Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Boy, are they OFF! They estimate that *at my current weight*, I should live until I'm 91 based on " first degree " genetic history. I don't think their chart works well with younger people because our parents often haven't yet developed some of the problems that they eventually will like prostate cancer,e tc. alyssa Life Expectancy > > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > > > interesting to find out how long we might live after this surgery....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Boy, are they OFF! They estimate that *at my current weight*, I should live until I'm 91 based on " first degree " genetic history. I don't think their chart works well with younger people because our parents often haven't yet developed some of the problems that they eventually will like prostate cancer,e tc. alyssa Life Expectancy > > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > > > interesting to find out how long we might live after this surgery....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 I dont think we females have to worry about prostate cancer, do you? LOL It was fun to do though.....according to them I will live to 103 (high end) and my goal is 125! 103 will give me 46 more years when I thought I would only have maybe 10 at the most pre opt! Woooooohooooooo! hugs, Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 I dont think we females have to worry about prostate cancer, do you? LOL It was fun to do though.....according to them I will live to 103 (high end) and my goal is 125! 103 will give me 46 more years when I thought I would only have maybe 10 at the most pre opt! Woooooohooooooo! hugs, Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 hmm, I did this 2x, with the only difference being my current weight--380, and goal wt--180, and I got the same amount of years---81.98 (º·.¸(¨*·.¸ ¸.·*¨)¸.·º) «.·°· * Ru *.·°·.» (¸.·º(¸.·¨ * *¨·.¸)º·.¸) Web page: http://home.earthlink.net/~nurseru/index.html Web page: http://profiles.yahoo.com/rumerybast ~~ Walking in the PawPrints of Bast, Listening to the Wisdom in Her Purr~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 hmm, I did this 2x, with the only difference being my current weight--380, and goal wt--180, and I got the same amount of years---81.98 (º·.¸(¨*·.¸ ¸.·*¨)¸.·º) «.·°· * Ru *.·°·.» (¸.·º(¸.·¨ * *¨·.¸)º·.¸) Web page: http://home.earthlink.net/~nurseru/index.html Web page: http://profiles.yahoo.com/rumerybast ~~ Walking in the PawPrints of Bast, Listening to the Wisdom in Her Purr~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 In a message dated 8/20/01 11:12:25 PM Eastern Daylight Time, jhensel@... writes: > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > So how long might that be? I am unable to get to any website Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 In a message dated 8/20/01 11:12:25 PM Eastern Daylight Time, jhensel@... writes: > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > So how long might that be? I am unable to get to any website Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > So how long might that be? I am unable to get to any website>>>> not sure what you mean........ Re: Life Expectancy > In a message dated 8/20/01 11:12:25 PM Eastern Daylight Time, > jhensel@... writes: > > > > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > > > > So how long might that be? I am unable to get to any website > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > So how long might that be? I am unable to get to any website>>>> not sure what you mean........ Re: Life Expectancy > In a message dated 8/20/01 11:12:25 PM Eastern Daylight Time, > jhensel@... writes: > > > > http://diskworld.wharton.upenn.edu/~chuac/perl/CalcForm.html > > > > So how long might that be? I am unable to get to any website > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Hello, My name is Thom. I live in Atlanta. My father, age 76, has been diagnosed with Shy-Drager. Although the diagnosis was reletively recent, he first began to exhibit symptons, most noticably, postural hypotension and the associated blackouts and dizzyness, about three years ago. He was diagnosed in March when he had to be hospitalized due to a rapid deterioration in his physical condition. In a matter of weeks he went from being relitively normal to being bed-ridden. He is extremly weak. He is unable to sit up unassisted, he can not walk or stand at all. He has lost about 20% of his body weight. He has had to be catheterized and his kidneys are functioning at 50%. When he is awake he often appears to be catotonic, staring blankly into space. He is in a nursing home where he is under a doctor's care, but they are having trouble keeping his electrolytes balanced, he has recently started vomiting after his