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Living with Parkinson's
Thursday December 25, 2008
Gazette - PARKINSON’S sufferer Karen Rose is not only battling the degenerative disease, she is also fighting for better care.
At 39, Mrs Rose was one of the youngest people in the South West to be diagnosed with Parkinson’s when doctors finally identified her condition seven years ago.
Medics first thought the mother-of-two had multiple sclerosis after she suffered extreme tiredness and muscle spasms.
"When they first told me it was Parkinson's I said no, I am too young for that," said Mrs Rose, now 46.
"I always thought of it as an old person’s disease."
Mrs Rose, who lives in Wiltshire Avenue, Yate, with her husband Mike, 48, and their children Kayleigh, 21, and Tony, 19, can no longer work but she is heavily involved with the Bristol branch of the Parkinson’s Disease Society.
"When I went to the first meeting I came home crying because I felt there was no one I could talk to," she said.
"But then I was introduced to a woman of a similar age who had been diagnosed and it was a godsend. As supportive as my family are, you just need someone to talk to who is going through the same thing."
She is now a representative for the branch, putting newly-diagnosed sufferers in touch with each other and regularly organising charity events to fund more research into the disease.
Mrs Rose, who has lived in Yate for 26 years, is campaigning for another specialist Parkinson’s nurse for the Bristol area.
"We are very lucky to have one as some areas are not covered at all," she said. "But Bristol is a huge area and we need another nurse."
She recently travelled to Westminster for an all-party debate calling for more medical help. She has the backing of Northavon MP Steve Webb, who has met Mrs Rose on a number of occasions to hear how she lives with Parkinson’s.
"You have to accept that everything is going to take a lot longer," she said.
"I will get the housework done but it will take me all week instead of all day.
"It is very strange," she said. "People will see me as a normal person one minute and then all of a sudden I become like a little old lady.
On constant medication to improve her movement, Mrs Rose said the tablets she takes work differently depending if she has eaten, how tired she is and her stress levels.
"I have been forced to sit down in the middle of a shop because I cannot move and the amount of times I have frozen in car parks," she said.
"My medication can control it to a certain extent but I know I am not going to get better.
"It is a progressive disease that is going to get worse," she added.
"Hopefully research will find a cure but I also hope a better way can be found of managing Parkinson’s so I am not so up and down all the time."
Boxing legend Mohammed Ali suffers from the disease and fans of actor Michael J Fox were left shocked when it was revealed he had Parkinson’s.
"People do not realise how many young people Parkinson’s affects," said Mrs Rose. "There are 45 people under the age of 50 in our branch."
She said living with Parkinson’s would not stop her from doing anything: "I am limited in that I have to time things a lot more because of my medication but I am determined to do all the things I enjoy."
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