how to use the CUE1 with ease, helping to download and understand the app, or even just discussing further what can be done to ensure the greatest benefit possible. No matter your reason for choosing hand delivery, we are always happy to visit, and will address any questions you may have personally. :)

Our community

Seeing smiles first-hand

As much as each visit is for your benefit, it is also an amazing opportunity for us to learn and improve. We are able to sit and talk at length to people all over the nation, from a range of backgrounds, and with a variety of different symptoms and needs, finding out exactly what is required from the CUE1 and from us, as well as what we can do to improve. Though we collect feedback in multiple ways, none are as extensive nor comprehensive as that which we collect when visiting you :)

The other great benefit, from our point of view, is being able to meet you, the wonderful people of our community, and see smiles on your faces. Your kindness when  welcoming us into your homes and even offering us tea, coffee, and amazing conversations, makes every single visit worth it. Being able to show you how to set up your CUE1, and seeing your reaction to it, has provided some of the most memorable moments for us.

Team Charco on hand deliveries with the community

Our team’s experience

Each member of the in-person visit team has their own view on the best parts of the visits, and we wanted to share with you some of the thoughts from us on our visits to you.

“Leading the supply chain from manufacturing through to our warehouse is very rewarding, but nothing brings me more satisfaction than being able to visit the user and deliver their CUE1 in person. Being able to sit with the user and explain what the CUE1 is and how to use it in the comfort of familiar surroundings is invaluable. This service provides insights into how Parkinsons affects their life, and allows Team Charco to offer advice on how best to use the CUE1” – Paul

“It’s been incredible being able to meet so many of our users across the country, and conduct research as well. The best part of hand deliveries is being able to hear so many people’s different stories and be constantly learning something new, as well as witnessing first-hand the effects of the CUE1 on our users!” – Emaan

“Hand deliveries are a great way to meet people in the community. As a CUE1 user myself, I am always happy to talk to people about my experiences, and use my insights to help them get the greatest benefit possible. It’s been a really positive experience.” – David“Visiting the community is truly the best part of my job. I have met so many wonderful people, and have heard fascinating stories from each of them. Though we only get a short time with each person, I really appreciate them allowing me to come and help set up the CUE1, and to be able to share in some truly special moments” – Ollie

“I really enjoy the hand delivery aspect of my job, as it’s a great way of getting to know our community and their loved ones in the comfort of their own home. Hand delivery can also help to reduce any uncertainty around the device. During the visit, we take time to explain how the device works and how it can be individualised to each person. This includes device demonstration, assisting with placement of the device, and answering any questions around the device or the app. We always receive positive feedback on how beneficial the hand delivery option is to our users, and I am grateful I get to be part of the hand delivery team!” – Nicola

For each team member that is lucky enough to visit you in your homes, these experiences are truly special, and form an essential part of the experience.

A hand delivery

Voices from the community

For the whole team, the most important thing is to ensure that each person we visit feels that they are a part of our community, and that you have the support of each and every one of us. Though each visit is different, we are always grateful for the kind words of our community members, which keep us motivated and moving forward. We heard from Elaine, a CUE1 user, and her husband Tony, on how they feel our visit helped them.

“My home visit was amazing; well, actually, overwhelming, to be honest. I had Lucy, Paul and two others come into my little bungalow, and I felt so special (I know, it sounds corny, but I did) to be chosen for a visit. I had already had my CUE1 for a while, and apart from having a problem with the stickies, was actually really benefiting from my ‘magic button’. However, after talking to the Charco team, I felt far more confident in using both the app and the device. I would certainly recommend a visit, if it is at all possible” – Elaine

“I’ve never known anything like it. Right from receiving the CUE1, all the little details like the handwritten note, to the delivery service, I’ve never known a company like it. It has completely refreshed my view of people, and the difference in Elaine has been stunning. It’s been huge” – Tony

Hearing your feedback is always heart-warming, and knowing that our visit has made such an impact is incredibly special to us. Thank you to Elaine and Tony for letting us come and visit; it was a truly memorable day.

The future of our visits

As we continue to grow, we will welcome more and more of you into our community, and we look forward to hearing everyone’s experiences. Still, as we grow, we are determined not to lose sight of what matters, and our visits are going to continue to be a crucial part of our ethos. Without the support and feedback from you, our community, we could not have reached this point, and our future development will always be informed by your needs.

Of course, as we grow, we will update our methods, to ensure that each person receives efficient and personalised care, and that our visits remain as enlightening and memorable as they are now. Paul Simpson, our team , tells us more. 

“To date we have successfully delivered a CUE1 device to over 300 people in person, which has been achieved with a very small team. We plan to scale up the in-person deliveries by bringing in new team members who will provide us with a wider coverage, giving us the ability to deliver more devices in a shorter time frame. This, together with constantly adapting our systems and processes, will support a scale up of our deliveries”.

A hand delivery

The personal touch

As we continue to grow, we cannot wait to meet more and more of you during our visits. Meeting you and hearing your experiences is the most important part of what we do, and we are grateful to everyone who lets us come and demonstrate how to use the CUE1. If you would like, you can select the option for a visit from us when you purchase your CUE1, and we will do our best to be with you as quickly as we can. Thank you to everyone who we have visited so far, and to everyone who gives us the opportunity to visit them in person. :)

Thank you to everyone who contributed to this blog. To sign up to our waiting list, please follow this link, or to check your place on the waiting list, please click here. When you are offered your CUE1, please choose the option for ‘Hand Delivery’ whilst checking out for your own visit from the Team.

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So, they tell me crowds may be a problem…really?

One of the first things I noticed having Parkinson’s is the massive impact it has on self confidence and how you socialise with others. I fully admit, in the early days, I just really wanted to be able to step off the carousel, compose myself, then step back on, but life just doesn’t work that way, does it? We all have our own way of dealing with difficulties we face; mine is to face everything head on, no compromise. My family clan motto is nemo me lacessit, ‘I do not yield to anyone’, and as far as Parkinson’s is concerned, it is my motto for life.

One of the more annoying symptoms you can potentially get lumbered with is a lack of ‘drive’, general apathy, and anxiety brought about by interacting with large groups. When I was first diagnosed (quite a long time ago), I found that I gradually started to withdraw from what was an active social life- we used to go nightclubbing and to local pubs; nothing could phase me, and I was really enjoying it. I first noticed it one New Year’s Eve- I just couldn’t get ready because I was getting anxious about people perhaps spotting I had ‘something wrong’, and the classic “why do you look so sad?”. This went on, believe it or not, for a good few years- mostly during my ‘retirement period’, where I believed everything I was told, and at that point Parkinson’s could have got me. Thankfully, it didn’t, which is why I’m here today and sharing my thoughts and experiences with you. Anyway, one day during my (enforced) retirement, I realised that I hadn’t been really that easy to live with, due to my miserable demeanour. I was, to turn a phrase, a ‘grumpy old man’. Things had to change…

Summer of 2016 saw us in Florida (still my favourite holiday destination) and I had applied for a couple of jobs to relieve the boredom I was feeling- I got two interviews out of two applications (one was a guaranteed interview due to ‘disability’). One I clearly didn’t have much chance with (the guaranteed one), but I absolutely smashed the other one out of the ground! 

I was back at work! Over the next few years, 6 years to be exact, I gradually rehabilitated myself into dealing with face to face contact, the daily walk to work, and interaction with others. The biggest influence on my coping with crowds and gradually getting back into society has been my darling wife; she has dragged me, at times, to places where crowds will be present. I now go to football matches (home AND away sometimes), we go to a music festival every year (Kendal Calling- which isn’t actually in Kendal…), we go camping (yes, in an actual tent), and we have recently even been to a concert where we stood near the front (there was no ‘mosh pit’ at a Paul Heaton and Jacquie Abbott gig!). It was absolutely fabulous- I really hadn’t realised how much fun I was missing out on. I now have no fear, I have managed to get over it- I think you just have to go for it. If you want to do it please don’t let the Parkinson’s voice in your head say “No , you can’t possibly do that”, because yes, you can. Every time someone tuts loudly (always when they’re behind you?), every time you get a funny look as they think that you’re drunk, due to the staggering about? Every time someone won’t give up their seat on the train/bus? Can you see where this is going yet? Every time you see someone in a flash car (why is it almost always someone in a Porsche, Ferrari or even, on one occasion, a Bugatti) parking in a disabled bay because it’s closer to the door? Or using the disabled toilets at a venue (because there’s often little or no queue) and every time someone or something tries to tell you that… you can’t do that because “you aren’t a disabled person” (not all disabilities are external), just take a deep breath and do the right thing. People are, I find, normally very kind and thoughtful; I know there are some people who you couldn’t describe as friendly, but the majority will help. Don’t let Parkinson’s take you and turn you into a recluse- the world is full of crowds, they’re everywhere; you simply can’t get away from them. Embrace them. You can walk, even though you may, like me, descend into a shuffle; you are still there, a part of the crowd. You are not ‘in the way’, or ‘holding everyone up’; you will find that if you can explain what’s wrong, people will understand- I know, I’ve been there…

Stand up, stand up straight, stand up for yourself.

Nemo me lacessit.

Peace out- Dave L

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Tailor made care, with Kasey Vejar

Kasey and her mother, Billy; care

During a trip to the US, we were lucky enough to meet with several organisations and community members, including Kasey. We were impressed with how she had organised the care of her mother, Billy, who lives with Parkinson’s. We caught up with her to find out more about the technology she uses, how she has set up a system for Billy’s care, and what advice she would give to those who are keen to follow her example.

‘As independent as possible’

Larry and Billy; care

“I was looking for ways to keep them as independent as possible”, Kasey tells us from her home in Kansas. Billy, having lived with Parkinson’s for the past fifteen years, had to move in with Kasey nine months ago, along with her father, Larry, a former carpenter. Kasey was keen that they be able to maintain as much of their autonomy as possible. “I’m very keen on keeping [their] quality of life high”, she says, a desire that has motivated her to keep Billy’s care in an orderly state since they moved in. Having been a mother of 6, Billy was used to organising effective and compassionate care, and it was now Kasey’s time to return a mother’s kindness by looking after her.

Kasey is not new to the task of organisation, having run her own business in organising home spaces. Nevertheless, the task of looking after Billy brought about new and unexpected challenges, and Kasey had to engage in lengthy research to find out the best tools and techniques to ensure that Billy’s care was efficient, personal, and allowed for her to maintain the greatest independence possible; a key consideration for her parents, who had long been in charge of their lives. 

Additionally, her parents are soon moving to an independent house, where Kasey will no longer be able to oversee their care in person full-time. “They have the incredibly fortunate circumstance of a private insurance policy that pays for private home nursing care, that my dad got about 20 years ago”, Kasey tells us, but she was determined to ensure that there was never confusion as to Billy’s routine, or any lapses or difficulties in her care.

‘I prefer to look for myself’

Larry and Billy; care

Kasey began to do extensive research into any device or gadget that could be of use. “I don’t really wait for someone to tell me about something”, she says; “I prefer to go looking for it myself”. Her determination paid off, as she found several gadgets that have helped Billy, from a walker that shines lights on the ground to aid with cueing, to a medicine case that sounds a gentle alarm whenever she is due to take medication.

One of Kasey’s favourite finds, however, is a button that alerts her whenever Billy has a fall; Kasey spent a long time trying to find just the right thing. Many of the devices she found automatically called an external service when the user fell, alerting local ambulances and a support team, but Kasey found that this wasn’t right for her. “Her speech is often poor, and I don’t know if they’re going to be able to communicate with her very well”. It was better for Billy that the button called Kasey,  and her care team, to help keep everything streamlined and personal.

After a lengthy search, Kasey managed to find this perfect button: activated when Billy falls, it automatically calls Kasey or one of her carers, as well as sounding an alarm. This has given Kasey the ability to better tailor her care to Billy, making the transition back to living independently easier for both Kasey and her parents, providing peace of mind for all.

‘The spreadsheet queen’

Kasey showing her mother's care system; care

All these gadgets can become quite expensive, but Kasey has also utilised spreadsheets and free apps to better organise Billy’s care. Kasey was in need of an app that allowed her and Billy’s carers to communicate, schedule appointments, and organise, but found that they were either too simple or based toward more corporate nursing. 

After much searching, Kasey discovered VerifyCare, an app. “I love it, and all the caregivers love it. It lets us manage and track medications, vitals, appointments, their schedules, and leave notes of anything relevant”. Using the app has allowed her to stay in control of the care plan, whilst making it flexible and easy to pick up for anyone who might be caring for Billy that day. 

She has also found that organising things into spreadsheets has been greatly useful; she proudly tells us that she’s “the spreadsheet queen”. Having run her own business, Kasey is an expert at keeping things ordered on spreadsheets, and using this method has meant she can keep track of all relevant information with great efficiency. “I’m sure there are other programs out there, but it’s what I’m familiar with… it’s about finding what’s right for you”.

‘Maintaining is easier than building’

Billy's care system; care

There are, sadly, still issues with finding the right care for Billy, though Kasey tackles each with characteristic vigour. In particular, Kasey has found it hard to find a phone that’s perfect for Billy. “She loves to talk on the phone to her friends and family, but can’t use a smartphone with her tremor”. Kasey has tried one device that was designed for older people, but found that it was overly complicated to use, and was unsuitable for Billy. Never one to be deterred, Kasey tells us that she already has another phone in mind. “The buttons are big and they’re rubber… When you push the button, it talks back to you; if you press three, it says three, so it stops her dialling the wrong number”. 

Kasey’s determination to find the best way to look after Billy has led her to develop an entire system, utilising a mixture of gadgets, apps, and old-fashioned spreadsheets to coordinate everything, giving Billy personal and appropriate care whilst maintaining her autonomy. We ask her what her advice is for others who may be wondering how best to set up their own care system; how can others follow her example?

“It takes a lot of time to get a system set up, and a lot of effort and research, and the system will always require maintenance. But once you have a system, making adjustments is very quick and you can get your hands on information with ease. Maintaining something is much easier than building it”. Now her system is so well established, it’s clear that Kasey will keep it highly maintained, benefiting everyone in her life.

Billy with a gadget; care

Thank you to Kasey for talking to us, and for sharing her organisational wisdom. To find out more about how to care for a loved one with Parkinson’s, please follow this link.

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On the road to the London marathon

Dave runs the London Landmarks half marathon

Go to London, they said, run the London Landmarks half marathon, they said, it’s absolutely fantastic, they said…

After the weekend in the capital, which included watching my football team lose in a top of the table clash (Carlisle United?), we (that’s me and Helen – my wife) dragged ourselves out of bed on Sunday morning to take part in the London Landmarks half Marathon. It never ceases to amaze me how people who live in London appear to live at a faster pace than those of us who live (a lot) further North. People were rushing around at 9am on a Sunday morning- why? I really don’t know, maybe someone can explain it?