meals and he has developed a MSRA infection in his urinary tract. I have read some of the literature on the various web sites and they all say that life expectancy is seven to ten years from diagnosis. Here is my question; given the rapid onset and his current condition, is seven to ten years a realistic prognosis? It' s very difficult to imagine that this would continue for that length of time. I would really appreciate any experiences you might be willing to share or any insights you might have. Please feel free to respond to me directly at my e-amil address, tgillott@... Thank you all so much, Sincerely, Thom in Atlanta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Greetings Thom, I don't know the answer to your question (others on the list probably will have some responses for you) but I would add a second question to yours and see if anyone can it when they respond to your question. Is there any reason to suspect that people who have onset of symptoms and/or are diagnosed with MSA at a later age (as opposed to people who have onset or symptoms or are diagnosed in their 50s) might progress more rapidly? I haven't been keeping track of it, but it seems that maybe we hear more about " rapid declines " from people who are older when diagnosed. Anyone else have any comments on this? Jerry Cash Life expectancy Hello, My name is Thom. I live in Atlanta. My father, age 76, has been diagnosed with Shy-Drager. Although the diagnosis was reletively recent, he first began to exhibit symptons, most noticably, postural hypotension and the associated blackouts and dizzyness, about three years ago. He was diagnosed in March when he had to be hospitalized due to a rapid deterioration in his physical condition. In a matter of weeks he went from being relitively normal to being bed-ridden. He is extremly weak. He is unable to sit up unassisted, he can not walk or stand at all. He has lost about 20% of his body weight. He has had to be catheterized and his kidneys are functioning at 50%. When he is awake he often appears to be catotonic, staring blankly into space. He is in a nursing home where he is under a doctor's care, but they are having trouble keeping his electrolytes balanced, he has recently started vomiting after his meals and he has developed a MSRA infection in his urinary tract. I have read some of the literature on the various web sites and they all say that life expectancy is seven to ten years from diagnosis. Here is my question; given the rapid onset and his current condition, is seven to ten years a realistic prognosis? It' s very difficult to imagine that this would continue for that length of time. I would really appreciate any experiences you might be willing to share or any insights you might have. Please feel free to respond to me directly at my e-amil address, tgillott@... Thank you all so much, Sincerely, Thom in Atlanta If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Hello Jerry Cash: I think older people do deteriorate faster, at least that is my experience with my husband., who is 78. He was diagnosed with SD in late 97, but now symptoms are very serious, and we go nowhere. One doctor in 98 predicted 2 1/2 years to 4 years, and Sam is doing better than that, but when I read about all the younger people going on trips, reading, going out in the garden, and even working--well, no way could Sam do that. I even feed him many times and have to dress him and he can't read (eyes don't focus and also macular degeneration destroyed central vision in one eye,) and can't write. My what a litany of complaints. It would be interesting to see how older people are doing.--younger people seem to last a long time. Lou ReynoldsAt 05:11 PM 7/9/2002 -0500, you wrote: >Greetings Thom, > >I don't know the answer to your question (others on the list probably will >have some responses for you) but I would add a second question to yours and >see if anyone can it when they respond to your question. > >Is there any reason to suspect that people who have onset of symptoms and/or >are diagnosed with MSA at a later age (as opposed to people who have onset >or symptoms or are diagnosed in their 50s) might progress more rapidly? I >haven't been keeping track of it, but it seems that maybe we hear more about > " rapid declines " from people who are older when diagnosed. Anyone else have >any comments on this? > >Jerry Cash > > Life expectancy > > >Hello, > >My name is Thom. I live in Atlanta. My father, age 76, has been >diagnosed with Shy-Drager. Although the diagnosis was >reletively recent, he first began to exhibit symptons, most >noticably, postural hypotension and the associated blackouts >and dizzyness, about three years ago. He was diagnosed in >March when he had to be hospitalized due to a rapid >deterioration in his physical condition. In a matter of weeks