Living with Parkinson's for 30 years: Andrew's story

Andrew’s Parkinson’s diagnosis began with an examination by a junior doctor. “He was very thorough and asked me if he was aware that the left and right sides of his body were behaving differently - this was news to me!” Andrew remembers. He was referred to a neurologist who eventually confirmed Andrew had Parkinson’s. 

How did Andrew feel about the diagnosis? “To be absolutely honest, I just accepted it as life. There were no tantrums or breakdowns,” Andrew recalls. 

“My mother and my grandmother were severely disabled, so I’ve lived with disability all my life. I felt I knew what to expect. I made the decision to do as much as I could, although I did soon discover my limitations.”

Facing the limitations

At the time, Andrew was teaching maths and involved in sport and outdoor pursuits at a secondary school.  

“I had a very understanding headmaster and the pupils were also accepting of the situation, as was I,” says Andrew. “We just got on with it really.” 

Andrew worked for a further 7 years, but admits: “I knew retirement would come sooner rather than later. I struggled on as best I could with sport. It did become very difficult, but the ultimate crunch point was my handwriting. It became smaller and smaller and totally illegible - not much good for an old-fashioned teacher who still used a whiteboard!  

“Living with Parkinson’s for 30 years has taught me tolerance up to a point, although I still get very frustrated. I used to enjoy DIY for example, and was good at it. 

“Now I still do it, but it’s much harder,” Andrew explains. “I know things aren’t up to the standard they used to be, but I do try to accept that and carry on.”

Taking care

Over the years, Andrew has experienced a variety of non-motor symptoms, but credits the care he has received along the way to help him manage his condition.

“In the West Midlands, we are very lucky to have an excellent service for Parkinson’s. I saw the same consultant for 25 years until he retired and the new neurologist is equally as excellent. I’ve had physiotherapy and have been offered speech and language therapy since I’ve noticed problems with my swallowing. 

“Our Parkinson’s nurses are also worth their weight in gold. They are so on the ball with helpful hints and developments in treatments. In many ways, I find them better than seeing a consultant because of how focused they are on the condition. 

Andrew’s symptoms have progressed and he has recently had two serious falls. But his drug regime has remained fairly stable since he was started on Madopar when he was first diagnosed. Later, he started taking ropinirole as well, which has led to more restful nights as it helped the restless legs he was experiencing.

“I have occasionally tried other drugs, but with not as much success. Getting my medication on time though, that really does make a real difference.”

Grateful

Looking back over the past 3 decades, Andrew feels like Parkinson’s still doesn’t have the profile it should have. But on a personal level, he admits he’s surprised he’s got on as well as he has.  

“I’ve never got involved with the condition as a whole so to speak, only what was happening to me. It does play on my mind to some extent that things could change, but it makes me realise how lucky I’ve been to now. I’m very grateful. 

“I always thought my mother gave in too easily to her disability. I’ve been determined to do as much as I could, but I do now feel a lot more sympathetic to people with disabilities.

“Really though I’ve found you have to grin and bear it until you find your strengths. Never give up. So I keep going as best I can and try to stick to the difficult bit - keep smiling.”