>Friends,
>
>I don't think it's about more research.
>I believe they already have drugs that will cure us.
>In the form of neurotrophic factors that will protect against further
damage.
>I also saw a recent posting on the list about a treatment in Switzerland
that
>would eliminate the protein that is responsible for keeping the CNS from
>regenerating. In other words, they already have the cure. What we need now
is
>for quicker acceptance by our old pals at the FDA. I'm not saying the Udall
>funding is not important. I don't know a damned thing about the funding and
>research process. Perhaps we need more money for the trials of these drugs.
>But what I think we really need now is a national action for attention to
the
>misery and agony and frustration that PWP go through everyday of their
lives;
>how many of us there are; and how badly we need these new treatments.
>
>If you disagree, please let me know.
>
>Jacob
Dear Jacob,
I do disagree, and in several "directions". I also agree with some of the
things you say.
1.) By stating that "they already have drugs that will cure us", you seem
to be implying that doctors and reasearchers are purposely hiding good news.
I believe that nothing could be further from the truth. Based on my
experience in major research centers during my surgical training, I can
assure you that there is nothing a researcher wants more than to "find the
big one". If you want to look for negative motivations, then the fame and
money that comes to a successful researcher is there (Jonas Salk, Lister and
a hundred more come to mind). While there are a few people who work
only/mostly for that fame, I give you my solemn word that 99.99999% of
physicians WANT their patients to get better. We too, have friends, family,
and spouses who get sick... and even get sick ourselves. Hiding a cure
makes no sense at all. That means that the cure is still to be found and we
_need_ research to find it!
2.) Even if your assumption that there is a cure were correct, I don't
believe that there is no further research to do. This list has proven over
and over that PD affects people in wildly different fashions, and that a med
which works for one person is a disaster for another. It seems clear to me,
that there will still be a need for research to help find how to best use
whatever cures are found. There will likely be people who don't respond to
those treatments. There will likely be people who have bad side effects
from the treatment. So there will be questions to answer like:
*Who will respond well (get a cure) with this treatment?
*What can we do to make it work better/faster?
*How can we make the treatment available to more people faster? (this
is critical if the treatment is something more than just a pill)
*What are the bad things that can result from this treatment, and will
there be times when those side effects will make the treatment not safe?
*What do we do for those folks who can't take the treatment, or don't
respond?
3.) Even if (or _when_) there is a cure for PD, there will still be
hundreds and thousands of people who will develop the disease. Some of the
research in progress now is to find the cause. Wouldn't it be great if
no-one had to go through the years of denial and gradual loss of function as
the disease begins? Wouldn't it be even better if finding the cause (and
thus the _prevention_) helped not only all the PWP, but those with
Alzheimer's and other diseases???
4.) I DO agree with you that we desperately need to be seen. The ONLY way
that people will realize that PD is a disease worth spending time and money
fighting is to show them how "stinkin' lousy" it is. To echo so many others
on this list, we need to shed our cloaks of invisibility. I believe this
particularly means that we as both patients and families/friends/carers need
to stop avoiding being in public when we are off or dyskenetic, especially
when we avoid it all or mostly to avoid the embarrassment and questions that
come. These times are our very best times to educate people and gain that
support that we need!
An example is with my husband: Kees and I were married in February, and
since he came here in December, many people at church have learned about PD
thru watching him with his dyskinesia or stiffness. When we tried to get
signatures for the funding of the Udall bill, we have found it _easy_ to get
65 signatures in about 1 hour of total time after 2 church services.
Instead of needing to explain to each person what PD is and why research was
needed, all we had to do was say, "Congress passed a law last year to say
you CAN spend the money, but not that you MUST spend it. We are sending a
petition to have them say that you MUST spend it." Each time, before I
finished saying this, the person was reaching for the paper to sign. They
now know enough about PD to want a cure.
Just think how far we can reach as a community if we all try to do this as
much as possible in our various public situations!
So, Jacob, whether it is to get funding for research, or to speed meds on
their way to us, I agree with the need for attention. Let's go after that
attention now! .. :)
With Warm Texas Wishes,
Faye Armstrong-Paap, M.D.
CG for Kees 48/9
