NeuroTalk Support Groups - FREE Patient Symposium for Parkinson's Patients

I think it's wonderful that this foundation is trying to think of what Parkinson's patients need the most. Having been diagnosed a Person With Parkinsons PWP) 12 years and some months ago and a member of this forum (in its earlier iterations and this one) for almost exactly 12, I’m trying to what I could contribute to the planning process. I might have suggested you consider our most pressing concerns (not that you haven't, I'm leading up to a list of them). Everyone sees this differently, but here’s my list of what I think most people with Parkinson’s need to help with:

(1) for a lot of us at, say, 2-15 years since diagnosis, is the psychosocial costs of the Parkinson syndrome (a.k.a. Parkinson's Disease or PD), as we are left despairing by spouses who desert at the first sign or hang on for a few years until they can no longer tolerate our "attitude" of apathy, depression and anxiety, our staring, our stiff and unreadable faces, our soul-deadening apathy which is seen as "neglect" of our parents and children, while we complain that our cognition is really “clognition” and that our physical discomfort makes all that exercising a life and death matter, and not just a stroll in the park. Friends who want to "remember us as we were" and siblings who feel they can't count on us drift away, and we don't know how to handle the isolation.

(2) how to deal with years and years of drug ingestion, kept off balance for decades by a medical/pharmaceutical preoccupation with Sinemet, as wonderful as it is. We are also deficient in serotonin and norepinephrine, and seldom treated with either, unless we’ve been guided somehow to seek treatment for clinical depression and have been prescribed pills that increase our supply of those two neurotransmitters and by the side effects of further dystonia, ever more uncontrollable dyskinesia (for which I would perhaps ask for news of any work elsewhere than the dopamine pathways, such the glutamates and the adenisone antagonists that are know to exist but are unavailable to us in the U.S. right now). Add to that a more or less constant feeling of illness, which can be exacerbated by the drugs we depend on despite our often normal appearance. The inefficiency of the drug “pipeline,” along with the greed of corporate shareholders and managers who wouldn’t sell a car without headlights or a tailpipe but produce drugs without sufficient testing or even carelessly conducted clinical trials also feeds our despair.

(3) might be our inexplicable fatigue, which interferes with all our relationships and costs many of us the early and permanent loss of our jobs and careers. I had to retire at the end of 2001, age 56.

(4) is the difficulty of forming a trusting relationship with a neurologist, if one qualified to treat us can even be found within range of our homes, even more difficult to do when we can't drive any more due to executive function loss.

(5) is the need of thousands of patients to see a competent neuropsychiatrist who can help them and train them to meet many of the above challenges with some peace of mind to strengthen them, knowing they are not to blame for their common anguish. Almost the entire patient population is underserved in this area.

(6) is the so-called motor symptoms--intractable tremors or unrelieved bradykinesia, for which we are pushed towards DBS surgery before we even starting falling (our most common mishap) because of our postural instability, impaired vision (yes, vision), our difficulty sorting out words from a stream of sound, our inability to grasp a problem until we have time to let our bradyphrenia have it for a while. Neurologists always thought these were our most bothersome symptoms until a survey roughly ten years ago showed that other things bother us a whole lot more.

I could go on and on about cognitive and psychiatric symptoms, but I hope you maybe see a little more of the patient viewpoint. I would love it if others here would add to or correct my list,or post their own list. but I’m tired now, and I want to explain why I can’t come to your meeting, even though it’s “free.”

It does look like a good symposium for newly diagnosed PWPs. I have heard Dr Dawson speak several times; he is alwuays understandable, interesting, and ready to answer questions with respect for the questioners. We are looking to him for more answers in neurotrophic substances; besides being a nice man, he is a brilliant researcher. I haven’t met Dr Olanow but have seen his name on a great many research papers.

I can't come, first of all, because I have been to so many wonderful symposia given by U Maryland, Johns Hopkins, the Parkinson Foundation of the National Capitol Area, the Parkinson's Action Network, the Western Pennsylvania Parkinson's Foundation, and the Neurology Department at Oregon Health and Sciences University, as well as being fortunate enough to receive the teachings of the doctors who saw me as a subject in many research studies and clinical trials--I have been to so many of these, received so many newsletters, read (when able) so many books, and participated in this forum for so long, that I have to do other things now with my precious and ever-decreasing "on" time.

Another reason I can't come is that it would cost me about $2000 for plane fare, taxis, budget hotels and meals. I would have to stay two nights because i couldn't possibly travel on the same day as an exhausting meeting like that--it's unlikely that you would have half-hour or longer breaks, which I need due to slowness, and I hate to say this in the face of your kindness, but two free meals will have to be low in protein and low in choking potential to meet my needs. I would always feel pressured for time and in a hurry, and the resulting anxiety level would worsen my symptoms and make it all the harder to focus on the talks. Most PWPs would have these difficulties to one degree or another, and let’s not forget that I am among the very luckiest, with good health insurance, a good and faithful husband, and lots of online friends to turn to in perplexity.

So I wish the foundation people all the best for their symposium.

To all the foundations and “orgs” who can’t look at us without thinking of finding a way to help, thanks for all you’re trying to do.

We need it.

And that’s the best lesson of all.

Jaye

(c) Parkinson Creative Collective