Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 lou, I'm not sure when my husbands symptoms first appeared, but he was diagnosed when he was about 45 and is currently 51. Beth ---------- lou Reynolds mlreynolds@...> writes: To: shydrager Subject: age of msa people Date: Thu, 04 Apr 2002 07:41:40 -0500 It seems to me that many of the people afflicted with msa are very young, and though there may be some older people--parents and spouses, there are fewer of them. I'd be interested to know 3 things-(1) the age at which symptoms first appeared, (2) the age when diagnosed with msa, and (3) the age at present or at death. Someone wrote in about not wanting to subscribe further to the group, as I think they said they found things too upsetting, or words to that effect. I too felt that way several years ago, just couldn't face what was ahead (I knew what was coming, but didn't want to think about it anymore than I had to).: I canceled my subscription several times. Now I feel that the group is a wonderful source of support, encouragement, practical advice, and just plain company. Lou Reynolds 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 April 4, 2002 Report Share Posted April 4, 2002 lou, I'm not sure when my husbands symptoms first appeared, but he was diagnosed when he was about 45 and is currently 51. Beth ---------- lou Reynolds mlreynolds@...> writes: To: shydrager Subject: age of msa people Date: Thu, 04 Apr 2002 07:41:40 -0500 It seems to me that many of the people afflicted with msa are very young, and though there may be some older people--parents and spouses, there are fewer of them. I'd be interested to know 3 things-(1) the age at which symptoms first appeared, (2) the age when diagnosed with msa, and (3) the age at present or at death. Someone wrote in about not wanting to subscribe further to the group, as I think they said they found things too upsetting, or words to that effect. I too felt that way several years ago, just couldn't face what was ahead (I knew what was coming, but didn't want to think about it anymore than I had to).: I canceled my subscription several times. Now I feel that the group is a wonderful source of support, encouragement, practical advice, and just plain company. Lou Reynolds 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 April 4, 2002 Report Share Posted April 4, 2002 Hi Lou: My husband, Bob, starting having symptoms at age 68, was dx.d at age 69 & now 71...hope this helps. Regards. jerrie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Dr. H. Ray , Ph.D. 49 When symptoms first noticed 51 When Diagnosed with MSA 51 Now, Not dead yet although sometimes... -- age of msa people It seems to me that many of the people afflicted with msa are very young, and though there may be some older people--parents and spouses, there are fewer of them. I'd be interested to know 3 things-(1) the age at which symptoms first appeared, (2) the age when diagnosed with msa, and (3) the age at present or at death.Someone wrote in about not wanting to subscribe further to the group, as I think they said they found things too upsetting, or words to that effect. I too felt that way several years ago, just couldn't face what was ahead (I knew what was coming, but didn't want to think about it anymore than I had to).: I canceled my subscription several times. Now I feel that the group is a wonderful source of support, encouragement, practical advice, and just plain company. Lou ReynoldsIf 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 April 4, 2002 Report Share Posted April 4, 2002 Lou, There is no set pattern for this. The youngest I have heard of a person actually diagnosed as MSA is about 32 and the oldest is about 82. Usually the diagnoses is made in the fifties and first symptoms (often fatigue, clumbsiness or dizziness) are 1-5 years before that. Charlotte was about average, first symptoms at about age 47, dx of PD at age 51, dx changed to MSA at age 55-56 and she died at age 62. In 1995 the average length of time between dx of a movement disorder and death was about 9.5 years. Today with what we know about the disorder, I would hope that Charlotte's 12 years would be more average. But remember that is only an average, 2-20 years is closer to the range. Unfortunately, too many people are still in denial if they unsubscribe for that reason. I joined the PD internet group in 1991 as I am an engineer and wanted to find out what if anything we could do to make Charlotte's life as good as possible. She too got over the initial shock quickly when the Sinemet helped so much in the beginning. However, she also felt devastated when we learned it was MSA and more when she realized how much it would cripple her. That was when our pastor suggested that we go to grief counseling. We worked our way through the first stages and accepted the disorder enough to go out and work out funeral arrangements, legal stuff and medical decisions (like PEG's and