Setting off with kindness everywhere

After negotiating a massive gap between train and platform at Clapham Junction (I almost had to run and jump into the train!), we arrived via Vauxhall station and the Victoria line at Green Park. You could tell we were close by the sheer number of people walking around in various charity t-shirts. We then walked past The Ritz and onto St James Street in our search for the elusive baggage buses (more on that shortly). Unfortunately, it was a little on the ‘fresh’ side, and there were an awful lot of people wandering about looking very cold; I don’t suppose, when you consider the temperature eventually reaching around 15°C, most people would have even thought about wearing something warm. One of the things I like about these events is how it brings out human kindness to each other; every year, people simply peel off any extra layers and leave them at the start, where they are collected by various charities that support the homeless, and they are then redistributed to others more needy. My wife had somehow managed to get into the wave before me; runners set off in ‘waves’, with the first one setting off at 09:30, though I didn’t pass the start line until 11am! There were so many people!

We ran together and finished the line together 

If you know anyone with Parkinson’s really well, you know that a crowd doesn’t normally make us particularly happy, but I was off running and nothing was going to stop me. I saw the ‘Charco Paparazzi’ at mile 1; I always pull faces at the camera, and the photos will no doubt show me looking like some crazy person! The Paparazzi stalked me around the course; it’s some trick, knowing exactly where I was going to be and when! It’s not really that mysterious, as we are all trackable nowadays. Simply download the app, put in my race number, and there you go! Details of my current pace, location, and more can all be found, so it makes it easy to find others. This will be useful during the marathon (not long to go now!). I caught Helen up at around 11.5miles, and so we ran the last mile and a half together. We even crossed the finish line together; this is the first time I have ever done that, as my competitive nature does not normally allow me to do such a thing.

“Well done dad” is all I wanted to hear 

We ran across Westminster Bridge together and back down to Downing Street, where we were greeted by not only the two Charco team members, but my beaming daughter (who, by the way, is running the New York Marathon later this year). “Well Done, Dad!” is all I wanted to hear. Her Mam got a “well done” too. We then had the mission of finding the baggage buses so we could get changed out of our sweaty running gear into something a bit more comfortable. By the time we’d found the buses (they’d moved them!), it was severely eating into our pub time, so we went up some steps and down some steps more times than I believe was necessary (my daughter does like to test our fitness levels). We eventually went to probably the largest pub I’ve been to in a very long time. It even has a slide and bowling alleys inside (as well as an ice cream parlour). We sat down and had that well deserved pint I had promised myself since 09:00 this morning. I also at this point got to finally meet the legend that is Tom Walden; not as tall as I expected; people always look taller online for some reason, I think. Tom had been on the course too, although I didn’t see him.

Is it 13.1miles or is it Parkinson’s?

We were both starting to stiffen up when it was time to leave and go for our TEA! Remember, I am a Northerner- our meals go Breakfast, Dinner, Tea, and NOT Breakfast, Lunch, Dinner. The day ended with trying to get into the shower with everything starting to stiffen up and becoming a tad painful. I blame it on Parkinson’s, obviously, but some people will tell you it’s because I’d just ran 13.1 miles around London, on a kind of masochistic tourist trail around all the landmarks of our capital city. Anyway, in 19 days, I’ll be back, this time to do it all again, but twice as much. We start at Blackheath and we don’t finish until the Mall. London will experience the ‘Beehive sprint’, or maybe a ‘flying goose’ (ask me sometime and I will demonstrate!).

Remember; we don’t finish because Parkinson’s makes us, we finish because WE are done!

We fight on; another victory, Dave-2, Parkinson’s-0/

Jog on, my friends.

Peace out!

David Little

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The Healing Power of Tango, with Kate Swindlehurst

Kate dancing tango

We talked to Kate Swindlehurst, author of The Tango Effect and a long time tango aficionada, about her Parkinson’s, her literary career, and what makes tango so effective for those with the condition.

“A dance of close embrace”

Kate Swindlehurst

“It was an accident, really- I had wanted to learn salsa”. Like many of the most interesting parts of life, Kate came across tango unexpectedly. Having been a teacher for many years, Kate took the opportunity to travel to Mexico and teach there for a year, igniting a love for Latin American culture and an interest in salsa dancing. When she returned home, however, she found that salsa classes were hard to come by; by chance, someone happened to be teaching tango classes in the same school she worked at. “It felt at the time like it was the second best option… I thought, it’s not salsa, but it’ll do, but from the first lesson I was hooked.” Twenty years on, Kate is still an aficionada, having kept up her love for the dance she once discovered by accident.

“It’s a social dance, essentially a dance of close embrace.” Kate’s love of tango comes, in part, from its ability to link two people together without using language, instead using each other’s bodies to move in time to the music freely. “There’s a whole sort of unspoken communication which occurs sort of chest to chest and, arm to arm, hand to hand also through the music.” This bond and closeness is something that is unrivalled in any other dance form, and the intoxicating nature of tango, its freedom and passion, is something that still has Kate enthralled by it, even two decades later. “It’s quite a magical experience, but it’s absolutely captivating to be part of it… and I think that an unspoken communication in concert with the music, if you like, is at the heart of it.”

“Tango asks all the things from a dancer that people with Parkinson’s can’t do”

Kate Swindlehurst

Kate’s Parkinson’s diagnosis came after she had noticed difficulty in moving her right arm. “my left arm was kind of behaving normally, but my right arm was just hanging by my side, and one of my colleagues at work said, you really need to go to the doctor. She must have spotted the signs.” The doctor confirmed that Kate had Parkinson’s, and she tried to continue as best she could with everything, including her job as a teacher and her tango, though she eventually had to retire from her profession. As for tango, Kate found it hard to continue on for a while, but was determined to keep dancing, and was lucky enough to find two teachers who wanted to explore the effects of tango on Parkinson’s. “I already knew that tango was supposed to be particularly good for people with Parkinson’s, and I found these two particular teachers that were very keen to explore with me exactly how it helps”. This burgeoned from an interest, to an article, and eventually to Kate’s book, published in 2020.

The Tango Effect, in Kate’s words, “takes the form of a memoir, tracing the impact of the dance every year.” Each chapter focuses on a different part of the culture of tango and how it has affected her, ranging from the music to the community. The benefits that tango has had for Kate are many and varied. “It’s really a difficult dance, because it involves multi-tasking. That’s something that people with Parkinson’s find really difficult; there’s something about the degree of challenge which makes it particularly powerful somehow… It also asks all the things from the a dancer that people with Parkinson’s can’t do; for example, it requires balance, good posture, and for you to be able to step confidently to initiate movement and respond to movement, to turn, to twist, to pivot, to negotiate and your partner’s feet.”

Kate Swindlehurst

Kate likens these complicated steps to learning to walk again, and after several trips to Buenos Aires and many years dancing, the steps have become far easier for her. Travelling to the home of the dance was an emotive experience for Kate, and one that has only improved with each visit. “Travelling to Buenos Aires made a huge impact. The first time I set foot in Salon Canning, a world-renowned milonga (regular events where people gather to dance tango), I burst into tears. To think that I, a beginner from England, could cross the world to experience tango at its source, could actually dance in the same space as Porteños… It felt like such a privilege to be able to share some of the history, the music,  the culture. And each time I returned, the pull was stronger … “

What Kate particularly enjoys about tango is that, in contrast to some of the more rigidly choreographed styles of dance, tango allows for a free expression of movement. “It’s not choreographed in the traditional sense; when you begin, you learn the sequence of steps, but very quickly that sequence of steps sort of drops away and you figure out what to do in communication with your partner… The lack of a set sequence is quite challenging for the dancer”. This focus and concentration, making the dancer multitask and think and respond quickly, means that tango can benefit both mind and body, a theme which Kate explores in her book, and has helped make her into an excellent dancer.

“A deep connection through the dance“

Kate Swindlehurst

Although Kate is a long time tango aficionada, her primary passion is writing. Though she merged the two in her latest book, she has also written novels and short stories, based on a broad array of topics and ideas. She wrote a series of short stories, Writing the Garden, based on her time as the writer in residence for Cambridge Botanical Gardens; her novel The Station Master, about a Bulgarian railway worker and his encounters with migrants, explored the response to the refugee crisis, and was the winner of the 2017 Adventures in Fiction Spotlight competition for debut novelists. These achievements are huge for a writer such as Kate, with novels being her main form of expression whilst creating; poetry or playwriting require, according to Kate, a skillset foreign to her; “prose has always seemed like the most direct route onto the page”.

Kate’s literary influences are many and varied, ranging from such great novelists as Charles Dickens and Virginia Woolf, to poets such as Pablo Neruda and Simon Armitage, and to lesser known writers, such as the nature writer Tim Day. Woolf, in particular, holds a fascination for Kate. “I did my first degree in London, and I loved Virginia Woolf. In fact, I spent a lot of time not going to lectures, instead sort of drifting around London thinking I was Virginia Woolf!”. Kate’s favourite type of book are those in which “humanity is challenged, and the responses to this situation”. She highlights The Promise, Damon Galgut’s Booker prize winning novel, as an example of this.  “I think he has a kind of mission to change things, often through quite dark humour”.  These influences are reflected in Kate’s own writing, and her intent to describe what she sees with an unflinching yet good humoured eye.

Kate Swindlehurst

In her books, Kate finds that the interactions between people are key. “‘The Station Master’ centres around the relationship between a middle aged, retired station master, and a young Syrian refugee… I want another situation with two central characters that explores the intimacy of the relationship between the two for my next book”. The intimacy and unspoken bond between people is clearly of fascination to Kate. “I’ve always been interested in unlikely intimacies, in the impulses that draw unlikely characters together and I suppose tango feeds that interest: the way that two people with apparently little in common can make a deep connection through the dance”. As her next book, about a man living in Cumbria, her old home, develops, this is something that is sure to explore in ever greater depth.

‘Tango is worth the pain’

Kate dancing tango

With her next book well underway, and her passion for tango and its community only deepening (“I’m actually a DJ for tango now”), Kate seems to have little time for anything else. Yet she assures us that she has no intention of slowing down. “It sounds really cliché, but what would I do if I didn’t do anything? I like to keep going, keep active.” This mentality has driven Kate thus far, and she is sure to see even greater success with her writing as a result. Her final word to us? “I really think tango is worth the pain, worth the effort… I would recommend it to anybody”.

Thank you to Kate for taking the time to talk to us. Please click here to see her website and find out more about her and her work, and please click here to read more about tango and how it can help those with Parkinson’s.

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Intrepid Explorers needed?

Ollie and Dave do Scotland…

Ok, I bet that got your attention? Working for Charco has its benefits, the least of which that I’ve recently found is the ability to really make someone’s day special. The Community Support team has been doing this for a while now. They are the hardy souls who travel to all points on the compass in the UK, delivering the CUE1 in-person to those who request their CUE1 to be delivered by a member (or sometimes two) of the Community Support team. I was recently asked to join them, and of course I accepted- this is an honest account of what we got up to on our Scottish Odyssey. 

After about a week’s planning, we were finally ready to go. The itinerary had been planned (check), hotels booked (check), Ollie’s train to Carlisle (check); everything was in place. The first hitch was the train- we planned to meet in the hotel bar (obviously, where else could we meet?) but, due to the ‘efficient’ service from Euston to Carlisle, Ollie arrived very late so that didn’t happen. So, I was forced to meet someone who I was going to spend 3 days in the car with just about 5 mins before we were due to set off. I needn’t have worried. After a short fight through the ‘rush hour’ (nothing in Carlisle ever feels like it’s ‘rushing’ anywhere!), we got out of town and onto the M6, which took us on a short drive to Scotland (yes Ollie, it’s 6 miles from Carlisle!). We drove through the Lowlands to Glasgow, where we delivered a couple of CUE1 devices to people who had requested an in-person delivery. Everyone we saw was just as happy to see us as we were to meet them. It’s a marvellous job, doing this for people; it always seems to have a positive effect when people realise that I am also a PwP (Person with Parkinson’s) and can talk to them with the knowledge that living with the condition gives you. Glasgow wasn’t too bad- we then went a bit further and stayed in Falkirk, ready for the next day’s delivery.

CUE1 on the road

Day #2 was the longest, wettest drive I’ve done in quite a while- Falkirk to Peterhead (or PEETA HEED as my Scottish friends call it). We didn’t realise at the time that the day after we’d been there, the whole area was flooded! Anyhow, another CUE1 delivered and another happy person left in Peterhead. It never ceases to amaze me what an effect something so small can have on someone. After seeing someone who was a little unsteady become more stable and able to walk better, it really does make my day. I am certain this applies to all of us in the Community Support team. You very often make our day with the demonstration that the CUE1 can work. We travelled back to Aberdeen, and stayed in a lovely hotel on the outskirts.

Next day, we had to drive through a beautiful part of the world on a forest road to reach Banchory. After delivering the CUE1, we were then on our last delivery- to Edinburgh, after which we could look forward to our journey home, with me driving back to Carlisle whilst Ollie caught the train to ‘The South’. This was probably the most picturesque of drives home that we had- my satnav (thanks Volvo) took us across the Tay Bridge in Dundee, and eventually across the impressive Queensferry Crossing near Edinburgh (the actual Forth Road Bridge isn’t used so much anymore). We found our way around the streets of Edinburgh (I would at this point like to thank the person who invented Sat Nav- you are awesome!), before finding our last delivery. This was when I realised why we had been paired together for this trip. One of Ollie’s attributes is his grasp of languages. The new CUE1 user was a Spanish speaker- Ollie only speaks fluent Spanish, doesn’t he? I thought it was a very nice touch to be able to converse with people in their native language- Good Man Ollie- though even more amazing was the fact that I think I actually understood what the were talking about (could be a remnant of doing my Basic firefighter course with six firefighters from Gibraltar). It always amazes me what you pick up subliminally from all over the place; the human brain is a wonderful thing (most of the time, anyway!).

With our last CUE1 delivered, and more people now with something that can help them live better with Parkinson’s, we braved the rush hour traffic to drop Ollie at Waverley Street station. If you don’t know Edinburgh very well, it’s right in the centre, so the traffic can only be described as ‘busy’, which probably explains how I managed to get onto the wrong road out of Edinburgh and spent a lovely time in the dark Scottish countryside, on a road that took me over the top of the moors and deposited me in Moffat. After finding my way to the M74, I was home in 45 mins.

NOTE TO SELF- I must go back and drive along that road in the daylight- it was very twisty and windy, with some hills along the way?

Anyway, if you are in any doubt that Team Charco do indeed go the extra mile, I hope I may have given you an insight into the work that goes on behind the scenes to get the CUE1 out to those who will benefit from it.

Gracias amigos!

Thank you to Dave for his latest blog; to sign up to our waiting list, please click here.

