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AP Docs
Mar 22, 2010 17:58:05 GMT -5
Post by Cubby on Mar 22, 2010 17:58:05 GMT -5
It breaks mine too. The lady who called me was crying and crying. I did send her the latest from the Inspire Board which I posted under the AP section here. Other than that, tho, my hands are tied.
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AP Docs
Mar 22, 2010 20:39:39 GMT -5
Post by scheetzie on Mar 22, 2010 20:39:39 GMT -5
That is so sad - why wouldn't someone want to give it one last shot on possibly getting better............ And then the family to also say NO - that's horrible...........
I am going to be searching out any docs in my area that will take the chance, if not, I keep going till I find one...
btw - Thanks for the phone #, etc.............
Donna
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AP Docs
Mar 26, 2010 19:40:54 GMT -5
Post by jeffn on Mar 26, 2010 19:40:54 GMT -5
It is a heartbreaking story but all too common and not just in regard to AP but any treatment and the road not taken. Unfortunately this woman appears to be in a condition that requires help from her family probably get to the doctors etc. so the family can exert their perception of what is in her best interest (Perhaps). It seems everyone has an opinion of what a person with a chronic disease should do but the bottom line is they don't have the disease! How do they know what SD is like and what is best for someone with SD. While it is good to discuss treatment options etc with the family or whomever the bottom line is that it is our disease and our problem in the end, they are not in the wheelchair. The "well uncle Harry says that I should not try such and such" just does not cut it. Perhaps they mean well and are trying to help or maybe it is just more of a control issue I don't know. When I was looking into my treatment I had several tell me not to try, my wife was willing to back me with whatever I decided to do but if I not had the backing I still would have given it a shot. I did not want to end up in a wheel chair with feeding tubes. Not that everyone does end up there but from my reading SD did not appear to be a fun kind of thing. I was unwilling to wait and see where it might or might not take me. I guess my point is that it really comes down to us to research and make our decisions. Listen to others but bottom line it is that it is our problem not theirs. Others don't really have much of a stake in our condition. Keep fighting and trying until you find something that works. Perhaps in the end it will all be for naught but it least we went down kicking and clawing. "Do not go gentle into that good night" as Dylan Thomas said.
OK deep breath - rant over.
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AP Docs
Mar 27, 2010 13:00:28 GMT -5
Post by Cubby on Mar 27, 2010 13:00:28 GMT -5
I LOVE IT WHEN YOU RANT!!!! ;D Yes, my husband was opposed to the AP also because the book was so old and so was the research. I told him, I AM DOING IT! Being the awsome sweetheart that he is, he agreed to back me up on whatever I did. Having publicly praised him, we will probably have a fight about something today!!!
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