Parkinson's disease

Fiona and John - Interview 09

Female
Age at interview: 46

Brief outline: Fiona's husband was diagnosed in 2003 at the age of 42 with early onset Parkinson's Disease. He has continued to work full time.

Background: Married, 2 children aged 14 and 18. Husband is still working. She is an NHS Manager.

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Fiona’s husband was diagnosed in 2003 when he was 42. He first noticed that he couldn’t reach up properly in the shower and he felt disconnected with his left side. Fiona had noticed that John’s left arm didn’t swing when he was walking. His GP referred him to a neurologist and they used their private health insurance to see the neurologist at a private clinic. John was quickly diagnosed with early onset Parkinson’s Disease. They were both very shocked because they didn’t realize Parkinson’s Disease affected younger people. They decided not to tell anyone for a while, which helped them to get used to the diagnosis and become confident that his symptoms weren’t progressing fast and he was managing okay. When they did tell people, they were able to reassure others with this knowledge.

 

At first John was not prescribed any medication. He was referred to a physiotherapist who specialized in helping people with Parkinson’s Disease, after Fiona showed her GP an article on the benefits of physiotherapy for people with Parkinson’s Disease. The exercises have helped with the backache he gets from being slightly off balance.

 

They both continued to work full time. Although John worried about how things might change at work, his company has been very supportive and his colleagues treat him as one of the team. Fiona worried at first that everything would change overnight but it has not been the case and their life continued as normal for many years, with little adjustments needed. 

 

During the last year, John’s symptoms have changed and have become more noticeable. John recently started taking Ropinirole but it gave him extreme nausea and he is waiting to be put on a new medication regime. John has started to experience quite a bit of stiffness and difficulty with balance. Getting dressed takes a long time and he has bought some slip on shoes so that he doesn’t have to manage with laces. Most of the time John likes to try to do things himself.  Fiona tries to find a balance between helping him to do things, and letting him do things for himself, but it can be hard sometimes. It helps to have a joke together to ease any tension. Their children help out as much as they can to lighten the load.

 

John gets very tired and turning over in bed at night is an effort. They still do many activities as a family, but now they do things slightly different than they did before. They go on less strenuous walks and had a holiday on a cruise liner.

 

Although they didn’t feel they needed to use a support group when John was first diagnosed, they recently went to a local support group and found it very helpful to hear the experiences of others. Fiona found the Parkinson’s Disease Society helpline very useful to offload her worries and concerns and to speak to someone impartial.  She recommends the helpline to others.

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