Paul Mayhew-Archer: “laughing at my Parkinson’s”
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Our readers reflect on a difficult year, discuss how Covid-19 has affected Parkinson’s community – and share why they remain hopeful for the New Year
After a crazy year in which everything that could go wrong did go wrong, all of us are looking forward to new beginnings, new healing, and new reasons to get excited and feel alive again. Although many of us have suffered a great deal and experienced many losses that will not soon be forgotten, we must remember that after a season of pruning there is greater flourishing.
Two things I’ve learned since living with Parkinson’s disease are acceptance and gratitude. The only thing we can count on in life is change, and this year has proven to be more unpredictable than any other time in our lives. Because of this, I am grateful for even the smallest of blessings. I am especially grateful for the global Parkinson’s community, and for friends and loved ones who made us laugh, inspired us, prayed for us and with us, and encouraged us to keep fighting one more day.
My hope for next year is that we become greater Parkinson’s warriors – that we learn to fear less and live more fully by standing still to hear our quiet inner voice say: “Yes, you can!”
Peru went into strict lockdown in March. Thankfully cases per day have dropped and restrictions have reduced, but Parkinson’s community is frustrated by the lack of access to doctors, clinics, drugs, physiotherapy and exercise facilities. They feel more anxious, which isn’t surprising considering Peru’s high rate of death from Covid-19, and many in the community are distressed by advancing symptoms that affect their confidence. Isolation is common – support groups have been hard to move online as few know how to use the technology.
My plan is to set up a Parkinson’s disease exercise group in my community to help improve symptoms post-lockdown. My hope is that I can find physiotherapists to offer webinar training in Parkinson’s disease. Any help is welcome: I need a group of professionals who want to expand services for Parkinson’s disease in their clinics. I’d also like to train community leaders to organise support groups, and I’d like to see people from Peru sign up for the World Parkinson Congress in 2022.
Personally, I’d like my gymnastics facility to reopen so I can do more neuroplastic training in 2021. And my New Year’s resolution is to climb a volcano.
I think Parkinson’s community has grown stronger and closer together over the last 10 months to date. I’m certainly more in touch with people in Parkinson’s community than I was this time last year. I think that there is a strength that people with Parkinson’s have and you can see that in the support that they’re giving one another and particularly to the charities that are making huge efforts to help us. Certain cases brought out characteristics that I didn’t expect in some people. From wing walking, to walking Hadrian’s wall in Scotland, to opening conversations and even dancing on Zoom, the creativity and versatility of Parkinson’s community shone through. I truly hope it continues.
I hope that Parkinson’s community approaches the New Year 2021 with an open mind and open hearts. Ready and able to accept a diagnosis of which we have little to no control of but realising that if we set goals to achieve, move more and exercise, that simple action could slow the rate of this disease and give you time to spend more precious moments with your family, the people you care for and allow you to live your life to the fullest it can be. There is hope and optimism and we should seize that opportunity with both hands and take it as far as it can go.
Parkinson’s disease can lead to isolation for a number of reasons – difficulty getting around, fear of symptoms being noticed, loss of independence. Now add to the mix the need to shelter at home, loss of visits from family and friends, inability to attend support groups, and the social isolation that occurs as amenities close around us. This isolation is compounded by the increased difficulty in receiving ongoing care from allied health professionals, disrupted exercise routines, cancellation of fitness classes and, in many areas, replacement of in-person medical evaluation with telemedicine appointments.
Many in our community are suffering due to the restrictions that this global pandemic has brought. The community as a whole has suffered with an inevitable slow-down in Parkinson’s research. Clinical trials have been delayed, fundraising that supports the search for better treatments and a cure has been affected. As with most diseases, advocacy efforts have been eclipsed by the necessary focus on battling the Covid-19 pandemic.
As we near the end of this difficult year, I still have hope for the future of Parkinson’s community. For 2021, I hope our search for Parkinson’s biomarkers draws closer to success, as identification of such a test will revolutionise diagnosis, management and research. I hope our understanding of the cause of this pervasive illness progresses, as should the search for disease modifying treatments.
But most of all, my wish for the upcoming year is that those in my Parkinson’s disease community recognise that until the cure for this disease is found, quality of life is most important. We must continue to educate ourselves, practice self-care, build our management and support team, and participate in vital research. We must optimise our quality of life and in turn, give back to this inspiring community.
During the first lockdown in Belgium, we had the most beautiful spring – it was like a bonus holiday where we could reflect, relax and balance family time. I did some exercise to stay active – rope skipping in my garden, running, online sessions with the physiotherapist. I loved walking through the city. Things were not too bad, with the exception of home-schooling and the stress of grocery shopping.
The second lockdown was very different. I lost the drive to continue my exercise. The weather was rainy, and I stayed inside missing my cardio and natural production of dopamine. I felt my legs getting weaker every day, my back pain became unbearable and I started crying for no reason. I knew I needed a lot of time to recuperate – I did not dare to get back to the physiotherapist in such a bad shape!
This evening, a conversation with my youngest daughter made me realise even more that I have to stay strong and be there for my kids. They need their mom. So, I have a very strict plan in my head for the coming year: invest in my health.
My New Year’s resolution is half an hour of exercise on the cross trainer before my day starts, regardless what the weather looks like. And to drink more water.
The global pandemic has hit us all hard in one way or another, mainly by its restrictions on us spending time in the close proximity of others, travelling on holiday or in many cases earning a living.
For those physically challenged due to Parkinson’s disease, this social distancing has compounded the isolation we already experience. We’ve seen our clinicians much less, if at all. We’ve carried the anxiety and worry of becoming ill with the virus and what that might mean for us. Some have experienced the tragic loss of loved ones and not been able to say goodbye properly.
Many of us have been saved by the wonders of modern technology – Zoom, Microsoft Teams and Houseparty have become our new best friends as they have helped us to gather virtually. What has been amazing is the kindness of others as communities work together to keep everyone safe.
My hope for 2021 is that the global community uses World Parkinson’s Day on 11 April as an opportunity to truly unite in support of each other, and to raise awareness of Parkinson’s disease community’s needs for international political and research agendas. I hope that there is increased collaboration resulting in significant advances in Parkinson’s disease treatment.
My New Year’s resolution is to try and play my part in driving that united vision. In the meantime, it’s for me to own my Parkinson’s disease. I owe it to myself, my husband and my children to keep as well as possible for as long as possible – so I guess that means more time on the spin bike! Happy New Year all.
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