This past week has been a strange one for me, as it’s marked the 15th anniversary of hearing four awful words: “You have Parkinson’s disease.”
Even though this event triggered a tumultuous, catastrophic change in my life, time since diagnosis seems to have gone by quite quickly.
My life has changed in so many ways – not all bad – but the fear of the future gripped Joan and myself that fateful day and the tears flowed for many, many hours.
On the day of diagnosis, several things happened at once:
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- My confidence shattered.
- My thought process went super negative.
- My ability to rationalise the world around me took a hammering.
I don’t remember how I drove home that morning to tell Joan the horrible news. I entered a space in my life that previously simply did not exist. I felt I would be stuck there forever, with no relief until I died. I was terrified I would soon become a burden to Joan (and Daire and Bronwyn), that our relationship would suffer deeply because my condition would deteriorate, and I’d become an “old man” way before time.
I found a piece of paper in my pocket and realised it was a prescription that someone must have handed to me as I left the clinic. When I went to the pharmacy to get the prescription filled, I was shocked at the number of drugs in my hands. I rarely took any form of medication before Parkinson’s, so to start taking all these tablets was a shock to the system.
I decided that I was going to ignore Parkinson’s.
I was only 44 and was in reasonably good shape and generally healthy – deteriorating neurological condition aside!
There are many ways to deal with Parkinson’s and I’m so grateful to be in a position to try as many of these things as possible
I took my tablets as instructed and tried to get on with life. I then began to notice that the tremor in my right arm, which sparked my two-year journey to a Parkinson’s diagnosis, was not going away and in fact was quite a problem when trying to get drugs out of a blister pack. This was the first bit of black humour I encountered – who was the genius who decided to stick essential medication for Parkinson’s disease into a blister pack?
The whole scene was quite hilarious – me struggling to get the drugs out of a pack made of plastic and tinfoil, my right arm shaking faster and faster, the tablets flying out uncontrolled, and most of them falling on the floor before I could catch them. It’s only funny because it’s true. In any case, I stayed with this prescription for a number of years, supplementing my medication with some exercise. My brother, Patrick, became my running buddy and it was becoming increasingly clear that I could run better than I could walk.
Ignoring Parkinson’s disease is, I’m sad to say, not really an option.
I ignored my neurological condition for as long as I could, but the deteriorating nature of this particular beast led me eventually to a crossroads – continue on a path that is ultimately going to end sooner rather than later, or try fighting back. The experience of exercise said to me that I needed to do more. At this point, roughly 2014, my appearance had visibly changed. I was beginning to look and walk like that 74-year-old man I first feared becoming back on the day of diagnosis. My career was in tatters because I increasingly felt unable to concentrate on my work, due to the 24/7 nature of bloody Parkinson’s. I was working in an environment that really didn’t understand the psychological impact of a serious neurological condition. On top of that, my consultant advised me that the stress I was under was seriously harming the natural dopamine that remained in my brain.
After much investigation, I was placed on my employer’s long-term illness insurance plan, so I no longer attend work. I also had my prescription changed to incorporate the drug Sinemet, which is the strongest drug available to slow down the creep that is Parkinson’s.
The impact of these changes has been incredible. The new drugs work very well. I cast a wry smile towards these ‘new’ drugs because the fact is, Sinemet was first prescribed around the time The Beatles had their first hit. That’s way back in the early 1960s. I wasn’t even alive then, but I can tell you I’m alive now.
In many ways, I feel very lucky despite the monster in my head trying to get at more and more of my brain. There is no cure for Parkinson’s, and I’m certainly not holding out for a cure any time soon.
There are, however, many ways to deal with Parkinson’s and I’m so grateful to be in a position to try as many of these things as possible. Obviously, my medication is important. Exercise along with the correct prescription is a huge problem… for Parkinson’s! The combination of exercise and prescription drugs really slows down deterioration. The more exercise I do, the slower the deterioration. I run, I walk, I dance… sometimes every day. I cycle, attend Pilates, log in to a virtual gym. Not always on the same day.
Who was the genius who decided to stick essential medication for Parkinson’s disease into a blister pack?
One of the most important and positively impactful experiences that I’ve taken part in, and continue to practise every day (nearly) is the voice training called LSVT LOUD (and the physiotherapy training equivalent LSVT BIG). Keeping our voice strong is essential as it makes sure we can be heard. Being heard means we can have a conversation, which is critical for social contact. These are programmes that every one of us living with Parkinson’s should be prescribed by our consultant in the same way that we are prescribed the drugs we need to take.
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So now I’m quite restless. I’m restless because we need action. It’s not that hard – there’s so much that needs to be done and there is so much that can be done, very simply and very easily. If people living with Parkinson’s could participate in the activities that already exist it would lead to a huge improvement in our ability to tackle Parkinson’s, and indeed, many other neurological conditions. I can only advocate and try to bring as much attention to what’s going on – or maybe, what isn’t going on. The hope is that politicians will listen to what’s being said, and take the necessary responsible action.
This bloody Parkinson’s is the fastest-growing neurological condition on the planet. We know this to be true. We must take action now before it becomes an even bigger insurmountable situation.
I’ll never forget the day I was diagnosed.
I’ll never forget that feeling of utter hopelessness.
So much has changed in 15 years, right back to that first fateful day. It’s a day to forget, even though I’ll always remember it.
- Gary Boyle is on the board, and is vice-president, of Parkinson’s Europe