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Why is it that…

Dave doing outdoor exercise

Every time I feel like I’m getting that little bit fitter, something related to Parkinson’s always manages to bring me back down to Earth…

As some of you may know, I am a keen runner, and a real believer in “Exercise, Exercise, Exercise” to keep Mr. P under control. It really does work! I am the proof, should you need any. I also feel, however, that it is important to realise what your limits are- if in any doubt about starting an exercise program please consult with your GP/Consultant/Parkinson’s Specialist nurse (if you have one). I am lucky; as a firefighter, I was always encouraged to stay fit. It gives you an added level of protection when, say, a building starts to collapse and you need to run for your life or be hit by a falling wall, but that is a tale I may tell some time in the future! Actually being able to “run for your life” may show that exercise is a lifesaver. 

I have found it easy to stay fit with Parkinson’s. I can only be amazed by those of you who, after a life of very little (or even no) exercise, embrace it fully once diagnosed with the condition. I think you are to be applauded- I have found it easier to stay fit than I found getting fit in the first place. I exercise (almost) every day in one form or another. I run, I play walking football, I go to a Live Well and Dance with Parkinson’s class, I practise Tai Chi, and I go to the gym. More recently, I have started training with Reach your Peak. This was after a chance meeting with Maria from RYP, in which we chatted about fitness in people with Parkinson’s, running with Parkinson’s, and my past conquests of 12 full marathons, many more half marathons, and more 10km races than I can remember! 

Anyhow, a result of this is that I am training with a “proper” marathon coach to tackle the London Marathon supporting Parkinson’s UK next April. Maria and Sally are hoping to use me as a case study to show how you can train to do whatever you want (within reason) despite having to drag Mr. P, kicking and screaming, along with you. I know running is not what most people would choose as their exercise of choice, but when I am out I feel a real ability to disconnect the Parkinson’s part and leave it behind for a while. It is the best feeling just being able to get out and run. I would encourage everyone to find something that does this for them; it doesn’t even have to be that physical (although research tells you that it should really), and it’s important to remember that we are not all able to do the same things to the same level. A guy I used to run with told me he was more impressed with those people who finish near the back of a race than those who win them. If you think about how much effort, grit, and pure determination it takes to finish your first 5km Parkrun, a lot of people wouldn’t even try. Fortunately (for me anyway), I am not one of them.

Dave running and marshalling

If any of you fancy it, Parkrun is on every Saturday at a park near you (in the UK). It starts at 9am, or 9:30am in Scotland- much more civilised in Scotland, I believe (sorry editor- is that too controversial?). There are even Parkruns all over the world, so you have no excuse to not do one. Did I mention they are all 5km, too (that’s 3.1 miles in old money)? For those of you who are no longer able to run such a distance, Parkrun is a volunteer-led organisation, so if you simply fancy getting out and meeting new people you can volunteer to act as a marshal; they will gladly accept any help you can give them. We all have our favourite exercise regimes, and as long as you are doing something, it’s always better than doing nothing. For some, simply walking to the shops can be a major achievement. Just think, even walking to the shops, buying something, and carrying it back, is actually an increase in exercise- I bet you’ve never thought about it like that before!

I have totally gone off on a bit of a tangent- I was originally going to tell you about how Parkinson’s has derailed my training, but just by doing this blog I feel I have sorted it out. I had a particularly stiff lower back earlier; it was agony just getting up to stand. I did something to it at Walking Football earlier in the week. Anyway, it feels much better after a good stretch! I need to stretch every morning; my symptoms include particularly stiff lower back muscles, often becoming worse just before I am due medication. I suppose it’s my body telling me it needs more dopamine; after I give it more, it always calms down (for around 4-5 hrs) before yelling for more once again. Isn’t your body brilliant? It really is a magnificent piece of equipment; learn to look after it, and it will look after you and let you do almost anything you want. 

That’s me exhausted for now… I’ll be back!

PS – Limits? How do you know where they are unless you step over them once in a while?

Peace out,

David L

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The difficult sixth Blog…

Dave having a day on a boat

Why do we always make things difficult?

I know why Parkinson’s is such a difficult thing to live with, but why do we always make it harder for ourselves? Part of the reason why I am so vocal and encourage others to raise awareness of the condition is to try and educate the public about what we have to deal with every day. To this end, I’ll walk you through a day in my life.

At 6:45am, my alarm goes off. As I have had a decent night’s sleep, I feel (fairly) awake, so I get my meds for the day… First thing in the morning, almost, as soon as I’ve managed to fight my way out of bed (memory foam mattresses are comfortable, but imagine lying on a marshmallow that stops you moving). I check the time, as I have to try and time when I take them so they last until the next lot (at 10:30-11:00ish). So that’s 7 pills so far, and I’m not even dressed yet! My lovely wife always brings me coffee, which, in my opinion, is much better than tea! Controversial?

So, after my meds start to work, I shower, dress, and sometimes make it downstairs to breakfast with Mrs L, hopefully before she goes to work- if I need the car, I have to take her to work, which means I am up earlier and everything moves around to fit in. 

Then, let’s get to work – I work for one of, if not THE best, employers you could have… I work from home and can work flexibly, which is a very clever way to work, I think- definitely a way of getting your employees to be much more productive… Works for me anyway!

Then, more pills at 11am to keep me going until the next lot- herein lies the dilemma. I have walking football at 2pm, which finishes at 3pm… Do I take my afternoon meds early or late? It’s often a case of how I am feeling at the time. Doing lots of exercise can do some very weird and wonderful things to you- if you ask your consultant they will advise you on the drug regime you are on- but I am fortunate in that I can feel when my meds are wearing off, so I have a bit of flexibility in when I take them (always ask your consultant- never experiment with your medication!).

Anyway, back to the day in hand- it’s still only 3pm, and I’ve had 3 lots of meds (a grand total of 15 pills so far). Now, I’m not sure about you, but I don’t nap during the day… I feel that I don’t need it, but I understand that for some it’s a necessity. After walking football, it’s back to work for a couple of hours- then, as my wife is at the hairdresser’s, I will arrange to walk into town and we will get some tea (that’s ‘dinner’ for my southern friends- there’s a whole world of differences up here in the land of lakes and mountains… I might try and explain them at a later date).

I won’t advertise where we go but they recently stopped doing 2-for-1 pizzas before 5pm on a Friday, who could resist? I enjoy my pint of chocolate brownie marshmallow stout (have you guessed where we are yet?) with my mighty meaty pizza; chillies are a bit on the warm side, and I temporarily lose the feeling in my mouth (I’m burning!). At around 6pm, I take more pills (now at a total of 17- I’m slowing down!). The rest of the day is spent watching TV; it never ceases to amaze me how, despite having literally hundreds of channels, you never seem to be able to find anything you want to watch? We (well, when I say ‘we’, I mean  Mrs L) eventually decide on a programme about Jeffrey Dahmer (an American Serial Killer) which concerns me… Since when did serial killers demand such interest and have dramas made about them? (Note to self – Mrs L has been watching a few of these lately, should I be worried?)

We finish with Graham Norton and Gogglebox, a programme about people watching TV- pretty bizarre, if you think about it. Oh, and there goes my final dose of meds, bringing us to a total of 19 pills- and that’s EVERY DAY!

The day I’ve described is normal to me- I am very active, and exercise is my alternative therapy of choice. I’ll leave it at that for now… I’m on holiday soon; North of Dundee in a log cabin for a week with no mobile signal (that’s my excuse, anyway). 

Stay strong and keep moving 

Dave L

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A New Year’s message from Lucy and Floyd :)

Dear All,

We hope you all had a great Christmas, and that you spent the day making memories with your friends and loved ones :). As we begin the next year, we wanted to share with you our hopes and aims for 2023, as well as some messages from our team members on what they want to achieve in the coming year.

In 2022, we were able to get to over thousand of CUE1s and deliver them to you. We have over 10,000 people on the waiting list, and so we will continue to focus on scaling up our production of the CUE1 for you. We launched in the UK in December 2021 and have been going through the waiting list ever since, and we hope to get a CUE1 to each and every one of you in the UK by the middle of 2023. We are also focusing on gaining regulatory approval in other countries, including but not limited to the USA. We understand the wait has been long, and we will make sure to do our very best to get them to you as soon as possible. We will, of course, be keeping you up to date with our progress. 

As we grow, we want to assure you that our dedication to close, personal support will stand unwavering. Individual care is the most important part of Charco. We will endeavour to remain as an accessible team that you can come to whenever you would like, and this vision will continue to be our greatest aim in 2023. 

You also asked us about the potential of the CUE1 helping with other conditions such as PSP, MSA, and more. In 2023, we will expand our studies into other conditions, as we would love to bring more smiles to you all. We will ensure to keep you updated with all of our upcoming studies. 

It has been fantastic for us to learn more from the current CUE1 users. You have shared great insights with us, and helped us to learn more about Parkinson’s and the various subcategories of Parkinson’s. In 2023, we will be running more studies and will share the outcomes with you all. Please keep on sharing your thoughts about the CUE1 and how it helped you, and how we can improve it in the future.

Team Charco has been absolutely amazing throughout this year, always keeping the community in their thoughts, and we would love to share some of their hopes for the next year here :). 

“The past year has been really busy, but the support of the community has kept me going throughout the seasons. I can’t wait to get to know more people in the community, and get to visit them wherever they are; I hope that 2023 is the year that I get to visit you.” -Oliver Walden

“I am excited to help in the clinical research as Charco delves deeper into other Parkinsonian conditions, and looking forward to meeting more members of the community. I cannot wait to see all that we achieve as we expand across the world, so that we can truly bring back more smiles.” -Asra Shah

“I hope that in 2023 we will be able to have a positive impact on the lives of many more people. As I start my new role in the community support team, I hope to lift the team’s spirits so we can give care and support to the growing community of CUE1 users with the positivity they deserve. I will do my best to learn fast and integrate myself into the team. May Team Charco find the inner strength to take on challenges and achieve our goals for 2023!” -Mario Park

“It’s so exciting to see how much Charco has grown since I first joined as a placement student. This past year was challenging, but I’m so happy to have had the privilege to pack and send out so many devices to the community. I hope this year we will be able to bring smiles all around the world, and that I can learn lots more along the way.” -Hassaan-Ul Huda

“In the three months since I joined Charco, I have been amazed at the efficacy of the CUE1. I’ve realised that there are so many people living with Parkinson’s in my own life; my aunt, my brother’s best friend, and my best friend’s professor, and as such I’ve come to feel a great motivation for Charco’s mission. As an R&D engineer for Charco, I’m committed to improving the CUE1 and making it better quality, developing brand new, highly efficient devices, and providing these improvements to you as soon as possible.” – Keith Park

Thank you for being with us throughout the past year. Your support and kindness has kept us going, and as we enter 2023, we can’t wait to meet even more of you in person, and to get to know you better. Happy New Year:)

With much love,

Lucy and Floyd

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Dave’s blog: Christmas is Coming…

Dave as Father Christmas

I bet that headline got you going! Christmas is always such an emotive time. You’ll be pleased to know, though, that I’m not going anywhere near it at this time. I’m actually not allowed to. My wife’s birthday is exactly 4 weeks from Christmas, so I don’t ever buy a single present until my wife’s birthday has been properly celebrated.

So, have you ever thought about how much the little things change when you are diagnosed with Parkinson’s? There are, of course, negative impacts on your life and lifestyle. I have friends who have had to move house to somewhere on one level (but usually with significantly less storage, I have found). Some have even moved closer to their children; ours live a long way away, Lincoln and London. Sometimes it’s nice, sometimes it’s a bit of a challenge, but that is only geography. If I want to see them (and this is really cool) I can just do a WhatsApp video call- absolutely amazing if you ask me- or ‘Zoom’ them? 

Guess it’s fine if you can use the technology, although I know my more elderly, less tech-orientated friends just wouldn’t have a clue. I think, though, if you want to make life easier, you should learn how to interact with the world of technology. I have found that there are also some ‘benefits’ to being a PwP, although I know I would rather have my old life back as a firefighter; but that, sadly, will never happen. We must concentrate on the present instead. We must be mindful and live in the moment. The past is gone, and you can’t change it. The future is something that hasn’t even happened yet. We should all be concentrating on things we can actually change. Glad I got that off my chest; it is something I live by, and it has never let me down. 

Anyway, the first positive thing is being able to get a Blue Badge (if you are eligible you should apply). When I am going through a “wobbly” stage, it is a life saver, and means that you can often park right in the centre of town- that is, unless some thoughtful person has parked in the “Disabled” parking bay, because it’s near the entrance and it’s raining! I personally think these people shouldn’t be fined; they should be given community service to spend a day with a disabled person, in order to see what it’s like. (Sorry, editor- controversial?). 

Another positive is the help I get to get to entertainment venues… Did you know, most Football League clubs give you a FREE Carer’s ticket for matches (if you get PIP at an enhanced level). You can also, very often, get a Carer’s ticket to look around English and Scottish Heritage properties. We used this when we were in Stirling recently; we only needed to buy one adult ticket and my wife got in for free. You can also ask for assistance when you go to an airport, due to your disability (and, yes, you are classed as “disabled”!)- the help is there if you wish to use it. You get through security quicker, and you don’t have to queue to get on the aeroplane. Next time you go on holiday, ask about it! My kids, when they were with us visiting Disneyland, used to call me the “Human Fast Pass” which, as long as you check in at Customer Services, allows you to “queue jump” on every ride. This is really good for the kids; but, you have to go once on every ride. When you’re on your 5th ride in a row, it can be a bit tedious (and make you feel slightly ill)!

So, as well as parking, airport assistance, football season ticket, castle visits, what else is there? There’s also Motability, a charity that helps to supply cars and electric wheelchairs to people who are on enhanced PIP; it pays for the lease, servicing, tyres, insurance, and everything in between. You keep the car for 3 years, so no MoT to pay, and then you simply hand it back and when you do, if you look after it, you get a Good Condition Bonus; they actually give you money back, which you can put towards a new car! How cool is that? If you don’t need a car, you can also use your PIP towards a powered scooter; I think they’ve got most things covered.

That’s it for now! I’m off to organise another Charco event (yes, it’s me!) so you can be kept informed and encouraged by a number of different experts, professionals, and inspirational PwP.

Keep on Moving!

David L.

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A MedTech company worth watching

Rory and Charco

Charco recently had the opportunity to visit Rory Cellan-Jones, once technology correspondent for the BBC, to deliver him his CUE1. We talked with him about his Parkinson’s, technology, and the CUE1, and his thoughts on our testing and the CUE1 itself. 

‘That was the first big indicator’

Rory, BBC journalist

“My wife kept saying, ‘Why are you dragging your right foot?’ That was the first big indicator.” Rory had first noticed a weakness down his right side when on holiday, finding that his right foot was dragging behind his left one. He began to notice other difficulties, such as typing and his hand shaking as he held a TV remote, and was eventually diagnosed with Parkinson’s. Rory is open about his struggle with coming to terms with the condition. “I had depression for the first year”, he tells us, “Though this eventually went away”. Like many diagnosed with Parkinson’s, the initial shock of the diagnosis can resonate for a long while, and issues such as depression can be all too common.

