Originally Posted by jeanb
You DO matter to all of us. Unfortunately not all PWP know you, nor have they heard you advocate on PD matters as many of us who visit this board have.
But I can attest that all PWP are lucky that your voice is heard by the leadership of MJFF and by other leaders in the PD community.
Jean - I really appreciate your kind words - they mean a lot. But I am not looking for validation that my voice has been heard - I know it has. I'm just afraid that my voice hasn't been heard completely.
We do a lot of brainstorming at these meetings; it is clear that the organizations want our input, are serious about their commitment to improving the research and making it relevant; that low participation in clinical trials is a major impediment to progress.
But I wonder if we are looking in all of the right places for the answers or even asking the right questions. The question usually is around motivation - how do we get PD patients off the sofa and into the (fill in the blank) clinical trial; gym; outdoors; life of activity; exercise program; etc, etc, etc.
What if the answer is, they ARE motivated, but there are too many barriers to participation? Distance, money, time, lack of a support network.
How many times do PD patients who do take part in all kinds of activities say, "I couldn't have done it without (fill in the blank) spouse, child, friend, community, etc, etc, etc.
What if you are without that support? I choose to do it on my own; I'm divorced, try hard to leave my challenges off the shoulders of my young daughter, a recent college graduate with challenges of her own; my family - father, sister and her family - live a thousand miles away and are engaged in something far worse than my Parkinson's, and that is dealing with my mother with Alzheimer's who is institutionalized, a situation that is sapping the life that is left in my father, and already sapped his finances.
And I am one of the lucky ones because even though they are not there to support me physically, I know they love me, and support me emotionally, encourage my participation in all things PD, and help me financially when possible.
But how many of us are trapped in relationships and family situations that are not supportive? We've heard countless stories right here; I've heard countless more at support groups. PD patients struggling to keep their lives together who have lost jobs and live with the fear of losing spouses and children?
These are not people who have the strength, time, or commitment to give to a clinical trial.
Then there are the less wrenching, but more common place barriers to participation like money and transportation. It doesn't matter if the net is cast widely to reach those who are willing to participate in a clinical trial if they don't live within the shadow of the institution that is doing the research. I know that some of you travel far to participate, and that your travel is reimbursed, but it's just not that simple, especially if you don't have the support at home to help make it possible.
I don't think these are problems that it is up to the orgs to fix, (in many ways our social infrastructure is broken, and neither the Democrats or the Republicans know how to fix it), but they must figure into the thinking of those who are trying to increase participation.
What I find most disturbing is that there doesn't even seem to be a desire to understand the nature of the challenges. I and others (most notably AJ Wasson) have repeatedly brought the idea to various orgs, national and regional, to do some sort of socio-economic survey to learn more about how PD patients live, but to no avail. (I did see that the Los Angeles Chapter of APDA is doing one - bravo!).
And I know that there is a lot of general discomfort whenever we bring up this kind of stuff at meetings - often because we can't talk about such things that are so personal and close to our hearts without crying (I'm sorry!).
And, really, what are they supposed to do with the information? Repair relationships? Fix families? Restore lost jobs and wages?
The answer is to cure and treat the disease. The conundrum is that they can't do that without our help - and the disease has undermined our ability to do so.