Parkinson's disease: Karen's story 

Karen Rose was diagnosed with Parkinson's at just 34 years of age. She talks about the impact it's had on her life over the past 10 years.

Find out how Parkinson's disease is diagnosed

Transcript of Parkinson's disease: Karen's story

My name's Karen Rose and I've had Parkinson's disease now for 10 years.

I was 34 when I first noticed symptoms of Parkinson's disease.

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 found I was mis-keying when I was doing keypad work.

A year or so later I had a car accident and I started to tremor.

Over the following year I realised this wasn't right.

Every time I was anxious or upset, I started to tremor.

I went along to my GP and he didn't know what was wrong

but he could see something wasn't right and sent me to a neurologist,

who decided to give me a tablet to try.

It worked and my symptoms improved, so confirming Parkinsonian syndrome.

I went back to see the consultant

and he gave me the medication that I had to take every day

and would be taking for the rest of my life.

Parkinson's disease people consider to be an old person's disease.

Every time I mention that I have Parkinson's,

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.

Generally, the symptoms I have during the day

are I wake very stiff and slow.

I need medication to help me get going in the morning.

I then take medication all throughout the day to stop the symptoms.

I go from being very slow and stiff

and hardly able to move one foot in front of the other.

Although stairs aren't a problem. I can run up those quite easily.

It's walking I have difficulty with.

As the tablets wear off, I do generally become worse.

The twitching that I suffer from is more a side effect of the medication

as opposed to the disease itself.

I need to take the medication regularly.

If I don't take it regularly, then I start to slow up

and I become very stiff and I'm unable to do what I want to do.

So it's very important to take your medication on time.

I have a pill timer which reminds me when I'm due to take a tablet,

although sometimes even then I forget and then I know it.

The family are very supportive.

My husband has got to do a lot more round the house now than before,

and the children too, but they do it quite willingly.

At work I was very lucky, I had a very supportive boss,

who just made sure that I could do the jobs that suited me at the time.

If I was having a bad day, they just let me do a job that I could manage

and they never put any pressure on me.

When I was first diagnosed, I didn't know anybody that had Parkinson's,

only very old people, and this wasn't what I was looking for.

I tried to find out information, but I couldn't find any anywhere.

A Parkinson's disease nurse specialist at our local hospital

put me in touch with the Bristol branch

of the Parkinson's Disease Society.

They were able to give me support and help

and as a result I joined their committee

so that I too can help other people

diagnosed with young-onset Parkinson's disease.

It's important to talk when you find out you have Parkinson's disease.

Go along and find a support group.

Ask your GP if they know where one is

or contact the Parkinson's Disease Society.

On their website they have contact numbers

of people that you can contact and talk to.

The important thing is that I don't think you ever accept

that you have Parkinson's disease but you 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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