Part of his coming to terms with the condition came in conventional forms, such as exercise, something he has maintained to this day. He also found it greatly beneficial to talk to others with the condition, and to share experiences in a supportive environment. “A friend of mine asked if I could talk to someone who had Parkinson’s, so I met him, and we went to this pub a couple of times”. Sharing experiences and talking to others with Parkinson’s has clearly been helpful to Rory, as well as to those who he’s opened up to.

‘The next big thing’

BBC laptop

Having kept his ear to the technological ground for his 40 years in the BBC, it’s no surprise that Rory is up to date on all of the latest developments in the world of medical technology. This extends from the CUE1 to remote monitoring, something he was particularly interested in talking to us about. “There’s lots of work on wearables and remote monitoring… I think remote monitoring is the next big thing”. Used for everything from chemotherapy to urology, it’s clear that the possibilities of new technology are still exciting to Rory, even after 40 years of reporting on them. There are, he admits, still issues. “One of the problems is whether people will have enough time to deal with this enormous flow of data”. Still, the possibilities are endless, and Rory is someone with the experience to know what might become life changing.

One of the many devices of interest to Rory is the CUE1, which he has examined with characteristic thoroughness in his blog on our visit to him. “Their sheer energy showed that this was a medtech company worth watching”, he muses. During our visit, he asked several questions about the CUE1, showing the depth of his research. “So, the actual technique [vibrotactile stimulation and cueing] has been used for a long time?” he asks; we confirm that it has, and that these technologies have been utilised since the early 1800s, since the discoveries of Professor Jean-Martin Charcot. 

‘I’ll report back on my experience’

CUE1

All of our community are offered the chance to take part in our research, and many, including Rory, graciously agree to do so, helping us to further our research. The UPDRS (Universal Parkinson’s Disease Rating Scale), the gold standard for assessing Parkinson’s, is used by Charco to assess the effectiveness of the CUE1, and consists of several tests, designed to evaluate a person’s movement ability, tremor, and other symptoms. As we carried them out, Rory asked several questions, getting to know the details of the test, and showing his journalistic style that has been so useful in his many reports.

“So, this first test is to get a baseline of my symptoms?” Rory notes in his journalistic fashion; one test done to establish his symptoms, taking into account medication schedules and other possible factors, and then one done after 20 minutes of CUE1 usage to assess its immediate effect. “So, the higher the score, the more severe the symptoms are?” Rory then correctly deduces,  with the caveat that the test score is a result of all the symptoms combined, meaning with a low test score can still have particularly severe symptoms, though fewer symptoms overall.

Rory carries out the tests in good humour, and then sits down to discuss the results. His test score has improved by nine points, with anything over 3.25 considered clinically significant. “Is it possible that this is simply placebo?” he asks, his inquisitive nature still strong. We reply that it’s possible, but such a marked improvement is beyond what could be explained even by something as potentially powerful as the placebo effect. 

Rory gives us his further thoughts in his own blog; though sceptical of anything that has not been through large-scale trials producing peer-reviewed evidence of effectiveness, he was impressed by the energy and vision of the team, and has said that he “intend[s] to keep it buzzing away for a few weeks and… report back on [his] experience”. We look forward to hearing from Rory about his experience of the CUE1, and we’re grateful for him to take the time to discuss it so thoroughly and with such enthusiasm with us; though he has sadly had to retire from the BBC, his journalistic spirit is still intact, and as strong as ever.

Rory and Team Charco

Thank you to Rory for taking part in our tests, and for allowing us to interview him; you can read his own blog on our visit here. To find out more about the UPDRS assessment, please click here, and to see more information about the CUE1 and our tests, please see here.

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Dave’s blog: At last…

Dave in Kew Gardens

Being one of the newer members of Team Charco, I thought it would take a while to gel and be included in the group dynamic. I needn’t have worried so much. Everyone has a genuine wish to do the ‘right thing’. They all want to simply be good people, and I think they are definitely some of the nicest, friendliest individuals you could possibly wish to meet. That being said, what a month it’s been today! It’s officially been three months since I started… Kendal Calling music festival is just a distant memory. Parkinson’s hasn’t really managed to derail anything, but wasn’t it warm?

 I suffer, as I’m sure some of you do, with very stiff muscles and joints at times. It’s  particularly bad around the time I get up. My wife says I should perhaps go for a run first thing in the morning; my excuse is ‘my meds take time to kick in’. I used to get up really early and run four to five miles before getting ready for work and having breakfast. I feel those days are behind me, but there’s always progress. I now get up and do a quick twenty to twenty-five minutes of yoga to ease everything off (you know it makes sense). Whilst chatting to a physiotherapist, they told me that this stiffness is a symptom; in my mind, that means that it’s still possible to do something about it. All of this maintenance is all well and good, I find, until something changes…

We knew there was something afoot when we received two emails from the train operator (I won’t name them, just in case). One said our train home was not running because it would no longer stop at an undisclosed location. The second email said it was simply “cancelled”. No explanation except for the one we heard on the evening news. The lady from the train company, who  I called to try and book tickets on a different train, was adamant I would have to get a refund, and then buy new tickets which were £60 more expensive! I was having none of it, and despite the speech problems that Parkinson’s can sometimes throw into the mix (in my case especially when tired, nervous, anxious, or in any way stressed) I managed, after speaking to four different people, to get what I wanted: seat reservations! 

Well done, you may say. I thought so too, until I found myself balancing on my suitcase on the train down to London because the train had been double-booked, and the lady sitting in my seat wasn’t moving. I almost had to resort to my ultimate sanction – the Parkinson’s card. It tells those reading it that you have Parkinson’s and that you may look unsteady on your feet, slur your words, and even fall over. This may look, to those who don’t know about it, like you have had one too many free drinks in first class! We eventually got a seat (though only for forty-five minutes), before we had to change trains to get to London. The trip back wasn’t without drama either, despite previously making sure we had booked seats – they had still been double booked, and both had someone else sitting in them.

The weekend in London was as fabulous as always; we went to Kew Gardens and Hampton Court Food Festival, where we had Sunday lunch with both my son and daughter (‘London prices Dad’ emerged after I nearly went into shock after receiving the bill). We did, however, win the pub quiz on Sunday evening, so it wasn’t all that bad.

I went to see my consultant too. It was my first time post-COVID, making it the first time I’ve seen him in a hospital setting for at least two years, I think. As he told me, ‘if it’s not broken, why try and fix it’? I’m supposed to go every six months (because of my age), but as I exercise regularly we don’t often have any changes to make .

Well , that’s everything up to date – events are starting to be organised and set up for the next couple of months at least . 

I’ll see you around, catch you later….

Dave

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Dave’s blog: To Brum and back again

When we first ordered the tickets for the Commonwealth Games (over a year ago, during Covid – blame it on lockdown boredom) we thought it would be easy…

We entered the ballot for the opening ceremony, closing ceremony, and a whole host of sports. In the end, we got tickets for the Men’s Hockey Final. Yes, you heard me correctly: two tickets to the Men’s Hockey Final! Now, I don’t know how your Parkinson’s copes with crowds, but mine is definitely anti-social, and the tremor I get in my leg when stressed (or excited) is a running reminder of that. I must admit, I wasn’t looking forward to it. Also, just the week before (well, 2 days before), we managed to get tickets for the T20 Women’s cricket tournament at Edgbaston. 

My wife did mention the amount of driving involved, but it didn’t register. We set off on Sunday lunchtime, after having a bit of panic when we read online that you should book parking. Did I mention that our granddaughter, from Lincoln, was spending some of her holiday with us? Well, that was a minor complication. Edgbaston is 202 miles from my house; although it doesn’t sound too far, it feels it, especially as when you have Parkinson’s you tend to avoid long journeys, due to the endless stiffness that ensues. We managed to find a parking space down a residential street and we made it, watching Australia win against India. I would recommend the T20; it gets very tense towards the end, and you don’t have to sit around for too long! We then drove 100 miles to Lincoln, delivered our granddaughter, and stayed overnight, before setting off (another 100 miles trip) to University of Birmingham – all the while getting baked by 26°C sunshine without a breath of wind!

At the hockey match, Australia beat India as well; this time it was 7-0, which I suppose could be described as ‘a good win’ wherever you are from! The crowd started to wake up Mr. P, and I felt my leg starting to wobble but, being a long-time diagnosed person and using my CUE1, I managed every time to put it back to sleep. We managed, after another 200 miler, to get home by 8pm.

I drove down there originally and drove from Lincoln to Birmingham without any problems. Driving is one of those things you shouldn’t take a chance with. You are either still fit to drive, or (unfortunately) you’re not. You have to, by law, notify the DVLA of illnesses that may affect your ability to drive. I did it straight away, almost 18 years ago. They will ask your consultant for a report into whether they consider you to be a danger to others whilst driving. I have a 3yr review where I send a form supplied by the DVLA, usually, to the Parkinson’s Specialist Nurse who sorts it out for me. Take time to meet and get to know your PDSN – mine has been the only constant medical person in a sea of change. She has been there for the past 14 years (after we moved back to Carlisle).

Well, that’s my weekend just gone… Two Gold medal finals, hot sunshine, expensive ice cream, and a monster six hundred mile round trip… I think we’ll stay at home next weekend!

Ciao for now, 

David

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The Davis Phinney Foundation: a catalyst for positive change

We spoke to the team at the Davis Phinney Foundation. Rich Cook, Director of Development, and John Dean, a member of the scientific advisory board, discuss their work, what they would like to see implemented for the Parkinson’s community in the USA, and their hopes for the future.

Rich and John

There’s more than one approach

“When very visible public figures like Muhammad Ali, Michael J. Fox, and Davis Phinney come forward and tell their story, it creates more visibility and awareness”. For Rich and John, this awareness is key to their work. Started in 2004 by cyclist and Olympic Bronze medallist Davis Phinney, the Foundation has grown to become one of the foremost Parkinson’s foundations in the United States.

Rich and John both came into contact with the foundation through other roles. Rich had previously worked with other non-profit organisations, and got to know Davis Phinney when they collaborated on a project that aimed to show those with Parkinson’s the benefits of skiing. John began his collaboration with the Foundation in 2008 when helping with fundraising, and has gone on to serve in a number of roles, including providing insights and advice on emerging technologies such as the CUE1. Both agree that the organisation’s approach to Parkinson’s – looking at ways to improve the lives of the community immediately, instead of waiting for a cure – was a big part of what attracted them. “Not that trying to find a cure is the wrong approach”, John assures us, “it’s just that it’s not the only approach. There are a a lot of thing you can do right now to improve your quality of life and that’s where the Foundation’s mission of ‘helping those living with Parkinson’s to live well today’ really comes to the fore”.

There’s no way I’m sitting still

Exercise was a large part of the foundation’s initial focus. Being a professional athlete, Davis Phinney found it hard to sit still and rest, despite this being the advice of his doctors. “They didn’t have an understanding of how beneficial exercise was at that time”, Rich says. “Davis thought, ‘there’s no way I’m sitting still’, and so he stayed active, and began the foundation as a way to fund research into the benefits of exercise for those with Parkinson’s”.

Davis Phinney

Since then, the Foundation has grown rapidly. “We have over a million users of our resources every year, whether that’s in digital or print media, as well as partaking in our education and community programs and interacting with the foundation”. This impressive growth has helped innumerable people in the United States and around the world, and has heartily contributed to the growing body of research into Parkinson’s. The foundation has also served to raise awareness of the condition across the nation and through partnerships in Canada.

Nevertheless, there is still much work to be done to help those with Parkinson’s in the United States. “We listen to our community, and have found that in rural areas, there is simply less access to neurologists, specialists, and other crucial services”, Rich tells us. “As we come out of the COVID pandemic, we find that people are more and more isolated, and we need to find ways to reverse this”. The healthcare system in the USA is often a postcode lottery for the Parkinson’s community, with those in poorer and more rural areas disproportionately lacking access.

Connecting with these communities is crucial for the Davis Phinney Foundation, ensuring that no one has to go without crucial information or treatment. Their online outreach has numerous resources available. Nevertheless, Rich and John are clear that “‘boots on the ground’, actually getting out to these communities, talking to them, that’s the most important thing”.

Rich and John are also excited about  research  in Parkinson’s, including new developments and devices . “Medication and things like Deep Brain Stimulation are important, but having access to all of these new treatments helps to personalise someone’s care”, John notes. “I’ve seen devices that use non-invasive stimulation, external stimulation. I think these treatments are going to be very valuable in the future”.

Striving to build capacity

The Foundation is always looking to the future to help the Parkinson’s community. Their work hinges upon engagement with the communities across the United States; no group is too small or too large for the foundation to work with. “We’re striving to build capacity, […] so that these local organisations, in cities and towns across the country and around the world, have a formula to follow”, John tells us. “They also know that they have an organisation like the Davis Phinney Foundation behind them, helping them with anything, whether it be with advocacy issues, education issues, or structural issues such as accessing healthcare resources”.

Davis Phinney Conference

The Davis Phinney Foundation has planned several events across the USA in the next few years, with the aim of “connecting more with the community at large. We’ll be bringing together our partners like Charco and others from the industry, in order to meet the groups that make up our community. We want to push out good information about how you can live well today, and how you can improve your quality of life”. In addition to the Foundation’s flagship Victory Summits, hosted throughout North America since its founding, they are rolling out ‘Healthy Communities’ initiatives to provide underserved advocates with the tools for helping their communities to live well, with programs scheduled into 2024. These events are sure to bring valuable resources, support, and information to groups across the United States, helping to improve the lives of those with Parkinson’s.

Getting the tools to people who need them

In September 2022, Charco attended the Davis Phinney’s Leadership conference. We met with leaders from various Parkinson’s community groups, healthcare professionals, and industry leaders. We got to learn more about how we can collaborate together to bring more smiles to people with Parkinson’s.

Charco and Davis Phinney

As Charco and the Davis Phinney Foundation continue to work together to improve the quality of life for those in the Parkinson’s community, we’re excited to see what the future holds for the Foundation. As they work toward raising awareness and strengthening their ties with local groups around the United States, Rich and John’s optimism is infectious. It’s clear that the  determination of those in the Foundation to help those with the condition, alongside their  enormous respect for local groups, has helped grow the foundation from one Olympic athlete to one of the foremost Parkinson’s organisations in North America.