he >went from being relitively normal to being bed-ridden. He is >extremly weak. He is unable to sit up unassisted, he can not >walk or stand at all. He has lost about 20% of his body weight. >He has had to be catheterized and his kidneys are functioning at >50%. When he is awake he often appears to be catotonic, >staring blankly into space. He is in a nursing home where he is >under a doctor's care, but they are having trouble keeping his >electrolytes balanced, he has recently started vomiting after his >meals and he has developed a MSRA infection in his urinary >tract. > >I have read some of the literature on the various web sites and >they all say that life expectancy is seven to ten years from >diagnosis. Here is my question; given the rapid onset and his >current condition, is seven to ten years a realistic prognosis? It' s >very difficult to imagine that this would continue for that length of >time. I would really appreciate any experiences you might be >willing to share or any insights you might have. > >Please feel free to respond to me directly at my e-amil address, >tgillott@... Thank you all so much, > >Sincerely, >Thom in Atlanta > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Hi all, I don't think this is a standard pattern as many of our younger MSA patients seem to have gone downhill rather fast also. It may be more a case of how well you fight the problem and how well regulated you are with meds. BUT, that may also be a unscientific view and too simplistic. Sorry, but after dealing with it for 12 years, I do not think there is a simple answer. Charlotte got it at age 50 and died at 62 (sort of middle of the road for age but long survival). Yet some of the younger recent patients have lost movement much faster than Charlotte did (5 years from dx of PD to w/c dependent). In general, exercise and a strong will to survive helps. Working closely with your doctor on balancing meds seems to help. If you benefit from Sinemet it " seems " to help your chance of living longer. Watching closely for infection and prompt attention to treatment of infections DOES help. So many things affect longevity. We have also found that people who survive the longest often turn out to have some other brain disorder also. Ken was one of those, it turned out that he had Lewy Body Disease rather than MSA. They are similar, but not exactly the same. In one case here on the list, the caregiver died in a car accident with a drunk driver, the patient is still alive. So there are no real rules for survival. Many of us have tried for years to pin things like this down and there are always exceptions. Take care, Bill Werre > > > Date: 2002/07/09 Tue PM 07:56:04 CDT > To: shydrager > Subject: RE: Life expectancy > > Hello Jerry Cash: I think older people do deteriorate faster, at least > that is my experience with my husband., who is 78. He was diagnosed with SD > in late 97, but now symptoms are very serious, and we go nowhere. One > doctor in 98 predicted 2 1/2 years to 4 years, and Sam is doing better than > that, but when I read about all the younger people going on trips, reading, > going out in the garden, and even working--well, no way could Sam do > that. I even feed him many times and have to dress him and he can't read > (eyes don't focus and also macular degeneration destroyed central vision in > one eye,) and can't write. My what a litany of complaints. It would be > interesting to see how older people are doing.--younger people seem to last > a long time. Lou ReynoldsAt 05:11 PM 7/9/2002 -0500, you wrote: > >Greetings Thom, > > > >I don't know the answer to your question (others on the list probably will > >have some responses for you) but I would add a second question to yours and > >see if anyone can it when they respond to your question. > > > >Is there any reason to suspect that people who have onset of symptoms and/or > >are diagnosed with MSA at a later age (as opposed to people who have onset > >or symptoms or are diagnosed in their 50s) might progress more rapidly? I > >haven't been keeping track of it, but it seems that maybe we hear more about > > " rapid declines " from people who are older when diagnosed. Anyone else have > >any comments on this? > > > >Jerry Cash > > > > Life expectancy > > > > > >Hello, > > > >My name is Thom. I live in Atlanta. My father, age 76, has been > >diagnosed with Shy-Drager. Although the diagnosis was > >reletively recent, he first began to exhibit symptons, most > >noticably, postural hypotension and the associated blackouts > >and dizzyness, about three years ago. He was diagnosed in > >March when he had to be hospitalized due to a rapid > >deterioration in his physical condition. In a matter of weeks he > >went from being relitively normal to being bed-ridden. He is > >extremly weak. He is unable to sit up