Parkinson's Awareness Week hopes to dispel common misconceptions of this incurable condition that affects one in every 500 people EVERY day Parkinson's sufferers bear the brunt of people's ignorant insults, offhand snipes, and unkind stares as their uncontrollable tremor or sudden falls are mistaken for drunkenness or drug addiction instead of the tell-tale symptoms of an incurable condition. As Parkinson's Awareness Week gets underway today, Parkinson's UK Swindon and District Branch is urging those suffering in silence to join its ranks, find strength in numbers, and help spread the word about the disease so no-one else ever has to put up with prejudice and intolerance again.
Parkinson’s Awareness Week hopes to dispel common misconceptions of this incurable condition that affects one in every 500 people
EVERY day Parkinson’s sufferers bear the brunt of people’s ignorant insults, offhand snipes, and unkind stares as their uncontrollable tremor or sudden falls are mistaken for drunkenness or drug addiction instead of the tell-tale symptoms of an incurable condition.
Most of them face these trials alone – but no more.
As Parkinson’s Awareness Week gets underway today, Parkinson’s UK Swindon and District Branch is urging those suffering in silence to join its ranks, find strength in numbers, and help spread the word about the disease so no-one else ever has to put up with prejudice and intolerance again.“This year the theme is ‘Shout a little louder’ as there are still a lot of people who don’t know we’re here,” says group chairman, Dave Logan.
"We want people to know what we do and how we can help so they don’t have to face Parkinson’s alone.
"We offer an environment where people affected by Parkinson’s –that could mean families and carers too – can come, chat and help each other.”
One person in every 500 people has Parkinson’s. That’s about 127,000 in the UK.
Parkinson’s disease is a neurological condition in which part of the brain becomes progressively damaged over many years. It is difficult to diagnose as there are no laboratory tests to flag up the disease.
The main symptoms are tremor, rigidity and slowness of movement.
People with Parkinson’s often suffer from tiredness, pain, depression and constipation.
Although progress is being made to spread the word about the condition and how it affects patients, it is still largely unknown by the public and many sufferers are still reticent to come forward and seek emotional support.
“It’s not the end of the world, far from it and that is what we want to get across,” adds branch vice chairman, Tony Falkingham, 57, who was diagnosed five years ago.
“Obviously there are some bad cases, but you can do a lot to help yourself. We also want the public to be aware of Parkinson’s and talk to us about it.
“It’s important to educate the public because some people don’t understand what Parkinson’s involves or what it does.
“It’s unfortunate but some people think you’re drunk they can’t tell the difference. I came back from a holiday last year and walked through the duty free and fell over.
“Everybody took a wide berth and nobody said, ‘Can I help you?’. Their first reaction was, ‘What’s wrong with that guy, he must be drunk’.”
The Swindon support group counts 240 members, including carers, and offers a range of classes such as walking football, tai chi and balance and exercise, to help slow down the disease’s progression as long as possible.
“Exercise helps protect the dying brain cells a bit longer,” explains Dave, 67, who joined the Swindon support group four years ago – seven years after being diagnosed.
“The problem with Parkinson’s is that brain cells that produce dopamine are dead or dying and they are the ones that help make movements.
“By the time Parkinson’s is diagnosed at least 50 per cent of the brain cells have been affected and 80 per cent of the dopamine production.
“I’ve seen people go to classes who couldn’t even move, but they’ve seen a huge difference in their mobility and stiffness.”But at £13,500 a year, these classes don’t come cheap. And it is nothing compared to the £34,000 the branch must raise each year to keep afloat.
Thankfully in September the charity received much-needed financial help from the Swindon Clinical Commissioning Group (CCG) in the form of a £5,000 grant towards its exercise workshops. This came as part of the health body’s £158,000 pledge to improving Parkinson’s care in Swindon and Shrivenham.
This new investment in Parkinson’s provision allowed the Great Western Hospital to make its only specialist Parkinson’s nurse’s post permanent and hire a second nurse. It is now also able to offer more physio and other crucial therapies to patients.
