World Parkinson’s Day
World Parkinson’s Day is all about understanding and getting to know people with Parkinson’s. As well as and the people in their lives. Sadly, many people living with Parkinson’s are far too familiar with loneliness and feeling left out. Add to this the Coronavirus pandemic, social isolation and physical distancing has intensified emotional isolation that was present for many. The chances are you will know or meet someone with Parkinson’s. Everyone needs to sit-up, take notice and understand what Parkinson’s is and how to enable those living with it to make the right choices for themselves.
This year, The Parkinson’s community has been busy collecting and creating a map of stories – working with Parkinson’s UK and The Cure Parkinson’s Trust to help people get to know Parkinson’s. I am honoured to have Claire Jones (known to many as DJ Claire) sharing her lived experience of Parkinson’s.
Claire’s Story for World Parkinson’s Day
My name is Claire and I am 40 years old.
I was diagnosed at 35, and this is now the fifth piece I have written on World Parkinson’s Day. It doesn’t get any easier, as I have once again tried to find the most important thing that I can tell you about this manifestly horrible disease (Leyla can attest to this by the lateness of receipt of this blog!)
- Should it be that every time you meet someone with Parkinson’s you meet a different type of Parkinson’s?
- Should it be that there are over 52 symptoms (and counting) that make it one of the more complicated matrix diseases?
- Should it be that its incidence is growing at an alarming rate?
In fact, like just continuing my day-to-day life, over the years it has got harder. As the depths of my understanding of Parkinson’s becomes broader and more nuanced, and I meet more people within the community that deserve a voice, it makes me determined to get this important piece right.
COVID-19 and Parkinson’s
Added to this mix is the fact that this year’s Parkinson’s Day is rightfully overshadowed by the waves of pain that have been rolled around the world by COVID-19. The disease I suffer from, which was previously being called a pandemic by the world’s top neurologists, certainly pales in the short term by comparison. You can read more here.
For many years, as a consequence of Parkinson’s, I have more often than not removed myself from social situations. Either due to embarrassment at some of my less appealing symptoms or because of the inability to participate in a way that, I felt, would not inconvenience other people. So, writing this piece at this time also feels in some way appropriate.
A lesson that I guess most of you may have already learned is to ask for help if you need it. The worst people can do is say no. Following this method has got me as far as speaking in the European Parliament. Who knows where you may end up?
It’s also difficult finding yourself in a situation where you don’t have bearings. For me, this can be the daily changing symptoms. I do not know whether or not my medication will work or not, which may depend on hormones, what I’ve eaten or what I haven’t. It feels sometimes like it could be dependent the “alignment of the moons”. Uncertainty is never great, and saying that you accept what you can’t control is easy; the reality is quite hard, so don’t punish yourself for not doing so.
In brief, appreciate what you have and preserve it
Did you know that the easiest way to do this is to exercise? (I wish I could say something like chocolate biscuits here). There are hundreds and hundreds of journal articles about scientific studies into the fact that exercise can act in both neuroplastic (creating new ways of working) and neuroprotective ways. There are plenty of examples of these types of exercise to be found on the internet, but the best place specifically for Parkinson’s is always the Davis Phinney website, in my opinion.
Look after yourself during this period, keep yourself safe and, apart from that, take advantage of this opportunity to start looking after your brain, as all we are is a collection of firing neurons.
If you would like to kickstart your exercise regimen, help people with Parkinson’s and get a Guinness World record, on 11th April workout for 5 minutes with American Ninja Warrior Jimmy Choi: https://www.facebook.com/335394323656202/posts/786567785205518/
Long-term, we need a cure as the best drug we have is over 50 years old, only masks our symptoms, and the side-effects often outweigh the benefits of taking it.
To help, please contribute to the Cure Parkinson’s Trust: https://www.cureparkinsons.org.uk
If you would like to find out more about Claire and her work as a DJ please check out www.radioparkies.com (a global radio station based in Belgium) for the Parkinson’s community, go to www.facebook.com/DJClaireMJ