Parkinson's disease

Karen - Interview 12

Female
Age at interview: 45
Age at diagnosis: 39

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.

Background: Married, 2 children aged 18 & 20, still working as a clerk.

Audio & video

Karen was 34, married with two young children and was working part time when she started having symptoms. She was finding it harder to use the keyboard at work and her dad had noticed she wasn’t walking properly or swinging her right arm. Many tests and visits to the neurologist were inconclusive and it took a long time for her to be diagnosed. For several years, the doctors thought she might have MS. After a car accident in 2000, she started having a tremor down her right side and she saw a neurologist who gave her some medication. Karen wasn’t told what the drug was for and she found out by looking it up on the Internet that she had Parkinson’s disease. 

 

She felt very frightened but she got in contact with the local Parkinson’s disease society and talking to other people with Parkinson’s disease who knew exactly what she was going through has helped her enormously. She is now the Young Onset representative of her local branch and has helped to develop this part of the branch in to a thriving group.

 

Karen found it very difficult to believe that she had Parkinson’s disease at first and she felt very depressed for a while. But the support of her GP and the Parkinson’s Disease specialist nurse helped her to cope. She doesn’t think she will ever accept the disease but tries to live her life as best as she can and to be positive. Although she says it would be very easy to stay at home, she pushes herself to do what she can, as best as she can. Achieving things, even if they are small, makes her feel better. She thinks it is important to not let the disease take over your life, to rest and do what you can when you can. Talking to others who have Parkinson’s is very important in helping her to cope.

 

She experiences freezing and festination. At first, she lost confidence going out shopping on her own but now she feels confident if she times her medication correctly and doesn’t do too much. She keeps a walking stick in her bag which helps her to carry on walking. Physiotherapy helped at first to learn the techniques of how to manage freezing.

 

Simple movements like putting a key in the door, chopping vegetables and walking all need a lot of thought and can be very tiring. She goes to Tai Chi once a week which helps her to concentrate her mind and to relax. Her employer has been very supportive in finding different jobs for her to do as her symptoms have progressed.

 

When Karen and her husband told their children about her illness, they were honest and positive and said that although it would affect their future, they would learn to live with it. She doesn’t let Parkinson’s disease take over family life and they use humour to cope. Her illness has brought her and husband even closer together. He found it very frustrating at first because there was nothing he could do to help and at first he wanted to do as much for her as possible. They now have an agreement that she will ask for help if she needs it.

 

Karen says she does get frightened, upset and angry at times, particularly when she thinks about the future. She manages her fears by telling herself that worrying about the future before it happens just stops her from doing the things she wants to do now.

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