IT IS a condition which most have heard about but few will know the reality of living with.
With one in 500 diagnosed with Parkinson’s in the UK and with men being more at risk of developing it, it may be surprising to learn it is something many sufferers never considered could affect their lives.
As the Redditch and Bromsgrove branch of Parkinson’s UK celebrates its 21st anniversary this year, Standard reporter Connie Osborne met with residents to find out more about living with the condition and what the group does for them.
MY FIRST impression as I walked in the room was one of surprise. Not only were there a lot of people- over 50 in fact – but the distinct sound of laughter boomed from the Rockland’s Social Club where Betty Whittaker hosts the meetings.
Betty has chaired the group for nearly 13 years after husband Walter Stranz – who was one of the key figures behind establishing Redditch New Town – developed Parkinson’s in 1982.
Parkinson’s is a neurological condition where people do not produce enough of the chemical dopamine because some nerve cells in their brain have died.
Without this chemical people find their movements become slower and the loss of nerve cells in the brain causes symptoms such as a tremor, rigidity and slowness.
Sadly there is no cure for it, and although you cannot directly die from Parkinson’s, tiredness, frustration, pain and depression are all factors that people face in their day-to-lives and often cause them to feel isolated and alone.
Walter Stranz had the condition for 23 years before passing away in 2005, but it was him who first put Betty on her journey with the group. She has chaired it since 1999 and has strived to prevent people from losing their social life to the condition.
“I remember my first meeting and I just thought everyone must be so bored sat in this dreary room,” she said.
“There were very few people and people would even fall asleep it was that boring. And I thought things had to change.
“These lovely people deserve so much better than this and I wanted to do something about it, show them what life still had to offer.”
With the help of members, their families and volunteers, Betty made the group somewhere fun to be while providing the serious support service many would need.
Members pay £6 a year and the group talks over coffee, tea and cake, as well as taking part in quizzes, raffles, trips, exercise classes, Christmas lunch, and on the day I visited, curling.
The group also offers a respite package for members where for one hour a week a carer will look after someone in the later stages of Parkinson’s so a relative can take time out for simple things such as getting a haircut.
This costs a staggering £800 a year for one person, so the group are always holding fund-raising events including coffee mornings to keep the vital service running.
“Four people are already using it and we also offer a transport system as well as scheme where people can go out to our members and talk to them and keep them company. Sometimes a chat can make a big difference,” Betty added.
“We also have carers who come out for the day, and like everything in today’s society it is very expensive.”
Sadly Parkinson’s UK is not as well known as other charities such as Cancer Research and often donations do not come flooding in because of the condition’s rarity and lack of awareness.
The condition also affects everyone differently. Some people can show very severe symptoms, while others do not have the tell-tale signs, which can make it difficult for people to detect.
The group includes people who are all at different stages of Parkinson’s, ranging from people who have been diagnosed in the last year to those who have had it for many.
And as member Paul Hawkins from Oakenshaw told me, sometimes it could be intimidating to see people in the later stages but it was also reassuring to have someone there to talk to.
“I might have a brain operation which can be quite daunting, but you can talk to people who have been through it and it can make a big difference to how you’re feeling,” he said.
“It is good meeting people in the same position. Parkinson’s is not a nice condition and I think it is hard to come to terms with it.”
The 68-year-old was diagnosed in 2006, and as a keen footballer and golfer it never crossed his mind he could one day have the condition.
“I was a managing director of a company with my brother. I hadn’t been well for a while and had to have a lot of tests.
“I had a heart condition and stents put in my heart and I thought it would get better. It took months to confirm what I had and then I was finally diagnosed.
“Some days are more difficult than others. They say that Parkinson’s is different for everyone. Your normal life does change and old friends you used to do things with, you can’t do those things anymore.
“You think it is really rare. I even had a friend at the golf club who was older than me and he was diagnosed before me. Yet I just never thought about it properly.
“It was only when I was diagnosed I realised what he was going through. That is why it is so good to have these people around you at the group, to have somewhere like this.”
Tommy Stokes, who was diagnosed in 2008 and lives close to the club, said the group was also a great place to help him tackle problems with the physical symptoms of Parkinson’s.
“The group really helps with the exercises. On your own you sometimes forget about doing them but here they refresh your memory and get you up and about and it really helps.”
As I left the meeting, I realised one thing was for certain – Parkinson’s is not a death sentence.
In fact the support group creates a new life for those who have been diagnosed with the condition.
It is a place where embarrassment isn’t a factor, a safe environment to talk about feelings, questions and concerns, and when things feel a bit too serious, to have fun and joke about it all. Most importantly of all, enjoy life.
And although their tea cups might be half empty to prevent any spillages – it was clear to me everyone saw their glass as half full.
Visit www.facebook.com/pages/Parkinsons-UK-Redditch-and-Bromsgrove-Branch/509873219025314 for more information about the group or www.parkinsons.org.uk for more details about the charity.
It is a great place to meet new people and have a chat.
A quiz is held every week as a fun way to test everyone’s general knowledge.
Secretary Joy Lucas, Martin Jones, treasurer Pat Nash, John Hemming and chairman Betty Whittaker are just a few of many who help run the group. Pictures by Marcus Minging 1514025MMR.