“The Davis Phinney Foundation has been focusing on ways to improve how people live with Parkinson’s since their founding almost 2 decades ago. Charco Neurotech’s non-invasive and non-pharmacological approach capitalises upon recent research advances in focused vibrotactile stimulation to provide immediate but lasting benefits.  This new partnership between the two organisations will help get these tools to the people who need them in the US as well as Canada (and beyond). This fits directly within the Davis Phinney Foundation’s primary mission of helping people living with Parkinson’s to live well today. I couldn’t be happier to see these two organisations working together.” – John Dean, MA, CCC-SLP

Thank you to Rich and John for talking to us. Please click here to find out more about the Davis Phinney Foundation, and please click here to download their booklet, ‘Every Victory Counts’.

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An update from Charco, October 2022

Hi everyone. :) We hope that you have all been well. It’s an exciting time at Charco, with many major developments taking place that we wanted to share with you all :).

Offering more CUE1s

We have recently received one thousand CUE1s, and have been busy sending out offers to all those at the top of our waiting list! We are a small team, working hard to deliver you your CUE1, and appreciate all of your patience and support as we scale up and deliver more CUE1’s than ever before. If you signed up in May 2021 or before, then we have already sent you your offer; please check your spam to ensure that you didn’t miss it, as we want to bring you your CUE1 as quickly as possible. :)

Checking your position

We have now released our waiting list checker! Simply type in your email address, and we will send you an email, confirming when you signed up to the CUE1 waiting list. By signing up to the waiting list, you are simply expressing your interest in the CUE1, and this does not mean you are required to make a purchase. There are no upfront fees for joining the waiting list, and we want you to feel entirely comfortable in purchasing your CUE1, with total peace of mind. We also offer a guaranteed three month return period for a full refund when purchasing a CUE1. :) We hope that this will give you greater clarity as we scale up and work toward bringing you your CUE1. To check when you signed up, please click this link.

Sending out CUE1s

Many members of our community have asked where we can send the CUE1’s, and we wanted to let you all know where we are regulated to send the CUE1’s :). Currently, we are regulated with the CE mark, which allows us to send CUE1’s to several nations in the European union. We do, however, have to ensure that all of our material, such as the instruction booklet, can be offered in the official language of the country that we are sending to, which we currently offer in English only. We will continue to work to get regulatory approval in all other countries, and will let you know as soon as we are able to send you your CUE1, wherever you are :).

CUE App update

There are now many members of the Charco community using the CUE App to personalise their device, track their symptoms, receive medication reminders and play fun games. Since launching the app, we have been receiving fantastic feedback from the community and we would like to thank everyone for their continued support. We encourage you to get in touch with any feedback or suggestions you may have. :)
We listen to all of the feedback we receive and factor it into the development of the app to improve quality of life for people with Parkinson’s, and we would like to share that within the next week, we will be releasing a new version of the CUE App which will fix the issues which have been reported to us, and a selection of new features. We will let you know on our social media channels when this update goes live.

Taking part in our research

One of our favourite parts of delivering CUE1s are the hand deliveries, as we get to meet our community and see smiles brought back in person. As part of this, we also offer the possibility of being involved in our research, by taking part in short assessments to see the effects of the CUE1. Many people opt in for this, and we are incredibly grateful to everyone who helps us further understand the effectiveness of the tactile stimulation. We would like to let people know that, as we have a limited number of testers, there may be a wait for your hand delivery should you choose this option, and we would like to thank you for your patience as we find a time that best suits everyone for us to come and visit :).

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Dave’s blog: What a weekend that was!

In his second blog, Dave Little tells us about his experience as a festival goer, and gives us his tips for having the best time possible.

Well, I survived!  Four nights in a tent at a music festival in the Lake District- what could be difficult? When you are a person with Parkinson’s, there are some unique challenges that can present themselves… Shall I tell you about them?

Air beds are the standard piece of camping equipment everyone seems to use. You pump them full of air, and they are fairly comfortable for a period of time… then they leak! The only way I can describe it is that it is like being eaten by a caterpillar. Every morning is the same: it goes really soft, and you end up being drawn into the middle of the bed. Not comfortable. It also makes it ‘interesting’ if, like me, you wake up in the middle of the night and need the toilet…

Toilets? Now there’s something you should never have to experience. ‘Festival toilets’ are probably the most toxic environment known to man. Perhaps luckily, my Parkinson’s symptoms include a poor sense of smell, which can be a blessing! Everything else can cause discomfort and minor niggles, but all in all we had a great experience. The CUE1 I was wearing lasted a whopping 3 days before it needed a charge; luckily I was able to charge it up in the access camping tent, which saved my portable battery packs for use by everyone else. I used it when I felt I needed it to keep me moving, among the masses of people present at the festival. 

Just a quick tip… whenever you book tickets for anything, don’t forget to look if there are any concessions for ‘ambulant disabled’ people, as well as ‘disabled’. It can save you a fair bit of cash. My wife always gets a FREE PA ticket for the festival and we get the Access Camping area to use (you can park your car in the same place as your tent)! You also get access to the cleanest toilets on the site and a seat for you and your PA on the viewing platform at the back, with what are probably the best views.

The moral of this story, I suppose, is ‘don’t believe you can’t still do things you enjoy’ . Parkinsons doesn’t mean you have to stop enjoying the things you love doing . Do them anyway, even if you find you need to adjust things slightly. Nothing needs to be undoable.

Tickets for next year’s festival go on sale tomorrow… are we going?

What do you think?

P.S. – We managed to see Stereophonics, Bastille, Supergrass, Hacienda Classical, The Kooks, The Wombats, Sophie Ellis-Bextor, Heather Small (lead singer from M-People), Gabrielle, Tom Grennan, Scouting for Girls, Bill Bailey…and Craig David, and The Vaccines… can’t wait until next year! Are you coming?

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Dave’s blog: It’s going to get noisy!

David Little

We hear from David Little, a member of Team Charco and a CUE1 user, in the first of his series of blogs.

Hi all! This is my first blog that will aim to help dispel the myths around Parkinson’s (such as it’s an ‘old’ person’s condition!), raise awareness of the interesting things that happen to you (such as ‘why can’t I walk on parquet flooring?’), and many other questions that I ask myself and are asked by others (such as ‘can you still drive?’).

Why I’m writing this blog

As a person with Parkinson’s, I am often surprised by the low level of awareness among the public about the condition. Sometimes people can be incredibly kind and understanding, whilst others can be less so. The looks I can get when parking in a supermarket car park disabled space can be quite intimidating at times (that is, if I were a shy  person, which I can assure you I am not). I have even been asked what my disability was, though when I tried to set off walking whilst discussing the matter with the gentleman involved, I didn’t think that staggering and almost toppling over was the most elegant way to show him that Parkinson’s is essentially a movement disorder, and that your ability to start movements can be affected. It can make you slow and extremely stiff, especially first thing in the morning. There is, however, always something you can do to make life that much easier, and the effects are amazing. I know people will tell you this constantly, but exercise works! Exercise is like medicine. If you take it properly, it will have a significant effect. End of sermon. 

You never know what’s around the corner

Well, just a short one today; this is the first of what we hope will be a regular feature, in which I will try to impress on people exactly how it feels to have Parkinson’s (in my case after I was diagnosed at 39 years old! I know,  pretty bad, huh?). We will chat about exercise, and I will tell you about the sports I have found that make a difference to my condition.

Also, as a final reason for sticking with me, something amazing happened 8 weeks ago today; I started a new job. I gave up my job with a Carer Support charity and came to work with Team Charco (I may mention quite a bit, they are an awesome bunch, led by the human dynamo who is also the CEO!). So, I better sign off now before I drop myself in it.

Stay safe, stay flexible and stay strong – you never know what’s around the corner.

Look out for the next instalment of Dave’s blog, coming soon.

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A voice for the Parkinson’s community

We met Jiwoon Yang, legendary voice actor and South Korean icon, to hear about his experiences with Parkinson’s, becoming an advocate, and his hopes for better Parkinson’s awareness in South Korea.

I would like to bring people together

Jiwoon’s career has spanned 50 years, and has included several iconic voice roles, from James Bond, to Vito Corleone, to Indiana Jones. In person, however, he is far more approachable than these characters would suggest. We sat down with him and his wife, Sook-Kyung Yoon, to talk about their experience with Parkinson’s.

The first time that they noticed something was different was during a saxophone lesson that the couple took together. Sook-Kyung was clearly proud of her husband’s musical talent; ‘the teacher was always complimenting’ Jiwoon’s saxophone playing.

This changed, however, and Jiwoon found it increasingly difficult to produce the necessary volume on the saxophone, as well as finding it difficult to press the keys. This progressed, and eventually Jiwoon noticed other symptoms, such as difficulty buttoning up his shirt and using chopsticks. This led Jiwoon to have a check-up with his doctor in 2014. He was initially told he did not have Parkinson’s, but after a year of tests and scans, he was finally diagnosed in 2015.

“I was really intimidated,” Jiwoon says. Finding out that Parkinson’s was incurable became a “burden on [his] mind”. Jiwoon’s mental health suffered, both as a result of his diagnosis and the challenges which he faced living with Parkinson’s; “everything which included detailed hand movements in everyday life became interrupted… I was intimidated by being in public and wanted to avoid having to see people, and I got depressed from time to time.”

Jiwoon, however, was determined not to let the symptoms of Parkinson’s control him; “I decided that if this could not be cured, I would like to bring people together.” Since then, he tells us, he has “been able to endure and overcome” many of these challenges, through “exercising, reading the Bible, and listening to K-pop with my wife”.

For 50 years, I didn’t get tired and enjoyed myself

For Jiwoon, the biggest challenge came when he found that he could no longer continue in his beloved profession as one of South Korea’s most famous voice actors. It was Sook-Kyung who, having seen the difficulties which he faced, first suggested that he retire; “In my opinion, my husband is the best voice actor in Korea… in 2017, when I heard his voice, I felt my that husband’s voice wasn’t what it had once been.” Issues such as shaking the script during recordings and the deteriorating quality of his voice began to affect Jiwoon, and eventually, with a heavy heart, he decided to retire. 

Of his career, Jiwoon recalls that “50 years really passed like a dream. For 50 years, I didn’t get tired and enjoyed myself. I always enjoyed myself.” Sook-kyung nods with a smile. “He was always the top.”

This decision did not come lightly for him. “I understand my wife’s feelings, but on the other hand, it was hard for me to come to terms with it”, Jiwoon says, noting that “If I were to record an hour-long broadcast, I finished it in an hour and five minutes. Recording without any bloopers is a habit I kept all my life.” Jiwoon was the top voice actor and narrator for decades in South Korea, with the nation hearing his voice throughout many famous shows and films. Retiring from such a prominent position was difficult for Jiwoon. His fans were similarly upset upon hearing the news of his retirement, as Jiwoon had been the voice of some of their best loved characters.

Jiwoon’s last day of recording was an emotional time for him. “As I read the last manuscript, I started to think, “I won’t be able to sit in front of this microphone again,” and it was getting me all worked up. When I completed the last script, and I came out, the production team clapped and said, ‘You did a great job’. They hugged me, and gave me an appreciation plaque and flowers. Oh, I can’t express it. I cried a lot.” 

Having to give up his cherished role as South Korea’s premier voice actor due to Parkinson’s was inexpressibly difficult for Jiwoon. “It made me angry to think, ‘I’m kneeling in the end because of Parkinson’s’, and it hurt my pride.” With the support of Sook-Kyung, he made the transition to retired life, leaving behind a glowing cinematic legacy that has touched the lives of each and every South Korean.

The joy and vitality are indescribable

Since retiring from voice acting, Jiwoon has become determined to raise awareness of Parkinson’s in South Korea. In an ageing society such as South Korea, Parkinson’s is a rapidly growing condition. “In Korea, there are 120,000 people who are officially registered with the Parkinson’s association”, he tells us, “but it’s quite likely that there are actually more than that.” Many people likely live with Parkinson’s without realising it, simply due to a lack of awareness. “When people get older, they just think, ‘Oh, it’s because I’m old, I guess my walking is getting worse’.” 

There are several measures that Jiwoon and Sook-kyung would like to see implemented in South Korea. Some are as basic as raising awareness; as Jiwoon sagely points out, “ If Parkinson’s is a well-known disease nationwide, people can go to the hospital if they feel a little stiff. If they don’t know, they may not be able to get a diagnosis, even if they’re uncomfortable.” This would have the double effect of increasing quality of life both for those who are aware they have Parkinson’s and those who don’t, as increasing numbers would bring about the necessity of greater access to support and treatments.

This is the second issue that Jiwoon raises: “There aren’t many programs that specifically organise and provide professional help for people with Parkinson’s, whilst those that are there are not widely shared with the Parkinson’s community.” This lack of support can make living with Parkinson’s comparatively more difficult, and Jiwoon and Sook-Kyung are dedicated to improving this.

He is also highly aware of the effect of Parkinson’s on mental health, and as such is pushing for more than simply access to reading materials. “It is natural to provide professional knowledge. The problem is that most patients are not motivated to look into and read professional knowledge and information when it comes out.” To Jiwoon, written material is not enough to help people feel hopeful when it comes to Parkinson’s treatment. “Even if someone tells you that you can find a pot of gold, you won’t believe it until you can see it, and that’s the same with treatments. However, if you experience the benefits of the treatment yourself, the joy and vitality are indescribable.” 

This question of accessibility to innovative treatments, and giving people with Parkinson’s the opportunity to actually experience them, is close to Jiwoon’s heart. His dedication to greater inclusivity, seeing people with Parkinson’s being more actively involved during the study and development of these treatments, is something that will continue to be central to Jiwoon’s activism.

Where is the flower that blooms without shaking?

Jiwoon has had a tough time adjusting to life with Parkinson’s, but with the support of Sook-kyung, he is trying to use his experience to help others, enacting positive changes. From awareness of Parkinson’s, to increased support and access to innovative treatments, the couple have several goals that they would like to see become reality in South Korea, and with his status as one of South Korea’s most recognisable, respected and beloved voice actors, his high profile stance on Parkinson’s is sure to yield positive results.

In a talk for the 2017 KBS Radio Acting Awards, Jiwoon shared a poem by Do Jung-hwan, entitled ‘Flowers that bloom when shaken’. He tells the audience that he relates to this poem, and that “it’s up to myself to figure out how to live with Parkinson’s well. I’ll do my best.” This optimism and determination is characteristic of Jiwoon; his parting words to us are “I will work hard to overcome Parkinson’s; I hope to see you all again on screen.”

Where is the flower that blooms without shaking?
Any of the beautiful flowers of this world
all bloom while being shaken
They shake on stems that grow upright
Where is the love that goes without shaking?

Where is the flower that blooms without being soaked?
Any of the shining flowers of this world
bloom as they are soaked
Soaked by wind and rain, petals bloom warmly
Where is the life that goes without being soaked?

