Living with Parkinsons

Friends and family are regularly telling me that I look well and that they can see no evidence of degeneration, indeed if I hadn't told them, they wouldn't have known that I have Parkinson's. It is nice of them to say so.

And I wish it was true.

Now I'm not saying they are lying, but they are only acknowledging a small part of the truth. So for example, I rarely use a spoon when having soup anymore. It's so much easier to use a giant mug-like bowl and drink the soup. The shaking in my right hand now means that liquids in a spoon typically spill and I'm too slow to consume it in the traditional manner. It's kind that they pretend not to notice.

In fairness, however, I feel my decline more than they can see it. My right hand not only shakes more, which is visible, but the numbness in my arm extends further up and feels more intense. This is invisible and only I am really aware of it.

And I don't advertise.

Then there is the brain fog, that feeling of greyness, pressing down on your brain, keeping out the colours and sharp edges of life. Those that know you well, will probably notice. They will see that you appear mentally less sharp and if they also happen to be your wife, you'll probably be kicked out of the house, and down to the gym with instructions not to come back until you've worked off the fog.

And it works, I do feel mentally sharper, and more alert after some intense exercise. The numbness also retreats, the wife is a great believer in the power of exercise to slow the progression of Parkinson's and there is an increasing amount of evidence to support this. Unfortunately, the wife has an over-optimistic understanding of my willingness and capacity for exertion. I'm happy doing the gym, I can listen to blogs and music on my phone, but she wants me to do swimming, Nordic Walking, the Warrior Programme and Yoga. Not forgetting my physiotherapy exercises.

There aren't enough hours in the day and frankly, some of them entail making an absolute pillock of yourself.

And yes, I know I've opened myself to being the victim of some smart-arsed comment with that last sentence, but it's true and I'll just have to take the risk...........................!

Most of the issues that currently affect me to a greater or lesser extent aren't visible, they tend to be things that can't really be seen.

So in addition to issues I've already touched upon there is the declining quality of sleep, swallowing problems, extremely vivid dreams, a speaking voice that is getting quieter and Parkinson's anxiety.

Now some of these can be treated with medication. Which has varying levels of efficacy and some by therapy. 

And some, for some people, have no available treatment. They just have to live with it.

Now a confession, known only to my nearest and dearest. I have mentioned previously that I was finding my levels of anxiety worsening and the impact of this negatively affecting my ability to cope with the stresses of everyday life. Well, the wife got sick of it and signed me up for some counselling. Something I have always considered as an option for the self-obsessed. Something not suited to me. 

Well, how wrong was I! You get to speak about yourself nonstop for 45 minutes. Suddenly and literally for a period every week, it's all about me. And the audience listens carefully and respectfully. Or at least makes all the appearance of doing so. Which is enough.

I will confess I quite enjoyed it. I'd arrive at the office, sit down in a comfy chair and talk. And you know, putting to one side the enjoyment of being encouraged to be self-obsessed for a bit, I learnt a lot about myself and understood the impact of events that I had mistakenly thought had had no impact on me. Without going into details, I was able to rid myself of some deep-seated anger, resentment and hate that had gotten a hold of me and was still, in ways I hadn't noticed, crippling my life.

And was making my day-to-day anxiety worse.

Not everything has been resolved, but I feel a calmer person, less anxious more at peace with myself.

There is however onething about Parkinson's and its impact on me that gets me down and that is, for a whole host of kind and loving reasons, those closest to me keep making decisions on my behalf, that they believe are in my best interest.

And frequently involve me doing things I don't really wish to do. 

However, life goes on. Physically and emotionally I gently decline, Slowly  I hope and there are some victories along the way. The gym work does me good, beyond the impact on my Parkinson's. In some ways, I am fitter than I have been for years.

I'm still able to enjoy a pint.  Or three.

I have my friends, who are kind and put up with me.

And my wife's still hanging on in there, despite everything.

But like most people with Parkinson's the one thing I want, I can't yet have. And that's a cure. And along with that, the chance to live a normal life. There really isn't much point in being angry about the lack of a cure. 50 years ago my quality of life would have been so much worse, with fewer treatments available.

So I'm going to have a pint and a curry and count my blessings.