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Gil, I must say that I am not surprised at the comments from your friend the
PT prof.  My own sister teaches PT at Mayo Clinic......and states that I
should not be able to walk the way I walk..........sort of like the bee should
not be able to fly theory.  What PT's often forget when treating PD patients
is that our problem is neurological and not physiological and some of their
rules are not cast in stone for PD patients.

My sister clearly stated that a brace suggested for me would never work for my
problems (and yet I am much more comfortable wearing the brace than standing
or walking without it for long periods of time).......theoretically it should
not work......but my knee pain improves dramatically with this brace.

In Tom's rebuttal to Dennis, he states that what he is trying to prove is that
the circuitry in the brain still exists to perform the tasks.....it simply
needs to be accessed through a less traditional route.

What Tom proposes is not invasive (as in medication); if it doesn't work, no
harm done.  If it does work.......voila!!!!!!

I met Tom several years ago while visiting Alan Bonander......the challenges
presented to Tom by PD would be overwhelming to most individuals.  But Tom,
continues to try to find ways to be functional with his family and within his
home and community.  His theories to aid himself with walking are the attempts
of a man to continue to function in spite of the medical community saying that
it can't be done..........and his success is only to be seen to be believed.

I truly regret the negative comments made to Tom.....who could possibly offer
the ray of hope of nothing more than trial and error.....to a few PD patients.
Tom lives and struggles with this problem 24 hours a day......not in theory,
but in reality.  He has given up a career, because of his PD.  He has
struggled for acceptance within the medical community......most neuro's only
shake their head and say....I don't see how you do it.......and yet........all
he does is TRY!   Something most of us don't have the guts to do......and
after a few negative comments from others would not be willing to share our
thoughts, even if we did have the guts to try and succeed.

I am upset about these negative comments because I have experienced some of
Tom's successes along the way........I have also had the medical community
sneer and say.....no way.  I have had people in support groups locally
question how it could be.  I chose the easy way out........shut up......do
what I can.....and don't try to encourage others.......it really isn't worth
the negative feedback from the "all knowing community" of those who can do it
simply and easily the way we were intended to perform.

Tom, on the otherhand, is still trying to offer suggestions and encouragement
that will benefit some small portion of our population.............in spite of
what the experts have to say..........

No snake oil, no St. John's wort or brewed tea or whatever seed extract.....no
money invested..........simply try to reposition one's hands.....try to
reposition one's head.......try to change the stride
length...................and see if it works for today.

It is acceptable to freeze and drop one's cane and step over it (the neuro's
will tell you this one).......but it is not acceptable to reposition one's
arms.....because the PT says that ain't the way theory says it works.

Tom doesn't need me to defend him or his work.  I just become angry and upset
when people refuse to listen to what is being said.  We are part of a
community that wants progress that is not being made rapidly enough by the
medical community.  We are willing to try to ingest any chemical, proven or
unproven, but not willing to help ourselves cross the street without relying
on current medical theory.........flawed or unflawed.

I just don't understand what it is that we are looking for any longer.

Rita Weeks






Rita Weeks


Unfortunately, or fortunately, seeing is believing.........and one of the
things we have learned with PD is that there is no right way or wrong way to
do something.....just that there is a way to do something.

My son, husband and I watched Tom Reiss struggle and fall twice in a six foot
space as he walked from the back steps to a pair of stilts in the back
yard.....our son held the stilts as Tom struggled to his feet on a step and
then stepped out on the stilts and walked comfortably and confidently around
the back yard.......I would never have had the guts to step on the stilts as
unbalanced as Tom was that day (actually, I would never have had the guts to
step on the stilts period!!!!!)