A Leeds man who was diagnosed with Parkinson’s at the rare age of 31 has spoken of the impact the degenerative disease has had on his life, both physically and mentally.
Ben Rider, of Moortown, was told he was a ‘special case’ by doctors after 18 months of tests eventually determined he had the progressive neurological condition which normally affects people decades older.
Just 1.2 per cent of the 145,000 people currently diagnosed with Parkinson’s in the UK are under the age of 50, let alone 40.
The news was a major blow for the previously fit and healthy bar manager who was expecting his first child just two weeks after the diagnosis.
While the dad-of-two has since seen his physical symptoms worsen a little, he says it’s the ‘invisible’ ways the condition has affected him which has arguably had the biggest impact so far.
In the years following his diagnosis, Ben says he became a shadow of his former self and went through the break-up of his marriage as he struggled to deal with his new future.
He told the Yorkshire Evening Post: “People say life begins at 40. If you’re diagnosed that early it does have a massive pyschological effect. You want to do so much but are then told you’re going to have these limitations on the rest of your life.
“There’s an analogy that it’s not a death sentence, it’s a life sentence. It’s quite a dark way to look at it.”
Now 37, Ben feels his mental health is back to full strength and hopes talking about what he’s been through will inspire others with the condition.
Parkinson’s is a long-term degenerative disorder of the central nervous system which mainly affects the motor system - and there is currently no cure.
While one of the most common symptoms is a tremor, for Ben it is rigidity of movement – a problem he first noticed when he was aged just 29.
“I was struggling to text or write and when walking the dog, my right arm wasn’t swinging. But it was just before I got married so I put all those worries to the back of my mind. Then when I came back from honeymoon, I went [to the doctors] and it took about 18 months to get a diagnosis - because of my age and rareity of the condition.”
By then, after Googling his symptoms, he had an idea of what it might be.
“I ticked quite a lot of the boxes for Parkinson’s so I was kind of prepared for the results before I’d got them. But it was still a shock.
“When I walked into the consultant’s room, there was a nurse there so I knew it wouldn’t be the best news. I was diagnosed two weeks before my first child was born so my feet didn’t really touch the ground for the first two years.
“[Becoming a dad] compounded things but also distracted me as well. Changing nappies and getting my daughter dressed were harder than they would have been two years before. But it made me focus on being a father rather than feeling sorry for myself.”
But before long, the psychological impact began to appear, as the disease chipped away at his confidence.
“Just after my son was born nearly four years ago I suffered quite badly from depression without even realising it. I just became apathetic and distant from my wife, now ex-wife. I ran pubs and would have to be sociable at work but when getting home, it was like the lights were on but no-one was home. I was very distant. To a degree I was quite rude and stand-offish with family.
“I was just tired, and tired of putting on this mask for 50 hours a week at work.
“With the depression came the anxiety. I didn’t really leave the house other than to go to work.
“I was getting quite concerned about what people thought was wrong with me. I didn’t want to go out and that made me feel bad for my family.
“Me and my ex-wife splitting up, in a weird way, gave me the kick up the backside to face up to what was happening and get the help I needed.
“The problem was I was concentrating on the stuff I couldn’t do any more and couldn’t do with the kids, rather than enjoying the now.
“Things like ironing shirts – I used to do 10 shirts in 10 minutes but now it might take me ten minutes to do one shirt, but I can still do it.
“There are people with my condition who can’t work any more. I still work 45-50 hours a week. It’s hard but I just need to make sure I look after myself.”
Ben embarked on a course of counselling which he said helped “refocus my thoughts” and followed other inspirational people with Parkinson’s such as Davis Phinney, a former professional road bicycle race from USA, who wrote an autobiography and runs a foundation.
“[He is about] setting small goals and seeing every day as a gift and making the best out of every day. That rang really strongly for me. It was exactly what I needed to hear.”
Alongside the support from his family and friends, Ben says he now feels “a million miles away from where I was then”.
He added: “I’m back to where I was before it all started getting to me really.
“It’s about trying to be as positive as possible. If you think about it too much you can sit in a corner of a dark room and let it take over you – which is what I did for a while. I didn’t talk about how I was feeling. But there’s no shame in saying you’re struggling.”
For Ben, and others with Parkinson’s, the future remains unclear, with the disease affecting everyone differently, and at different rates.
He currently sees his consultant every six months to review his progress, takes medication and has regular physio to keep his muscles from tightening up.
“The main thing when diagnosed with Parkinson’s, particularly at such a young age, is to try to keep active. If you don’t use it, you lose it, basically,” he said.
Since his diagnosis Ben has completed the Yorkshire Three Peaks and run the York 10k in a bid to keep as fit as possible.
“Considering I was diagnosed six and a half years ago it’s not progressed as bad as it could do really. It’s affected my walk and my gait and my hip but my arm is pretty much the same if not a little bit worse.
“The problem with Parkinson’s – it’s almost like a cloud hanging over you. There’s no progression path to look for. I could be the same way I am now in another 30 years’ time or in three years’ time I could get so bad I can’t even work any more. I need to try and stay positive and take each day as it comes which is what I try to do.”
Dr Beckie Port, research manager at Parkinson’s UK, said: “Parkinson’s affects everybody differently. There are a host of symptoms that can affect people, with varying degrees of severity. We’ve heard it described as a kind of ‘unlucky dip’ in terms of what an individual may experience.
“Tremor is one of the most well-known symptoms, but Parkinson’s can also cause issues not associated with movement, such as fatigue, anxiety, depression and sleep disorders. While not as apparent to outsiders, many people with Parkinson’s tell us that these ‘invisible’ symptoms can impact their lives as much, if not more, than problems with movement.
“A Parkinson’s diagnosis at Ben’s age is incredibly rare – our figures show of 145,000 people living with Parkinson’s in the UK, there are an estimated 1,757 under the age of 50.
“We still don’t know what causes some people to develop Parkinson’s at a younger age, but with our ongoing research and improving understanding of the condition, we are getting closer to better treatments and a cure for people like Ben.”
Parkinson’s UK estimates around 145,000 people with diagnosis of Parkinson’s in UK in 2018.
With population growth and ageing, this is likely to increase by a fifth, to around 168,000 people in the UK, by 2025.
1 in 37 people alive today will be diagnosed with Parkinson’s in their lifetime and every hour, two people in the UK are told they have the condition.
Men aged 50-89 are 1.5 times more likely to be diagnosed with Parkinson’s than women.
The main symptoms of the condition are tremor, slowness of movement and rigidity.
Parkinson’s UK’s Leeds branch meets St Chad’s Parish Centre, Otley Road, Leeds on the second Wednesday of the month 2-4pm, for a speaker followed by tea and a chat.
It also runs art therapy classes and exercise sessions at various locations in the city.
Contact: Rose Crawley, volunteer co-ordinator for Yorkshire, on firstname.lastname@example.org.
Visit www.parkinsons.org.uk or call our free, confidential helpline on 0808 800 0303.