May 2024 – “It’s a good time to have Parkinson’s”

“It’s a good time to have Parkinson’s”

~Bill Bell, co-founder of the Northwest Parkinson’s Foundation.

This sounds crazy. How can there ever be a good time to have a bad disease? But if you compare the Parkinson’s world today with what it was just two decades ago, when I was diagnosed, it’s an easy call. We should take notice of the progress, and celebrate what has been achieved by the PD community, from audacious brain operations to new ways of thinking about Parkinson’s Disease.

Back in the PD dark ages, which span roughly the period from the origin of our species to the early 1960’s, we had little in the way of effective therapies to deal with the motor symptoms of Parkinson’s, and the non-motor symptom were not viewed as all that significant (unless, of course you were the one who had them.)

Progress in developing new treatments was hindered by the view of Parkinson’s as a disease concentrated in a tiny region of the brain. In fact, this was a reason some thought PD would be the first major neurologic disease to be cured, it was just a matter of cracking the code of this one miniscule and dysfunctional part of the brain.
Now the view of what Parkinson’s is and does is broader. No longer confined by a brain-focused model of the disease, we acknowledge that PD may originate in the gut or the nasal system, and is at work on our bodies possibly for decades before motor symptoms become apparent, causing mayhem in our guts and destroying our sense of smell.

This new view should enable scientists to imagine new ways of attacking the disease, ways that were unthinkable when we conceived of Parkinson’s as primarily a brain malfunction.

A second vast change in the way we think about and treat Parkinson’s Disease is the recognition that non-motor symptoms are just as important, perhaps even more important, than motor symptoms. Doctors now take symptoms like depression and apathy as seriously as tremor or stiffness. This can result in huge quality of life improvements for patients.

Another example of outdated thinking: Parkinson’s is a malady of the elderly. This was a roadblock for many young patients in getting their disease diagnosed properly. Doctors “knew” that young people don’t get PD. This left them unable to see it when it was staring them in the face. Unfortunately, being “too young to have PD” is not a disqualification for having it.

Progress in the PD field has not been limited to ways of thinking about the problem. There have been strides made in treatment as well. One powerful example is deep brain stimulation (DBS) surgery. This procedure has been life-changing for many who have had it done but has only been performed on a fraction of the 15 to 40 percent of the patients estimated to be good candidates to benefit from it. So, there is lots of opportunity to make progress here.

Perhaps the most exciting development the past 20 years, for the first time we know a way of “modifying disease progression.” Or, to translate from medic-speak, we have a way to slow the progression of Parkinson’s. It has been convincingly demonstrated that workouts at 85% of your maximum heart rate for 30 minutes three times a week will temper the tempo of the disease. 

This has given rise to a variety of exercise programs for people with PD. You can choose anything from boxing to dancing, yoga to tai chi. All these activities can be adapted to your case of Parkinson’s, and all have been shown to help recover at least some of what PD steals from you.

So, is it a good time to have PD? Strangely enough, yes, it is. And getting better day by day.

by Peter Dunlap-Shohl
NW Parkinson’s Blogger

“It is the work of the creative to be a prosthetic imagination for the distracted and the dull”
– Maxwell Hubert Maxwell, playwright, butterfly collector, amateur surgeon and snob.