Parkinson's disease

Natalia - Interview 18

Female
Age at interview: 63
Age at diagnosis: 55

Brief outline: Diagnosed in 1999, Natalia takes Madopar and Mirapexin but has times during the day when she feels weak, and has difficulty standing and understanding and participating in conversations.

Background: Widow, 1 adult daughter, living alone, retired university lecturer.

Audio & video

Natalia’s early symptoms were difficulty in handwriting and a change in her gait, noticed more by other people than herself. Because her symptoms started soon after the death of her husband, her GP attributed them to her bereavement. Tests in hospital did not produce a diagnosis but she guessed what the problem was after reading an autobiography by Jacqueline Du Pré whose father had Parkinson’s disease. The more she read, the more convinced she was but the first neurologist she saw did not confirm the diagnosis. She asked for a second opinion and this time Parkinson’s was diagnosed.  She started on Madopar which made her much better for a year.

 

Subsequently a new consultant has tried her on various medicines. In an attempt to understand how the medicines were affecting her, she found it useful to make a graph of her symptoms in relation to when she took each dose. When she was first on Mirapexin as well as Madopar she became so depressed she was unable to work. But as the dose was increased and it began to work, she felt better. She has remained pretty well and is still on Mirapexin but has times when she feels weak, has difficulty standing and  understanding and participating in conversations. When she feels weak she feels her brain does not get its messages to her arms and she can’t do move papers around her desk or cut her food up. It usually occurs when she is due for her medication. But after taking it, it may be some time before she actually recovers.

 

To others she appears to be well, so people are not always aware of the problems she is having and she finds this annoying when actually every day is a struggle. Sometimes in shops she explains her problem and gets a sympathetic response, though some people don’t believe her and think she is too young to have Parkinson’s disease.

 

She feels it should be easier to see a specialist at least every 6 months. She often gets to see the specialist nurse instead. She wonders how, since so little interest is taken in her progress, the doctors know what Parkinson’s disease is really like for patients. The nurse has suggested she could experiment with different doses and timings of her drugs but she is afraid of the effects this might have.

 

She prefers not to think about the future but so far feels lucky that her Parkinson’s disease has not progressed fast.

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