MY HEALTH EXPERIENCE:Even though I knew it was coming, diagnosis was a shock, writes DAVID WALSH
ABOUT EIGHT years ago, I was lifting weights in the gym when I noticed that something was wrong. I started losing movement in my hand, which went cold and purple. I had a tremor, but I thought it was trapped nerves. Then it spread to my hip and left leg and foot. I ended up dragging my foot around. My handwriting became a kind of squiggle. My eyesight and speech, smell and taste diminished a little bit.
I Googled the symptoms and it came back as Parkinson’s disease. I’m not saying that’s the ideal way to find out about Parkinson’s. The condition is a result of a shortage of dopamine, a chemical that helps instructions from the brain to cross from one nerve cell to the next, controlling movement.
By the time I was ready to be diagnosed four years ago, it was obvious to anybody who had a little bit of knowledge about the disease that I had Parkinson’s. I’m 45 and have young onset Parkinson’s. Even though I knew it was coming, the diagnosis was a shock. But I was glad to hear that it was something I could live with by taking the appropriate medication.
It’s a tough road because the medication needs to be changed constantly. The amount of medication I take has to be increased once or twice a year. There are side effects with that. It becomes a little bit more difficult to deal with in terms of symptoms. My side effect is dyskinesia or involuntary movements. If you look at Michael J Fox and the way he moves erratically, that’s a result of having too much medication for a period. I get dyskinesia in feet, my left leg, right arm and left shoulder.
I work at four jobs – I’m a waiter, a bartender, a bouncer and I deliver newspapers. I have financial commitments to my ex-partner and our daughter. I can’t afford to be ill, but sometimes I can feel the symptoms coming on all of a sudden and I know it’s time to sit down. The people I work for make things as easy as they can for me. I work with a good crew of lads. They know that if I disappear for 20 minutes, it’s not because I’m lazy – it’s because I need the rest.
My quality of life is such that I have my dark days. I wake up some mornings and I have to try to stop myself from thinking about the future too much. Sometimes, after waking up, I can’t walk for half an hour because my feet just won’t carry me. I have to wait for the medication to kick in. I do a lot of stretching and I get to the gym six days a week. That helps me physically and mentally. It seems to lift my spirits.
I recently cycled from San Diego to New York to raise money for the Parkinson’s Association of Ireland. I spent a year preparing for that. My older neurologist was a bit concerned, but the younger neurologist said I should go for it because I don’t know how long I’ll be able to do that. I’m planning to row from Dublin to Limerick via the canal system next summer.
I sometimes suffer from fatigue. I get absolutely wiped out and can’t move. I sit and drool and can’t even lift my arms. You’d fall asleep standing up.
There’s a lot of pain involved as well. I get pains in my ankles, legs and my left shoulder. Coming to the end of my shift the other day, I had to bail out and go into the kitchen of the hotel. I was sweating profusely. It’s hard to explain. It’s like arthritic pain or, at least, that’s what I assume it’s like. It’s debilitating, a bit like having a migraine but it’s in your body.
I take Stalevo, which is a synthetic version of dopamine. It appears to me that it has almost the same effect that the drug ecstasy has. It keeps my pupils open and it’s confusing because there is so much information coming in.
When I walk into a bright room, the pupils don’t go small. It’s like an information overload. I can almost see electrical discharges in the corner of my eyes. I get very disoriented as a result.
Parkinson’s disease is an illness that’s individual to everyone. While I suffer from the symptoms I describe, other people don’t. I watch my diet. I don’t eat meat anymore because I find it affects the medication. I eat lots of carbohydrates and fish. I don’t eat before 3pm because the medication won’t work with food in my stomach.
Insomnia is a huge factor. Some nights, I get only three or four hours’ sleep. But if I put my mind to it, I can do a lot. I’m doing things now, like the cycling and the rowing, that I wouldn’t have done had I not been diagnosed. I’m swimming as well. It’s very important for me to keep moving all the time. I find my ability to organise things has increased because I tend to think more clearly about what I need to do. I may not get a second chance with my energy levels sometimes being so low.
I don’t know what my prognosis is. When I was in America, I met one of the greatest boxing trainers of all time, Freddie Roach. He has had Parkinson’s disease for 18 years, but he’s still working out.
In conversation with Colette Sheridan
