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29th August 2016

Crossing mountains despite Parkinson’s

Tony Seidl was shocked when, at age 39, doctors diagnosed him with Parkinson’s disease. After all, isn’t it something people’s grandparents have?

In fact, most of the one in 500 people who have Parkinson’s are over 50 but you can get it when you’re younger, too.1 Though the cause is unknown, this neurological condition happens when a person’s body doesn’t produce enough of the brain chemical dopamine, a neurotransmitter that helps regulate movement and emotional responses.

It isn’t fatal but the symptoms worsen over time, and there’s no cure. However, a therapy called deep brain stimulation (DBS) can vastly improve symptoms, which for Tony included inability to control his movements, body stiffness and speech problems. “I was hoarse all the time and then my upper lip suddenly refused to follow my commands, making my speech unclear,” he tells This Is Medtech.

Once diagnosed, Tony was on various medications for years but every seven to 11 months he’d have to switch because they’d stopped working. He began looking into DBS when side effects from the medicines had got so bad that he couldn’t work and he was relying on walking sticks, a walker and a wheelchair to get around. “My calves had become so swollen that they were the same size as my thighs,” he recalls.

In addition, Tony was only getting one or two hours of sleep at a time because he had to take the medicines every three hours, and it took an hour for them to kick in. “Also, during the day, if I needed to get something done, there was a very small window of time and I had to take an extra tablet,” he says.

Contemplating the surgical procedure for DBS was scary for Tony as well as his wife, who was worried about potentially having to look after a disabled husband as well as their young daughter. But after reading up on the therapy, the couple decided that it was relatively safe and, most notably, reversible. “If I had continued with the medicines, within two years I would have needed help with everyday life, so DBS was a risk I was willing to take.”

Two years later, Tony says the procedure has had a huge impact on his life. “The first night after the device was switched on, I was able to sleep six to eight hours, which was unbelievable,” he remembers. His ability to move around has also improved immensely. “I’ve almost completely got my life back.”

To show how far he’s come and to inspire other people with Parkinson’s, Tony recently completed an 11-day, 500 km cycling journey from Salzburg to Padua, crossing the Alps and stopping to meet with local patient groups along the way. The most memorable part of his trip was when he received a police escort into the centre of Udine, where a choir of Parkinson’s patients was waiting to sing opera to him.

“It was incredibly moving. As a completely normal person, you’re suddenly the carrier of hope for so many people.”

Tony continues to ignite sparks of hope in Parkinson’s patients around Europe by giving talks, sharing his experience via a personal blog and being active in a German self-help community.

Parkinson’s UK, What is Parkinson’s?

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