Karen - Interview 12
Age at Interview:
Age at Diagnosis:
Married, 2 children aged 18 & 20, still working as a clerk.
Brief outline:Karen was 34 when she first started having symptoms down the right side of her body. She experiences a lot of freezing and festination and some dyskinesia.
More about me...
I wasn’t old enough to have Parkinson’s Disease I thought. I wasn’t forty yet and I was really worried about what would happen in the future. I didn’t know where to turn. Luckily a Parkinson’s Disease nurse specialist put me in touch with the local branch of the Parkinson’s Disease Society and it was through them that I met lots of people who’ve been able to help and support me. I’ve now become very involved with the Parkinson’s Disease Society and I am the young onset representative for the [local] branch.
In the beginning I found it very difficult to find out much about young onset Parkinson’s Disease. There wasn’t really many people to turn to. I went along to the [local] branch but again it was nearly all old people, or so I thought. After going for a few months I found that in actual fact they weren’t all old and disabled, there were some younger people there. And that’s when the support group started to develop and really we help each other. We give each other advice, things that’ve happened to us in the past. To help to cope with the different things that happen. And really it’s a case of looking on the internet and finding out as much as you can. The PDS website is very good, and they also produced a DVD more recently, especially for young people and newly diagnosed people, which is a great help. I only wished that had been around when I’d been first diagnosed.
We get together with other young people that have Parkinson’s Disease, just to talk and share experiences and just to be a support for each other. The biggest thing is that no matter how supportive your friends and family are, they never fully understand. And people with Parkinson’s know exactly what you’re going through and can always give help and support. And we help and support the carers too because they also need help.
It started with just three of us about two and a half years ago, and three of us went out to the pub for a chat and, you know, sort of talk about how we all were coping. And it’s just grown and grown and grown over the last couple of years and there’s now forty. And I’m actually the young onset representative and we organise social events, nothing formal. We just go out and have a good time and talk. As I said, talking is very, very important and the carers and partners and family and friends they can come along as well because they need support as well, especially your partner. It’s nice for them to talk to somebody as well and, you know, just find out how other people are coping. Yes, so it’s very beneficial.
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