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.
I had intended to write this blog yesterday but, as is often the case, meeting a deadline has become a big challenge.
Movement disorder specialist Bas Bloem, a world authority on our disease, put it very well in a speech a few weeks ago (or, maybe it is a few months ago now) when he said: The Netherlands has 50,000 Parkinson’s patients, and that results in 50,000 different pathologies. But difficulties with motivation, planning and keeping to a strict schedule is something most of us suffer with.
So back to yesterday. I really had to get up early because my household help came at 8 a.m. and I like to be up and running by then. I therefore wake up at 6.30 a.m. to take prolopa (medication) in order that I can go to the bathroom half an hour later, because three years after my Deep Brain Simulation procedure, my muscles are again depending on their daily dose of prolopa to be able to work more or less normally.
After that I give myself half an hour of soaking in a nice hot bath, ending with a nice ice-cold shower rinse. After getting dressed and having breakfast, I was just in time to answer the doorbell.
The ‘never-going-to-do-again’ list
It all sounds so simple, but taking care of my children by myself (albeit part-time and even though they are teenagers and older now, takes a lot. Just planning, shopping, preparing food, washing and folding clothes, ironing and above all cleaning up is quite a challenge if you lose your balance when bending down and don’t have fine motor skills anymore so you have to give instructions when cooking. And if you do decide to do it yourself, you then have to clean the whole kitchen because half of it is on the floor, next to the plates or even on the ceiling.
The most difficult part is asking for, and especially accepting, help. It’s a slow process that took a lot of time for me because it means admitting that something you previously always could and did do on your own, is now on your ‘never-going-to-do-again’ list. The mental struggle with that is exhausting. But, actually, that’s Parkinson’s: accepting that certain things -such as walking, driving, writing, and preparing food – are no longer automatisms for us and it takes extra energy to continue functioning. Every step we take requires effort. Every word we write legibly is a victory over ourselves, and everything we do is a mind-over-matter heroic achievement.
Therefore, for all my fellow patients: hats off for everything you still do every day, but above all a big thank you to my AMAZING help team, you are fantastic! Have a nice day!
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 Glenn Carstens-Peters on Unsplash