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Credible Hope

Monday June 03, 2019

Pull up a chair, whippersnapper, old Parkie Pete is about to regale you with some Parkinson's wisdom! I have been wandering in the Parkinson’s desert for 17 years since my diagnosis in 2002. (It’s actually been longer than that, as there is a decade or so when Parkinson's affects you but is not diagnosable.) My wanderings have been driven by the search for credible hope.

So what is “credible hope”? It is the difference between hope and hype, the conviction, rooted in reality, that it is within your power to significantly improve your quality of life with Parkinson’s. This is more than the casual, well-meant-but-questionable assertion that the cure is just around the corner, or ten years down the road. I have Parkinson's today and must deal with the falling, the drooling, the speech impediments, the cramping muscles, the tremor, depression etc…today and every day until a cure, or something like a cure is found.

It is an irony of credible hope that it must be admitted how difficult it is to unravel the mysteries of Parkinson's. You won’t be fooling anybody if you don’t cop to the gravity of the situation, and admit the difficulty involved in the undertaking. This admission not only enhances the credibility of your hope, it also makes you more aware of the magnitude of what has been accomplished so far, and the distance we have come in just the past few years. 

So let’s stipulate that for the thousands of years that humanity has suffered from Parkinson’s we have found little that can alleviate the symptoms, let alone cure Parkinsn's. It is a formidable disorder.

Depressing? No. Not when you consider that the discovery of Parkinson’s therapies and understanding of the way it affects those of us who must cope with it have been coming (relatively) thick and fast in the last half century. (OK, maybe just a wee bit depressing.)    

The Parkinson’s landscape I encountered back in 2002 was a bleak one, featuring inevitable progression of symptoms, leading inexorably to disability in 10 to15 years, Available treatments could only give symptomatic relief and only for a while, until the effects of the treatment became worse than the disease. And worst of all the helplessness of the patient to do anything substantial to ward any of these miseries off.

Trust me, I turned over every rock I could find, and came up with nothing but beetles, grubs, ants and worms.

The landscape has transformed in the short time since I was diagnosed. You want credible hope? Here is a list of things I benefit from every day that were not on the radar, or were only blips on the fringe of Parkinson's knowledge back when I was diagnosed.

1.) Deep Brain Stimulation (DBS). I know, I know, it’s brain surgery, and not for everyone, but it gave me a new lease on life, and, among other things, dealt completely with my tremor, and enhanced my nightly sleep. For a man living on borrowed time, it significantly raised the limit on time I could borrow. 

2.) Imbalance, once a ferocious and intractable feature of Parkinson’s, now is understood to be mitigated through balancing activities, like Yoga, or Tai Chi.  Do I still fall? Yes, but  I am sure that the frequency of these nasty episodes is down significantly from where it would be without daily balance practice.

3.) REM sleep disturbance, the phenomenon that allows Parkinson's patients to act out their dreams physically, leading to falling out of bed and assaults on your bed partner can be limited by taking melatonin. 3 mg a night and you are much less likely to rain hammer blows on your beloved. What’s not to like?

4.) Moderately intense exercise can reduce your motor symptoms by 30%, as per the research done by Jay Alberts on the effects of forced exercise. He explains it better than I can here.  (https://www.davisphinneyfoundation.org/blog/podcast-how-to-exercise-live-better-with-parkinsons-with-dr-jay-alberts/)
 
This is one of the things that is most significant in the recent history of Parkinson’s research. Why? Because of the leverage it gives the individual patient against Parkinson's. You don’t have to have exercise prescribed, (although it is wise to talk it over with your motion disorder specialist), it doesn’t cost much, it’s not that hard to do, and it is effective in coping with Parkinson's symptoms and possibly rewiring the brain so that it functions better.

5.) It is now clear that the sooner you adopt any of several significant Parkinson’s interventions, taking levodopa, exercising regularly, DBS among them, the slower your progression to disability will be.

These are things you can do today to make your quality of life higher, without waiting for new miracles to deliver you from the clutches of Parkinson's. My hope now is you act.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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