To Everyone,

I'm deeply impressed with the work that Linda and Perry have done.  They
are  to be congratulated.  They've worked hard and disseminated interesting
and pertinent information.

What sticks with me is neuroscientists will eventually have a new center in
which collaboration will occur on a grand scale to find cures for a number
of diseases in hopes that what can be found for one might be used for
others.  I would hope that under these conditions. these scientists will
work in an atmosphere of comraderie and professionalism.  Possibly square
one can now become square ten of shared knowledge.  Possibly square ten
will lead to some result other than,  "Of course it will be many years
before anything can be done for those stricken with these illnesses."
Consider, too, that when these wonderful cures occur, there are those on
the outside of PD, the PD+ers, who will still be left at the bus without
tickets.

Then I think of Peter's comments re time running short for many, depression
and/or quality of life. The latter two subjects have been on my mind since
I was semi-diagnosed.  No one in my realm of medical care has even brought
up the subject of quality of life in the five-and-a-half years I've been
walking the PD+ trail. Interestingly, it has recently become a topic for
Dr. Lieberman.  Why has it taken so long?  Did MJ Fox push some buttons?

Thoughts kept invading my mind, so I finally gave them life. In a
discussion with a couple of list friends, I shared them.  For what it's
worth, here's the
picture I "feel".

I've come to the conclusion that there is excellent care out there.  One
just has to be in the right place at the right time.  After I heard about
MDS specialists, I called all over the country  to see if one was located
nearby.
Even reps from some of the most prestigious neuero boards in the country
didn't know what I was talking about!

On the net I read about the stages of PD, and I question them because this
insidious disease affects  each of us differently.  With the same symptoms,
what might place me in a beginning stage category might place someone else
in a more serious, more advanced stage. It's all in how the illness invades
us.

I'm of the opinion that for so many years so many of our neuros have just
been dispensing med after med after med, etc., not because they didn't care
but because the really didn't/don't know what to do.  In other words, maybe
they didn't/don't stop to discover why a med didn't/doesn't work, they just
add another(just look at the numbers of meds some of our friends have to
take each day).  If we die, they say it isn't PD, etc., that kills us.
Wonder just what they think it is?  I mean, after all, the PD leads to the
meds; the meds lead to the side effects. The side effects corrupt the
immune system; complications arise,  AND PD didn't do it!  I cannot help
but laugh.

Now each one of us is affected differently re quality of life and
depression, so I'll speak for myself, and if anything fits for you, you can
share it.  Three years into this illness/disease, I began to realize I had
experienced some and was still encountering stages much like one
experiences after the loss of a loved one.

Stage 1 is denial.  "There's nothing wrong with me."  I've worked very hard
and just need rest.

Stage 2 is one of being incredulous.  "This can't be happening to me"!

Stage 3 is anger.  "It's not fair!"

Stage 4 is proof of ability. This is where I puff up my id trying to prove
to doctors, family,, colleagues, and friends that I can spell and/or do the
same things correctly that I've done impeccably for so many years.

Stage 5 is frustration.  #4 was sure a bust, so it's, "I've lived and done
everything I could have done-vegetarian, exercise, proper food, etc., and
it still happened".

Stage 6 is getting even.  "I might as well enjoy eating everything I've
done without for 30 years because good care didn't do a ______ thing to
protect me."

Stage 7 is facing repercussions and an accumulation of depression that
unknowingly took hold without being accepted or dealt with before.  "It's
time to deal with your innermost thoughts and feelings."


Stage 8 is facing reality.  "It's the living day by day you have to learn,
and you must learn it with grace for that is who you are."

These stages or those we might call our own creep into our being.  No
matter what form of religion we are or what our philosophies might be, we
need more to fight the depression war.  We need to stretch to get outselves
and each other through each day.  We need to discover ways to help each
another in other ways before the rendeering of another pill(if possible).
We need to shore-up our caregivers as well as ourselves  Maybe it's a
chuckle from SPARKLE.  Maybe it's a word of kindness and caring to someone
who needs it.  Whatever it is, we need to do it together!  We cannot
succumb to this war!
E of the headdress
>

Linda Herman wrote:
>
>>At a special event held at the National Institutes of Health on January
>>4, more than 150 principal  investigators from nine institutes-the first
>>gathering of its type -heard NINDS Director Gerald D.  Fischbach, M.D.,
>>and Steven Hyman, M.D., director of NIMH, describe their vision of a new
>>intellectual  framework for joint efforts in neuroscience research. of
>>Porter."......snip, snip>
>
Perry wrote:>Years of advocacy are paying off in much needed new research.
Dr. Hyman said we
 Senior Researchers who have worked in related fields (e.g.
>Alzheimers, Depression/Heart Disease) are ready to apply their skills and
>knowledge to PD.
>
>Yet for all of us with PD the clock keeps ticking and the medications
don't work
>as well. This research is years away from benefiting those of us living
with PD....snip, snip
>