The toughest game of his life
Although he was not entirely unprepared, ice hockey coach Björn Hellkvist's diagnosis with Parkinson's disease still came as a shock. His advice to others hit by the disease is simple; "Break down and have a good, long cry. But after that, you have to make damn sure that you live like normal."
It took a long time, but what finally got Björn Hellkvist to seek medical attention was one day four years ago when he was standing in the kitchen holding his daughter, a few months old, and just tipped over.
"When I tried to counter with my right foot, it felt like it was stuck to the floor and I just fell. By grabbing hold of the fridge door, I managed to make sure my daughter wasn't hurt in the fall," says Björn Hellkvist.
But even before that incident, he had already had many signs that something was not quite right.
This had to do with cramps, fatigue and dizziness and with coffee cups that he was unable to hold without spilling, a right hand falling asleep when he was doing some hammering around the house or being unable to shave because his right hand could not find his face. But he had put off going to the doctor's for almost five years, thinking ahh, it will probably soon pass.
Björn Hellkvist is the hockey talent that won himself a place in the boy's national team through hard training and a lot of persistence. But aged 17, he suddenly lost his peripheral vision on the right side and began to have slower reactions, which was possibly an early symptom of the disease. So it got more and more difficult for him to play well and avoid hard tackles.
"When I was 21, the doctors told me I had to quit. I'd had too many concussions, and my knees were in too bad a state," says Björn Hellkvist.
Instead, he took up a coaching career in order to stay with the sport he loved.
He was 32 when he sought medical advice, in the belief that it might be something rheumatic, but fairly soon came the news Parkinson's disease. Björn Hellkvist knew all too well what it was because his maternal grandfather had had the disease until his death.
"I was lost for words. Thoughts flashed through my mind; coach for Rögle, breadwinner, sportsman and just the thought of how Granddad was when he passed away it's a disease you don't want to have when you're 32," says Björn Hellkvist.
The diagnosis was fully established when he received the drug levodopa for the first time.
"It was amazing, like the first time I came out of the optician's and saw that the trees had leaves and weren't just green, he says, putting on his glasses."
The first year with levodopa carried on the same way. Life became simple again for a while.
"I looked after my job really well, but then one day when I was cutting the grass, I suddenly felt the same tremor in my left hand as I'd had in my right hand," he says.
It was the beginning of a difficult time. The medicines no longer worked as well as they had. Their effect wore off, all the time with worse cramps as a result. Björn Hellkvist increased his doses to cope with the demanding job of coaching Rögle. After an intense day, he collapsed, suffering epilepsy-like cramps and respiratory arrest that resulted in emergency transportation to the hospital and in his care being taken over by the neurologists at Lund University Hospital. There they concluded that he had overloaded his dopamine receptors through self-caused erroneous medication. The doctors discontinued all medication and began work to find the right treatment for him with new preparations. But it was an arduous road.
"It was hell for about two years until six months ago, when we found the right balance. But when it happened, it was as if life just tumbled down from the heavenlies again," he says.
But he is aware that neither this medication will work forever. For this reason, Björn Hellkvist and his doctors are planning for a DBS, a Deep Brain Stimulation procedure, in which electrodes are implanted into the brain to stimulate the dopamine cells.
"The surgery itself won't make me better than I am today, but I'll hopefully be able to cut down drastically on the medicines," he says.
In this way, he will also very probably be able to live a functional life for quite some time. But the procedure is special because he will be awake while the electrodes are being implanted in the brain. This will enable the doctor to see when the right area of the brain is being stimulated which is when his tremor immediately stops. This does not deter Björn Hellkvist.
"I don't think anyone actively wants to go through with it, but as I see it, it would be cowardly and selfish towards my family not to do it," he says.
But Björn Hellkvist also puts in hard work to improve his chances.
"I try to work out once a day. I believe the workout sends signals to the brain and that the body can find new ways to send signals. Presumably, the time will come when my illness will oppress me to the extent that I won't be able to do what I want. But I believe I can hold off that time by being physically active and damn stubborn," he says.
But what today sounds quite spirited has not always been so easy.
"When it was at its worst, life was hell," he says.
He talks about having to leave his job as coach of Rögle shortly before the team achieved its target of winning promotion to the top flight and how for a while he went into a depression so deep that he even had suicidal thoughts.
"As an athlete, you are big, strong and invincible. I went in with a little of that attitude, but it doesn't work with this disease. You have to have other thinking as well," he says.
"Your whole life plan crashes, suddenly it feels as if your deadline for life has been brought forward drastically," he says.
Although Björn Hellkvist has Parkinson's disease in the family his grandfather also suffered from the disease he has not tested to see if he has any of the relatively newly discovered risk genes. He says that as long as there is no disease-modifying drug, it does not matter.
"And as father to my daughters to go around knowing that one of them might have it would just make me constantly be on the lookout for the first symptom. You just can't live like that," he says.
Text: Fredrik Hedlund. Published in Medicinsk Vetenskap 2/2013