unassisted, he can not > >walk or stand at all. He has lost about 20% of his body weight. > >He has had to be catheterized and his kidneys are functioning at > >50%. When he is awake he often appears to be catotonic, > >staring blankly into space. He is in a nursing home where he is > >under a doctor's care, but they are having trouble keeping his > >electrolytes balanced, he has recently started vomiting after his > >meals and he has developed a MSRA infection in his urinary > >tract. > > > >I have read some of the literature on the various web sites and > >they all say that life expectancy is seven to ten years from > >diagnosis. Here is my question; given the rapid onset and his > >current condition, is seven to ten years a realistic prognosis? It' s > >very difficult to imagine that this would continue for that length of > >time. I would really appreciate any experiences you might be > >willing to share or any insights you might have. > > > >Please feel free to respond to me directly at my e-amil address, > >tgillott@... Thank you all so much, > > > >Sincerely, > >Thom in Atlanta > > > > > >If you do not wish to belong to shydrager, you may > >unsubscribe by sending a blank email to > > > >shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 OKAY... HERE GOES... I'M WRITING FROM " VACATION " , SO HAD TO READ A BIT TO SEE WHAT IS GOING ON IN THIS LINK, BUT HERE IS MY 2 CENTS WORTH - FOR WHATEVER THAT IS WORTH... Is there any reason to suspect that people who have onset of symptoms and/or are diagnosed with MSA at a later age (as opposed to people who have onset or symptoms or are diagnosed in their 50s) might progress more rapidly? HOW ABOUT EVEN EARLIER? I AM GUESSING THAT MUCH OF THIS, HAS TO DO WITH THE INDIVIDUAL WHO IS AFFLICTED. THE REASON I SAY THIS IS... EVEN THOUGH THE JURY IS STILL OUT REGARDING ME - AND WHETHER IT IS MSA - NO OTHER DIAGNOSIS FITS SO ADEQUATELY. AND MY REGRESSION HAS BEEN SWIFT THE PAST 9 MONTHS - WITH ONLY VERY MINIMAL INDICATIONS PRIOR TO THIS OF ANY RELATED PROBLEM. THE VERY MOST I'VE HAD ANY SUCH SYMPTOMS WOULD BE 3 YEARS. ANYWAY, I'VE HAD SIGNIFICANT REGRESSION, AND I'M YOUNG - DON'T EVEN TURN 40 UNTIL LATER THIS MONTH. I haven't been keeping track of it, but it seems that maybe we hear more about " rapid declines " from people who are older when diagnosed. Anyone else have any comments on this? I HAVE NO IDEA ON THIS ONE. I'M NEW TO THIS SITE AS WELL AS THIS DISEASE AS A CONSIDERATION FOR DIAGNOSIS. I JUST KNOW THAT THIS SEEMS LIKE ALL NEUROLOGICALLY RELATED DISEASES - VERY INDIVIDUAL- SPECIFIC. PLEASE READ ON FOR FURTHER COMMENTS - ESPECIALLY YOU THOM. > -----Original Message----- > From: tggillott [mailto:tgillott@a...] > Hello, > > My name is Thom. HI THOM. I live in Atlanta. MY PARENTS LIVE IN ATLANTA - WELL, ACTUALLY POWDER SPRINGS, BUT CLOSE. My father, age 76, has been diagnosed with Shy-Drager. Although the diagnosis was reletively recent, he first began to exhibit symptons, most noticably, postural hypotension and the associated blackouts and dizzyness, about three years ago. He was diagnosed in March when he had to be hospitalized due to a rapid deterioration in his physical condition. ME TOO ON MOST OF THIS... MOST HAS OCCURRED SINCE OCTOBER. In a matter of weeks he went from being relitively normal THAT WAS ME IN SEPTEMBER. to being bed-ridden. I'M NOT THERE YET. THERE ARE DAYS, AND I GOT MUCH WORSE WHEN IN THE HOSPITAL(S)... AND PERHAPS THIS IS A BIG DIFFERENCE... I HAVE A JOB, I HAVE 3 YOUNG GIRLS... I HAVE REASONS I HAVE TO GET UP AND GO... AND SO I PRESS ON WITH ALL MY MIGHT. THAT IS NOT TO SAY HE IS NOT DOING ALL HE CAN - JUST THAT I CAN'T HELP BUT BELIEVE THAT IF I WASN'T BUILDING A HOUSE, AND A BARN, AND VIRTUALLY SELF-EMPLOYED, AND THE FATHER OF 3 YOUNG GIRLS, AND THE SOLE " BREAD-WINNER " - THAT I WOULDN'T BE PRESSING NEARLY AS HARD. OF COURSE, I AM NOW FACED WITH INCREASING UNCERTAINTY MYSELF. I NO LONGER DRIVE. MY WIFE DRIVES ME - EVERYWHERE - AND AS I WORK OUT OF TOWN MANY DAYS A MONTH - THAT IS QUITE A SERVICE SHE IS DOING (IN ADDITION TO ALL THE MEDICAL APPOINTMENTS AND SUCH). He is extremly weak. He is unable to sit up unassisted, AGAIN, I REGRESSED SIGNIFICANTLY WHILE HOSPITALIZED. MY INTERNIST SAW THAT HERSELF. I WENT FROM WALKING - TO HAVING TO USE A WALKER, OR BE WHEELED AROUND - IN A 2 WEEK PERIOD. ONCE I GOT BACK OUT, I PRESSED ON TO ACTIVITIES - AGAIN - MAINLY DUE TO MY GIRLS. he can not walk or stand at all. I'VE BEEN BLESSED HERE, BECAUSE MY MED SEEMS TO BE HELPING WITH THE BP DROPS. HOWEVER, THEY'VE GOTTEN WORSE AGAIN LATELY, SO NOT SURE... AT LEAST I CAN STILL STAND, AND WALK - MOST DAYS - JUST TAKES MORE EFFORT AND ASSISTANCE (BUT EVEN MY GIRLS ARE HELPFUL THERE). He has lost about 20% of his body weight. IN THE PERIOD FROM NOVEMBER 2001 TO MARCH 2002, I LOST OVER 30% OF MY BODY