This World Parkinson’s Disease Week, Veerle will be providing regular blogs about her experiences as a Parkinson’s patient. Diagnosed 11 years ago, Veerle will describe some of the daily challenges of life with the disease. Since no two Parkinson’s patients are the same, Veerle speaks only for herself, however many of the issues she describes will be familiar to many people.
For almost a month now, there have been a lot of us ‘bunking’ together in our ‘digs’.
Several of us are finding that very stressful and left and right there’s grumbling. We all try to make the best of it, but it’s a bit easier for some than others.
The ‘nice’ thing about this situation is: it’s the same for everyone. Nobody can go to the sea. Nobody can go to the Ardennes on holiday. The amusement parks are closed for everyone.
And call me selfish perhaps, but somehow this gives me a sense of calm.
When we are all so restricted in our freedom, one stands out a little less as a person with a disability.
As a Parkinson’s patient, Easter holidays are normally pretty stressful. I would like to do something fun with the children. I dream of a holiday. But, even a day trip to the seaside is quite an undertaking and I have to start planning weeks in advance. Ideally, I would go on a day when I am ON. [For those who don’t know Parkinson’s Disease very well: patients are ‘on’ when the Parkinson medication actually works and one can function normally]. But, I can drink as much water as I want, eat healthily, do my daily exercises, and yet, why the medication or Deep Brain Simulator works or doesn’t is a total mystery. Everybody has their theories, their own experiences and advice, but nobody agrees.
Similarly, everyone has his or her opinion about the reason, cause or remedy for Parkinson’s Disease. The scientists are working hard on it, but for now there is nothing more that can be done other than symptom management.
Carpe Diem!
As such, we enjoy the good moments, even more! Like cream: double & thick and the cherry on top that we were keeping right at the back of the fridge until the weekend is now something we savour daily. With a little biscuit. We eat well, of course, and the ice cream always afterwards. Ha! Who cares?!
Because right now, I can. Because it’s those little things that one really enjoys.
Because not everything is possible, or necessary and because memories are being made right now. Not tomorrow. Not the day after tomorrow.
And everyone is going to have get rid of those corona-kilos, right?
Veerle was diagnosed with Parkinson’s Disease in 2010, at the age of 37. She is a happy mother of four children and a very active and engaged person. She took part in a European training programme to be able to represent patients in various forums and is co-founder of Eupati Belgium, an organisation that enables patients to be involved in pharmaceutical research and development. She works as a volunteer at Belgium’s RaDiOrg, which represents people with rare diseases. She quickly reached the maximum allowed dose of medication to control her Parkinson symptoms, and underwent a Deep Brain Stimulator (DBS) procedure in 2017. She is very grateful for the improvement she has experienced, is enjoying life as much as possible and is hopeful for the future.
Photo by Gayatri Malhotra on Unsplash