I try my best to be positive and to do as many things as I can to give me the best chance of a good life as someone with Parkinson’s. A Psychologist I work with once said to me that I shouldn’t make my life all about Parkinson’s. Easy for her to say, but difficult to do in reality.
What I manage to do most of the time is just get on with life and live in and enjoy the here and now, rather than focusing on the future, whatever that looks like. However, there are a number of things directly relating to my Parkinson’s that I need to do in order to have the longevity and maintain a reasonable level of ability with this condition.
At the moment, I am trying to go to the gym at least twice a week. Then, I have also this week started going to Aquarobics, which surprised me by being quite fun. Today, I met with my Speech Language Therapist and she has given me vocal exercises and other exercises for me to do three times a day.
On top of all this, I want to fit in time with my family, my husband and friends. I want to have time to ride my bike, which is something I enjoy. I want to be able to cook nice meals for myself and my husband. Go to the movies, to concerts and out for dinner. There just doesn’t seem to be enough days in the week for all the things I am supposed to do for my Parkinson’s or for the things I want to do as a person. The things I do for my Parkinson’s are important. However, the things I do for myself and with my family are also important. I don’t want this thing to swallow up all of my life. I want to be able to do things that I enjoy as well as things I need to do, to have a life that I can enjoy. Sometimes it feels like a daunting task and a huge responsibility knowing that if I don’t do enough to keep active and moving my body, that I may progress quicker if I don’t exercise. I don’t want to look back and think I should have/could have worked harder. But, equally I don’t want to look back and think ‘I did my best with my Parkinson’s exercises, but didn’t have any time left to enjoy my life!’
Having achieved a longer life through exercise will be meaningless if that life is all about Parkinson’s and I don’t take the time to enjoy being with the important people in my life and doing things I enjoy.
So, it is easy to say ‘don’t make your life all about Parkinson’s’ but maybe harder to achieve. It’s always easy for an outsider – a non Parkies person – to give advice, but it is only someone who is also on this particular journey who is really equipped to understand and give advice.