Parkinson's disease - "For me, everything just takes a bit longer"

Ernie May was diagnosed with Parkinson’s when he was 65. He tells us his story.

“Looking back, I was experiencing the symptoms of Parkinson’s for at least two years before my diagnosis. I had ‘frozen’ a couple of times - literally stopped moving - while walking and I seemed to be having problems with my facial muscles, which were causing me to dribble badly.

“I had suffered for years with a painful right hip due to arthritis in my adolescence. This I thought, now I know incorrectly, explained the ‘freezing’ incidents. After carrying out a few basic tests, my GP concluded there was nothing wrong with my facial muscles and that the root cause of my dribbling could be excess saliva caused by the type of filling used by my dentist.

“Early in 2005 I had a full right hip replacement. Though initially I seemed to recover well, it soon became clear my progress was falling behind the group of patients I’d been admitted with. They soon went home, while my mobility wasn’t improving.

“I was transferred to a rehabilitation centre, where one of the GPs suspected I had Parkinson’s simply by looking at my expressionless face. I was referred to a consultant, who confirmed Parkinson’s. He was accompanied by a Parkinson’s disease nurse specialist (PDNS), who gave me some information from the Parkinson’s Disease Society about what the condition is.

“At the moment I’m in relatively good health. My joints, particularly my ankles, tend to be very stiff in the mornings and my movement is slow. I try and exercise as much as I can, which seems to help with my mobility. I believe it’s very important to stay as active as possible when you have Parkinson’s, so I try to go to the gym three times a week.

“Fortunately I have only a very slight tremor in my left hand, which in itself is not a problem. Currently, the biggest problem I have is getting up from a chair. Also, my handwriting is so small that even I can’t read it, so I just tell people I can no longer write! Recently, I’ve been experiencing problems with my speech, which is very frustrating as often people can’t hear me very well.

“I see my consultant every three months and the PDNS is usually there too. She gives me the information I need to manage my symptoms effectively so I can do as much as I can and live life to the full, albeit in the slow lane.

“I’m also secretary of my local Parkinson’s Disease Society support group, which was set up eight months after my diagnosis. Being part of the group is extremely helpful as there are people I can talk to who are going through the same things.

“Living with this condition can be incredibly difficult, but life doesn’t end with a Parkinson’s diagnosis. For me, everything just takes a bit longer.”