WEIGHT - FROM 200# DOWN TO 135# OR SO - WHICH IS ABOUT WHERE I AM NOW. > He has had to be catheterized and his kidneys are functioning at > 50%. MY KIDNEYS, AS IT SEEMS ALL BODILY SYSTEMS... ARE MESSED UP. SO FAR, NO CATH, BUT WHO KNOWS? When he is awake he often appears to be catotonic, staring blankly into space. MY WIFE SAYS THAT THIS HAS BEEN HAPPENING TO ME TOO - EXCEPT THAT WHEN I PRESENT THAT WAY - I REALLY AM NOT THERE. I HAVE ZONED OUT. I AM - APPARENTLY - ASLEEP. SHE'S BEEN ABLE TO OBSERVE ME CLOSER ON THIS TRIP, AND HAS SEEN THAT I'LL BE FINE ONE MINUTE, TALKING... THEN, WITHOUT WARNING, I'LL BE GONE. SHE'LL TALK TO ME, BUT I'LL APPEAR TO JUST BE STARING. ONE TIME, SHE HAD TO PULL OFF THE ROAD. THAT IS WHEN SHE REALIZED THAT I SEEM TO BE GOING TO SLEEP WITH MY EYES OPEN. THEY ACTUALLY NOTICED THAT THE FIRST TIME ABOUT A MONTH AGO. I REMEMBER NOTHING - AND SURE SEEMS I'M ASLEEP. HOW IS YOUR DAD'S COMMUNICATION? WHAT DOES HE SAY ABOUT THESE THINGS? He is in a nursing home where he is under a doctor's care, but they are having trouble keeping his electrolytes balanced, WELL, THEY HAVE TROUBLE WITH MANY THINGS WITH ME - BUT I KEEP ON TICKING. IN FACT, WHAT IS REALLY FUNNY (OR WOULD BE IF NOT SO UNTRUE) IS HOW MOST SAY I LOOK SO GOOD - OR BETTER! he has recently started vomiting after his meals I'VE BEEN DOING THIS FOR MONTHS - LITERALLY. SOMETIMES WORSE THAN OTHERS. NEVER PREDICTABLE - EXCEPT FOR THE FACT THAT THERE ARE VERY FEW DAYS IN WHICH I DON'T VOMIT AFTER AT LEAST ONE MEAL... SOMETIMES IT'S IMMEDIATE... SOMETIMES IT'S 5 HOURS LATER... SOMETIMES IT'S A DAY OR TWO LATER (WITH OTHER VOMITING IN BETWEEN). and he has developed a MSRA infection in his urinary tract. WELL, MY SYMPTOMS HERE ARE SAME AS OTHER PARTS... COME AND GO, AS DOES THE EVIDENCE OF INFECTION. I JUST HAD ALL THE SYMPTOMS AGAIN A WEEK AGO - AND THE TESTS WERE NEGATIVE. NEVER CAN TELL. > > I have read some of the literature on the various web sites and > they all say that life expectancy is seven to ten years from > diagnosis. ACTUALLY, I SAW SOMEWHERE JUST BEFORE I LEFT THAT LIFE EXPECTANCY CAN BE UP TO 18 YEARS. I THINK, AS WITH ALL THIS CRUD, THEY REALLY DON'T KNOW. I FOR ONE, AM DETERMINED TO BE THE ONE TO BREAK ALL EXPECTATIONS. Here is my question; given the rapid onset and his current condition, is seven to ten years a realistic prognosis? PERSONALLY, I THINK YOU HAVE TO TAKE A LOT OF THINGS INTO CONSIDERATION. WHAT WAS YOUR DAD'S HEALTH LIKE BEFORE THIS ALL SET IN HARD? MY CONDITION WAS, BY MOST PEOPLE'S STANDARDS, EXCELLENT. I HAD MORE THAN MY SHARE OF HEALTH PROBLEMS, BUT, LIVING ON A FARM, I HAD QUITE THE MUSCULATURE AND SUCH. IN OTHER WORDS, I HAD SOMETHING I COULD LOSE - IN ALMOST ALL AREAS (SOME WOULD QUESTION MY ABILITY TO LOSE ANY MORE MENTAL FUNCTIONING :-) ANYWAY, IT MAKES SENSE TO THINK THAT LIFE EXPECTANCY WOULD BE LOWER - THE OLDER THE ONSET. I MEAN... JUST CONSIDER HOW ANY ILLNESS EFFECTS THE ELDERLY. BUT... MY INTERNIST WOULD TELL YOU THAT IN MY CASE, THOUGH CERTAINLY NOWHERE NEAR YOUR DAD'S AGE, MY LIFE EXPECTANCY IS NOT ALL THAT GREAT RIGHT NOW, AND HASN'T BEEN FOR MONTHS - BECAUSE I HAVEN'T GOT NEARLY THE PERSONAL RESOURCES (PHYSICAL) TO DEAL WITH THAT I HAD JUST ONE YEAR AGO. IN FACT, WHEN SHE HOSPITALIZED ME, SHE TOLD ME THAT IF I DIDN'T GO IN - I WAS GONNA DIE (WHICH I STILL VIEW AS AN INACCURATE STATEMENT, BUT IT HAS LED ME ON A PATH OF DISCOVERY). It' s very difficult to imagine that this would continue for that length of time. OKAY THOM... HERE COMES SOME BRUTAL REALITY FROM MY PERSPECTIVE... BRUTAL REALITY BECAUSE OF MY RECENT THOUGHT PROCESSES... SPEAKING PERSONALLY, OF MYSELF HERE... I HAVE TO ADMIT THAT I HAVE CAUGHT MYSELF THINKING THE SAME THOUGHTS... I HAVE SEEN MASSIVE REGRESSION - AND IT CONTINUES. I AM NO LONGER ABLE TO DRIVE, AND IT APPEARS I QUIT JUST IN TIME. I AM NOW DISPLAYING MUSCLE MOVEMENTS WHICH ARE BEYOND MY CONTROL - ON A MORE AND MORE FREQUENT BASIS. IT SEEMS EVERY SYSTEM IN MY BODY IS GOING HAYWIRE - AND I JUST CAN'T SEE THAT I COULD POSSIBLY SURVIVE ANOTHER 6 TO 9 YEARS AT THIS RATE OF REGRESSION. I CAN'T SEE IT FOR MYSELF, AND I CAN'T SEE IT FOR MY FAMILY - WHO HAS HAD TO ENDURE THIS RIGHT ALONG WITH ME. BUT, I'LL KEEP PLODDING ON AS LONG AS GOD KEEPS GIVING ME THE STRENGTH. HE GRANTS ME SOME DAYS WHICH ARE FAR BETTER THAN OTHERS, AND THOSE DAYS (I'M CONVINCED) GIVE ME A BREAK, AND A CHANCE TO RECUPERATE JUST ENOUGH TO KEEP ON FIGHTING. IN FACT, I CALL THOSE DAYS " GRACE DAYS " . YET, EVEN THOSE DAYS, WHICH USED TO BE NEARLY ABSENT OF SYMPTOMS, ARE FILLED WITH MANY - JUST AT A LEVEL I CAN BETTER TOLERATE. I would really appreciate any experiences you might be willing to share or any insights you might have. WELL, HOPEFULLY THIS HAS HELPED. IN BRIEF RESPONSE... NO ONE KNOWS THE HOUR (OR EVEN MINUTE OR SECOND) OF OUR LAST BREATH. I