PARKINSON’S disease affects around 166,000 people across the UK, with that figure expected to rise over the next few years.
The progressive neurological disorder, which primarily affects the central nervous system, has no known cure.
With the population continuing to get older, the number of cases is likely to grow.
But, with today marking World Parkinson’s Day, the Jersey branch of charity Parkinson’s UK is hoping to increase awareness both of the disease and of the work and support that it can provide.
Parkinson’s UK provides support for those suffering with the disease, funds research, and campaigns for better health care, with the Jersey branch – the only charity supporting those with the disease on Island – recently appointing a new chair.
Alastair Torvaney was appointed when Janine Coxshall stepped down from the role on 24 March.
Alastair, who has been diagnosed with Parkinson’s himself, hopes to improve the support network for sufferers in the Island.
“I’ve got Parkinson’s myself – I think that’s the first time we’ve actually had a chairperson who actually has the condition. I can talk with some experience and be able to reach out to members,” he said.
“The key message to people out there who have Parkinson’s but haven’t got in touch with us, please do.”
He recalled first suspecting he had Parkinson’s when he could no longer smell the roses in his garden, despite people telling him of the amazing smell.
“I think with me, the first sign, which is apparently quite common, is I stopped being able to smell,” he said. “You can lose your sense of smell. That can be one of the symptoms.
“Once I got on medication, my sense of smell came back, maybe not as strong as it once was but you can definitely smell something in the roses now.”
He said that some people could be living with Parkinson’s without knowing, but said that anyone who suspected they may have the disease or had shown symptoms should “come to us, contact me, and get it sorted”.
“I want people to know we are here and ready to help”, he explained.
The charity already offers several classes and support groups; including aqua therapy, neuro active classes lead by a qualified physiotherapist, and singing.
Alastair emphasised how beneficial all of these activities are, saying exercising regularly has significantly helped him since being diagnosed.
He said: “The interesting thing is, one thing that the medical profession seems to be pretty in agreement on is that exercise helps. It helps in the sense that it can slow the disease progress. And obviously exercise is good for you anyway.
“We’ve got all these exercise classes on the go, and there’s really something for everybody. You know, we’ve got singing classes. We’ve got boxing classes. Boxing seems to be really good.
“In my own case, I am actually on less medication now than I was when I was initially diagnosed five years ago. So I do a lot of exercise personally in the hope that what I’m doing is slowing down the progress of the disease.”
He added that the disease can affect the vocal cords and make it difficult to speak – making singing a great activity for the muscles we use when we speak.
“It really is a must for somebody who’s finding they’re having difficulty with their speech -it’s amazing what can be done just by singing”, he added.
He added that he wants to help those struggling to feel better about themselves, particularly those who may be self-consious about their tremors, making them hesitant or nervous to go out and socialise.
Alastair said that Parkinson’s is often referred to as the fastest growing neurological disease in the world today adding that what is “desperately needed” is a cure.
Shortly after being diagnosed with the disease, Alastair raised more than £5,000 for Parkinson’s Jersey by doing a 96-mile hike in Scotland with his friend Dennis Le Breton. They surpassed their target of £4,000.
He said that, on World Parkinson’s Day, it was important people know where to find support. “Just making people aware that there’s a charity in Jersey – we can hopefully support people living with the disease in Jersey.”
Alastair can be contacted on alastairtorvaney@gmail.com – and he encouraged anyone struggling, nervous, unsure, or wanting to join in on activities, to get in touch.
