 |
 |
Hello Werner and Anne in Newfoundland and all others on this incredibly growing network. First a few thankyous. To Babara Patterson everyone appreciates your welcome to new subscribers. Thanks to Greg Johnson and Alan Bonader for information on Dr. Iacono within a few short hours. As others have found, this new means of communication seems to prompt rapid responses. It makes me think that perhaps we will get back to the letter-writing habits of the Victorians at long last -- but using this new technology. Thanks too to Barbara Yacos for your responses. One of the problems, for Moira and me (and probably afew others) will be the sheer volume of new messages each day. It will be a challenge to respond and keep up to date. For those out there who do not know, a few facts about Moira and me. My wide, Moira MacPherson, has had Parkinson's for almost 15 years. We have been married for just five years and Moira has two young children - two boys aged 11 and 15 (going on 16). I came to the role of caregiving relatively recently and my perspective will perhaps differ from many others. The whole question of caregiving is a topic that should be the subject of this network...and I expect I have just initiated it. [Unless, of course, some earlier discussion lies in the archive files I have not yet read.] Moira has been a high profile Parkinsonian here in nova Scotia since she arrived in 1984. I met her shortly afterward -- about 1986. My first and enduring impression of Moira was of her determination in the face of Parkinson's to "do" things and to raise her two boys. I continue to admire this greatly, but have come to realize that this is a trait of many Parkinsonians. And it's just great. Moira has been very active in the Parkinson Foundation of Canada and was instrumental in establishing the Nova Scotia Division. She also was a key advocate of the Dalhousie research team that undertook fetal transplants. However, like many others, the new, but old, surgical technique of pallidotomy is her great hope just now. I am printing all of the messages about the "D" word to pass on to Bob Symons, President of the Halifax-Dartmouth Chapter. Bob intitiated the debate locally and nationally in Canada and has been writing to people in the U.S. and U.K. about it. He will welcome many of the comments and I will pass on his response in due course since Bob does not have a computer. I think the immediate response that Werner received is in itself indicative of the importance of the question. I don't think it is trivial or inconsequential. The distinction between and illness and a disability is extremely important if only for the value it will have in getting governments and society as a whole to recognize the real effect Parksinson's has on an individual, the family and everyone around him or her. It is not that long ago that disabilities were hidden away from general view. The disabled have the right to play a vital and active role within the limitations of their disability. That, to me at least, is what the "D" word debate really is all about. I'm sorry to be so longwinded (and I have probably lost some people long ago). But I was feeling guilty at making use of the network without really introducing myself or Moira. We will continue to have our "two cents worth". All the best to everyone, Peter -- Peter J. [log in to unmask]