Part 2. D is for Dystonia
No, I hadn’t heard of it either.
When I started running again, my left leg would be normal for a while and then do its own thing.
A friend of mine described it as though I was running with cerebral palsy on one side. Little did they know how close they were to the cause. I called it “trolley leg”. Because of my knee, everyone (including me) went to town on my back, knee, leg, nerves, ankle – anything related to my leg. I had scans on everything. And all the results showed that I was mechanically sound. But that took 18 months of frustration, false hope, staggering around with a locked leg and generally being a pain in the neck to my family.
Eventually I saw a neurologist at the National Neurological hospital for some nerve tests. After hearing my symptoms he told me that he thought I had Exercise Induced Dystonia. So the problem was up top rather than the leg. (Mechanically sound, mentally not so much)
Dystonia can occur independently from Parkinson’s, and it had already been suggested to me that it could be the problem. So I was then looking at brain training and plasticity courses. It wouldn’t solve the problem of my leg but would help me cope. By now the leg was spasming after walking for a few minutes and running was out of the question.
Shortly after this, I was also aware that my sleep was getting a lot more disturbed, and consequently my concentration was failing. My handwriting was getting worse – it has always been small, but now the pen would travel in fits and starts across the page. And I was suffering worse with constipation (I’d had it for years but luckily I love liquorice and fig rolls). The GP listened to my symptoms and referred me to the local hospital. And on 10th January 2019 I was given the diagnosis that changed my life.
I had Parkinson’s.
#parkinsons
#parkinsonsuk
#parkinsonsawareness
#parkinsonsdisease
#parkinsonssucks
#puckfarkinsons
#cureparkinsonstrust
Part 1. K is for knee
(Apologies for the bloody content). Today’s blog is in two parts and brought to you by the letters K and D.
Part 1.
K is for knee. My left knee. On 12th October 2016 I fell on it while running. It was my own stupid fault for not looking where I was going (my watch beeped at me – doh!). I still finished my run, after all, why not? I was feeling pretty invincible at the time, having just finished my first 50 mile race and was signed up for more. The knee really, really hurt. Even over 2 years later I can’t sit with it bent for long periods without it complaining after a while.
When, after a couple of weeks rest, I started running again something wasn’t right with my leg (and not just because it was my left leg 🤪). It was pain free, but not working properly. However the knee proved to be a bit of a distraction while trying to find out what the problem was. (More to follow in part 2). (And apologies to my friends who’ve heard this before but I’m starting from the beginning, which according to those who know, is a very good place to start)
Wot no dopamine?
To quote Joni Mitchell:
“Don’t it always seem to go
That you don’t know what you’ve got
‘Till it’s gone”
Well in my case I didn’t know I had dopamine. Until I didn’t have enough of it any longer.
On 10th January 2019 I was told I had Parkinson’s. At 49 that’s not exactly the best news I’ve ever had.
Parkinson’s. To me the only connection was that Michael J Fox had it. I’d read his autobiography years ago and promptly forgotten about it. Why should I worry? After all, isn’t it a disease for old people?
This is a blog about Parkinson’s (or my take on it anyway), research that I’m helping with, and my fundraising. It takes years to get drugs from lab tests into the public domain, and the likelihood is that any treatments that do come along will halt the progression rather than cure it, so I aim to raise funds to help those who follow me, and to raise awareness about the disease now.
Watch this space 😁
#puckfarkinsons
#parkinsons
#parkinsonsawareness
#parkinsonssucks