Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Thanks for the information on food Bill. I'm a awful picky eater and am a consistency freak. My poor wife tries tries sohard to please my pallette. Like Charlotte my chief PD complaint is rigifity which is the cause of my tremendous pain. Right now I am using a Duragesic patch which slowly releases the frug fentanyl over a 72 hour period to fight the pain. I take Vicodin for breakthrough pain. If I don't use the patch I curl up into the fetal postion, rock back and forth and cry. My body can be as rigid as a board and the muscle tense right up no matter how much exersize I get. Pam - yes, Anne and I have been emailing back and frth about her procedure - sounds great and if this doesn't work I will look into it. Day 3 after my procedure and no problem yet. As far as a BDS goes. I'm just curious - I don't think I would ever have one done. Just satisfying my need for knowledge LOL. My two sisters do not recognize that I am sick or they don't show it - they call once or twice a year, Never visit (they live only 200 miles away. My wife is angry and my heart is broken. We have both talked to them and have asked them to stay out of our lives but I felt I had to reconcile that as I got sicker. The last time I saw them was Christmas and prior to that was when my mother died in April 2000. Both times we traveled to see them. They say they are bringing my father down sometime as he can no longer drive far due to a herniated disc. We have asked him to get involved and he states that they have their own problems. I pray to my mother to give them insite butt nothing yet. It breaks my heart as we were a close family. My daughter and son barely know what they look like and my daughter comments how they hurt her father. Oh well. I've become used to it although it still hurts Tim _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 My heart goes out to those of you whose families seem to have abandoned you when you need them the most. Ken and I had some old time friends who found it much too painful to visit him, but family members were always there for us, and I am so very grateful for that. Our son and his family live in Japan, but they were all able to come to see " Grandpa " one last time a few months before he died. I think that having his children and grandchildren visiting him and obviously loving him contributed greatly to Ken's willingness to keep fighting. I wish I could share with you how to get your family to come, but I can't. I am just fortunate to be in such a close, caring family. However, I too, found that my friends on this LISTSERV and the ones in our local Support Group, were the ones I turn to even today when I am feeling blue. That is the big plus of this illness -- having a group of new friends who are closer to me than many of my longtime friends. Love to all of you, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 My heart goes out to those of you whose families seem to have abandoned you when you need them the most. Ken and I had some old time friends who found it much too painful to visit him, but family members were always there for us, and I am so very grateful for that. Our son and his family live in Japan, but they were all able to come to see " Grandpa " one last time a few months before he died. I think that having his children and grandchildren visiting him and obviously loving him contributed greatly to Ken's willingness to keep fighting. I wish I could share with you how to get your family to come, but I can't. I am just fortunate to be in such a close, caring family. However, I too, found that my friends on this LISTSERV and the ones in our local Support Group, were the ones I turn to even today when I am feeling blue. That is the big plus of this illness -- having a group of new friends who are closer to me than many of my longtime friends. Love to all of you, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 Tim, We had much the same problem with family outside our immediate kids. They were fine as long as we could go and see them, but when it came time that we could not get out, they were too busy. Charlotte's sister and mother died before Charlotte got that bad, but her brother (only living member of their family) did not even come to the funeral. My family and many friends (and MSA family friends, Thanks, guys) were there at the funeral. But from 1998 to her death we saw MSA family more than blood family. Remember that this disorder tends to scare them more than something like cancer. They see the patient aging, in cancer the patient is often well and a few weeks later the patient is gone. So some of the problem may be procrastination - 'well it may be years before they die so we will go tomorrow'. With cancer they know that tomorrow may be today. Everyone has some fear of sickness and death deep down and they probably justify not coming as " making less inconvenience on your caregiver " . Little do they know that the caregiver needs the change of pace as much as the patient (I speak from experience!!!!) I found that (as you say) kids adapt better than adults to the reality of the situation. Shane (our eight year old grandson and na (six) don't remember Charlotte not being in a wheelchair. But even Mitch who is eighteen and remembers when he could not keep up with Charlotte and I, adapted well. This is another area that we need help. How common is this with all of you? How much do you think this type of thing hurts the patient (and caregiver) psychologically? This is an area of caregiving that needs to get out to the public. How much help would it be to the patients (and caregivers) if their friends/relatives made more of an effort to visit and relieve the feeling of isolation? Maybe we should suggest it as a sermon topic to our religious leaders ) You know with a mention of movement disorders and this type of title: " Do unto others as you would have them do unto you " , " Fighting for brain cells, like you fight for fetal cells " , " Is your brother, your neighbor? " " Love is saying Hi in person and holding a hand at times " , " A warm hug is the best pill " . Remember too that we ourselves need to remember these words " ... forgive them, for they know not what they do " . Take care, Bill Tim - tell your wife to give you a hug for me. Tim Foley wrote: > Thanks for the information on food Bill. I'm a awful picky eater and am a > consistency freak. My poor wife tries tries sohard to please my pallette. > > Like Charlotte my chief PD complaint is rigifity which is the cause of my > tremendous pain. Right now I am using a Duragesic patch which slowly > releases the frug fentanyl over a 72 hour period to fight the pain. I take > Vicodin for breakthrough pain. If I don't use the patch I curl up into the > fetal postion, rock back and forth and cry. My body can be as rigid as a > board and the muscle tense right up no matter how much exersize I get. > > Pam - yes, Anne and I have been emailing back and frth about her procedure - > sounds great and if this doesn't work I will look into it. Day 3 after my > procedure and no problem yet. As far as a BDS goes. I'm just curious - I > don't think I would ever have one done. Just satisfying my need for > knowledge LOL. > > My two sisters do not recognize that I am sick or they don't show it - they > call once or twice a year, Never visit (they live only 200 miles away. My > wife is angry and my heart is broken. We have both talked to them and have > asked them to stay out of our lives but I felt I had to reconcile that as I > got sicker. The last time I saw them was Christmas and prior to that was > when my mother died in April 2000. Both times we traveled to see them. > They say they are bringing my father down sometime as he can no longer drive > far due to a herniated disc. We have asked him to get involved and he > states that they have their own problems. I pray to my mother to give them > insite butt nothing yet. It breaks my heart as we were a close family. My > daughter and son barely know what they look like and my daughter comments > how they hurt her father. Oh well. I've become used to it although it still > hurts > > Tim > > _________________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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