FEATURE: Charity offers a helping hand to those living with Parkinson’s Disease
Every hour that passes someone in the UK is told they have Parkinson’s Disease.
The diagnosis alone can be terrifying, but from then on they and their loved-ones also face the daunting challenge of living with the illness.
Parkinson’s is an incurable, progressive brain disorder that will strike one in every 500 people.
Its distressing symptoms include tremor, rigidity, slowness of movement, tiredness, depression and anxiety, and it can also result in a form of dementia.
Those affected can also suffer sudden spells of “freezing” when they are temporarily unable to move.
But it is such an unpredictable condition that everyone diagnosed will be affected differently.
They cannot be sure how fast it will progress, or exactly what their symptoms will be.
The support of others going through similar experiences can prove a crucial lifeline for sufferers and their families.
That is exactly what Bury St Edmunds branch of the charity Parkinson’s UK offers to anyone who needs their help.
And they are not the only group in the town that people can turn to.
Suffolk West Active Parkinson’s (S.W.A.P) caters for those able to take part in more active pursuits.
Both organsiations welcome members from a wide area, plus their partners or carers.
“A diagnosis of Parkinson’s is devastating and frightening,” said Glynis Bannister, secretary of the Bury branch of Parkinson’s UK.
“You have no control. It’s such an inpredictable illness.”
Glynis knows only too well how it can impact on people’s lives.
Her husband Terry, a retired lorry driver, was diagnosed with the disease in 2013 after suffering for years with memory problems, anxiety and depression.
Most people who develop Parkinson’s do so after the age of 50, although very occasionally it affects some as early as their 20s.
Terry was 63 when doctors identified the cause of his symptoms.
“We knew about Parkinson’s UK Bury branch right from the word go, from a leaflet we were given at the hospital,” said Glynis.
“We immediately thought, we will join that.
“It’s very important to see that you are not the only ones going through it, and you are not alone.”
The branch has 130 members and meets at 2pm on the third Monday of every month at Bury’s Moreton Hall Community Centre.
It costs £5 a year to join, which goes towards running costs like hiring the hall and helping to pay for outings.
The funds are also boosted at times by donations and legacies.
Meetings feature speakers who might talk on topics specially relevant to Parkinson’s sufferers, or simply an entertaining subject.
Once a year Professor Roger Barker, who conducts research into the disease at Addenbrooke’s Hospital, Cambridge, updates members on the latest developments.
There is also an annual tea party, and Christmas meal.
But one of the most beneficial aspects is meeting other members and exchanging experiences and advice.
“It’s a social thing too,” said Glynis, a retired hospital care assistant who has been branch secretary since soon after she joined.
“It’s so good to be able to talk without feeling as if you’re treading on eggshells.
“Different things crop up and you swap ideas – things like, if people don’t want to eat, putting their meals on a smaller plate.
“People might suggest things you can do to keep your brain ticking over. To me all information is good information.
“One of the ideas I’ve passed on is keeping a running notebook of all appointments and their outcomes.
“Every time we go for an appointment I take it with me. I’ve found that really helpful.
“I am passionate about the group, but also about the carers and how difficult it can be for them.”
Terry and Glynis, whose home is in Bury, have great support from their son and daughter-in-law who also live in the town.
But some people do not have family close by and that can make the burden on husbands, wives, or whoever is caring for the sufferer almost intolerable.
That is another reason why the group’s support and advice can be so valuable.
“As a carer myself I understand how important it is to have some time to yourself,” she said.
“Some ‘me’ time, is vital to recharge your batteries to enable you to continue caring.
“It’s not being selfish, just practical. If you go under what will happen to the person you care for?
“It can be tough. But we are here to help emotionally and are able to point people in the right direction to get further help.
“We have links to Suffolk Family Carers, Age UK, and social services, for instance.”
People with Parkinson’s sometimes have speech problems. Committee member Trisha Cole runs a singing group called The Parkinsongsters because singing can help strengthen the voice.
The branch does its best to make sure those who could benefit from its help know how to get in touch.
“We have been very proactive in letting people know we are around,” said Glynis.
“We put leaflets in doctors’ surgeries, care homes and mobile libraries.
“And our group is growing. Five new members joined this week.
“If anyone rings up I have a chat, send them a programme with meeting details then leave it up to them whether they would like to come along.”
To get in touch with the Bury branch of Parkinson’s UK call Glynis on 01284 761622, or chairman Maurice Rutter on 01284 810186.
While some people with Parkinson’s have severe mobility problems, others are able and keen to join in more active pastimes.
S.W.A.P. – Bury’s active support group for people living with Parkinson’s, their partners or carers – also meets monthly.
They organise all kinds of social and leisure pursuits, including 10 pin bowling, walks and theatre trips.
Jean Barton from Mildenhall, who runs the group. says they too welcome members from a wide area.
“We have people from Stowmarket, Ipswich and Essex, as well as the Bury area,” she said.
“When you get a diagnosis of Parkinson’s you can feel very lost. That’s why the support of groups like ours is so important.
“We meet on the third Friday of each month (except December) at the Risbygate Sports Centre in Bury.
“As a group we like to go to 10 pin bowling, walking, theatre, greyhound racing, picnics and anything else anyone suggests.
“We also do as much fundraising as we can, and have held Parties for Parkinson’s, cake stalls, and a Christmas tombola stall.
Other ways of raising money have included serving tea and cakes at fun run, and car boot sales.”
For more details about the S.W.A,P. group call Jean on 01638 717032.
Parkinson’s Disease, which affects more than 127,000 people in the UK, occurs when nerve cells die off in the brain leading to a lack of a chemical called dopamine.
Some sufferers also develop Lewy Body Dementia, caused by abnormal deposits of protein in the brain.
They can experience additional symptoms including memory loss and hallucinations.
Parkinson’s UK is a national charity that fights for better care, treatments and quality of life for people with the illness.
It also funds efforts to find a cure. So far it has invested £75 million in groundbreaking research.
The national Parkinson’s help line is 0808 800 0303.