One thing that has always resonated with me, was what Clyde Campbell, founder of The Shake it up Foundation said to me when I was first diagnosed with Parkinson’s Disease. “It is important to understand that this is the start of the journey and that you can work on how you function with Parkinson’s to the very best of your ability, it is not the beginning of the end.”
I often reflect on Clyde’s fine words as I try to find a sweet spot between sleep, exercise, diet, medication, the meds side effects and the advice of my wellness team. The difficulty in all this is that just when you think you have nailed it and you have had a really good day, the next day, for no reason, is just terrible. You think that you have done everything according to schedule, but whammo, the meds are just not working. The best way that I can try and explain this is, it is as if I am covered with a thick wet blanket. All I can do is shuffle and shake between commitments and keep on believing that it will all be better soon. I could take more medication but that increases the horrible side effects of dyskinesia. A frustratingly benign involuntary movement of my head, hand and foot. So in between the Parkinson’s tremor, and the dyskinesia, it is no wonder that I stay close to home.
I was strong and fast. The speed of how quickly I could get in, score multiple shots on my opponent, the move out of range, all in a blink of an eye, without a hand being laid upon me, was just something that I took for granted. I thought that I would always be that way. I was a fast mover and an even better fast talker. I used to say “the whole world is on go slow drugs” just because I moved at a fast pace, no matter what I was doing.
Fast forward 30 years, and that life seems like it was another life. Being diagnosed at 54 with a chronic and progressive neurological illness does speed up one thing, and that is, it puts how I run my life, and once you get a grip on this is really happening, into perspective. I have to adjust and reinvent myself not daily but minute by minute. I try to find the humour in it all and laugh at myself, posting as many funny photos of myself on social media as possible. It is very human, I am not Super Man any more.
I work out as much as I can. Walking is a treat and I do as much yoga and Pilates as my body allows. I meditate every morning. This is a gift as I sit with no movement at all. I have a reprieve in the mornings, it is as if, my body has forgotten that I have PD. So, I take it and use the time for deep reflection, savouring every second. I am planning on doing a 10-day silent meditation retreat mid Feb. I wonder if my body will let me. Life must go on.
Most afternoons, no matter how I am feeling, I head into my private dojo, turn up the music and punch and kick the bags and ride the stationary bike. It feels great to be doing this, I feel alive and a little dangerous. I am flying and no one can stop me.