“The service has greatly improved over the past two years, particularly this year,” says Dave.
“With the extra budget given it’s allowed us to get an extra Parkinson’s nurse and more resources for physiotherapy, speech and language and also occupational therapy.
“The service compared to three or four years ago is completely different. It’s probably true to say that if you have Parkinson’s Swindon is probably the best area to be in.”
GWH consultant neurologist Dr Graham Lennox, who runs a Parkinson’s clinic at the hospital’s Betjeman Centre, approached the CCG a year ago for funding. The idea was to try and prevent symptoms from worsening rather than reacting once they did.
“The additional funding is having a huge impact,” he says.“Prevention is the name of the game. We’re trying to improve the health of people with Parkinson’s, improve their quality of life. The CCG have been really helpful. At a time when the NHS is struggling for money we feel very lucky that they supported us.
“Now we have to prove that we’re using the money to the benefit of patients and in a way that saves the NHS money overall, by keeping people healthy and out of hospital.”
As part of Parkinson’s Awareness Week, the Parkinson’s UK Swindon and District Branch will hold a series of events to reach out to sufferers, promote the improved Parkinson’s service at GWH and raise valuable funds.
The first event kicks off today at the Great Western Hospital, with members and specialists on hand to answer questions about the enhanced services.On Tuesday and Wednesday Parkinson’s UK Swindon and District will be at the Brunel centre armed with leaflets and collection buckets.
Members will move their fundraising drive to M&S Orbital on Thursday and campaign from MP Justin Tomlinson’s new Orbital office on Friday.
The action week will end with a concert at Christ Church in Old Town on Saturday at 7.30pm featuring the Swindon Male Voice Choir and Thamesdown Ladies Choir. “We just want people to know there’s help available,” adds Dave.
“The way I look at it, I’ve got Parkinson’s but it has not got me. You can’t think about what you can’t do but what you can do to help yourself.”Tickets for the Saturday concert are £6. To support the branch or get in touch email davelogan_parkinsons.swindon@outlook.com.
To find out more about Parkinson’s go to www.parkinsons.org.uk.
THE MANY FACES OF PARKINSON'S
Muhammad Ali
The boxing champion began showing signs of Parkinson’s disease shortly after retiring from boxing in 1981, and he was diagnosed with the disease in 1984 at the age of 42.
Michael J. Fox
Most famous for his role as Marty McFly in the Back to the Future movies, he was diagnosed with young-onset Parkinson’s disease in 1991 at the age of 30. He went public with his diagnosis in 1998 and is currently in the final stages of his battle.
Johnny Cash
In 1997, the country singer/songwriter announced he was battling Parkinson’s disease. Despite his illness, he enjoyed a late-career resurgence before his death in 2003.
Deborah Kerr
Kerr, who starred in The King & I, From Here to Eternity and An Affair to Remember, was diagnosed with the condition in 1994 and had to use a wheelchair. She passed away at 86 in 2007.
Billy Connolly
In 2013, the Scottish comedian and actor announced that he was receiving treatment for the initial symptoms of Parkinson's disease. He was 70 years old at the time of his diagnosis.
Bob Hoskins
Late Golden Globe Award-winner Bob Hoskins was forced to retire from acting after his Parkinson's diagnosis in 2012. He died in2014. Hoskins appeared in numerous movies throughout his 40-year acting career, including The Long Friday, Mona Lisa, Who Framed Roger Rabbit, Hook, and Mermaids.
Pope John Paul II
The Vatican confirmed in 2003 that Pope John Paul II suffered from Parkinson's disease. His reign lasted over 26 years before coming to an end in 2005, when he died of sepsis at the age of 84.
Robin Williams
Shortly after his death in 2014, Robin Williams's wife, Susan Schneider, revealed that he had been battling the early stages of Parkinson's disease, though he hadn't yet been ready to share his diagnosis with the public.
To watch video:
http://www.swindonadvertiser.co.uk/news/14436432.VIDEO__Let_s_shout_a_little_louder_about_Parkinson_s/
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