trach tubes). After that, we learned to live with it and enjoyed the time we had together. Remember that some people unsubscribe because they can not handle the 40 messages per day we get on the list. Others do not like the chain letters we often get on the list. So there are many reasons to unsubscribe. Too many people do not accept the limits placed on them by the disorder and get stuck in the denial stage - that is the worst possible place to be stuck. MSA DOES place restrictions on you! Most people lose their ability to drive soon after a dx. Most people need a wheelchair within five years (or less) of a dx. Five years is a long time to carry on with a job after dx, but may be possible if you work with computers at home. Charlotte was able to work with the mouse somewhat, as long as ten years after dx of PD - not well enough to do a job however, just play games. If you can accept the limitations and work around them, that is half the battle. I think the reason you see more younger people on the list is that they are more " into " computers. Most of the " older " folks got on the list because their kids (or grandkids) found the list and fixed them up with an old computer to use. Haight, Tim Foley, Bushnell, etc. all worked regularly with computers and are among the youngest members we have, whereas only a few of the " over 50 " members had computer experience " before MSA " (like ) and me). Sorry - are you over 50 yet? Take care, Bill Werre ----------------------------------------------------------- lou Reynolds wrote: > It seems to me that many of the people afflicted with msa are very young, > and though there may be some older people--parents and spouses, there are > fewer of them. I'd be interested to know 3 things-(1) the age at which > symptoms first appeared, (2) the age when diagnosed with msa, and (3) the > age at present or at death. > > Someone wrote in about not wanting to subscribe further to the group, as I > think they said they found things too upsetting, or words to that > effect. I too felt that way several years ago, just couldn't face what was > ahead (I knew what was coming, but didn't want to think about it anymore > than I had to).: I canceled my subscription several times. Now I feel > that the group is a wonderful source of support, encouragement, practical > advice, and just plain company. Lou Reynolds > > 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 April 4, 2002 Report Share Posted April 4, 2002 Lou, I had symptoms I believe since age 42 I have been diagnosed with corticobasal degeneration and Parkinsonism plus and not MSA. I am under the impression though I could be at some time or never I am now 44 years old. I also believe you are talking about me finding things to upsetting. I was talking about my husband and not me. Sorry this was misunderstood. I want to know it all the good, the bad, and the ugly. -- In shydrager@y..., lou Reynolds wrote: > It seems to me that many of the people afflicted with msa are very young, > and though there may be some older people--parents and spouses, there are > fewer of them. I'd be interested to know 3 things-(1) the age at which > symptoms first appeared, (2) the age when diagnosed with msa, and (3) the > age at present or at death. > > Someone wrote in about not wanting to subscribe further to the group, as I > think they said they found things too upsetting, or words to that > effect. I too felt that way several years ago, just couldn't face what was > ahead (I knew what was coming, but didn't want to think about it anymore > than I had to).: I canceled my subscription several times. Now I feel > that the group is a wonderful source of support, encouragement, practical > advice, and just plain company. Lou Reynolds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 My husband is currently almost 70. Diagnosed with PD at 65, MSA at 66. Had symptoms as early as the 1970's. Definitely had symptoms in the 1980's and pronounced by 1990. He is in a power wheel chair, hospital bed, a lift anchor in the ceiling of our home. He can still feed himself and watch a mean ballgame. Marilyn in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 My brother was 51 when he began seeking diagnosis for symptoms of Ataxia. Diagnosed in January 2001 at age 51 with MSA. Will turn 53 this month. In response to the original posting (and Pam, Bill and other feel free to correct me) I am of the impression from all of the information on MSA that age 50 is the most typical age for onset of MSA symptoms. Jerry Cash age of msa people It seems to me that many of the people afflicted with msa are very young, and though there may be some older people--parents and spouses, there are fewer of them. I'd be interested to know 3 things-(1) the age at which symptoms first appeared, (2) the age when diagnosed with msa, and (3) the age at present or at death.Someone wrote in about not wanting to subscribe further to the group, as I think