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Drug gives normal life back to boy with Parkinson's disease Jennifer Fong , Canwest News Service Published: Sunday, August 03, 2008 EDMONTON - Andrew Carnegie, who recently turned 12, is something of a Guitar Hero. Even playing on the video game's next-to-impossible expert level, the seventh grader can shred like Joe Perry. But a couple of months ago, Andrew would have been lucky to make it through half of his favourite song, Aerosmith's Walk This Way. Every morning, Andrew woke up in a sweat, his head pounding and his body stiff. The muscles along the left side of his body cramped constantly. Eating was torturous. He lost his balance easily, crashing down the stairs at home with enough force to break the railing. After two years of endless doctors' appointments, Andrew was diagnosed with Parkinsonism in May. Parkinsonism is often caused by Parkinson's disease, a neurodegenerative disorder caused by the death of the cells that produce dopamine, a chemical that carries signals between the nerves and the brain. Symptoms include muscular stiffness, shaking, impaired balance and slow movement. It's extremely rare for children to be diagnosed with Parkinson's. "The average age is about 56," said Ray Williams, executive director of the Parkinson's Society of Alberta, which has been providing support to the Carnegies since Andrew's diagnosis. "But 11 years old, and he has Parkinsonism - that's the youngest one that we're certainly dealing with here, for sure." Because it is so uncommon, doctors had a hard time pinpointing what was wrong with Andrew. The Carnegies were referred to a laundry list of pediatricians, neurologists and specialists, sometimes waiting months for appointments, only to be disappointed by doctors who said there was nothing they could do. All the while, Andrew's condition got worse. "Nobody wanted to give it a name, or give it an answer," mom Deirdre said. She and her husband, Dan, first noticed something was wrong when Andrew, 10 at the time, complained that his shoes didn't fit. They soon realized Andrew's right foot, a size 6.5, was two-and-a-half sizes larger than his left. "And then it started this big long process," Deirdre said. Local doctors the Carnegies were referred to could not see what was wrong with Andrew. "What we were getting was, 'He's healthy, what are you worried about?'" said Dan. By then, the disease had begun to affect the right side of Andrew's body. His handwriting became almost illegible. He could no longer walk the three blocks to school without falling. "He was like a decrepit old man," said Deirdre. Andrew had been a perfectly healthy, active boy who loved sports and had far too much energy. Now he had too little. "I got fed up and I got up on the Internet, and I started researching," said Dan. He stumbled on an article about hemiparkinsonism-hemiatrophy syndrome that outlined symptoms that fit Andrew to a T. "About the third paragraph, it says most people with this condition have two different sized feet. Bing! I think I just nailed it," Dan said. "I knew more about that particular condition than (the doctors) did." Eventually, Andrew was referred to Parkinson's expert Dr. Ali Rajput in Saskatchewan. After a few hours of testing, Rajput confirmed what the Carnegies had figured all along - Andrew had Parkinsonism. Even though Rajput gave him a positive assessment, concluding that his condition will be easy to manage, Andrew left in tears. "I'm crying because I'm happy," Andrew told his parents. "Now I know I'm not crazy." Andrew was prescribed Sinemet, a dopamine substitute commonly used to treat Parkinson's, and the effects were instant. "He runs up to me and is like, 'Dad, look what I can do!' " remembered Dan. Andrew touched each finger on his left hand to his thumb. The day before this feat had been impossible. "It was like this miracle drug," Deirdre said. Now, Andrew takes Sinemet five times a day and life is pretty much back to normal. He even plans to take part in the Parkinson's Society's SuperWalk in September. "I don't care about it anymore. It's not a big ordeal. It's like the door prize that nobody wants," he said simply. "I'm still normal." With sick children, the Carnegies said parents have to be tenacious - do research, document every detail, and keep copies of medical records. "For other parents, they have to be proactive too," Deirdre said. Andrew has dreams of sportscasting for TSN, and one day becoming a general manager of an NHL team - perhaps for the Oilers. For now though, he's just happy to finally be able to rock out. Edmonton Journal [log in to unmask] © Edmonton Journal 2008 Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn