Listfamily---
I've been writing offlist to Sandor Halasz, former member who left the list
a couple of weeks ago, in a disappointed frame of mind.
Partly this was because he got few if any responses to his posts (I found
them in the archive, as well as his intro.)
Partly it was because he was desperate for helpful info, as the resources
in his homeland, Hungary, are very limited. He was, BTW, the only
Hungarian on the list according to the "Way we were" Janet just sent us.
Partly I think he was discouraged because he believed that even if a "cure"
were found, he, and others like him in countries where the resources don't
exist, would not benefit from it.
At present, he needs Mirapex, and can't get it locally, nor afford to buy
it overseas. He is 44, and has been told he "may" have either MSA or
Striatonigral degeneration, (both PD+ syndromes) OR regular PD, and after
years of tests and docs he still isn't sure what he has, adding that
Hungarian docs
"usually do not try to find an exact diagnosis because they say the
treatment is the same"....
He explained to me that there are no support groups, no centers of
excellence, no government $$$ to bring in meds from abroad, limited
diagnostic tools such as CAT,PET,MRI, etc.etc. I am sure that all this
could be said of many of the countries where listmembers live and are
struggling to manage their PD as well as they can. We seldom hear from
them on the list, and they are represented by the numbers after the names
of their countries. Take a close look at the list Janet posted---there
are 17 countries where there is one 1 person listed, and 4 with only 2
persons....more than 1/2 the countries represented!
I guess I'm writing this because I'm sad and angry that these
inequities---like so many others in the world---exist, and limit the
chances for others that we in America and other very lucky places take for
granted. We complain when our neuros don't take enough time, or return
calls, when meds are costly or we have to drive too far to get the help we
need. Let's not forget how fortunate we are, and let's try to be there
for our "brothers and sisters" on the list who may have little else in the
way of support.
End of sermon---just call it a bit of Consciousness-raising?
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
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"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
