Hello everyone!  My name is Dianne Salva and I joined the list about a month
ago.  I want to thank all the contributors and of course Barbara, for making
the list such a great resource for all of us who are concerned about
Parkinson's.  My father, who is 66 years old and a widower, has had
Parkinson's for about 20 years.  He still lives a pretty independent life,
despite having rigidity and falls.  He just recently moved to an apartment
after selling the house he lived in for almost 35 years (and where I grew
up).  He lives in the Chicago suburbs.  About two years ago I was transferred
to Washington, DC.  He comes to visit about 3-4 times a year, and my husband
or I go back to Chicago about the same.  We're trying to convince him to move
here, not only because of the parkinson's, but because he lived a pretty
traditional life for almost 40 years (i.e. he went to the office and my
mother pretty much took care of everything at home).  He's really never been
into keeping house, laundry or cooking.  I just think it would be so much
easier (and healthier) for him on a day to day basis.  But he is *fiercely*
independent, and would miss Chicago, so I tread lightly.
 
I've been wanting to mention that my father has had some real improvements
over the past few years.  Over the first 15 years or so after he was first
diagnosed he followed a traditional (ultimately high-dosage) drug treatment
regiment with various doctors. But about five or six years ago a doctor from
Milwaukee (Dr. Nausieda-sp?) was recommended to him and he's been really
happy with him.  My father underwent an in-patient drug holiday and afterward
took reduced dosages.  He mixes his synamet with a vitamin A tablet and
water.  He keeps the mixture in a sip-n-stor (a tupperware-like 500 ml
container with a locking straw at the top), which makes it easy to carry
around.  He also takes parlodel, but I'm not sure of the dosage.  I think the
remarkable thing is that he has not really experienced much of a progression
of his symptoms over this past 5 years.  In reality, his tremors are almost
no longer a problem and although he still has on-off times and falls, he says
he feels better (and he definitely walks better) during his on times.  Of
course, all this may be just the peculiar course of the disease in his case,
but I think the lower dosages might be a key.
 
What really prompted me to write today were the series of messages from
Julie, Wendy and Rom, about toxins (and chelation therapy).  I'm not
completely convinced but I think the role of environmental or other toxins
should definitely be the subject of more study.
 
But I want to let everyone know about a recent family experience with
"chelation" therapy.  My brother-in-law suffered a stroke and permanent brain
damage about 7 years ago.  He was only in his thirties and it was
unbelievably tragic.  After years of hospitalizations and physical therapy,
he is able to walk (slowly) and has (somewhat) improved speech.  About 2
years ago he saw a show on TV that featured a woman who preached about
healing.  My sister-in-law called and the woman recommended he receive
chelation therapy from a "clinic" in Indiana.  They called the clinic and
were told he should have chelation and fetal cell injections (not implant)
over a period of about 3 months, at an estimated cost of about $15,000.  Then
he was to have "oxygen" therapy in Ohio for about two weeks.  The whole
family tried to talk them out of it, but I guess you have to recognize how
desperate people can be victimized.  They sold their house, paid the $15,000
and went to the clinic.  Almost 10 months later and $30,000 deeper in hole,
he left the "clinic" in no better shape.  My sister-in-law is still trying to
get some of the money back.  I know nothing about these treatments and I only
say this so you can know one example of how charletans will prey on people,
especially where questionable health treatments are involved.
 
Well, I'm sorry this was so long!  Next time I'll write less....
 
Dianne Salva ([log in to unmask])