We wanted to bring back a smile to Jiwoon’s face, by giving him an opportunity to get back what he had missed the most; sitting in front of a microphone and using his voice to brighten up people’s lives. His skill, passion, and dedication to his profession were evident during our interview, and we asked him if he wanted to collaborate with Charco and help in building our community by becoming the voice narrating our videos for Charco Korea. He graciously agreed to help us, and we went to a voice recording studio, where he showed us his immense talent with great satisfaction. Despite his Parkinson’s, his voice was as special as ever, and throughout the recording we could see the biggest smiles from him and his wife. We look forward to working more with Jiwoon in the future, as he uses his talent to bring smiles back to people with Parkinson’s across South Korea and the world.

Thank you to Jiwoon and Sook-Kyung for doing this interview. To watch our video interview, please click here.

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Interview with Professor James Kilner on the science behind Parkinson’s

In this exclusive interview, Charco Neurotech spoke to Professor James Kilner of the Human Motor Neuroscience department at Queen’s Square, University College of London, about the theoretical framework of Active Inference. Professor Kilner explains how this model can be applied to the symptoms of Parkinson’s and describes the latest scientific research investigating and explaining the mechanism of action of sensorimotor neuromodulation therapies like focussed vibrotactile stimulation.

Charco Neurotech, a UK-based medical device company, are combining this high frequency vibrotactile stimulation with cueing, in order to alleviate motor symptoms of Parkinson’s. The result of this is the CUE1, a novel, non-invasive medical device that is currently at various stages of clinical trials worldwide, with a full-scale randomised control trial in the planning phase. These aim to validate earlier findings and further develop the scientific and clinical knowledge of non-invasive neuromodulation therapies. In addition, a new project funded by Innovate UK will see Charco partner with Queen Mary University of London to learn more about the CUE1 in a clinical setting.

Many thanks to Professor Kilner for this interview. You can watch the full video below, or to find out more about the science behind the CUE1, please click here.

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The importance of shared experiences, with Kate McClintock

We met with Kate McClintock, an advocate for awareness of Young Onset Parkinson’s, to discuss her experiences.

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The inspiring women of our community

To celebrate International Women’s Day 2022, Team Charco has talked to just a few of the truly inspiring women in our community, to find out more about them, what they consider to be their biggest success, and to show everyone why we find them so inspirational. We hope you enjoy their stories :).

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Painting the beauty of nature, with Trevor Richardson

We met with Trevor Richardson, an artist and long-time supporter of Charco, about his Parkinson’s, paintings and charity work, and his reaction to the CUE1.

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A CUE1 Beta-Testing Diary: Week Two

We hear more of our tester’s unique take on her experiences using the CUE1, during her second week of beta-testing.

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Countdown to Launch: Oliver’s Diary

One of our elves at Charco brings you behind the scenes, to share with you what happened during the official launch of the CUE1! We hope you enjoy Ollie’s diary :).

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The Power of Poetry, with Jennifer Ormond

We met with Jenny Ormond to discuss her new booklet of poetry, Welcome To My World, based on her experiences with Parkinson’s.

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Sophie Wardle discusses Art, Community, and Preston Bus Station

We met with Sophie Wardle, who told us how she uses art to explore her Parkinson’s and herself, and how she’s become engaged with the community as a result.

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Social Media and Finding Your Community

We met with Emma Green to find out how she uses social media to find her place in the Parkinson’s community.

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A Journey of Growth: Emaan’s Story

We hear from Emaan, Team Charco’s Science Communicator, on how her perspective has changed during her journey with us.

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A CUE1 Beta-Testing Diary: Week One

One of our beta-testers of the CUE1 device tells us about their first week receiving and using the CUE1.

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From Mugs to Medication: Fundraising for Si Buko Uganda

We learn more about Parkinson’s Si Buko Uganda, one of the charities for which we held a fundraiser earlier this year.

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How to Bathe a Schnauzer (and other Life Lessons from Alex Tressor)

We met with Alex Tressor, a former Broadway dancer who founded Parkinson’s On The Move, to discuss ballet, beloved pets, and coming of age in the Soviet Union.

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Designing the CUE1 for My Father: Voices from the RPD Team

We talked with our partner RPD international, who is working hard behind the scenes to bring the CUE1 to people with Parkinson’s. Through this blog, we wanted to share the extra motivation RPD has towards developing of the CUE1.

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Music as Medicine: The Parkinson’s Wellness Project

Charco recently gave a presentation at ‘Music as Medicine in Parkinson’s’, a seminar hosted by the Parkinson’s Wellness Project. This week, we share some of the insights we received from a panel of neurologists, performers, and therapists. 

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How TikTok Sparked a New Design for People With Parkinson’s

Today we hear first-hand from Brian Alldridge, the man behind a design taking the world by storm. This story has captured hearts and minds around the world, and we are excited to bring you some exclusive insights!

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Behind the Scenes at Charco: The Development Of The CUE1

For the latest instalment of our Behind the Scenes blog series, we focus on how Charco has developed the CUE1, from its initial sketches to the device we have today. Tracing Charco’s progress from university project to burgeoning start-up, we take a look at the journey so far. 

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No Silver Bullet: A Discussion With Jimmy Choi

This week, our blog features two special guests! The first is No Silver Bullet, a discussion group which Charco has been a big supporter of since early on. In this featured talk, NSB invite athlete and advocate Jimmy Choi to talk about his life experiences, and how his view of Parkinson’s has changed. This informative, emotive, and often surprising talk was surely not one to miss!

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Behind the Scenes at Charco: CUE1 App Development

People often ask how Charco is working, and what we do day to day. Well, we have now decided to share our behind-the-scenes workings with you! In what is the first in a series of articles looking at what goes on behind the scenes at Charco, we discuss how we have developed our CUE1 app.

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A Look Back Through Charco’s Year

As we are approaching a new year, we want to share our journey from The Moment to Charco Neurotech and our overall progress since the beginning of 2020. 

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The Charco Xmas Blog: A Message of Gratitude

For many, this festive period comes at the end of a very long, unpredictable year. It is all the more important, then, to consider who has provided comfort during these times, and what we are grateful for. 

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CUE1 User Testing Report: MDS-UPDRS / Timed Tapping / TuG

We are incredibly excited to announce that we have now completed the report for our second round of user testing.

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John and Barbara: How we learn from the unexpected

We met John and Bobby through our mutual friend, the indefatigable Richard Underwood. Richard introduced them as a lovely couple with an ever-positive attitude towards John’s Parkinson’s.

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The Remarkable Dr. Parkinson: A Career

Parkinson’s disease is named after the first person to recognise it as a distinct illness – Dr. James Parkinson (1755-1824). An interesting figure, he was not just a good doctor but a keen scientist, political reformer and philanthropist.

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Helpful information for people with Parkinson’s in the 2nd Lockdown

England has gone into another, month-long lockdown. This is going to be a difficult and emotional time for many of us, so it’s more important than ever to support each other and be kind to ourselves.

This is a quick guide to measures in place across the UK, and what we can do to keep ourselves healthy and happy through this trying period.

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The original medical innovator for Parkinson’s, Professor Charcot

Professor Jean-Martin Charcot (1825-1893) is generally regarded as one of the greatest early neurologists; a pioneer whose diagnostic work has continued to influence medicine in the modern age. It’s hard to understate the influence Professor Charcot had on the field of neurology.

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Charco Neurotech’s Clinical Advisor, Dr David Galloway

At Charco Neurotech we have been fortunate enough to have the support of some bright minds. Dr David Galloway, a retired physician specialising in acute medicine and clinical pharmacology, is one of our clinical advisors. We caught up with him to discuss the science behind the CUE1 device.

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Mike Tindall: My Dad and Parkinson’s

Mike Tindall, a former England Rugby captain and World Cup winner, has spent the last decade or so lending a huge amount of support to the Parkinson’s community after his dad was diagnosed 17 years ago. One of Mike’s aims is to share stories and coping methods to aid the Parkinson’s community, similar to what we try to do with these blog posts.

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The CEO perspective: Gary Shaughnessy, Chair of Parkinson’s UK

“How can we trust that we’ll succeed if our own CEO is shaking?” Whilst reading one person’s feedback from a presentation he had just delivered in the UK, Gary Shaughnessy, ex-CEO of EMEA of insurance company Zurich, and current Chair of Parkinson’s UK, came to comprehend what Parkinson’s really meant for him.

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Charco Neurotech-Stapp one user testing report

The second round of user testing has now been completed and we are very happy to announce that we have now published our report from our collaboration with Austrian insole sensor company Stapp one.

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Changing Parkinson’s medication packaging for good: It all started with a tweet

Speak to someone with Parkinson’s and they’ll be able to give you a long list of frustrations arising from where their symptoms have affected their everyday life.

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YOPD Parkinson’s – In the end, it was not The End

When Florencia Cerruti was 47 years old, she was at the peak of her career. She worked at the Presidency of the Republic in Uruguay, in the highest professional position that one can achieve, following her master’s degree in nutrition.

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His bespoke Parkinson’s- Mark’s story

Like many of the people we have had the great pleasure of speaking with, the delivery of Mark’s Parkinson’s diagnosis was blunt. His GP initially told him he was far too young to have Parkinson’s. He went on to see a specialist in what felt like a consultation lasting only a few minutes.

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Parkinson’s – A Mover and a Shaker

Our journey to a viable product began with a wonderful lady named Ruth and an invite to a Parkinson’s UK Peterborough branch coffee morning. It was at this coffee morning at the beginning of 2019 that we met a number of people with Parkinson’s who were to go on to give kindly and generously of their time and energy.

Cards and Queues

Ruth is a calm yet compassionate lady, with a heartfelt drive and a positive attitude towards helping people who are suffering with the symptoms of Parkinson’s. She talks animatedly and with empathy as she describes the situations they regularly face. From the anecdotes she shares, it is clear that one of the hardest things to deal with is time pressure. She recounts the stories of people who have found themselves struggling to get cards out of their wallets – often with the added pressure of a queue building behind them. She describes how the situation is already difficult for someone who is consciously making an effort to control their movement – and how it is compounded by fellow shoppers ‘tutting’ in the background.Ruth is a serious and earnest interviewee, making her points without judgement or emotive language; yet as she describes how some people are not even given the chance to explain their symptoms, even she can’t hold back a head shake. The subtlety of the gesture lends more weight to the frustration evident in her face.

Too Little, Too Late

Her compassion is never more evident than when she is describing the occasion a Parkinson’s sufferer boarded a bus with a particularly intolerant bus driver. The passenger was unsteady on his feet and struggling with limb control and was accused of being drunk. Unfortunately, the driver treated him accordingly and later apologised for the incident.Ruth explains how others have recounted stories of walking down the street, only to be stared at; or for it to be assumed that they are drunk or in other ways incapacitated. She is obviously saddened by the lack of awareness and understanding whilst out in public, and one can see where her drive to educate and raise awareness comes from.Each of these scenarios features the same challenging cycle of anxiety, stress, triggers and anxiety. In a situation that is already physically difficult, to be faced with judgement and derision is heart-breaking. Ruth goes on to explain that while in some cases the behaviour may be followed by an apology, it is usually too late. Too late, in that the damage is already done. The person with Parkinson’s has already lived through that experience, suffered the emotional turmoil and physical consequences of increased stress and been affected accordingly. 

Patience, not Pity Please

Ruth’s symptoms are not visible. There is nothing overt to tell an observer that this is a person dealing with the challenges of Parkinson’s. Unbeknown to most, common symptoms are in fact stiffness and sluggish movement – unnoticeable, perhaps, unless you are watching for it. These are also outward signs that can easily be misinterpreted. Ruth herself appears to have great control over any physical symptoms she may have. Only the occasional posture adjustment gives any indication that she could be in discomfort, when she does, in fact, cope with pain in her shoulder, which affects the whole of the right side of her body. Her hands, also, give away nothing; although the very stillness and straightness with which she bears herself are perhaps a clue to how much effort is actually involved in maintaining her composure. She explains how she manages six doses of medication per day, and that she plans her day and her diary around these times to make the most of the effect before it wears off.

Her overwhelming message is to be aware. Do not judge or assume – and be kind. There are so many ailments that most of us have no knowledge of that it is a dangerous thing to assume you know why someone is behaving the way they are. There is a point in our chat when Ruth is explaining that one of her own triggers is crowds. The lack of space, the hustle and bustle, all contribute to an overwhelming situation where you are physically jostled and can struggle to maintain control. She describes how she ‘used to’ go to the supermarket early in the day to avoid the crowds and queues, “but now sadly…” There is barely a pause as she quickly moves on. It is only on reflection one realises that she may mean she can’t even manage the early visits now.There is no complaint from Ruth, no self-pity. In fact, it is one of the rare occasions we see her grinning! Her whole face lights up as her next sentence brings a positive note to even this revelation: “My husband’s really pleased because I don’t go shopping as much!” Thank you Ruth for sharing your story. 

Author : Victoria Duggan

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Meditation And Nutrition: A Guide To Living Healthily With Parkinson’s

As most areas in the UK ease out of lockdown, and others enter into it again, finding a ‘new normal’ can be stressful and challenging, particularly for those with Parkinson’s. Following a ‘Life After Lockdown’ webinar with Parkinson’s Concierge, we hope that these tips on meditation and nutrition will help you to regain some control in this time of uncertainty.

Getting Back To Doing The Things You Enjoy

Parkinson’s Nurse Consultant, Dr Annette Hand, reminds us that as things begin to change yet again, it’s about taking control; “stay active, meet loved ones, get out there and do what you want to do”. We know that Parkinson’s affects the levels of dopamine in the brain, which impacts upon how you cope with stress and anxiety. Dr Hand therefore recommends that whilst it’s important to start getting back to ‘normal’ and doing the things you enjoy, you should plan and consider how you will do this. “It’s about baby steps”, she says, “taking things at a pace that you can cope with and using strategies to help you with it; anything that can help you come to terms with what the ‘new normal’ is”.

If you are looking for some new activities in your area, you can enter your postcode on the Parkinson’s UK website and view a range of services that are opening up again.

Meditation Creates Space Between You And Worry

With the worries of COVID-19, Parkinson’s, and everyday life mounting during the day, many people understandably have troubled sleep. Gillian Ward, a meditation practitioner, says that although we don’t quite understand the science behind it, those who meditate always report an increase in energy during the day and a more restful sleep at night. She tells us that even in this tricky time, where we’ve all had to find new routines, easy meditation techniques are helping people to improve their sleep. She says that it is a gentle experience but can be very powerful, providing the opportunity to step away from everything that may be going on.

In addition to sleep, Gillian tells us that meditation is also beneficial for coping with pain. “When we are in pain, we often cut off from that area and it becomes even more tense. We hold it in tension and cut off the blood to it, we don’t breathe into the area. So, meditation is about undoing that and welcoming that part of the body back. I encourage people to notice areas of tension and revisit those areas, giving it some love by simply breathing. You find that the more you just let go and release into that area, the tension dissipates.” She tells us that this comes with practice, sitting somewhere comfortable so that you are not distracted by the pain, and being mindful of your body and breathing.

