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.
Confronted by the challenges posed by 2020, many of us have been compelled to consider the things we really care about, what truly matters to us, and the people from whom we draw solace.
This is especially true for the team at Charco, who have been overwhelmed by the help they have received from those in the Parkinson’s Community. Contributors with lived experience of PD have been instrumental in the development of the CUE1, and Charco’s progress has only ever been made possible through people kindly donating their time and energy.
With this in mind, we took to Twitter, asking:
‘Dear Parkinson’s community, do you have anyone who has been special to you this year? Family, Parkinson’s nurses, researchers, doctors, or pets? Anyone! Please let us know! We are putting together a blog post and would love to hear from who has been special to you this year :)’
…and the response which we received was astonishing! Our question spurred people into expressing gratitude towards people in all aspects of their lives, including healthcare professionals, family members, and, of course, their pets :). What was particularly warming to see was the breadth of support which people have experienced. The reaction to our tweet highlighted just how interconnected and caring the Parkinson’s community is, and also gave an insight into the challenges which many living with Parkinson’s may face.
Family & Friends
It was warming to see so many individuals express their affection for their spouses and loved ones, who have been there every step of the way through a tumultuous year. In his message, David addressed his wife Helen, telling her that ‘when we first met, nobody knew where we would be 30 years later’. In thanking Helen, David focused upon the everyday. Thank you, he wrote, ‘for bringing me a cup of tea every morning (because I would spill it)’, ‘for doing up the annoying little buttons […] on shirts’, ‘for having the patience to stop, when I’m frozen to the spot, count to three and get me going again’. For many living with Parkinson’s, it is the most mundane of tasks that provide the greatest difficulty. This is, in part, what drove Charco’s development of the CUE1. We understood that it is the ease of walking, of being able to write by hand or holding that cup of tea, which makes the world of difference in living independently. This, too, shone through in the messages we received. People with Parkinson’s wanted their loved ones to know that the day-to-day assistance, the support given just by living every day together, does not go unnoticed.
Richard Underwood, a well-known advocate for a better understanding of PD, also got in touch after seeing our post. In his message, Richard chose to express appreciation for his wife Helen who, since his diagnosis, has been the ‘one person stood by [his] side’; ‘I wish to thank her for her support on my Parkinson’s journey, where we have met so many inspirational people’, Richard continued. He also raised an important point, noting that Helen ‘is not my carer, as we are carers for each other, due to the bond of love we have’. As many people who manage long-term health conditions will know, support is a two-way street. Most people with PD would be unhappy with simply being assigned the roles of ‘carer’ and ‘cared for’, not least because this is an unrealistic portrayal. Even in our own experience, Charco has been met with countless stories of people providing mutual, selfless care to one another.
Indeed, we were also contacted by Barbara, who personally thanked Richard as well as members of the Charco team in her message. Barbara told us that ‘the most helpful people to us have been Richard Underwood, Alex [our operations manager], and yourself [Lucy, our CEO]’, and that she had loved Charco’s ‘virtual programs, trying different gadgets’ such as the CUE1; ‘you have given us friendship, hope, and care’. Thank you Barbara! The community which Barbara, Richard, and many other generous people have formed around Charco’s work has been invaluable, and we are always eager to hear from the people who have assisted us along the way.
We also heard from Matt Eagles, an avid public speaker and the founder of Parkylife. ‘Dear Viv’, Matt wrote; ‘you are my sunshine every day, you are the reason I smile when I wake up in the morning and when I go to bed at night, you are my absolute rock. I love you!’. Matt, a stalwart of PD awareness and campaigning efforts, has previously appeared in our Charco blog, which you can read more about in this article. It has been great to learn even more about the lives of those within the PD community, and we have been overwhelmed by the warm reception our question has been met by.
Fundraising
Many people also wanted to draw attention to fundraising efforts, which they and others close to them had been involved in. The scope of these fundraising events was impressive, to say the least! Neil chose to thank his ‘amazing wife’ Clair, who created Crafting 4 Parkinson’s, so that she was able to continue her efforts even through the pandemic, and additionally add ‘a little sparkle and bling to people’s lives’. What a great idea! We also heard from Dan, who gave a mention to his ‘daughter Karen-Amy [who] hosted her third annual Parkinson’s Superspiel curling event’, in an effort to raise funds for Parkinson Canada. It was great to learn just how varied and resourceful people are in their fundraising endeavours for PD organisations!
Exercise
This leads us onto another recurrent theme in these messages of appreciation: physical movement. For many, this is a crucial aspect in the management of their Parkinson’s symptoms. Maintaining as high a level of mobility as possible is one of the best ways to combat symptoms such as hypokinesia (diminished movement). Sabela, for example, chose to thank her ‘pilates teachers’ at PilatesWorks NYC, and Angela, her ‘yoga wonderwoman’! Indeed, in a year when it has been harder for most of the world to exercise, it has been so encouraging to see how the Parkinson’s community has adapted to these challenges. There has been an abundance of virtual Parkinson’s exercise classes, conducted over platforms such as Zoom, offered to people around the world.
Healthcare
For everyone, the recent pandemic has also reaffirmed the importance of another group: healthcare professionals. Throughout the messages we received, people showed just how highly they regard the nurses, doctors, physiotherapists, and other professionals involved in the treatment of their PD. In one response, Christopher chose to celebrate his movement doctor, and his neurosurgeon: ‘Without their support […] my YOPD would have crippled me’, he movingly wrote. Of course, as we previously mentioned, support is a two-way street! Dr. Indu told us that she was thankful for her ‘sweet patients and their devoted caregivers’ this Christmas.
Through what may be a particularly difficult Christmas for many, it has been heartening to see that people still want to bolster those close to them, and acknowledge the compassion and warmth which they have received over the course of this year. After receiving your messages, we at Charco also felt compelled to make our own contribution. With this in mind, we have put together this Christmas appreciation video clip, which we hope you will enjoy! From everyone at Charco, we hope that you have a safe and peaceful holiday, and we look forward to hearing from you in the New Year. :)