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0 – Start Here

After ten years of study, it has become clear to me that the view of Parkinson’s Disease held by much of the medical and research communities is seriously askew and is in need of drastic revision.  I am by no means alone in reaching this conclusion. No less a scientist than Dr. J. William Langston, MD, writing in the newsletter of the Parkinson’s Disease Foundation in the Fall 2006 edition and in an article entitled “PD: More Than a Movement Disorder” made much the same point.

Dr. Langston, who developed the standard MPTP model used in virtually all research, said, “Put bluntly, it is increasingly clear that “parkinsonism” – the motor aspects of Parkinson’s – is only one characteristic of what is increasingly becoming seen as a multifaceted and complex disorder. No person who lives with Parkinson’s (PWP) needs to be told this. It is their reports as much as anything else that have been prodding Parkinson’s specialists and researchers to look beyond their natural “turf” – the dopamine-producing nigrostriatal system – to examine other areas of the brain and body.”

Little has changed since those words were written. Funding still comes from corporations intent on maximizing profits. Research is still directed by academics interested in preserving the status quo which underpins their own careers. Clinicians are still limited to a handful of chemicals which offer short term symptom relief and long term failure. And patients see their lives dribble away with no sense of urgency evident on the part of the other participants in this absurd tragedy.

Although little change has crept into the boardroom, the ivory tower, or the clinic, huge changes have accumulated in what we know. In the twenty years since I first noticed a tremor in my right hand, it has been learned that the brain is far from the rigid and unchanging organ it was thought to be and that healing is possible. It has been learned that, far from being confined to the central nervous system, PD affects multiple targets some of which are far from the territory of neurology. It has been learned that symptoms may appear decades earlier than once thought.

So much has been learned, and, yet, treatment has changed little in over forty years. I make no apology when I say that this is inexcusable. A sense of urgency must be cultivated in order to meet this crisis. And it is a crisis. The Boomers are entering the age when they will meet this foe and the expense of treating them rather than curing them will be overwhelming. The forces of economics will prevail where those of humanitarianism failed.  This blogsite is my humble contribution.

A “Simple” Explanation

9 Comments leave one →
  1. Richard permalink
    May 24, 2011 5:59 pm

    Just arrived here. Think your opening “Start here” is a pretty good summary of the “way things are”!

  2. August 20, 2011 1:07 pm

    chadwick-
    First, the image of Science and its slow but sure progression has been debated elsewhere at some length. A more accurate view is that of a wave climbing a beach, higher and higher, until it collapses. Over and over, with each wave making it a little farther before collapse. The real question is the depth of the sand and is there bedrock below? 🙂

    What do I want? More funding with a substantial proportion allocated to “fringe” science would be a start. An exhaustive search of the literature for promising leads ignored would be another.

    For the first, consider the model offered in economics by the Grameen Bank. See http://en.wikipedia.org/wiki/Grameen_Bank

    In effect a “distributed” approach.

    For the second, part of the problem is sheer volume of accumulated information. More rolls in every day and it includes a half-dozen different disciplines. No single researcher can keep up with it and the backlog is huge. Multi-disciplinary teams, perhaps?

    Well, the morning medication has reached critical mass now and life begins anew. I must away. 🙂

  3. August 16, 2011 6:35 pm

    I has hoped for something with a little more meat to it. Try again?

  4. August 17, 2011 8:48 pm

    (in addition to my post from a week or so ago)

    I have never run across a neuroscientist who thinks PD is simply a motor disorder. What we do realize is that motor symptoms are a (maybe even the) primary phenotype of the onset and early stages of most forms of PD. It is for this reason that much of the funding is going towards actually learning how the basal ganglia function since that appears to be where the major circuit disruptions occur. This hasn’t kept researchers from actively pursuing other regions of interest as long as they can properly justify their search with data (we have several of those “fishing expeditions” going on in my lab at any given time).

    My lab gets funding from many sources and we in no way try to preserve the status quo because that is simply not how science is done. We go where the data takes us because that is only way we will understand what is actually occurring in the disease state and the only way science will advance. There are new drugs and therapies being tested by researchers and clinicians all the time looking for anything that may help anyone with PD, and by extension anyone else suffering from a similar neurological disease. Hell, I and the other graduate students in my lab all plan on spending the rest of our lives trying to further understand PD and related disorders in order to make better treatments available. My lab alone has two drugs, two possible avenues of gene therapy, and data that could be used for possible DBS or lesions to alleviate PD symptoms in various stages of development that I know of (research moves fast).

    If that isn’t “urgency” then I must not understand what that word means.

  5. August 18, 2011 12:31 pm

    chadwick-
    First let me thank you for even taking the time to comment. Part of the problem is a simple lack of communication between the various parts of the community.

    But there are deeper problems, even outright conflicts of interest, in the present system that allocate resources in a conservative manner (“preserve the status quo”) when a more radical (“storm the Bastille”) approach is called for.

    You, as a bright “young” (no disrespect intended at all) researcher represent one wing of the community. I, as a young onset (1st symptoms age 39, now age 58) represent another. Still others represent the business end and further divisions exist along with the conflicts that come with them.

    Rather than get into an analysis of the various factions here, I will restrict myself to the one I know best – the patient. My position can be summarized pretty simply – I am dying and the best that the present system offers me is tech from the Kennedy era that comes loaded with side effects and just buys a little time. Just enough to allow me to witness the destruction of my life and those I love.

    As little as a decade ago, I would have slipped away into the abyss alone and ignorant. The Net changed all that and I correspond with activists on several continents. And, as you noted earlier, it isn’t just PD. Patients who battle chronic diseases of all sorts are stirring.

    Unfortunately, patients are messy. Rats and mice are neat and clean. Patients leave stains on the carpets. But, like the HIV activists, we are not going away. The solution is communication and, in my clumsy way, I hope to advance that a little.

  6. August 20, 2011 12:30 am

    I’m just not sure you understand what you mean by conservative or radical approaches to resource allotment. There is a very good reason science as a whole is remarkably conservative: we have to be in order for progress to be made. If that is preserving the status quo then the status quo of science is amazing in the fact that it consistently progresses. Otherwise we get shoddy, piecemeal results that are next to impossible to interpret and end up being next to useless.

    No disrespect taken about being called young (and none is intended with anything I say here either), and while I sympathize with your position I must ask: what do you want? The medical community has tried many different treatments for PD and most of them just don’t work out too well due to the very nature of the human body (anticholinergics, for instance). And we’re constantly working on more, better treatments, but it turns out that making those treatments is remarkably difficult. Yet day after day we keep at it because it’s the right thing to do and we just happen to love doing it.

    I understand that communication is a problem, but communication alone won’t advance the understanding and treatments. What it comes down to is this: we’re trying as hard as we can to treat and prevent PD and the only way to accelerate the research is more manpower and more money devoted to the research. Changing the distribution of the current funding to a more radical approach simply will not work in the current research environment. If there were an independently funded Janelia Farm-type place devoted specifically to PD then it may work, but I still doubt we would get treatments faster.

    No one wants you to go away. We want you to keep fighting and making your voice heard. I just ask that you not blame us for failing to see the larger picture since that is simply not true. We see it and we care, which is part of the reason we keep slaving away to find a cure.

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