While some people may not be keen on the idea of sitting still in a meditation class, Gillian reminds us that it is possible to meditate anywhere. You simply need to focus on an ‘anchor’; your breathing, or one of your senses, and pay attention mindfully to what you are doing and how you are doing it. She explains that this is easier to do if you have already been to a meditation class so that you know how to realise you are distracted and come back to your anchor. After this, you can meditate anywhere; watch the clouds in the sky, the rustling of the trees, the waves on the beach or even the people walking past. Simply “pay attention to the present moment and don’t wander off into your thoughts”. The Parkinson’s UK website has a toolkit for practising mindfulness, including a 15 minute mindfulness audio session.

Regain Control Through Monitoring Your Food Intake

Dietitian Richelle Flanagan tells us that, as a person with Parkinson’s herself, she knows it’s natural to want to look for answers to control our disease. One area that we can control is the food that we put into our bodies. This is something that Mark, a person with Parkinson’s, has been aware of for a few years now; he treats his disease in a holistic way and is conscious of the effects of his activity levels, mood, and what he eats. Mark believes that Parkinson’s should be seen as a gut-based disease, as everything that goes into your stomach then travels up to your brain, and “if your gut can’t deal with it properly, it’s going to fuel your brain with the wrong stuff”. Richelle agrees, expressing hope that neurogastroenterologists are now coming to the fore.

With regards to which foods should and shouldn’t be eaten if you have Parkinson’s, Richelle recommends looking at the healthy eating guidelines of your country, as the premise is to take in as many nutrients as you need at a baseline. For example, snack foods that are high in sugar should be avoided in general. Additionally, you should avoid refined carbohydrates such as white bread and pasta and opt for wholegrain types.

For someone with Parkinson’s, there will then be other things to bear in mind. People with Parkinson’s may sometimes have insulin resistance, meaning they are unable to metabolise the sugars in food well; you should therefore avoid loading the body with refined sugars. Similarly, be mindful that alcohol can interact with some medications and will dehydrate you. The calcium found in dairy supports bone health, and Richelle recommends that everyone with Parkinson’s have a scan to check their bone health, as they may need calcium supplements. Similarly, vitamin D is important for people with Parkinson’s and supplements may be needed. Omega 3 can be found in oily fish such as salmon and mackerel, which Richelle explains is beneficial for achy joints.

Both Mark and Richelle recommend keeping a food diary to assess which foods affect your symptoms. For example, Richelle notes that protein is important for keeping muscles strong and fatigue at bay, but some people with Parkinson’s may find that their symptoms are worse after eating a high-protein meal, as protein competes with levodopa for the same absorption site in the gut. Not everyone will find this, so keeping a food diary will help you to be aware of which foods you personally should try to limit or eat at different times. As Mark explains, “All your cells in your body need to be fuelled with something and it’s about what you fuel them with – the right thing –  that doesn’t compromise anything that is complicated with Parkinson’s”. Parkinson’s UK has a wealth of information on diet and how making some simple changes may help you manage your symptoms.

Mark adds that once you notice some changes you need to make, “it’s almost like you have to take a big deep breath and say ‘I’m going to make this change and this change is going to be forever’. It takes a while to make that first step”.

Advice For Dealing With Constipation And Parkinson’s

Richelle explains that constipation is a prodromal symptom of Parkinson’s which can get worse over time, as dopamine affects the bowels and impacts upon how quickly the stool passes through the gut. It can also interfere with the absorption of levodopa, worsening Parkinson’s symptoms as the dopamine you need is not able to reach your brain. Constipation is therefore one of the key things that should be checked with every patient, she says, for diagnosis but also on a regular basis to improve symptoms. While neurologists and movement disorder specialists may lack specific knowledge in this area, Richelle recommends speaking to a dietitian to go through your bowel habits and your diet.

The food that Richelle tells us is important for dealing with constipation is fibre. There are two types; insoluble fibre is “nature’s brew”, helping to move the bowels. These are wholegrain foods and cereals. Then there are soluble fibres, which help to provide softness to stools to help it pass more easily. These come from pulses and nuts, as well as fruit and vegetables. Richelle recommends checking food packaging; 6g per 100g is high in fibre. A combination of these two types of fibres is important for healthy bowels, in addition to drinking plenty of fluid.

How Much Water Should You Be Drinking?

The general guideline is to drink between 1,500 and 2,000mls of fluid per day, which equates to around 8 to 10 glasses. However, Richelle says that fluid intake is based on body weight and guidance should be tailored; for example, if you are doing lots of exercise then your requirement would be much higher.

Richelle recommends you take your levodopa with plenty of water, for two reasons. First, many people with Parkinson’s struggle with swallowing, so water ensures the tablet does not stick in your throat. Additionally, levodopa can increase dehydration, so it’s important to increase your fluid intake. She suggests taking your drug with 500ml of water, as this way, if you take it three times a day, you will find you have easily drunk 1,500ml.

While tea and coffee are included in the term ‘fluids’, be mindful that coffee can dehydrate you and that one big shot of real coffee will contain far more caffeine than a cup of instant coffee. Additionally, fizzy drinks and alcohol do not count towards your fluid intake.

Advice For Dealing With Bladder Problems And Parkinson’s

Dr Hand reminds us that it’s also important to drink plenty of fluids to alleviate the bladder issues that Parkinson’s can cause. Common problems include increased frequency of urination or needing to go during the night, as well as incontinence or pain. There may be many reasons a person with Parkinson’s has bladder problems; you may have walking difficulties that affect your ability to reach a toilet in time, movement issues which cause you to struggle with buttons or zips, or difficulties sitting down. If you don’t drink enough, Dr Hand explains that your urine becomes concentrated which irritates the bladder. This causes it to try to release the urine, making you need to go to the toilet more frequently. She recommends looking at the colour of your urine; “it should look like a nice pale white wine”. If your urine is darker this may indicate you need to drink more, but Parkinson’s medication can also discolour your urine, so Dr Hand suggests keeping a check on what it normally looks like.

If you are concerned, Dr Hand urges you to contact your Parkinson’s nurse so that they can assess you and signpost you to the right places. She stresses that it is important to talk about it early if you start to develop problems, as leaving it for longer can make it more difficult to sort out. Parkinson’s UK have a useful page on bladder and bowel problems.

We hope that this information helps you to feel a little more in control in these troubling times; through mindfulness and being aware of the foods you put in your body. Thank you to the speakers and Parkinson’s Concierge for organising this webinar, and to Mark for sharing his story. Our next blog will look at Mark’s experience of taking control over his own Parkinson’s journey.

Stay up-to-date with our progress and be the first to know when CUE1 is available and on sale! We’ll also send you an introductory offer as well as further information on our research progress and testing recruitment.

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The Super Mr. Jimmy Choi

Most young kids will think of their parents as superheroes, but when Jimmy Choi’s daughter says so, it’s difficult not to agree with her. When we saw the man on the other end of the video call, in incredible shape with a kind smile and close cropped black hair, it certainly did bring to mind images of a slightly dyskinetic Superman

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Patient-centred Research – uMotif

The Charco Neurotech team are developing the CUE1 device with, and for, people with Parkinson’s. We are therefore grateful to have spoken with another medical technology company founder, Bruce Hellman, co-founder and CEO of uMotif,to hear what inspired him to develop a patient-centred app and share his advice for other medical technology companies.

The Data Capture Platform Patients Love to Use

Founded in 2012, uMotif started as a search for a simple way to help people capture data about their health. Bruce and his co-founder, Ben James, met with two people with Parkinson’s who were excited about their idea; the business then developed with their help, as well as the support of the Cure Parkinson’s Trust. As Bruce says, “The founding stimulus was working with those two patients”.

However, Bruce light-heartedly informs us that, “whatever your first idea is in a business it’s almost certainly not exactly what you end up doing”. The challenge for Bruce and Ben was to find where they could deliver value, in a way that was sustainable. Through a “meandering path” they realised they could drive real value by helping patients to capture data for researchers; value “which is defined as a must-have, not a nice-to-have”.

Today, uMotif captures the data of participants in clinical trial research, using a platform designed with patients to ensure its ease of use. Bruce envisages a future where trials are designed around the participants themselves, giving them a better experience and knowledge of their own health while also helping to generate new insights that are key to bringing new drugs to the market faster.

The Digitalisation of Healthcare and Research

Virtual studies, where patients don’t need to attend clinics, help to answer questions that haven’t been possible until now. For example, uMotif’s app was recently used for the UK’s largest virtual research study, investigating if weather influences pain. Participants tracked their symptoms while their smartphone used GPS signals to collect the weather conditions.

Tracking symptoms and data directly from a participant’s smartphone also reduces the burden on patients, making it a more beneficial experience for them. The uMotif SaaS platform has been entirely designed throughout its development with patients in mind, from the initial design stages with the Cure Parkinson’s Trust to the randomised controlled trial to assess its benefit in seven NHS centres, taking on board patient and clinician input.

In February 2016, uMotif powered the “100 for Parkinson’s” initiative. The app was made directly available to the public, who were asked to download it and track their data for 100 days, and to donate this data to research. Over 4,200 people took part, collecting over 2.2 million data points. Bruce tells us that “the great thing was that the participants all enjoyed taking part, donating their data but also learning a bit about themselves too”.

As a software which can be downloaded onto one’s smartphone, the uMotif app makes it easy to track data from the comfort of one’s home. There is a shift in how clinical trials are being run; “more and more it’s happening digitally, as people prefer to do things remotely rather than go to a hospital”. The current pandemic has accelerated the digitalisation of research, but also of healthcare, as more consultations are occurring virtually. You can read our previous blog posts about COVID-19 and Parkinson’s, to hear from practitioners making use of technology at this time, here and here.

Advice for Others Developing Medical Technologies

The biggest challenge in this area, Bruce believes, is creating something that people will ultimately buy and use. You need to find something that sticks, and that people rely on, “so that if you took it away they’d say, ‘no, we need that!’”. He advises focusing on the real essential value that you are going to deliver, that has a tangible benefit; “What is it that people can’t live without?”.

A difficulty that Bruce says he personally faced with uMotif was trying to ignore so much of the opportunity he saw in other areas and finding the one thing that he could focus on. “It’s about trying not to do too many things”. He tells us that sometimes it may be right to pivot to a different area and follow a different path but, “you’ve got to be all in”.

Bruce warns that you will have to try things before you know exactly what to do, and he advises that when learning from your audience and the patients you aim to help it’s far better to speak with only eight people in depth rather than simply chat with 50 people.

A Global Future

The aim for uMotif is to be a world-leading platform for capturing research data. Bruce hopes the business can “grow smoothly and sustainably to deliver more value to patients and researchers”. He acknowledges that they already know they can deliver real value to people and make the experience of participating in clinical trials better for them. “In growing our business, we can have more of that positive impact on patients and researchers and the more positive impact we have, the bigger a business we can grow. So, the two things go together quite nicely”.

Bruce says that he is excited about better and more modern technology in the future, and he is particularly excited to become a global business with a broad footprint, reaching more patients and researchers across the world.

We are also excited to see uMotif’s growth and for the time “when people think of capturing data for research, [they] think of uMotif”. We are grateful to have spoken with a business founder so dedicated to providing value for patients, as we similarly believe that the most important thing for medical technology companies is to continually speak with the people they aim to help, researchers, and healthcare providers, to make sure we bring value to all parties.

Thank you to Bruce, co-founder of uMotif, for sharing his valuable advice with Charco Neurotech, an early-stage medical technology start-up aiming to bring value to the lives of people with Parkinson’s.

Stay up-to-date with our progress and be the first to know when CUE1 is available and on sale! We’ll also send you an introductory offer as well as further information on our research progress and testing recruitment.

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Parkinson’s and the Importance of Voice – Matt Eagles

Matt Eagles is a public speaker, advocate for the recognition of young-onset Parkinson’s and founder of ParkyLife – a website, a pack of cards, an Instagram and a Twitter account dedicated to better illustrating what life is like with Parkinson’s.

But then you might know about him already, such is his engagement with the Parkinson’s community. Having been diagnosed with Parkinson’s at the remarkably young age of 7, he’s had plenty of time to accumulate reams of stories, anecdotes and tips about Parksinon’s and the brighter sides of living with the condition.

He has now set about sharing as much of this information as possible in order to spread a more positive message about what he thinks is an under-discussed and misrepresented condition. Talking with Matt, we discussed the importance of communication when living with Parkinson’s and how he’s utilised his voice – from talking openly with friends and even strangers about Parkinson’s to engaging with the wider community online to giving keynote speeches at prominent events.

Telling Tales

As we talked to Matt, it quickly became clear how much of a natural storyteller he is. He’s an incredibly cheerful and likeable person with an infectious grin and a hair-trigger laugh that draws you into all the strange tangents he goes off on, which mostly relate to the incredible people he’s met or recount his many sporting adventures. 

Matt’s relationship with his voice began during his youth when, at the behest of his snooty mother (his words!), he attended elocution lessons to “deal with” his strong north-western accent. Through this, he began learning poetry and giving public recitals at local speech and drama festivals. Despite a lopsided appearance and having to sit while giving his recitals due to the balance issues he suffered even at this young age, he was very successful and proudly recalls winning a trophy for his efforts at the age of 8. In hindsight, Matt thinks he owes a great deal of his talent with public speaking today to this tutelage and encouragement as a youngster, and is thankful for being practically forced to do it by his mother!

However, as Matt entered his twenties his speech, previously unaffected by Parkinson’s began to weaken. It sometimes became slurred due to his medication, making him sound drunk, especially when he was talking to someone on the phone and couldn’t visually show otherwise. “It was extremely frustrating , particularly when I knew I hadn’t even had anything alcoholic to drink but had just gone down to the pub to watch football.” Incidentally, the pub seems to be the setting for a number of his stories, perhaps because his propensity for approaching strangers and striking up conversation was more acceptable here. He even exercised his talent for public speaking here, running a weekly pub quiz that was popular enough with the punters to persist for 13 years.

While Matt’s increasingly wobbly and sore-throat-sounding voice was accepted at the pub, it was much more detrimental to his work as a tele-salesman. The impact was so severe that he began receiving biannual botox injections in his throat to treat what was diagnosed as laryngeal dystonia. Each injection helped, but only temporarily. After suffering 14 years of this, a combination of leaving telesales to rest his voice, speech therapy and deep brain stimulation thankfully improved the laryngeal dystonia. With his voice restored to its former smooth-sounding glory, Matt stopped the injections in 2010 and has not needed them since. 

It is perhaps these difficulties with his voice that have led Matt to value its importance so deeply, and to work so tirelessly to make sure it is heard today.

