Parkinson's disease

Neil - Interview 21

Male
Age at interview: 48
Age at diagnosis: 35

Brief outline: Diagnosed 13 years ago, Neil has had GDNF and deep brain stimulation which improved his symptoms. Now he has stiffness, slow walking, and sometimes his speech is affected.

Background: Partner, 3 step-children, retired HGV driver.

Audio & video

Neil was in his early thirties when he noticed that his left arm was becoming stiff and it was harder to unlock doors. His walking was slower and his handwriting was becoming difficult to read. He went to his GP, who thought he was doing too much and gave him some medication. The symptoms continued and he was referred to a consultant at his local hospital. A firm diagnosis could not be given so he was referred to a hospital in London for a second opinion. It took two years from when he first noticed that his handwriting was different, for Parkinson’s Disease to be diagnosed.

 

Neil was scared that he would be in a wheelchair or need to use a stick. He tried a range of different medication but the only one that made any difference was Sinemet Plus. Neil was put forward for an operation call GDNF, which was very successful and cured many of his symptoms. For two years he felt like his old self. Only ten people in the UK were offered the treatment at the time. But unexpectedly the pharmaceutical company withdrew the drug which was used as monthly top up after the operation. Neil was devastated and his symptoms soon returned.

 

Two years later he had deep brain stimulation, which was successful. Together with medication, his symptoms have drastically improved. Now he has stiffness, slow walking, and sometimes his speech is affected. 

 

Being diagnosed at a young age has been hard. One of the worst things is dealing with strangers. Sometimes people think that Neil is drunk because his speech is slurred and he drags his leg at times. It is hard to cope with stranger’s wrong interpretations but it is something that he has learnt to live.

 

He encourages others to not give up if they are not offered deep brain stimulation straight away but to keep pushing for it, if it is something they want to happen.

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