Guest guest Posted June 11, 2000 Report Share Posted June 11, 2000 Dear Claire, OK maybe it will help me I hope, I hope I hope..... I am a bonafied choco-holic. One of my biggest concerns after my surgery is complete on July 12th, is that all goes well first and formost, and secondly that my love of chocolate Dr R removes while I'am under his magic spell in the OR. Today I was dicussing this very issue with a friend of mine. He suggested sugar free hot chocalate, regular chocolate and carob as possible options. Preferably I would like to have the desire extracted all together. Throwing up is just not my thing, good or bad I hate it so with any luck I won't want any of the above.. Wish me luck Luv Susie G ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2000 Report Share Posted June 11, 2000 Dear Claire, OK maybe it will help me I hope, I hope I hope..... I am a bonafied choco-holic. One of my biggest concerns after my surgery is complete on July 12th, is that all goes well first and formost, and secondly that my love of chocolate Dr R removes while I'am under his magic spell in the OR. Today I was dicussing this very issue with a friend of mine. He suggested sugar free hot chocalate, regular chocolate and carob as possible options. Preferably I would like to have the desire extracted all together. Throwing up is just not my thing, good or bad I hate it so with any luck I won't want any of the above.. Wish me luck Luv Susie G ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2000 Report Share Posted June 11, 2000 Dear Claire, OK maybe it will help me I hope, I hope I hope..... I am a bonafied choco-holic. One of my biggest concerns after my surgery is complete on July 12th, is that all goes well first and formost, and secondly that my love of chocolate Dr R removes while I'am under his magic spell in the OR. Today I was dicussing this very issue with a friend of mine. He suggested sugar free hot chocalate, regular chocolate and carob as possible options. Preferably I would like to have the desire extracted all together. Throwing up is just not my thing, good or bad I hate it so with any luck I won't want any of the above.. Wish me luck Luv Susie G ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2000 Report Share Posted June 11, 2000 Dear Joanne, Congradulations for making it safely over to the great side of life!!! Keep us posted on your success ..I'll be watching:)::): MGB July 12th comming soon at a hospital near you SusieG ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2000 Report Share Posted June 11, 2000 Dear Joanne, Congradulations for making it safely over to the great side of life!!! Keep us posted on your success ..I'll be watching:)::): MGB July 12th comming soon at a hospital near you SusieG ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 In a message dated 6/12/00 1:25:35 AM Eastern Daylight Time, susie0805@... writes: << Today I was dicussing this very issue with a friend of mine. He suggested sugar free hot chocalate, regular chocolate and carob as possible options. Preferably I would like to have the desire extracted all together. Throwing up is just not my thing, good or bad I hate it so with any luck I won't want any of the above.. Wish me luck Luv Susie G >> Susie, I wish you good luck. Actually, to tell you the truth I have pretty much lost my chocolate cravings since surgery! When I do want some chocolate I usually take a bite or two of a protein bar and that satisfies the craving and gives me some protein! My " affair " with hot chocolate has been more about finding something " different " to drink lol. I had totally forgotten about sugar free hot chocolate! LOL When I was on Weight Watchers I used to drink Alba 66 all the time! Well, I'm saying a big DUHHHHHH! Guess I'll have to look for some on my next trip to the grocery store. THANK YOU!!! {{HUGS}} Claire MGB 4/10/00 300/264 15.25 inches lost forever!! Dr. Rutledge (http:/clos.net) " He who began a good work in you will be faithful to complete it until the day of Christ Jesus. " - Phil. 1:6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 In a message dated 6/12/00 1:25:35 AM Eastern Daylight Time, susie0805@... writes: << Today I was dicussing this very issue with a friend of mine. He suggested sugar free hot chocalate, regular chocolate and carob as possible options. Preferably I would like to have the desire extracted all together. Throwing up is just not my thing, good or bad I hate it so with any luck I won't want any of the above.. Wish me luck Luv Susie G >> Susie, I wish you good luck. Actually, to tell you the truth I have pretty much lost my chocolate cravings since surgery! When I do want some chocolate I usually take a bite or two of a protein bar and that satisfies the craving and gives me some protein! My " affair " with hot chocolate has been more about finding something " different " to drink lol. I had totally forgotten about sugar free hot chocolate! LOL When I was on Weight Watchers I used to drink Alba 66 all the time! Well, I'm saying a big DUHHHHHH! Guess I'll have to look for some on my next trip to the grocery store. THANK YOU!!! {{HUGS}} Claire MGB 4/10/00 300/264 15.25 inches lost forever!! Dr. Rutledge (http:/clos.net) " He who began a good work in you will be faithful to complete it until the day of Christ Jesus. " - Phil. 