Parkinson's and COVID-19: Daily Life in Lockdown
19 May 2020
Daniel, a member of Carenity France, is 61 years old. He is married, a father and a grandfather and is living with Parkinson's disease. On disability since 2016, he remains very active. Even during lockdown! How has he spent his days? What has he done with the French Parkinson's Association? Is he worried about the lockdown? How is his neurostimulation going?
How are you and how have you been experiencing the lockdown?
I am the delegate of the Bas-Rhin region for France Parkinson and therefore I have been very busy! France Parkinson has set up a special website during the lockdown. It is a platform that is a source of ideas to be implemented both culturally and in sport. So I kept in touch with the hundred or so members and we shared challenges and games. Such as the creation of a book "Sans queue, ni tête" ("Neither heads nor tails") where each person adds a sentence in turn. Or the creation of a photo album on the lockdown where everyone could express their feelings. There was one person who put pictures of deserted Strasbourg, another who contributed poems, another shared drawings, and another put photos of board games with his wife, etc. I proposed cooking recipes and there was also origami.
And then I also did some painting, sculpture, poetry and worked on a future book. Without forgetting, of course, virtual visits to museums online. There was almost too much to do! Besides, we are lucky to live in the country with a garden and swimming pool, and the weather is very nice.
Daniel and his wife, on their last holiday before the lockdown, in Lanzarote (Canary Islands, Spain).
Did you set up a "schedule"?
Definitely no schedule. That is the best solution for doing nothing. I had set it up when I stopped working in 2016 and after a week, I threw it away. I felt too guilty when I didn't stick to it.
Regarding COVID-19, are you concerned? Are you worried about the end of the lockdown?
I sure don't want to catch it! I respect the barrier measures, I stay as far away from crowds as possible and avoid going out if it's not essential. You have to remain vigilant without worrying too much at the same time. It's true that it's a balance to be found. Right now, we have to see friends soon and we get to see our grandchildren on the weekends. We can't wait to catch up with others, but it's true that we're still having doubts. We say to ourselves, the virus is going to hang around somewhere and it may catch me. But we mustn't let caution get in the way of what we want to do. This summer, for example, we've booked a campsite by the sea in the South of France and we hope to go there.
Have you had any access to care in the last two months? And since?
No, I haven't needed it. I just had a teleconsultation for a dental infection. And since the end of the lockdown, I've been seeing my physical therapist. But the appointments have been very complicated for both of us. He has to disinfect his hands, both of us have to wear a mask (they're so hot to wear) and then he's in scrubs... It's really not practical.
In your previous testimonial for Carenity*, you told us how neurostimulation changed your life. How are you doing now?
Yes, it is an operation that consists of inserting two electrodes into the brain and supplying voltage to one of the 4 pads on each electrode until you get the best response in terms of symptom reduction.
It's been a year since I had the operation and it's allowed me to rediscover my dreams of continuing on the road to Santiago de Compostela. I was very enthusiastic but I'm starting to have speech problems. I used to speak very fast before and now it's worse. I stutter more than before. So my speech has deteriorated, so has my walking. I'm afraid the disease is progressing. But I have an appointment in hospital in a fortnight to readjust the blood pressure settings. Some people take two years to find the right setting, maybe that's all it is.
*Find Daniel's first testimonial here!
*Daniel has also written a book on Parkinson's, Parkinson, ma renaissance grâce à la neurostimulation (Parkinson's, My Rebirth Thanks to Neurostimulation), published by the Pantheon Editions, in which demystifies the operation and recommends that eligible people have it done whenever possible.
Many thanks to Daniel for agreeing to share his experience again with us on Carenity. And you, what state of mind are you in right now? Have your symptoms evolved or changed during the lockdown?
Take care and stay home!