What it feels like to have Parkinson’s disease

Oct 6, 2015

In 1985, science journalist Jon Palfreman investigated a group of drug addicts who were struck with Parkinson’s-like symptoms after taking tainted heroin.

Thirty years later, Palfreman was diagnosed with Parkinson’s disease himself. His book, "Brain Storms," describes his journey with the disease and new treatments for patients. 

“Initially I denied [my diagnosis] and sought second opinions. I got pretty angry. I tried to keep it secret for a while, just like Michael J. Fox did,” Palfreman says, “It took me, I’d say, about a year before I really processed it properly and then I realized that I had a destiny to use my training as a science journalist and my insights as a patient to explore this malady, which was now going to be part of my life.” 

About 60,000 people each year in the US alone are diagnosed with Parkinson's disease. Palfreman says the malady means many things that he used to do automatically, now come with much more difficulty. 

“It is very much like getting on a plane and going to London and renting a car. You can drive on the left-hand side of the road, but you have to use your conscious brain to pay attention. Everything's a bit harder. When I walk, I have to sort of consciously move my arms back and forth. Whereas, when a healthy person does it, it's automatic. And so a lot of things that you got for free you have to work at,” Palfreman says. 

The disease has three stages. The first noticeable symptoms are subtle, such as a loss of smell, constipation and possible sleeping disorders. After that, the disease attacks a person’s ability to move. The third stage produces cognitive impairment and hallucinations. 

“What we classically think of Parkinson’s — the tremor, the slowness, the rigidity, the stooped gait — is really the middle act of a three-act play and that, basically, the diseases present maybe 10 or 15 years before a person gets diagnosed,” Palfreman says. “It's a much more systemic disease than it was once thought to be.”

There are several new treatments for the disease Palfreman has been watching. One of them is based on the theory that the disease is caused by a protein, alpha-synuclein, going rogue, forming clumps called amyloids, and jumping from cell to cell, killing cells in their wake. 

“If alpha-synuclein is causing all the problems, then trying to reduce the levels of it makes perfect sense, and in the next year or two, going into clinical trials, there are a number of products which are designed to sort of dissolve alpha-synuclein,” Palfreman says. “If they work, I mean the prospects are amazing. Somebody who didn't have the disease, if you can get in early enough, would never develop the motor symptoms. And somebody like me who had the motor symptoms could possibly be stabilized so it didn't get any worse. So there's a lot of excitement at the moment around this.” 

Palfreman says there are other things people with Parkinson’s can do to control the disease. 

“The one thing which really everybody should do is regular exercise because people who do exercise and stay mobile, they do much, much, much better than people who withdraw or give up,” Palfreman says. “Because you've still got the conscious part of your brain, you can still drive like you're driving into London on the wrong side of the road. It just takes a bit more energy and effort, but it still works.”

In the future, Palfreman predicts medical specialists will develop more advanced ways to control the disease.  

“Just like we have very sophisticated heart pacemakers, we might get a situation where I might get an electrode in my brain and, just before my my left hand wants to set off a tremor it sets off a pulse and reboots that part of the brain. And I think these things are pretty promising so that even if you haven't got a total cure, the management thing will become much better and we’ll be able to live pretty much essentially normal lives.”

This story first appeared as an interview on Science Friday with Ira Flatow.