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Three Huge Changes for People with Parkinson's

Friday March 13, 2015

In 2002, when I was officially diagnosed with PD, my younger sister was on the case. Without telling me, she went to the office of a large Parkinson’s organization and sat down with an expert in the disease to find out what it would mean. She called me afterward, with encouraging news. The expert told her, “Your brother will never know the major symptoms of Parkinson’s Disease.” and went on to proclaim that there would certainly be a cure within ten years.

(I’ll wait for a minute until you gain control of your hysterical laughter and come back from your subsequent trip to the bathroom.)

(Are you back now? OK.)

We all know how that turned out. I would be slightly miffed at the recklessness of this prophet of PD, but to be fair, this was not the only time I heard that 10-year prediction. And to be even fairer, while we have no ”cure” in hand, we have experienced a near revolution in the way we look at, and are starting to treat, Parkinson’s.

There are three components to this change, all of which have the promise to contribute greatly to the care and everyday quality of life experienced by those of us with PD.

Illustration PDS 3.4.15First, there is now possibility of Deep Brain Stimulation surgery. While the number of people that qualify for the surgery at any one moment is low, over time the number of people who undergo the operation will be quite significant. DBS is not a cure, and can introduce undesirable side effects of its own. And it is of course, brain surgery, with all the attendant risks. It only helps with the motor symptoms of Parkinson’s. But it can affect those symptoms powerfully, restoring much of a patient’s quality of life for an indefinite but clearly long period.

The second huge development is the elevation of attention paid to non-motor symptoms of PD. These are symptoms that are not movement problems. When I was diagnosed, depression, dementia, hallucination, apathy, loss of sense of smell and more, were seen as secondary to the motor problems. But many find these non-motor symptoms more onerous than motor problems. With the elevation of these concerns to front-burner status, doctors and patients are more likely to be aware of these issues and more motivated to address them.

The greater attention we now pay to these symptoms creates opportunity to see PD more clearly. Parkinson’s Disease is much more than a failure of a small part of the brain. It doesn’t even become a brain disease until it has been at work in your gut and elsewhere for years. A true cure will require looking beyond the dopamine pathways of the deep brain.

The final exciting development of the past decade is the discovery of the mighty role exercise can play in moderating the symptoms, and likely the course of the illness. When I was diagnosed, there was precious little to be found anywhere about the power of exercise to offer relief from PD. Now we know it can help maintain and improve balance, moderate many motor and non-motor symptoms, and likely slow disease progression, which nothing else we’ve tried seems to do.
Ten years is an eon to a sick person. It is just a blink of an eye to Parkinson’s Disease. I wish our progress were faster. I need it to be faster, as do millions around the world. But it is amazing what can happen in the blink of an eye.


Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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