 |
 |
Camilla...... Thanks SO much for posting Sandor's message. It was a real eye-opener for me, and placed many Parkinson's-related things I've taken for granted into perspective, I.e., decent, if not great medical treatment always available to me thru my HMO, support groups all over the place, people at PD organizations such as the NPF to call for information and referrals, the accessibility of the most current PD-drugs, and more. We PWPs living in the land of plenty (even if the streets aren't made of gold) <smile> DO have so much to be grateful for. Barb Mallut [log in to unmask] -----Original Message----- From: Camilla Flintermann <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Thursday, July 01, 1999 6:35 PM Subject: Counting blessings >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 ><[log in to unmask]> > > "Ask me about the CARE list for > Caregivers of Parkinsonians ! " >