MEAN... I JUST VISITED AN AUNT THIS TRIP, WHO LOST A SON - TOTALLY UNEXPECTEDLY. HE WENT OUT TO PICK BERRIES, AND NEVER WALKED BACK. THEY WERE NOT EVEN ABLE TO SAY WHAT CAUSED HIS DEATH! SO, JUST TREASURE EVERY MINUTE EXTRA THAT YOU HAVE BEEN GRANTED WITH YOUR DAD. I AM SURE TREASURING MY TIME, AND SHIFTING PRIORITIES. I THOUGHT I WAS DOING GOOD, AND I WAS DOING BETTER THAN MOST YOUNG DADDYS, BUT I AM TRYING TO DO EVEN BETTER. AND... MUCH THAT I HAD PREVIOUSLY THOUGHT IMPORTANT, I NO LONGER EVEN THINK ABOUT. > > Please feel free to respond to me directly at my e-amil address, > tgillott@a... Thank you all so much, THOM, PLEASE FEEL FREE TO EMAIL ME DIRECTLY AS WELL. I'M NOT SURE I WAS ANY HELP, SO I'LL LEAVE THAT UP TO YOU. AS I'VE BEEN HAVING SOME TROUBLE WITH MY YAHOO EMAIL, PLEASE FEEL FREE TO EMAIL ME AT rehoboth@... WHICH IS MY 'NORMAL' EMAIL ADDRESS. I ONLY USE YAHOO FOR IMs AND THIS FORUM. PAUL AKA PULA OR PSYCHOPULA OR PULALUPU... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 I can not speak for others, but in our situation, Deborah was Dx with Pd at age 37 in 1999, MSA in 2000, and now we are waiting for an Electric Wheel chair that will hold her head up as well. In may of last year, we were Dancing, traveling and she was a Dept Head at a University. Today, she is retired on disabilty and you know the rest of the story.. " tenacity's man " > >Reply-To: shydrager >To: " shydrager shydrager > >Subject: RE: Life expectancy >Date: Tue, 9 Jul 2002 17:11:12 -0500 > >Greetings Thom, > >I don't know the answer to your question (others on the list probably will >have some responses for you) but I would add a second question to yours and >see if anyone can it when they respond to your question. > >Is there any reason to suspect that people who have onset of symptoms >and/or >are diagnosed with MSA at a later age (as opposed to people who have onset >or symptoms or are diagnosed in their 50s) might progress more rapidly? I >haven't been keeping track of it, but it seems that maybe we hear more >about > " rapid declines " from people who are older when diagnosed. Anyone else have >any comments on this? > >Jerry Cash > > Life expectancy > > >Hello, > >My name is Thom. I live in Atlanta. My father, age 76, has been >diagnosed with Shy-Drager. Although the diagnosis was >reletively recent, he first began to exhibit symptons, most >noticably, postural hypotension and the associated blackouts >and dizzyness, about three years ago. He was diagnosed in >March when he had to be hospitalized due to a rapid >deterioration in his physical condition. In a matter of weeks he >went from being relitively normal to being bed-ridden. He is >extremly weak. He is unable to sit up unassisted, he can not >walk or stand at all. He has lost about 20% of his body weight. >He has had to be catheterized and his kidneys are functioning at >50%. When he is awake he often appears to be catotonic, >staring blankly into space. He is in a nursing home where he is >under a doctor's care, but they are having trouble keeping his >electrolytes balanced, he has recently started vomiting after his >meals and he has developed a MSRA infection in his urinary >tract. > >I have read some of the literature on the various web sites and >they all say that life expectancy is seven to ten years from >diagnosis. Here is my question; given the rapid onset and his >current condition, is seven to ten years a realistic prognosis? It' s >very difficult to imagine that this would continue for that length of >time. I would really appreciate any experiences you might be >willing to share or any insights you might have. > >Please feel free to respond to me directly at my e-amil address, >tgillott@... Thank you all so much, > >Sincerely, >Thom in Atlanta > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Hello , I read a bit about the hereditary ataxias back when we were looking for answers to my brother's symptoms (before he got his dx of MSA) and if I recall correctly some of the hereditary ataxias have an aspect called " anticipation " which essentially means that in succeeding generations the symptom begin earlier and are more severe than in the prior generation. Of course, if Deborah has MSA then this would not explain her early onset and/or rapid progression. Regards, Jerry Cash Life expectancy > > >Hello, > >My name is Thom. I live in Atlanta. My father, age 76, has been >diagnosed with Shy-Drager. Although the diagnosis was >reletively recent, he first began to exhibit symptons, most >noticably, postural hypotension and the associated blackouts >and dizzyness, about three years ago. He was diagnosed in >March when he had to be hospitalized due to a rapid >deterioration in his physical condition. In a matter of weeks he >went from being relitively normal to being bed-ridden. He is >extremly