How a brain implant gave a Parkinson’s patient a new lease on life
It started in August 2009. One morning, shortly after waking, Jerzy Kamionowski’s wife Ania, took a second look at her husband. Something was different about him. “Your hand is trembling,” she said. And so it was. But Jerzy wasn’t about to panic. He had been under a lot of stress at work and endured a short bout of depression recently so he figured it would pass. An academic living in Poland, Jerzy had been spending countless hours writing a book, while teaching and juggling the usual stresses of home life. “I had been exceptionally busy so I put it all down to the pressure I had been under,” he says.
When a friend of his wife visited from the US, she noticed it too. Jerzy’s left hand was regularly showing signs of tremor but, as it wasn’t stopping him living his life, he just got on with it – meeting deadlines, writing lectures, tutoring students.
A year later, his wife’s friend returned for another visit. “She said it was worse and advised me to see a specialist,” Jerzy recalls. “We hadn’t noticed, but the tremor had become more severe very gradually.” The first doctor he saw gave Jerzy the all clear. But, just to be sure, he got a second opinion. The second doctor feared it may have been Parkinson’s disease and sent Jerzy to see a professor in Warsaw. The professor said Jerzy was developing Parkinson’s. That diagnosis, in April 2011, was confirmed the following year by a more sophisticated scan showing definitive changes in his brain.
A turn for the worse
By 2013, with stress at work abating, Jerzy hoped he may get some respite from the tremor and occasional stiffness he had been experiencing. Unfortunately, his condition began deteriorating rapidly. “Over a three-month period, everything got worse,” he says. “I had previously only experienced symptoms on my left side and rarely had trouble sleeping. But by the end of that year I had an extremely stiff neck and shoulders, and my symptoms were spreading.” 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. “I rarely initiated anything; I didn’t want to go out and I was miserable.”
Then, one day, Jerzy’s doctor told him about deep-brain stimulation – a Parkinson’s treatment that uses electrical signals to reduce motor symptoms. Jerzy was a good candidate: he had been diagnosed for more than five years, his medication was not working for him, and he was generally in good health. At the age of 51, he thought it was worth a try. Doctors drilled two holes in Jerzy’s skull and installed electrodes. “It wasn’t physically painful but the doctor asked me a multitude of questions during the procedures which was very tiring,” he says.
When he woke after surgery, Jerzy tried to send text messages to his wife and friends to say all had gone well. “I had written the texts in advance so all I needed to do was press ‘send’ – but I couldn’t do it. I couldn’t focus.” Jerzy panicked. Had the doctors made a mistake during surgery? Maybe the drill had scrambled his brain. Was this how he would live the rest of his days?
Just in the nick of time, a doctor passed by to check on him. There had been no problems with the surgery: the difficulty Jerzy was having was temporary and would resolve itself within 24 hours. A few days later came the big test. Doctors switched on the device to see if it worked. The effect was instantaneous. “It worked miracles,” Jerzy says.It wasn’t quite perfect – the electrodes have been adjusted three times – but it has helped control the symptoms that threatened to get in the way of Jerzy’s ambition to travel, to climb mountains and enjoy life.
A Parkinson’s diagnosis can come as a shock. As it is a degenerative illness, people often fear it will mean the end life as they know it. That’s why Jerzy’s first reaction to diagnosis in 2011 was to drive to Norway – a country he had always wanted to visit – and spend a few weeks walking mountain trails. “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 says. “I was brought up to consider everything carefully; to think twice and then think again. Now, suddenly, I find I can go with the flow.”
It may seem paradoxical but Jerzy 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 has even found a spontaneous side of himself that he never knew existed. “After the last time my electrodes were adjusted, I suggested to my wife and son Filip that we go to Lanzarote – a week later, we were there!”
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 mountain – Pico Teide, 3,718 metres above sea level – 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.”
Author: Gary Finnegan