The well-documented, personal trials of celebrities such as Billy Connolly, Neil Diamond and Michael J Fox have done much to raise awareness of Parkinson’s — a condition that’s most closely associated with tremors, spasms and cramps.
That’s why, when Scott Wilson’s scan results led consultants to conclude in 2008 that the slight tremor he’d been experiencing in his left hand and leg, and the loss of his sense of smell, were as a result of the onset of Parkinson’s disease, he was accepting of the diagnosis, even resigned.
It was a blessing, in his eyes, that it wasn’t motor neurone disease, and he was grateful it wasn’t cancer.
“To be honest, the diagnosis didn’t really affect me at all,” said Scott.
“I never knew much about Parkinson’s. I always thought it was older people who got it. I thought: ‘It could be worse. I can still live with it’.”
Scott was 40, had a daughter and a son with his long-term partner, had built up a successful horticultural business and was a retained fire fighter.
As the condition progressed, and the nighttime spasms, cramps and jerking seriously disrupted sleep, he thought it only fair that he sleep in the living room.
The first drug he was prescribed was commonly used to treat restless leg syndrome.
But its seemingly routine administering was to have severe, psychological side effects on Scott – and he was to feel the devastating consequences it would have on the aspects of his life he held most dear for years to come.
“It gave me an online gambling addiction,” said Scott, whose previous gambling habits amounted to nothing more than pressing a few coins into the bandit in his local pub.
“I gambled £10,000 in a month — credit cards, debit cards, you name it. I honestly didn’t realise I was gambling as much. £50 was like a fiver in my head. I was getting such a buzz from it – euphoria.
“One month into it, I got my bank statement and my business statement through, and there it was in black and white — the money was all gone, more or less. I phoned up my nurse that same day and she told me to stop taking it right there and then.
“I had to take advice, and that advice was to go bankrupt. I had doctors, GPs and consultants write letters to the bank to see if they would write off the debt because my gambling addiction had been caused by a prescribed drug. But nobody was interested. I sold my business and went bankrupt. And that put a further strain on my relationship.
“Two years into my diagnosis, I ended up splitting up with my partner of 17 years. That was not all due to Parkinson’s, but it didn’t help.”
Scott’s medication was immediately changed to Sinemet – a drug that has been on the market for 60 years and one that he still takes to this day.
But as his tremor became more pronounced, his medical team were to suggest a fairly new, groundbreaking, invasive treatment. And he insists that his decision to agree to the procedure was game-changing.
“I didn’t think it was that bad a tremor, but my consultant and Parkinson’s disease nurse clearly thought otherwise,” explained Scott.
“I was two or three years in, and they suggested deep brain stimulation, where they put two electrodes through your skull into your brain, connected by a wire that runs under your scalp, down your neck and into a pacemaker battery in a plate in the shoulder blade. It gives out electric pulses to mimic dopamine.
“When I was told about deep brain stimulation, I spoke to my gaffers at the fire brigade and they offered me a year’s sabbatical to see how it was going to be after the surgery. But the way I looked at it, I couldn’t have trusted myself up ladders because, after you’ve had the 10-hour operation, you’re not allowed to drive for seven months.
“I had 10 years’ service as a retained fire fighter. I told them they’d be better using the year they’d offered me to train up someone else. And I retired.”
Although Scott can experience the side effect dyskinesia – involuntary, erratic, writhing movements of the face, arms, legs or trunk – he says the benefits of the procedure greatly outweigh any negative consequences.
“Deep brain stimulation stopped the tremor altogether,” said Scott, 53, who blames his Parkinson’s on the chemicals he used— often without wearing a face covering – throughout his 15 years in the horticulture industry.
He said: “It was like night and day. If I switch the battery off, I cannot sit still.”
Scott’s attitude and outlook on learning, 12 years ago, that he has Parkinson’s remains resolute today, and he enthusiastically channels the dwindling energy he has into helping other younger people accept that they can continue to have a fulfilling life with the condition.
He shares his South Lanarkshire home with his five-year-old springer spaniel cocker cross, Clover, who gives him an incentive to walk up to two miles every morning, and cuddles in to keep him company in the dark, cold evenings.
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Lockdown has been isolating for Scott, who hasn’t been able to see as much of the three grandsons who call him Grumps as much as he’d like.
He has volunteered as a buddy at Younger Parkinson’s (YP) support events for a decade, at which he has given presentations to up to 120 people on his experiences of deep brain stimulation.
At one of the early sessions he attended, he was the first to stand up and declare that his medication was responsible for giving him the gambling addiction that cost him so much more than the money he blew.
“Nobody used to talk about things like that,” he said.
“At one of the YP events I went to in Stirling, someone who was giving a talk just happened to say something about the side effects of some of the drugs and asked if anyone had experienced them.
“I decided to stand up and talk about my gambling addiction. Two or three other people in that room then said they’d had the same problem, but never wanted to speak about it before. It was amazing.
“At the YP events, I felt that I could help people by talking to them, and some have said I’ve made them feel at peace and glad they came.
“I find it easy to speak to folk face-to-face, to calm them down a bit and make them look at having Parkinson’s through a different pair of eyes.
“The gambling addiction was just one of those things that happened. There could be other folk out there struggling, too. I wanted to let them know that there is light at the end of the tunnel. The world does not end because you are in debt.
“I’m not in debt any more, I’m not bankrupt any more. You have to get on with life as best you can.”
He and fellow YP buddie David Allan compiled a list of hints and tips for people who’ve been recently diagnosed – practical advice about everything from two-for-one offers for blue badge holders to getting help with Council Tax.
But they also share lived experiencing, from shaking talcum powder inside socks to shave 30 minutes off the time it takes to put them on, to munching two bananas before bedtime to reduce night cramps.
“I still cannot smell anything and I’ll never get my sense of smell back,” said Scott.
“I take a few drugs for the pain at night, and I cannot get a decent sleep – three hours at best.
“But, as I tell folk, Parkinson’s is not a death sentence. It’s not the most comfortable at times – but it is liveable.”