Parkinson’s Disease Doesn’t Just Affect The Elderly, Younger People Can Get It Too
It’s said that 18,000 people each year in the UK are diagnosed with Parkinson’s Disease, but not all those people are elderly.
According to Parkinson’s UK, as of last year, those between the ages of 70 and 79 had the highest number of people with the condition; but something that often goes unnoticed is the 1.2% of people with Parkinson’s that are under the age of 50.
This condition is known as Young Onset Parkinson’s Disease (YOPD), and one of the youngest reported cases is thought to have been a two-year-old in the US.
Paralympian Matt Dimbylow was below the age of 50 when diagnosed with the condition; at the age of 36, Matt was told he had a form of Parkinson’s despite not having the traditional resting tremor that’s often associated with the condition.
With today, April 11, marking World Parkinson’s Day, Matt told UNILAD about his condition and the initial symptoms that started to present themselves a few years prior to his diagnosis in 2007. He explained, ‘I didn’t have the traditional shakes, I had a loss of sensation in my face, numbness, my motor skills weren’t as good. I struggled to do certain tasks and it’s as silly as I would have had a fork and wondered what to do with it. I also get a lot of stiffness and rigidity.’
‘Another indicator with me was, for example, was when I dropped a glass in a bar when I was out with my work colleagues and I put it down to the fact I’d had a drink,’ Matt continued. ‘Whereas when I was back home and getting something out of the cupboard, my hand was opening [at its own will]. You don’t know which of those 40 symptoms is choosing to attack you on which day.’
Matt’s now had the condition for nearly 20 years after his symptoms began to surface when he suffered a head trauma in 2003 – something which consultants think may have played a part in the effects of Parkinson’s beginning to present themselves.
It then took four years for Matt to be diagnosed with Parkinson’s, as doctors weren’t completely sure what was causing the issues. A lot of the symptoms of Parkinson’s overlap with other conditions, making it hard to diagnose.
Over a period of four years through to 2007, there was a period of uncertainty because I had pneumonia twice, meningitis, and while they were doing a lot of the tests to see what the underlying cause of this was, they also threw out that it could be Lyme Disease.
Ultimately, I had DaTscan and MRI scans and went through all the tests, when finally I was given a medication in 2007 called Sinimet, which is an old-fashioned Parkinson’s drug, and I responded really well to it. That’s when a diagnosis [of Parkinson’s] was confirmed.
The father-of-two went on to discuss how, after his diagnosis, he ‘fear[ed] for the worst’ because he was told he only had around 10 years left of good quality life. However, he added that it’s important for people not to take these suggestions as ‘gospel’, because he’s a good example of how it’s not always accurate. 14 years on from his diagnosis, Matt’s doing a lot better than he was expected to be.
One way he’s proven how he’s not let his Parkinson’s Disease defeat him is by representing Great Britain in the Paralympics. Matt first played for the football team in 2008 and went on to captain the team at his second Paralympics four years later.
Talking about how important it is to persevere, Matt said, ‘I think a lot of people let the disease define them, and to a certain extent you need to define yourself to the illness. Part of that is understanding yourself and the condition.’
‘Don’t get me wrong there’s lots of ups and downs,’ he continued. ‘But it’s about coming to terms with the fact you can’t battle it all the time and that you’ve got to accept that there will be days when just walking to the end of the garden can be an achievement. You’ve got to find an inner peace.’
Gaynor Edwards was diagnosed with Parkinson’s eight years ago, at the age of 42. She’s since gone on to create her own YOPD charity, Spotlight, which she believes the be the first of its kind.
Similar to Matt, Gaynor also had to jump through several hoops to finally get a diagnosis.
Explaining the steps towards getting her diagnosis, Gaynor told UNILAD:
First of all you have a blood test, then you go through an MRI scan. The MRI scan itself is quite harrowing, but actually it just rules out things like MS – it doesn’t actually prove Parkinson’s.
When it turned out not to be MS, a DaTscan is the final thing they do where they inject you with iodine so they can they can get the colour showing up in the brain activity [on the scan]. After all this, I get called back into the neurologists and she says to me, ‘How are you?’, and I say, ‘I don’t know, how am I?’ – this is when she told me she thought I had Parkinson’s.
Prior to having the tests, Gaynor – pictured centre, below – went to visit her GP who dismissed her having Parkinson’s because her reflexes were too good, despite bad reflexes supposedly not being a symptom of the disease.
Since then, Gaynor has highlighted how little education and understanding there is of YOPD and how there hasn’t been enough research into it. This is partly why she decided not to hide her diagnosis from people in the hope that it would raise awareness of the condition. She also called upon others with YOPD to openly speak about it.
Gaynor explained, ‘I decided early on not to hide it – I came out about it quite soon because the more you know about it, the more you can confront it. […] It’s not easy, of course, to come out about it as it’s a very personal thing, and it’s easy for me to say to others to do it because I’ve already done it.’
Due to the lack of education and studies on YOPD, there are limited options on what treatments are available. Gaynor highlighted that due to YOPD sufferers being much younger than your average person with Parkinson’s Disease, it means they use up all their options much sooner.
She explained, ‘When the drugs work, they work really well, but the thing is, we have take them for decades whereas if you’ve got traditional age Parkinson’s you can kind of plan ahead. For example, if they’re given a ten-year life expectancy, its likely the drugs will see them out. However, with YOPD suffers, if we’ve got maybe 10 or 20 years, you’ll maybe be OK if you’re careful with not overusing them, but there’s a very limited menu list.’
If the medication begins to stop working, the next option is to undergo a seven-hour brain surgery while still awake, Gaynor further explained – understandably something no one would voluntarily want to have to go through.
Both Matt and Gaynor noted the unpleasant side effects that often come hand-in-hand with some of the Parkinson’s medications. Despite this, Gaynor has continued to take medication, but Matt has gone completely drug-free and uses exercise as a form of keeping on top of his Parkinson’s Disease. In a bid to encourage others with and without Parkinson’s to do more exercise, Matt has called on people to get involved with Sport’s Parkinson’s ‘Race to The Moon’ campaign to get moving and to raise money for charity.
While the condition is undeniably difficult to live with, Gaynor said that being down about it ‘gets boring for us and boring for other people,’ so she tries to have an optimistic outlook on life. She added, ‘If you learn about the condition and deal with it both emotionally and from an educational perspective, you’ll do so much better because you’ll make the right decisions and look after yourself better.’
Matt also tries to maintain some optimism, saying that ‘the worst thing you can do is sit back and let it take over because once you give into it, it’s just going to swallow you up.’ He added, ‘the longer you maintain a positive outlook, the easier it is to deal with.’
You can find out more about Parkinson’s Disease via the NHS website here.
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