We all have our own unique blend of symptoms that are the building blocks of our personal journey with Parkinson’s. You may know others with the same condition and because of this feel you ‘get it’ when being with a person affected by this condition. You may understand some, but not all of what is our own and very personal journey.
I am a very upfront kind of person in everything I do. Basically, if I can do it and I actually do, do it, then I will talk about it. I usually tell most people that I interact with that I have Parkinson’s soon after we enter into whatever we might be doing together. If I am playing bowls, right from the start I will tell the person I am playing against that I may need a bit more time to decide on my shots etc, due to slowed processing. I am still recovering from my back surgery, so will advise that I can’t get down to measure and find it challenging picking up bowls without a bowls lifter. I can manage what I need to manage to continue to play with some equipment and some understanding. What I need from people is empathy, not sympathy. If I get a response like, ‘I’m so sorry’ when told, I usually tell them not to be sorry and that I can still do the things that I enjoy doing, like playing bowls for one thing and games that challenge my brain to work a little harder.
One thing that I don’t need is for people to decide for me, what I can or can’t do. I am currently trying to increase my exercise to help keep strong and strengthen muscles, but also to increase my stamina and hopefully shed a few kilos. Recently one of the other ladies in the club who is exactly 20 years older than me – we share a birthday – said to me that she thought that doing a full day of bowls on a Tuesday is too much for me and I should cut back. Far from cutting back, I am trying to increase not decrease my activities. It is too soon, in my book anyway for me to be cutting exercise back, not only for my Parkinson’s, but also for my general health and wellbeing.
I know at some stage I will need some physical assistance for showering and dressing, but as long as I can do this for myself I will continue to do so. The secret for me is to persevere and maybe make some changes to things that I do, like introducing a shower chair so I can shower myself and be safer. When I need assistance I will know and I will let others know as well.
The more open I am with those that I interact with, the more understanding they will hopefully be and I might open their eyes to the fact that while I may need to modify what I do at some time, I will carry on for as long as I can. If I need assistance, I hope that I can receive it with good grace, especially if assistance is needed to keep me safe!
My journey with Parkinsons 