May 3, 2016
By Ursula Duddy
Two Derry men diagnosed with Parkinson’s Disease in their 20s and 30s have sent out the message that this is not an ‘old person’s disease’ and, if you have it, it’s not the end of the world.’
Michael Stewart, 40, and Kieran Whoriskey, 39 (pictured) are two funny, outgoing and chatty guys whose great sense of humour is helping them deal with a diagnosis that hashanged their lives.
Parkinson’s Disease is a progressive disease of the nervous system with no cure.
It is characterised by tremors, shakes and spasms throughout the body that hamper movement and co-ordination.
Although it is a condition that is usually associated with the middle-aged and elderly, Parkinson’s Disease, can strike the young.
Michael and Kieran started exhibiting symptoms years before they were finally diagnosed with early-onset Parkinson’s.
However, the first thing both of them would tell you is that they don’t want pity, they just want to raise awareness that this is not an old person’s disease.
They want to let younger sufferer’s know that there’s help and support for them and they are passionate about raising funds for research.
Michael and Kieran had known each other from school but now they have become firm friends, all thanks to Michael’s wife, Sharon.
Sharon came across Kieran on Facebook doing a ‘shaky selfie’ with a blurred photo to raise awareness about Parkinson’s.
She urged Michael to get in contact with him.
Kieran introduced Michael to a ‘lifeline’ group called Never Give Up on Facebook full of young Parkinson’s sufferers from all over the world who give each other support and advice.
Both men urged young people, if they believe they are exhibiting symptoms, not to ignore it or make excuses as they first did.
They also hope that, by raising awareness, they will reach out to other young sufferers that may be living in the city and feeling isolated.
In Kieran’s case, he first noticed shaking when he was only 22-years-old and was diagnosed four years later, aged 26, the youngest person in Ireland to have early-onset Parkinson’s.
“When I first noticed it I was driving the car and when I came up to a set of traffic lights, I noticed my foot was shaking,” said Kieran.
“It progressed from there on but I didn’t go to the doctor at first because, being a fella, you think you’re invincible. But when I did go, it took them four years, but they diagnosed me.
They didn’t think it was Parkinson’s because I was too young, they were trying everything else to rule it out but I had read about it on the internet and I knew it was what I had.
“I was shaking all the time and you lose your confidence but when they give me the pills, the medication worked well for me. The shaking just dissolved and my balance back but it only lasts for four hours and I didn’t know that at the time, I thought it was the cure!
“The meds only last for four hours at a time, if I didn’t take my meds, I wouldn’t be able to speak or even walk.”
Kieran explained that dystonia can be one of the effects of the disease. This means the muscles in the body seize up and the only relief is brought about by trying to keep moving.
Michael also suffers from dystonia as part of his symptoms.
Sufferers can be affected in different ways and each person needs medication tailored to their needs.
Michael, a father-of-three, was diagnosed just two months ago, aged 39 just weeks before his 40th birthday.
His symptoms had been ongoing five years and he, like Kieran, ignored it.Michael had run Derry marathons and has always kept fit but said Parkinson’s can affect anyone regardless of their fitness levels.
“It was a wee tremor in my thumb and I brushed it off thinking it was just a nerve then I fell a couple of times trying to walk or going up stairs but I told myself I just caught my foot.“After a while the tremor in my thumb went full-blown into my hand and just after Christmas I went to see my GP.”
Michael went through a series of tests but they came back negative.
His doctor wanted to refer him to a neurologist but the waiting time on the NHS was five and a half months.
Michael was then asked if he wished to go private and within days he went to see a neurologist.
“I went to see him with Sharon, my wife, they done clinical tests and just sat me down and told me, ‘You have early-onset Parkinson’s Disease’,” he said.
“I was shocked but I lost a wee girl, Faith, five years ago, she was stillborn. That was devastating enough for us so I looked at this and thought this is a card I’m being dealt and I just have to deal with it I’m not going to lie down under it, I’m going to get up, go to my job and fight it all the way. But the first thing you think about is your family, you think what happens now?
“My wee girl, Aoibhinn is three and my son, Eoin, a year-old. I think about them and my wife all the time and sometimes get upset about it but I just try and deal with it. I try and hide it from the wains because in the morning, I can’t walk without taking my medication. Your toes curl up and you can’t walk but once I take my medication, it’s grand.
“It’s hard telling your family, when I told my Ma and my Da, they were just devastated. People ask you, ‘But what age are you? That’s related to old people, 60, 70, 80-years-of age’ but younger people are diagnosed too.
“Sometimes people don’t want to say they have Parkinson’s and sometimes people think you’re drunk. A woman in a shop had asked me if I had been out on the rip but I told her I was getting tested for Parkinson’s! She said, ‘Aye, you’ll be grand’ but the next time I went back to the shop, I was shaking that day, and she said, ‘What’s up with you?’ and I told her I have Parkinson’s Disease. She was shocked.”
Kieran agreed and said that he also had personal experience of this on many occasions over the 14 years since his diagnosis.I’ve been turned away from many a place; just after Christmas I hadn’t even had a drink and a bouncer turned me away from a bar up the town. He said, ‘You’re not getting in, you’ve had too much to drink’.
“My mate was with me and told the bouncer I have Parkinson’s.”
Kieran wears wristbands to identify that he has the disease but Michael said he just prefers to tell people.
Kieran commended Michael on the way he dealt with his diagnosis by telling everyone immediately.
Kieran said he hid his condition for as long as he could, a whole eight years.
“He did the right thing, he came straight out and told everybody where I hid it for eight years and the stress of that makes it worse,” he said.
“It’s not a nice place to be when you hide it then one Friday night I wrote a big long story on Facebook and just pressed ‘send’ and the weight just lifted off my shoulders straight away.
“The response I got was amazing, it bounced all round Ireland then all parts of the world and then a guy called Brett Parker got in touch and he saw my story and I started to fundraise for the Michael J Fox Foundation.”
Kieran also did an awareness video for Brett Parker, who runs the organisation My Angel My to bring awareness towards different social causes through films and videos.
Kieran raised funds by climbing Mount Errigal and was invited to a gala event in America where he met the founder, film star, Michael J Fox, best known the 80s classic movie series, Back to the Future.
The two men are now both involved with fundraising for the Michael J Fox Foundation.
Kieran plans to do a skydive in the last weekend of July and climb Mount Errigal again the very next day with funds going to the Michael J Fox Foundation and My Angel, My Hero.
Michael will run the Derry Half Marathon in September, splitting the money between the Michael J Fox Foundation and the Neo Natal Unit in Altnagelvin, in memory of his baby daughter, Faith.
Michael added: “We just want people out there to know it’s not an old person’s disease and if you have it, it’s not the end of world. You just get up and keep fighting.”
http://www.derrynow.com/news/parkinsons-not-just-an-old-persons-disease-say-inspirational-young-derry-men/89974
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