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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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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We hear from Emaan, Team Charco’s Science Communicator, on how her perspective has changed during her journey with us.
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One of our beta-testers of the CUE1 device tells us about their first week receiving and using the CUE1.
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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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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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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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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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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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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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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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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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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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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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We are incredibly excited to announce that we have now completed the report for our second round of user testing.
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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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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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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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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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, 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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“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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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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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”.
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.
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.
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.
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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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.
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.
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.
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.
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.
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.
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.
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.
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.”
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.
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 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.
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.
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.
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.
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.
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.
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.
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”.
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.
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.
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.
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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We started the New Year with a fantastic opportunity to spend some time with Steve Ford, CEO of Parkinson’s UK.
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…)
