NWPF

News ArchivesRead News

Living with Parkinson's

Thursday December 25, 2008

Ali Dent

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."

Recent News

Jul 7 - Parkinson’s Patients Have a Higher Risk of Developing Melanoma — and Vice Versa, Study Finds
Jun 27 - The rogue protein behind Parkinson’s disease may also protect your gut
Jun 26 - Do Statins Increase Risk of Parkinson’s Disease? Some Researchers Think So
Jun 22 - A Confused Immune System Could Be Behind Parkinson's Disease
Jun 21 - Predicting cognitive deficits in people with Parkinson’s disease
Jun 20 - Gym offers classes in noncontact boxing for Parkinson’s patients
Jun 19 - Human Limitations Could Prevent Us From Advancing in Science. AI Could Help.
Jun 13 - Brain Cell Transplants Are Being Tested Once Again For Parkinson's
Jun 12 - Smell Test May Sniff Out Oncoming Parkinson's and Alzheimer's
Jun 8 - Smartphones Track Motor Function in Parkinson's Disease
Jun 8 - GKC Enrolls First Patient in Personal KinetiGraph Trial as Part of NPF’s Parkinson’s Outcomes Project
Jun 8 - Low-fat dairy intake may raise Parkinson's risk
Jun 6 - Patient Voices: Parkinson's Disease
Jun 1 - World-First Trials Have Been Launched to Treat Parkinson's And Blindness With Embryonic Stem Cells
Jun 1 - LIFE Shared This Remarkable Parkinson's Disease Story in 1959.
May 24 - Survival Rates Differ Widely in Parkinson's, MSA, Lewy Bodies
May 22 - Discovery may offer hope to Parkinson's disease patients
May 15 - Study offers answers on life expectancy for people with Parkinson's disease, Lewy body dementia
May 5 - Parkinson's in a dish: Researchers reproduce brain oscillations
May 5 - ‘Hunger Hormone’ Could Help Treat Parkinson’s Disease