I was diagnosed with Parkinson’s at 54 – it’s life-changing, not life-ending

THERE are thousands of people in Scotland living with Parkinson’s.

But no two people will have the same experience with the condition.

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Thursday is World Parkinson’s Day and this year’s theme is: There isn’t one face of the condition.

The idea is to draw attention to the fact that it can affect sufferers in a multitude of ways.

Brian Carson was shocked when he was diagnosed with Parkinson’s seven years ago at age 54, thinking it was an “old person’s disease”.

Now a Scotland Trustee on the board of Parkinson’s UK, the retired engineer, from Glasgow, has set up a weekly table tennis club in Drumchapel for fellow sufferers.

Today, Brian, who spent his career designing, building and testing complex warships for the Royal Navy, says there’s help and support out there.

CLOSE to 13,000 people in Scotland have Parkinson’s.

That number is growing all the time. And yet, the reality of living with the condition is not well understood.

Part of the problem is that Parkinson’s is not the same for everyone. There are more than 40 different symptoms. They all vary from person to person, day to day, hour to hour.

I was diagnosed seven years ago at age 54. It was, to say the least, a steep learning curve. I knew very little about Parkinson’s at that point. Probably like most people, I thought of it as an older person’s condition.

Compared to some, my own symptoms are quite mild. I have no tremor, which is what a lot of people most associate with Parkinson’s.
I sometimes struggle with very slow movement and walk with a shuffle. Control of my hands is another issue.

I can do things like drive a car and cut the grass. But smaller movements, for example controlling a mouse or shaving, can be difficult.

By far the biggest challenge for me is insomnia. I can usually manage no more than three to four hours’ sleep on a good night.

I sometimes feel guilty when I see other people who are much worse off. We have the same condition but not the same experience. Every journey with Parkinson’s is different.

I remember the first time I went to a group in Glasgow for younger people with Parkinson’s. I saw someone using a walking stick for balance, a chap who froze in the lift and someone else who had so much trouble controlling his movement he was sliding off his chair.
These people were all working age. It was like seeing a glimpse of the future and it gave me a bit of a fright.

But in the years since, things have changed so dramatically. I understand a lot more about Parkinson’s. There’s also so much support available now.

Keeping active has been a big part of managing my condition. Two years ago I set up a weekly table tennis session for people with Parkinson’s in Drumchapel. Playing the game has now taken me right across Europe. I also attend Parkinson’s walking football sessions.

The people who run these activities are there to help. They’re really well trained in terms of coaching people with Parkinson’s to get the best out of the activity. They cater for a wide range of symptoms and abilities.

So there’s something everyone can get out of taking part.
But it’s also important to say that these activities are fun. I enjoy doing them. It’s not like the past when I was trying to find any excuse not to go to the gym!

I sometimes forget about Parkinson’s when I’m playing table tennis or walking football. You get so caught up in the moment.

The company is a big part of the experience. I’ve made loads of friends who have Parkinson’s.

Being able to speak to people who understand the condition is so important. Among the general public, knowledge of the condition is pretty sparse. That’s why it counts to be together. We understand that we’re not all the same, but we’re there to support each other if we need it.

I get to see the other fantastic support in place for people through my role as a trustee for Parkinson’s UK. From the local support groups, to the ever-growing list of opportunities to get active.

There are also the Parkinson’s Cafes, which are usually smaller gatherings and more informal. Crucially, there’s the local advisor service and helpline.

Both of those are important sources of guidance for people living with the condition. That includes family, friends and carers. There’s also a wealth of helpful information on the Parkinson’s UK website.
That all this exists is testament to the drive of our supporters.

So many people give up their time to raise funds to help people live well with Parkinson’s. They help power what we do as a charity, from funding groundbreaking research to direct one-to-one support.

When you get diagnosed, it’s not the end of the world.

Parkinson’s is life-changing, but not life-ending. The key for me is to adapt.

Most important of all, for anyone who is diagnosed, they should know that help is available. You’re not alone.

• If you or someone you know needs support with Parkinson’s, call the UK helpline on 0808 800 0303. It’s open from 9am to 6pm, Monday to Friday, and 10am to 2pm on Saturday.

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