Shared Experience 

Matt set up Parky Life – part art project, part awareness campaign, part memoir, part forum – as a platform for shared experience, using the power of storytelling to demystify and spread positivity about Parkinson’s to people in and out of the Parkinson’s community. It’s taken the form of what you might imagine a curated Matt Eagles stream of consciousness to look like; a collection of funny, inspiring and heartwarming anecdotes accompanied by beautiful illustrations. Each illustration, Matt says, is made by a different artist in order to reflect how different Parkinson’s can be for different people. 

One of the stories that first inspired Parky Life happened while Matt was waiting for a train at Euston Station…

“I was sitting in the waiting room and spotted another guy who was waving around and wobbling a bit so it was obvious to me that he was dyskinetic. He was looking down, not making eye contact with anyone and his body language was really closed off. His wife was acting the same. To be frank they looked ashamed. So me being me, I sort of twitched and danced my way over and politely said ‘I hope you don’t mind me asking but you seem to be having the same sort of dyskinesia I’m having – you don’t by any chance have Parkinson’s do you?’ He slowly lifted his head and said ‘Oh… well yes, I have” and it turned out I was actually the first person he’d actually ever confessed that he had Parkinson’s to. So I said “Well don’t worry it’s not the end of the world, there are plenty of worse things that can happen” and began having a really nice chat with them. He and his wife slowly started lighting up and becoming more and more animated, smiles breaking out on both their faces. It turned out he was so ashamed of having Parkinson’s because he thought it was this old man’s disease, and so this galvanised me into action – I thought, well we’ve got to do something about this.

I deal with my Parkinson’s by telling anecdotes – I share them with people and it helps me cope. I recounted one such story to an immensely talented illustrator friend of mine and we hatched a plan to create some kind of kids book or something where we collected funny stories from all sorts of different people with Parkinson’s.”

This evolved into the pack of Parky Cards, which includes tips and hacks for living with Parkinson’s, funny stories illustrating the lighter side of the condition, and profiles on famous people with Parkinson’s such as Billy Connolly to shatter the illusion of it being the disease of the old, doddery, house-bound man.

Changing Perceptions

A rare case where Matt chose to remain non-verbal was during his trips to Queen’s Square [medical research centre] in London as a teenager. Here, neurologists and movement experts would gather to observe Matt’s symptoms, so unusual for a boy of his age. “I remember feeling quite smug actually, as I watched all these doctor’s try to figure out what was going on with me. Meanwhile I sat there quietly knowing I was the greatest expert in the room when it came to my symptoms”. Though he wasn’t speaking, Matt was still using his voice. As such a young person with Parkinson’s, he was an example of a greatly underrepresented group within people with Parkinson’s. It is sadly the case that doctors are generally much less willing or even refuse to diagnose a younger person with Parkinson’s, making it difficult for those with young-onset 

A couple of alternative depictions of people with Parkinson’s Matt would love to see on the 

Wikipedia page. Left: Matt Eagles himself  Right: Sue Wylie, more info here

Parkinson’s to get the help they need. By communicating with these doctors, he was contributing to better understanding of YOPD. This remains an issue close to Matt’s heart as he persists in trying to reverse the preconception that Parkinson’s is exclusively a disease of the elderly. One of Matt’s missions is to change the image on the Wikipedia page for Parkinson’s, currently a 19th century illustration of exactly the kind of “doddery man in his slippers” he thinks isn’t representative of people with Parkinson’s. This image is also the first one returned when you Google Parkinson’s. To this end, he’s been in contact with the head of Wikipedia himself, Jimmy Wales, and is now working with him to get it changed. “If you’re a young lady with who’s diagnosed, for example, how can you possibly align yourself with this image of Parkinson’s? We need to change what Parkinson’s looks like to the rest of the world”.

Matt wants to encourage and facilitate the sharing of Parkinson’s stories to increase awareness of the diversity of people with Parkinson’s. He imagines a situation where everyone can comfortably and openly discuss the condition, whether or not they have it, and feel able to ask for or offer help without inhibition. ‘

“Young kids are the best” Matt exclaims, launching into another story; “they just stare at you. Other people get embarrassed when they see me staggering around in the street, so i just say ‘Don’t worry it’s alright, I’ve got Parkinson’s’ and then if they offer to help, great! Either I’ll say ‘yes thank you very much’ if I need it, or if not, ‘That’s very kind of you but no thanks’. You’ve got to factor in that some people, wherever you go are just ignorant. So there was a case a couple of years ago while I was out walking my dog with my wife and there were a few local lads on BMX bikes hanging around the shops. My walking wasn’t great at the time and I noticed they were just looking at me, so I went up and asked, ‘Are you alright lads?’. One, who had a bit of a reputation around my estate as a trouble maker bluntly asked ‘What’s wrong with you mate?’. So I sort of went ‘Oh it’s okay I’ve just got Parkinson’s. It means I’ve got trouble walking so I have to stagger a bit’. And once  I engaged with him and he got an answer to his question, he said ‘Okay mate I hope you get better soon!’ and they all rode off! 

So sometimes you’ve got to be a little bit brave, but you’ll find that everybody’s got compassion and kindness in them. I’ve even known blokes who’ve been in prison for all sorts of stuff who always hold the door for me and ask how I’m doing. This young lad always says hi to me now whenever we see each other around the estate. If you know where you stand with someone, you see eye to eye and understand each other’s situation, then that door to kindness is opened.”

Using Your Voice to Own Your Parkinson’s 

Matt’s a big believer in striving to own your Parkinson’s rather than letting it own you. “If you can own it, own your own personality, own your space, then people will embrace it and offer you help if you need it”. He thinks people with Parkinson’s worry too much about how people will perceive them when they find out. Part of this is sadly due to global perception of Parkinson’s and disability in general, but that, Matt believes, that shouldn’t define you, and if that’s all someone can see about you then they’re not worth your time! “Having Parkinson’s is not a catastrophe and it’s certainly nothing to be ashamed of. Embracing it is so much better than letting it take over you. Whatever your issue, it’s still you underneath, whatever the condition” 

As with so much, when it comes to managing Parksinon’s effectively, it’s a matter of attitude. Matt spent 45 years with Parkinson’s and has had his fair share of ups and downs with it, but he still wholeheartedly believes that to talk about it, with as many people as possible, is the best thing you can do to keep on top of your Parkinson’s. Engaging with local charities, Parkinson’s-forward classes and the online community has been so beneficial for so many of the people we’ve talked to.

 It helps you come to terms with the condition, share tips and tricks for symptom management and perhaps most importantly, reminds you that you’re not alone! Not only will this benefit you, but contributing to a more open discussion of Parkinson’s will help break the global misconceptions of the condition and actively help people diagnosed in the future. Finally, don’t be afraid to extend your voice beyond the Parkinson’s community. As Matt’s stories show, people are very understanding if you explain the situation to them. Any aversion, hostility or judgement you might perceive or imagine them to have is usually due to ignorance on their part. Don’t be scared to educate these people, especially friends and family – the more who understand Parkinson’s the better! 

Thanks again to Matt for talking with us, and for all his incredible ongoing work in the Parkinson’s community. Check out Parky Life for even more of his inspiring stories here.

Author Alex Dallman-Porter

Stay up-to-date with our progress and be the first to know when CUE1 is available and on sale! We’ll also send you an introductory offer as well as further information on our research progress and testing recruitment.

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Parkinson’s questions answered by a movement specialist

Dr Amit Batla is a movement disorders specialist and Honorary Consultant Neurologist at National Hospital for Neurology and Neurosurgery, in London.We are very grateful that he was able to answer some questions from the Parkinson’s community, in a Q&A hosted by Parkinson’s Concierge.

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George’s mission to spread awareness of Parkinson’s

George’s mother, Sharon Riff Ackerman, sadly passed away in January, after living with Parkinson’s for at least 15 years. Five years ago, after her daily life started to be affected, George dedicated himself to making sure that she received the best care.

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Newly diagnosed with Parkinson’s? Advice for all those affected

A diagnosis of Parkinson’s may invoke a range of emotions. We at Charco Neurotech aim to improve the quality of life for people living with Parkinson’s and those around them, and we understand that greater knowledge of the condition and discovering the experience of others is beneficial for this.

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The power of community, exercise and attitude for People With Parkinson’s

Johnny Boyle, a 52 year-old New Zealand father of three, was diagnosed with Parkinson’s 3 years ago. In the time since then, he has developed a uniquely methodical and positive approach to managing his symptoms and to life in general that would inspire people with and without Parkinson’s alike. He was kind enough to sit down with us and share some of the exercises, routines and philosophies he’s adopted to minimise the difficulties posed by his symptoms and maximise his ability to do what he loves. 

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GP Dr Schramm’s care for people with Parkinson’s

Dr Chris Schramm studied medicine in Australia and finished his junior doctor years in Cambridge, England.He has worked as a GP in England for over 20 years and wants to help the people he sees gain confidence in living with Parkinson’s; encouraging them to not feel trapped by what people think of them, in addition to the restrictions posed by the illness itself.

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Benefits of Peripheral Stimulation for Parkinson’s

Dr Sweta Adatia is a highly qualified and experienced Clinical Neurologist who is currently studying for an MBA at Cambridge Business School. She has experience studying and practicing

in the field of neurology across five continents as well as a current interest “in the space where you can create new therapies, new projects, new protocols for helping the patients”. This background enables Dr Sweta to offer brilliant insight into why she thinks a device offering peripheral stimulation is “a great idea” for people with Parkinson’s.

Peripheral Stimulation and Parkinson’s 

Speaking eloquently, with a dizzying speed that betrays her fierce intelligence and a deep understanding of the condition, Dr Sweta explained why she is “a great fan” of using any strategy which can help people with Parkinson’s overcome their hypokinesia (slow movement), rigidity and freezing episodes (a sudden, temporary, inability to move). 

The CUE1 (a vibrotactile stimulation device) uses the concept of peripheral stimulation to help “boost” the neuromotor circuitry and bypass movement problems caused by a lack of dopamine (a neurotransmitter in the brain). Dr Sweta deftly explains the process as “stimulation at the periphery – which can be anywhere (as she indicates her whole body) – and that is where the impulses go back to the brain. They hit the basal ganglia circuit and the motor cortex and again, with that stimulus, give a central boost.”

Parkinson’s Disease (PD) is a progressive disorder that affects nerve cells in the brain responsible for body movement. When dopamine-producing neurons die, symptoms such as tremor, slowness, stiffness, and balance problems can occur. 

What other treatment strategies are there?

One treatment option which has been explored is Deep Brain Stimulation (DBS) – an invasive procedure which involves inserting thin metal wires in the brain to modulate the motor circuitry. Exactly how DBS works is not fully understood, but many experts believe it regulates abnormal electrical signaling patterns in the brain. This is not a cure and experts believe those eligible make up just 1-10% of all people with Parkinson’s. Dr Sweta also cautions that “trials suggest that it does not work very well for everyone” and that “it does not help all the symptoms of Parkinson’s Disease”. 

Two other treatment strategies include either pushing the existing dopamine cells to work harder (“but they cannot beyond a certain point” Dr Sweta states) or – more commonly – supplementing existing levels of dopamine. Whilst medication works in the latter case, it can lose its effectiveness over time which leads to significant side effects such as the ‘on-off’ phenomena and erratic dose responses.

CUE1 and peripheral stimulation a “great idea” for People with Parkinson’s

Dr Sweta confirms that it is during the early- to mid- stages of Parkinson’s that the peripheral stimulation could be most effective in helping people manage some of their symptoms. She explains that “the main impact would be in the motor aspect of it…making the movement smoother and progressive”, thus helping with slowness of movement and potentially overcoming freezing episodes. 

She shares her knowledge of older trials, as well as more recent research describing the successful use of alternative strategies – including cues. These studies have shown that the use of sensory stimulation to ‘bridge’ the circuit is securely founded in science “because you are trying to ignite that same circuit which is a part of the problem”.

During our discussion, it is obvious that it is the lack of risk which is particularly important to Dr Sweta’s support of the use of sensory stimulation as part of a management plan. “I think it’s a great idea” she states. “There is no pharmacological intervention whatsoever – there is no additional harm that you are doing by stimulating the periphery”. She goes on to add that “the chances of working (whatever they may be) would definitely help the patient rather than do any harm”. 

Helping people with Parkinson’s overcome mobility symptoms

It may not make a huge difference to appendicular rigidity (stiffness in arms and legs), postural symptoms, balance or tremors. However, Dr Sweta explains how intermittent stimulation could help those who struggle with walking difficulty (slowness) and intermittent freezing. The vibrotactile stimulation, in theory, should reduce hypokinesia and boost the effect of levodopa. 

Devices such as bent sticks, laser light devices and more are already being used for facilitating walking in patients of Parkinson’s Disease, although they do not employ sensory stimulation. The CUE1 Device utilises this component well. 

Dr Sweta concludes that any clinical trials that are carried out that “prudently monitor” the akinesia (inability to move), hypokinesia and freezing aspects (with reference to both the ‘on’ and ‘off’ phases); trialled with and without stimulation from the CUE1 Device – would be “highly valuable”.

Buoyed by these affirming comments we continue to develop CUE1 to be as effective and user-friendly as possible with plans to take the technology to clinical trials in the coming months. 

We strive for its success – to help people suffering from the disease and to provide a ray of hope to their families equally struggling to care for them. Thank you to Dr Sweta for lending her expertise and support, further adding to the fantastic knowledge base behind CUE1.

Stay up-to-date with our progress and be the first to know when CUE1 is available and on sale! We’ll also send you an introductory offer as well as further information on our research progress and testing recruitment.

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Understanding COVID-19 and Parkinson’s

The COVID-19 pandemic is now a daily part of everybody’s lives, and we understand that it is particularly concerning for people with Parkinson’s. We are very grateful therefore, that Parkinson’s Concierge hosted a Q&A session with Parkinson’s UK, to allow specialist nurses to answer questions from the community.

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Jane & Boxing for Parkinson’s Derby

We were delighted this week to meet with Jane, a sQuad member (‘Parkinson’s UK’ Derby Working Age Group) and online administrator of the Boxing for Parkinson’s Derby Facebook Group. Jane is also a wife, a mum to two children (aged 11 and 14) and a commercial specialist working with Intellectual Property and contracts. Jane is living with Parkinson’s.

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A Useful Glossary Parkinson’s Terms

Our main goal at Charco Neurotech is to improve the quality of life for those living with or around Parkinson’s and reducing their symptoms with innovative technology.
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Steve Ford and the Evolution of Parkinson’s UK

We started the New Year with a fantastic opportunity to spend some time with Steve Ford, CEO of Parkinson’s UK.

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TheMoment (Now Charco Neurotech) Journey 2019

What an eventful year it has been for the TheMoment® Team, with emotional highs and exhausting lows for everyone involved. As the year draws to a close, we wanted to share our journey with you. (more…)

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Jon & Kay’s Journey With Parkinson’s

Jon was diagnosed with Parkinson’s disease in October 2017, but was living with symptoms for at least two years before then.

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