weak. He is unable to sit up unassisted, he can not >walk or stand at all. He has lost about 20% of his body weight. >He has had to be catheterized and his kidneys are functioning at >50%. When he is awake he often appears to be catotonic, >staring blankly into space. He is in a nursing home where he is >under a doctor's care, but they are having trouble keeping his >electrolytes balanced, he has recently started vomiting after his >meals and he has developed a MSRA infection in his urinary >tract. > >I have read some of the literature on the various web sites and >they all say that life expectancy is seven to ten years from >diagnosis. Here is my question; given the rapid onset and his >current condition, is seven to ten years a realistic prognosis? It' s >very difficult to imagine that this would continue for that length of >time. I would really appreciate any experiences you might be >willing to share or any insights you might have. > >Please feel free to respond to me directly at my e-amil address, >tgillott@... Thank you all so much, > >Sincerely, >Thom in Atlanta > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Yes " anticipation " is found in some genetically inherited disorders. Multiple System Atrophy does not have a hereditary pattern. People who onset with mainly ataxia symptoms though may want to be checked for the hereditary ataxias - Spinocerebellar Ataxia type 1, 2, 3 etc. (SCA, SCA2, SCA3....) I think they are up past 12 identified types now but not all have had the gene localized enough to provide testing. Most often people know if their disorder is hereditary since it is seen in each successive generation but in rare cases it gives the appearance of occurring sporadically. Most of the hereditary ataxias have a higher life expectancy than MSA. For more information on Hereditary Ataxia register at this website and read the full article. http://www.geneclinics.org/profiles/ataxias/ Take care, Pam RE: Life expectancy Hello , I read a bit about the hereditary ataxias back when we were looking for answers to my brother's symptoms (before he got his dx of MSA) and if I recall correctly some of the hereditary ataxias have an aspect called " anticipation " which essentially means that in succeeding generations the symptom begin earlier and are more severe than in the prior generation. Of course, if Deborah has MSA then this would not explain her early onset and/or rapid progression. Regards, Jerry Cash Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 I have an intuitive view on the second question posed by Jerry. The older we all get, the more susceptible we are to physical and emotional stressors including such things as physical injuries, surgery, disease, et all. For someone with MSA, the body is already substantially stressed - physically and emotionally - and with older age the capacity to respond is less. Now introduce, another stressor, e.g. UTI, pneumonia, etc, and the combined degradation in our health is exacerbated and or accerlerated. As we age, we see more stressors with less ability to withstand them. If one has MSA, you already have one strike against you and the whole process is speeded up. In other words, we become more vulnerable with MSA and other things take us down faster. Just an intuitive view for what it is worth. PS I also have the feeling from this list, that the long term rate of progression of MSA is varaible in both the plus and minus directions. Comments from anyone? PS Just read Bill comments - I am behind on my digests - which seem quite appropriate. Message: 12 Date: Tue, 9 Jul 2002 17:11:12 -0500 Subject: RE: Life expectancy Greetings Thom, I don't know the answer to your question (others on the list probably will have some responses for you) but I would add a second question to yours and see if anyone can it when they respond to your question. Is there any reason to suspect that people who have onset of symptoms and/or are diagnosed with MSA at a later age (as opposed to people who have onset or symptoms or are diagnosed in their 50s) might progress more rapidly? I haven't been keeping track of it, but it seems that maybe we hear more about " rapid declines " from people who are older when diagnosed. Anyone else have any comments on this? Jerry Cash Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Thanks Jerry, Only her grandfather had Pd. So actually, there is not some real link to her MSA condistion. None of her family going back 3 generations had PD except her grandfather. Thanks for your infomation though. " tenacity's man " > >Reply-To: shydrager >To: " shydrager shydrager > >Subject: RE: Life expectancy >Date: Wed, 10 Jul 2002 08:43:54 -0500 > >Hello , > >I read a bit about the hereditary ataxias back when we were looking for >answers to my brother's symptoms (before he got his dx of MSA) and if I >recall correctly some of the hereditary ataxias have an aspect called > " anticipation " which essentially means that in succeeding generations the >symptom begin earlier and are more severe than in the prior generation. Of >course, if Deborah has MSA then this would not explain her early onset >and/or rapid progression. > >Regards, > >Jerry Cash > > Life expectancy > > > > > >Hello, > > > >My name is Thom. I live in Atlanta. My father, age 76, has been > >diagnosed with Shy-Drager. Although the diagnosis was > >reletively recent, he first began to exhibit symptons, most > >noticably, postural hypotension and the associated blackouts > >and dizzyness, about three years ago. He was diagnosed in > >March when he had to be hospitalized due to a rapid > >deterioration in his physical condition. In a matter of weeks he > >went from being relitively normal to being bed-ridden. He is > >extremly weak. He is unable to sit up unassisted, he can not > >walk or stand at all. He has lost about 20% of his body weight. > >He has had to be catheterized and his kidneys are functioning at > >50%. When he is awake he often appears to be catotonic, > >staring blankly into space. He is in a nursing home where he is > >under a doctor's care, but they are having trouble keeping his > >electrolytes balanced, he has recently started vomiting after his > >meals and he has developed a MSRA infection in his urinary > >tract. > > > >I have read some of the literature on the various web sites and > >they all say that life expectancy is seven to ten years from > >diagnosis. Here is my question; given the rapid onset and his > >current condition, is seven to ten years a realistic prognosis? It' s > >very difficult to imagine that this would continue for that length of > >time. I would really appreciate any experiences you might be > >willing to share or any insights you might have. > > > >Please feel free to respond to me directly at my e-amil address, > >tgillott@... Thank you all so much, > > > >Sincerely, > >Thom in Atlanta > > > > > >If you do not wish to belong to shydrager, you may > >unsubscribe by sending a blank email to > > > >shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 My father was diagnosed about 10 years ago when he was 62 or 63, he had a stroke last year which he never fully recoved from, but before that he was plugging along well and could still get around with just a cane. Since then he has started to decline a bit quicker and has always had a bit harder time recovering from small illnesses, just as you said. The doctors have said his MSA is progressing very slowly so we are very fortunate, so I am not sure if it completely depends on age. He really wasn't in all the great of physical shape when he was diagnosed either, so I don't really know why his progression has been slow while others are quick. The doctors have told us that they don't know why either. > I have an intuitive view on the second question posed by Jerry. > > The older we all get, the more susceptible we are to physical and emotional > stressors including such things as physical injuries, surgery, disease, et > all. For someone with MSA, the body is already substantially stressed - > physically and emotionally - and with older age the capacity to respond is > less. Now introduce, another stressor, e.g. UTI, pneumonia, etc, and the > combined degradation in our health is exacerbated and or accerlerated. As > we age, we see more stressors with less ability to withstand them. If one > has MSA, you already have one strike against you and the whole process is > speeded up. In other words, we become more vulnerable with MSA and other > things take us down faster. > > Just an intuitive view for what it is worth. > > PS I also have the feeling from this list, that the long term rate of > progression of MSA is varaible in both the plus and minus directions. > > Comments from anyone? > > PS Just read Bill comments - I am behind on my digests - which seem quite > appropriate. > > Message: 12 > Date: Tue, 9 Jul 2002 17:11:12 -0500 > From: Jerry Cash > Subject: RE: Life expectancy > > > Greetings Thom, > > > I don't know the answer to your question (others on the list probably will > have some responses for you) but I would add a second question to yours and > see if anyone can it when they respond to your question. > > > Is there any reason to suspect that people who have onset of symptoms and/or > are diagnosed with MSA at a later age (as opposed to people who have onset > or symptoms or are diagnosed in their 50s) might progress more rapidly? I > haven't been keeping track of it, but it seems that maybe we hear more about > " rapid declines " from people who are older when diagnosed. Anyone else have > any comments on this? > > > Jerry Cash > > > > Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.