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Health A to Z

Parkinson's disease

"I've learned to live with Parkinson’s"

Parkinson’s disease is usually considered an older person's illness, but Karen Rose was diagnosed with it when she was just 34. She talks about the impact it's had on her life over the following 10 years.

“I was 34 when I first noticed the symptoms of Parkinson's. At the time, my dad noticed that I wasn't walking properly and that I wasn't swinging my right arm. And at work I was typing the wrong keys when I was using the computer.

“A year or so later I had a car accident and started to develop a tremor. Over the following year I realised this wasn't right. Every time I was anxious or upset, the tremor would start.

“My GP didn't know what was wrong so he sent me to a neurologist, who gave me a tablet to try. It worked and my symptoms improved, confirming I had Parkinson’s.

"I went back to see the consultant and he gave me the medication that I have to take every day and for the rest of my life.

“People consider Parkinson's to be an older person's disease. Every time I mention I have it, people always say, 'You're not old enough, you look fine'.

"When my medication's working, I do look fine, but they don't see the times when the medication's worn off and I'm struggling to move and do everything that everybody takes for granted.

“I feel stiff and slow in the mornings and am hardly able to move one foot in front of the other. The medication helps to get me going. I take it throughout the day to stop the symptoms. Stairs aren’t a problem as I can run up those easily. It's walking I have the problem with.

“I become worse as the tablets wear off. The twitching I suffer from is a side effect of the medication, but I need to take it regularly. If I don't, I slow down, get stiff and I'm unable to do what I want to. So it’s essential to take your medication on time. I have a pill timer, which reminds me when I'm due to take a tablet.

“My family are really supportive. My husband and children have to do quite a lot of housework for me, but they don't mind at all.

“I was lucky at work. My boss is supportive and made sure I could do the jobs that suited me at the time. If I was having a bad day, my boss let me do a job I could manage and never put any pressure on.

“When I was first diagnosed I didn't know anybody my age who had Parkinson's, only very old people. Then a nurse specialist at my local hospital put me in touch with the Bristol branch of the Parkinson's Disease Society (PDS).

"The people at PDS supported me. I joined their committee so I could also help other people with young-onset Parkinson's.

“It's important to talk when you find out you have Parkinson's. Ask your GP if they know of a nearby support group or contact the PDS. They have contact numbers of people you can talk to on their website.

“I don't think you ever accept that you have Parkinson's disease, but you do need to learn to live with it. Don't let it live your life for you. Do what you can, when you can, and stay positive because this will always help.”

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Content Supplied by NHS Choices

[View original article on NHS Choices website]