Parkinson's disease

Brian - Interview 35

Male
Age at interview: 77
Age at diagnosis: 63

Brief outline: Diagnosed 14 years ago Brian was on Madopar for 3 years, When Pergolide was added it affected his heart which had been damaged in childhood from Rheumatic fever. He is now on Apomorphine, delivered by a pump into his abdominal wall.

Background: Married, 2 children. Retired Professor of Music.

Audio & video

Brian was diagnosed with Parkinson’s disease in 1994 when he was 63. The symptoms he had noticed were right sided stiffness and difficulty in walking. He had also noticed that his writing had got smaller and he had particular difficulty forming w’s. Before this he had felt a loss of energy but had assumed this was due to his age. He hadn’t suspected PD as he had no tremor. He was more afraid it could be MS or Motor Neurone Disease.

 

Once he started on Madopar his symptoms improved but after 3 years they were coming back Pergolide was added. This worked well at first except that it produced insomnia but after 2-3 years he began to notice a lot of missed heart beats and it was decided this was caused by Pergolide. He was changed to Ropinirole and then Rotigotine patches but with this his symptoms returned and were much worse than they had ever been. He was then put on Apomorphine which is delivered by a pump as an infusion through a needle inserted each day into his abdominal wall. While this works well it does also cause unexpected vomiting without nausea. He has to take Domperadine for this. He has experienced hallucinations which he attributes to the Apomorphine but thinks may also be caused by Amitryptilline which he takes to help him sleep.

 

He has been told he is not eligible for Deep Brain Stimulation because of his age and his history of rheumatic fever.

 

Brian has given up driving because he tends to fall asleep unexpectedly. He can walk a mile and is receiving physiotherapy as part of a trial. He has experienced freezing but feels he has learnt to overcome it. Though he feels it is going to happen he is able keep moving.

 

He has an amazing electric chair which he can change so that he lies back or can be lifted forwards and into a standing position.

 

Although he can no longer derive much pleasure from playing the piano and continues to have problems with w’s, he still enjoys listening to music, reading scores and carrying out research and gardening.

 

His wife is unable to be away from him at the moment as only she knows how to insert the needle for the pump.

 

He minds the fact that some people assume that he can’t take part in conversations. He is sometimes embarrassed with strangers, feeling humiliated by the fact that he tends to drool and does not readily take part in conversations. He doesn’t attend PD society meetings as he feels he might find it depressing. He avoids thinking too much about the future.

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