Dear list friends,

I attended the PAN Forum last June and was heartened by what I heard there.
I, too, expect a cure, and for those of you who have not seen this post
before, I will include it here.  Dr. Bill Langston, author of The Case of the
Frozen Addicts, head of the Parkinson's Institute in Sunnyvale, CA, and a
truly wonderful man spoke to me and countless others personally and indicated
that they are truly so close.  He had hoped it would be by the end of this
decade.  The scientists are doing all they can.  We must do our part which is
to keep the pressure up on our legislators and on NIH.  Here goes.

The Routes to a Cure. . .

 The symptoms of Parkinson's disease, or Parkinsonism (PD), result from the
degeneration of nerve  cells in the mid-brain, and the corresponding loss of
the neurotransmitting chemical dopamine produced by those cells. Conventional
treatments revolve around pharmaceutical substitutes for dopamine (such as L-
dopa) and drugs that temporarily enhance the cell's dopamine production. Such
measures lose their effectiveness as more cells are lost; so a true
Parkinson's cure requires finding ways of stopping cell degeneration, and
replacing damaged cells with healthy, viable ones. . . or nurturing those
cells back to life. Among the more promising areas of research:

Genetic and Environmental Research

Researchers have identified and mapped one gene, for the protein alpha
synuclein, which is linked to a small number of Parkinson's cases: where the
gene is flawed, Parkinson's occurs. While only a few families are affected,
the discovery suggests a genetic link to at least some Parkinson 's cases.
Scientists expect to discover other genes linked in a similar way to the
disorder. This information may begin to identify people at risk. As important,
scientists predict that this information will help uncover the complicated
matrix of elements -- partially genetic susceptibility, particularly outside
"triggers" such as environmental toxins -- that result in dopamine cell death
and Parkinson 's symptoms.

Neural Cell Transplants

Researchers have implanted neural tissue into the degenerated area of the
brain and proven that the new cells can thrive and renew production of
dopamine. Dramatic results have been achieved in clinical studies, and the
requirements for a prototype therapy are being developed through continuing
animal and human clinical tests. Meanwhile, development of unlimited cell
sources is well underway. Progenitor cells, which divide in culture --
producing a continuous source of cells -- and then are "coaxed" to naturally
develop into the desired neurons, are close to development. Also, mid-study
analysis of a clinical trial using porcine (pig) neural cells and cow neural
cells indicates those cells are replicating the benefits of human cells, in
relieving the rigidity and uncontrolled movement associated with Parkinson's.

Neurotrophic Proteins

Researchers are identifying a growing number of proteins that function to
nurture nerve cells, and even appear to restore life to "dead" cells. Although
"nerve growth factor" and similar proteins are relevant to many neurological
diseases, at least one protein has been directly linked to the survivability
of dopamine cells. Clinical trials are currently under way to determine the
safety and effectiveness of glial cell line-derived neurotrophic factor (GDNF)
in humans, and "viral vector" technology is being employed to develop
effective, non-invasive means to deliver them into the brain.

Neuro-protective Agents

On a different analytical plane, the damage done to nerve cells that result in
Parkinson's and some other neurological diseases is viewed as the work of
"free radicals" --molecular, metabolic by-products that can destroy healthy
cells. Researchers are closing in on naturally occurring enzymes that appear
to deactivate free radicals in a healthy brain, and are testing antioxidant
drugs that could mop up molecules before they do damage.

Genetic Engineering

Scientists are modifying the genetic code of individual cells to obtain ways
of supporting and extending these therapeutic technologies: for example,
altering a skin cell to become a dopamine-producing cell, one that could be
implanted in the brain without rejection. Genetically engineered viruses --
which can pass through the blood-brain barrier and infuse ailing dopamine
cells with new genes to restore their health -- are being tested by
 scientists. The researchers have eliminated most of the common toxic and
inflammatory side effects of the virus, but recently also succeeded in animal
trials in preventing the virus from provoking an immune response.

Buying time while a cure arrives

 Researchers are reporting promising results among patients using a new device
designed to deliver an electrical signal deep inside the brain, much as a
pacemaker does to the heart muscle. The "deep brain stimulator" has received
preliminary FDA approval for continued trials. This may offer the benefits
ofpallidotomy -- a surgical lesion that alleviates symptoms by short-
circuiting the abnormal neuronal activity that results when the motor system
is starved for dopamine -- with greater  flexibility, and without permanent
damage to the neuronal pathway. Meanwhile, pharmaceutical companies have
developed more effective "agonists" and "inhibitors" -- drugs that increase
the effectiveness of conventional L-dopa therapies, buying time for patients
while a more enduring cure is researched.

Michael J. Fox has every reason to hope.  If there were none, why would we be
praying that a famous person would come out and talk about it?  We all know
that it is a "designer" disease (very individual for each person).  My
husband's design was not a good one, I can tell you.  He is young and it is a
rapidly progressing "design." But I recently spoke to my Uncle Addison
recently who was diagnosed about 4 years ago (and none of us even knew and
still can't see it), and he had this strong voice and it appears not to be all
that big a problem for him. In looking back, I think he's had it for years and
years, but we didn't know.  He practiced law until he was 80, whereas Art, who
was diagnosed 2 years ago is on medical leave and will probably be placed on
disability.  He, too, has probably had it for years, but we didn't know.

I, myself, recently went through a tremendously stressful situation
professionally, as if I didn't already have enough here at home.  I blamed, I
was angry, and, frankly, I fell apart. When I was forced to seek professional
help as my situation was so intolerable, I later became grateful for the
trauma I had undergone.  If it had not been for the trauma, I would not have
demonstrated the symptoms I had endured at various times throughout my life
(since age 16) and they would still be with me.  While they can't be cured,
they can be probably be managed, sometimes more effectively than others.
Perhaps, MJF, who we know is suffering (surely we know this), has developed
such an attitude.  If for now there is no cure (and it is only for now), then
he is going to live as positively as he can, and what more can any of us do?

I look at your letters and see you doing this every day.  How can we be
disappointed that our favorite boy next door actor is doing the same!  That he
chooses to focus on what he does have left and to live in the now is a gift.
I wish it were contageous!  I could use it from time to time.  That he is
still able to work (and I firmly believe that he works hard just to work, just
as so many of you are doing whether in out in the world of competitive
employment or in the home, just trying to get clothed), is commendable.
Let's look at his situation.  He is the one of us to "gets to have and deal
with" PD before the eyes of millions!  I can't imagine my husband, as much as
I admire him, as strong and wonderful as I think he is, doing this.  I can't
imagine being interviewed by Barbara Walters.

Now when we think of the rosy picture he painted, we've got to remember that
this man is an actor.  This is what he does.  This is why we love  and know
him.  He has gotten the message out.  People all over the world realize that
young people, too, can get it, and that it can be serious enough to drive them
to have brain surgery.  The subthalamic deep brain stimulation surgery has
been mentioned to my Art, but we're not ready for it.  Physically, he might
be, but not emotionally.  This young man was desperate enough to have it.  And
for those of you who have, too, my hat is off to you.  You have true grit!  We
all have that, no matter what!  That's one thing this damnable disease gives
us.  It makes us problem solvers, makes us reach out!  What choice do we have?
And what other choice did MJF have than to do what he did on 20-20, Dateline,
in the operating room, at the Golden Globe Awards, etc.?  Just like the rest
of us, he's just doing the best he can.

Sincerely,
Barb Brock