Tarbet man pleads for better guidance on Parkinson's disease

Two years ago, Tarbet man Colin Williams was diagnosed with Parkinson’s disease, just four months before he was due to take early retirement at the age of 61.

Together with wife Sue, the couple have since taken the fight to the degenerative condition, despite the challenges they faced in understanding its effects.

Now, they say more must be done in Helensburgh and Lomond to support people living with the disorder.

“Near the end of 2016 I started to notice a tremor in my left arm and hand”, Colin told the Advertiser.

“I just put it down to leaning on a nerve from resting my arm on the edge of the chair.

“I went to see my GP a couple of weeks later and on two occasions I was told it definitely wasn’t Parkinson’s.

“I then saw a consultant in 2017 and he made me do a walking test, turn on taps, pull out lightbulbs – standard tests for people with Parkinson’s.

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“Through these tests they found that I had early onset of the disease, which came as a little bit of a shock, although Sue suspected it.

“In November 2017 I had further consultations on the NHS. They told me that there were other factors which I had probably been living with for quite a spell, like restless legs, poor sense of smell, change in moods.

“These are not necessarily noticed by yourself, but when you start to research Parkinson’s you realise that, actually, I’ve had that for a number of years.

“I am still my usual self, but to my family and friends, they notice the subtle changes.

“There was no information out there provided by the GP. We have had to push all the way to grab all the information we can.”

Sue added: “When you know where to go there’s lots of information available, but what we found initially was that there was no signposting when he was first diagnosed. We had to push for that information.”

Colin moved to Scotland for work in 2012 and settled in Tarbet in 2014, and the couple have had to put their post-retirement plans on hold as he continues his daily battle with Parkinson’s.

He said: “You get told that you will not die as a result of Parkinson’s, but you will die with it.

“Life had been all about work, work, work and not about pleasure and relaxation.

“It stopped us doing what we thought might have been doing in retirement, taking off on holidays and enjoying it.

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“In the first year after diagnosis we researched Parkinson’s and it actually took up our lives. In some respects I was busier then, than when I was working.

“Now, rather than adapt our lives to Parkinson’s, we try to maintain a normal life as much as possible, but it’s a fine balance.”

The couple organised a ‘Ping Pong for Parkinson’s’ event in Arrochar last Saturday, attended by local MSP Jackie Baillie, and smashed their fund-raising target by making more than £2,000.

However, they are urging health chiefs, both locally and nationally, to do more to support research into the condition and offer better advice to sufferers.

Colin said: “I go to a Parkinson’s support group in Helensburgh which holds a meeting at the end of each month and has people at various stages of the condition.

“It would be great if there were more things to do. We’re prepared to travel and can drive, but for the people in Helensburgh it’s very difficult. Other than the support group there’s nothing else to do.

“Even if there is a service that you can tap into you have to go through the whole rigmarole of waiting for a lengthy time and in the meantime you are struggling with the condition.

“In Glasgow a drop-in café has opened, but how many people can get there? It all comes down to funding. There’s only so much we can do.

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“I play table tennis regularly, which is great for coordination. I also take part in tai chi classes, and Scottish Ballet organised a Dance for Parkinson’s workshop in Helensburgh recently, which was a huge success. I’m learning to play the piano as well.

“We didn’t ask for this disease and it can be difficult at times, but people with Parkinson’s should take hold of it and not let it take hold of us.

“Adequate research funding needs to be injected to find a cure.

“Sinemet, a drug used in the treatment of Parkinson’s, was being administered more than 30 years ago when Sue was a student nurse. Things haven’t moved on much as that’s what I take today, unlike the advances in treatment of other conditions like cancer.”

Sue said: “There are so many people with heart diseases and cancer and these are the things people relate to. Parkinson’s had not been something I’d ever thought of until Colin’s diagnosis.

“Although they [Parkinson’s UK] do get a significant amount of funding for research, they don’t get nearly enough, and it’s a drop in the ocean compared to charities like Cancer Research.

“It’s about increasing awareness of the disease. Around one adult in every 350 in the UK has it.

“It’s on the increase. By 2040 it’s expected that there will be a 40 per cent increase across the UK. For every person you know, there’s probably someone they’re related to, or friends with, who is affected.”

Colin added: “Anything we can do to raise the profile, we would certainly get on board with.

“I recently took on the role as the company secretary of the Glasgow Research Interest Group, which aims to be the first point of contact for people on local research activities. We serve the whole of the west of Scotland. So we’re channelling our focus into that, keeping in touch with it as a disease, but also putting something back into the Parkinson’s domain.

“It has caught the imagination of people and we hope it spreads.”

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Helensburgh and Lomond’s MSP, Jackie Baillie, said: “I congratulate Colin and Susan for their hard work in pulling the event off.

“The serious point to it was to raise awareness of Parkinson’s disease and contribute to research into the condition.

“There is a very active group in Helensburgh and Lomond but there is a need for the health and social care partnership to develop more local services.”

Fiona Donald, chair of the Helensburgh and Dumbartonshire Parkinson’s support group, said: “We are one of around 365 local groups throughout the UK and we are the only group in the area.

“Our group is run by volunteers and we usually have around 30 people at each meeting, but the number of members is growing on a monthly basis.

“Meetings are informal and give people a chance to talk and discuss worries and share experiences and we also run weekly tai chi classes for people with Parkinson’s, their family, friends and carers.

“Everything we do is funded by collections and events organised by group members or donations.

“The group is important as it offers mutual support and friendship and raises awareness of Parkinson’s in the local community.”

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Annie Macleod, director of Parkinson’s UK Scotland, said: "Ping Pong for Parkinson's really put a smile on lots of faces. People travelled from near and far to join in so a huge well done to Sue and Colin for organising the event.

"A special mention to Jackie Baillie - she has been tireless in her support of the charity and the local group.

"Thank you to everyone who helped Sue and Colin raise more than £2,000 - your generosity is really appreciated.

“There are good local Parkinson’s services at the Vale of Leven, where people can see a specialist consultant and the local Parkinson’s nurse.

“But some local people have to travel to Glasgow to see their consultant.

“Waiting times to see a neurologist in NHS Greater Glasgow and Clyde are among the longest in Scotland. In July 2018, it took up to 33 weeks to see a neurologist in Glasgow, against a national target of 12 weeks.

“We don’t think that’s acceptable.

“Parkinson’s is a very complicated and individual condition and a typical GP will only see a new case once every three years. We want more GPs to be Parkinson’s aware."