What is Parkinson’s disease
Parkinson’s disease is one of a group of conditions called motor system disorders. Though the cause is unknown, Parkinson’s occurs when a person’s body doesn’t produce enough of the brain chemical dopamine, a neurotransmitter that helps regulate movement and emotional responses. Worldwide, 6 million people suffer from Parkinson’s.
Parkinson’s isn’t fatal, but the symptoms worsen over time, and there’s no cure. Tony’s symptoms 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 explains. For Jerzy Kamionowski, a Polish academic, it was totally unexpected. “I had been exceptionally busy so I put it all down to the pressure I had been under,” says Jerzy. Inge Carstensen, 64, a competitive dance teacher says, “I did not expect the diagnosis and for the first eight weeks after it, I just cried.”
The limitations of medication
Once diagnosed, there are various medications which can be used to control the disease, but patients often have to switch every 7 to 11 months as they stop being effective.
Doctors increased Jerzy’s dose of L-dopa, a disease-modifying medication often given to Parkinson’s patients. But the higher doses came with side effects, and his lust for life was on the wane. “I was fed up with everything and was losing the will to truly live,” he says.
Tony was only getting one or two hours of sleep at a time because he had to take his medication every three hours, and it took an hour for it to kick in. He was relying on walking sticks, a walker and a wheelchair to get around, and DBS can vastly improve this situation. “My calves had become so swollen that they were the same size as my thighs,” he recalls.
He began looking into a therapy called Deep Brain Stimulation (DBS) when the side effects from the medication had got so bad that he couldn’t work.
Investigating DBS therapy
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 in addition to their young daughter. But after reading up on the therapy, the couple decided that it was relatively safe and, most importantly, reversible. Tony explains, “If I had continued with the medication, within two years I would have needed help with everyday life, so DBS was a risk I was willing to take.”
Inge Carstensen says, “I know that many patients fear the operation but the day of my DBS surgery was December 12th 2012, and it was my lucky day.”
What is DBS therapy and how does it work?
DBS therapy involves surgery to implant electrodes into the brain. These are attached to fine wires which run under the skin behind the ear and down the neck, and connect to a pulse generator. The generator is implanted under the skin in the patient’s chest. When it’s switched on, the electrodes deliver high frequency stimulation to specific areas. It works a bit like a pacemaker does for hearts. The stimulation changes some of the electrical signals in the brain which cause Parkinson’s symptoms. This can reduce the tremors, muscular rigidity, frozen gait, unstable posture and poor coordination typical of Parkinson’s.
How DBS has worked for Jerzy, Inge and Tony
When doctors switched Jerzy’s device on, the effect was instantaneous. “It worked miracles,” he says. “In a funny way, since my diagnosis I’ve enjoyed life like never before. I’ve got nothing to lose so I just live in the moment,” he continues.
“How has my life changed since my DBS surgery?,” asks Inge. “There are a lot of things that are different now. The tremor has gone, I’m able to move my left hand normally and all my friends have told me that I look like I’ve found the fountain of youth! Most importantly, I went back to having a normal sleeping habit, and that is most important for me.”
Two years after surgery, 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.”
Getting their lives back
Tony Seidl’s incredible journey all started with a vow that Tony made to himself. “If everything goes well with this surgery, I will cross the Alps by bike and visit my namesake, St. Anthony of Padua.” Tony was true to his word and started that 500 km, 11 day journey on his 50th birthday. His tour is part of the Parkinson’s 100 Challenge, the European Parkinson’s Disease Association’s fundraising initiative which aims to improve the lives of people living with Parkinson’s. The journey started in his home town of Altoetting and progressed through Salzburg, Udine and Mestre en route to Padua. “It was incredibly moving. As a completely normal person, you’re suddenly the carrier of hope for so many people.”
It may seem paradoxical, but Jerzy Kamionowski says he has a sense of optimism and contentment now that had been missing in his earlier years. And when his symptoms are well controlled, he feels ready to tackle anything. He’s even found a spontaneous side of himself that he never knew existed. Now, when he’s not writing limericks in Polish, compiling YouTube playlists of his favourite songs or contemplating another academic tome, he is planning activities and holidays. His next trip? “We’re going to Tenerife this summer,” he says. “There’s a 3,780 metre high mountain there, and I’m going to climb it. I’ve learned that we have to accept life as it is and squeeze as much out of it as we can.”
“I may have Parkinson’s, but life goes on, I love my life and I will stand my ground,” says Inge Carstensen. “Although I do still slouch, I have also adopted a much better posture. I recently received an encouraging compliment from the patient support group I visit regularly. I was mistaken for a carer not a Parkinson’s patient. It was a wonderful surprise!”