1:6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 In a message dated 6/12/00 1:25:35 AM Eastern Daylight Time, susie0805@... writes: << Today I was dicussing this very issue with a friend of mine. He suggested sugar free hot chocalate, regular chocolate and carob as possible options. Preferably I would like to have the desire extracted all together. Throwing up is just not my thing, good or bad I hate it so with any luck I won't want any of the above.. Wish me luck Luv Susie G >> Susie, I wish you good luck. Actually, to tell you the truth I have pretty much lost my chocolate cravings since surgery! When I do want some chocolate I usually take a bite or two of a protein bar and that satisfies the craving and gives me some protein! My " affair " with hot chocolate has been more about finding something " different " to drink lol. I had totally forgotten about sugar free hot chocolate! LOL When I was on Weight Watchers I used to drink Alba 66 all the time! Well, I'm saying a big DUHHHHHH! Guess I'll have to look for some on my next trip to the grocery store. THANK YOU!!! {{HUGS}} Claire MGB 4/10/00 300/264 15.25 inches lost forever!! Dr. Rutledge (http:/clos.net) " He who began a good work in you will be faithful to complete it until the day of Christ Jesus. " - Phil. 1:6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 I think my wife's progression with what was diagnosed as PSP was probably slower than usual. I give the credit - if credit is needed - to the fact that we tried to keep her comfortable and take care of her needs but we did not " try " one drug after another to see " if they might help. " Before I go further I want to say that her experiences with nutrition and supplements was in her early stages. As she got worse it was harder and harder to do it and after she had to enter a nursing home we dropped it completely. It just wasn't worth the fight to continue and there were other more important issues affecting her overall care that required attention. When I wrote about Tylenol if was regarding taking it and NAC at the same time. My wife in the latter stages was not being given NAC and was given Tylenol regularly and I didn't object. There was never an overdose and it was safe. The major medical problem regarding medications involved a medication given to relieve a rash she had developed. Instead of treating the rash directly as with a lotion or salve she was given a pill that " blocked " the action of acetylcholine (a neurotransmitter already in short supply in Alzheimer's and PSP) which would cover up her feeling that she truly itched. It didn't do a thing to cure the rash. She was also given another pill at the same time that was supposed to treat her depression. She showed some apathy but not depression. They are two different things. Together, the pills changed her drastically but the doctor didn't notice it until we brought it to his attention. She was basically turned into a " zombie " with no expression and her overall conditioned worsened. Researching the possible (and not probable) side-effects of the medications (once we discovered they were being given) suggested that they might be a part of the problem. The medications were withdrawn and she slowly returned to the real world. From that time on the doctor and I worked in tandem on whatever she was taking. I always knew what it was before they were given. In so many of these sister diseases the same medications are tried over and over again at tremendous cost both in human and financial terms. With PSP there is no approved treatment or even any kind of guidelines. No one has kept any kind of list of who tried what and if it did any good at all. One quite major problem is that the diagnosis may not be correct - some mistakes are made. Often it is in error and we are not always comparing apples and oranges. A few bananas are spread around in the mix too. To really discover what is happening we need some way to correctly diagnose these diseases at an early stage and this is not possible at present. One alternative is to try to group patients by symptoms and so many conditions share the same ones. This may not be possible either. So we try to help and sometimes we forget that our major goal should be to " do no harm. " Sometimes we do do harm without realizing it and that is the hardest thing to live with. If anyone has any ideas how our experiences can improve care by serving as a guide to what works and what doesn't please let your views be known. I've told you I try to help by providing a website at http://pspinformation.com but it is more than one person can do. Over time I've collected a great deal of information but most is from others and little from us. The reason is that its extremely difficult to write about such personal experiences and not to appear to be someone that is suggesting to others what to do. You can put it into a special section and you can label it as being an opinion as clearly as possible but you always risk being taken over the coals for what you say - mainly because you aren't a medical professional. We haven't found a workable answer yet so there is information that needs to be put in one accessible place that isn't there. Ron Ritch. Quote Link to comment Share on other sites More sharing options...
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