Jewish Health

Gary - Interview 17

Male
Age at interview: 53
Age at diagnosis: 35

Brief outline: Gary was diagnosed with Gaucher's disease 18 years ago, which was further complicated with a diagnosis of diabetes around the same time. He has since developed Parkinson's disease symptoms as a consequence the Gaucher's disease.

Background: Gary is married with one daughter and is an entertainer. Ethnic background/nationality: White British

Audio & video

Gary, an entertainer, was diagnosed with Gaucher’s disease eighteen years ago, aged 35, after experiencing prolonged bleeding episodes when shaving. Around the same time he was also diagnosed with diabetes. Gary was taught to self cannulate at home. After a few years his veins collapsed and a new drug, Miglustat, was prescribed. He started on 1 Miglustat PD for two weeks then 2 Miglustat. When he got to 3, Gary collapsed into a diabetic coma and the doctors realised that the new drug had an effect on sugar levels. Gary cut down on his insulin, had a complete break from the drug for three weeks and then had a controlled return to 3 Miglustat a day until tests revealed that the drug was damaging his kidneys. He now takes 1 Miglustat a day.
 
During a routine check for his Gaucher’s, the consultant noticed Gary’s arm twitching and referred him for a series of neurological checks. These checks revealed that the Gaucher’s cells had mutated to his brain and were causing Parkinson’s disease type symptoms.
 

Gary feels the Parkinson’s is moving faster than he anticipated and despite the drugs, he experiences a lot of cramps and pain which can make moving around and sleeping difficult. He is no longer able to do things like play the guitar or walk very far but takes the approach that he will try to find new things to do to make up for this. He feels frustrated that he is a burden on his wife and would like to be able to do more himself. 

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