they said they found things too upsetting, or words to that effect. I too felt that way several years ago, just couldn't face what was ahead (I knew what was coming, but didn't want to think about it anymore than I had to).: I canceled my subscription several times. Now I feel that the group is a wonderful source of support, encouragement, practical advice, and just plain company. Lou ReynoldsIf 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 April 4, 2002 Report Share Posted April 4, 2002 What is the difference between Parkinson's Plus and MSA? I was told Leo had Parkinson's Plus about a year afer Parkinson's diagnosis. Ginger Re: age of msa people > Lou, > I had symptoms I believe since age 42 > I have been diagnosed with corticobasal degeneration and Parkinsonism > plus and not MSA. I am under the impression though I could be at some > time or never > I am now 44 years old. > I also believe you are talking about me finding things to upsetting. > I was talking about my husband and not me. Sorry this was > misunderstood. I want to know it all the good, the bad, and the ugly. > > -- In shydrager@y..., lou Reynolds wrote: > > It seems to me that many of the people afflicted with msa are very > young, > > and though there may be some older people--parents and spouses, > there are > > fewer of them. I'd be interested to know 3 things-(1) the age at > which > > symptoms first appeared, (2) the age when diagnosed with msa, and > (3) the > > age at present or at death. > > > > Someone wrote in about not wanting to subscribe further to the > group, as I > > think they said they found things too upsetting, or words to that > > effect. I too felt that way several years ago, just couldn't face > what was > > ahead (I knew what was coming, but didn't want to think about it > anymore > > than I had to).: I canceled my subscription several times. Now I > feel > > that the group is a wonderful source of support, encouragement, > practical > > advice, and just plain company. Lou Reynolds > > > 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 April 4, 2002 Report Share Posted April 4, 2002 Ginger, PD+ is a very loose term with no real definition. Generally it means any disorder with a Parkinsonian symptom (dopamine reduction). This includes many brain disorders including MSA, OPCA, CBGD, PSP and others (possibly even Altzheimers). Take care, Bill Werre ------------------------------------- Virginia Willmann wrote: > What is the difference between Parkinson's Plus and MSA? I was told Leo had > Parkinson's Plus about a year afer Parkinson's diagnosis. Ginger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Ginger, PD+ is a very loose term with no real definition. Generally it means any disorder with a Parkinsonian symptom (dopamine reduction). This includes many brain disorders including MSA, OPCA, CBGD, PSP and others (possibly even Altzheimers). Take care, Bill Werre ------------------------------------- Virginia Willmann wrote: > What is the difference between Parkinson's Plus and MSA? I was told Leo had > Parkinson's Plus about a year afer Parkinson's diagnosis. Ginger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Lou: Terry had first symptoms at 67 and Dxed w PD at 68, Dxed w MSA/SND at 73, currently 75. Message: 1 Date: Thu, 04 Apr 2002 07:41:40 -0500 Subject: age of msa people It seems to me that many of the people afflicted with msa are very young, and though there may be some older people--parents and spouses, there are fewer of them. I'd be interested to know 3 things-(1) the age at which symptoms first appeared, (2) the age when diagnosed with msa, and (3) the age at present or at death. Someone wrote in about not wanting to subscribe further to the group, as I think they said they found things too upsetting, or words to that effect. I too felt that way several years ago, just couldn't face what was ahead (I knew what was coming, but didn't want to think about it anymore than I had to).: I canceled my subscription several times. Now I feel that the group is a wonderful source of support, encouragement, practical advice, and just plain company. Lou Reynolds Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Thanks Bill, I 'm not up on all the correct catagories. Jankovic gave us a print out with heading Parkinson's Plus, under that MSA. under that Shy-Drager, O something and SND in '94. When we saw him in 2000 the print out had MSA on top and Shy-Drager, O whatever and SND under that. I think they've changed some of the terms too. Ginger Re: Re: age of msa people > Ginger, > > PD+ is a very loose term with no real definition. Generally it means any > disorder with a Parkinsonian symptom (dopamine reduction). This includes many > brain disorders including MSA, OPCA, CBGD, PSP and others (possibly even > Altzheimers). > > Take care, Bill Werre > > ------------------------------------- > > Virginia Willmann wrote: > > > What is the difference between Parkinson's Plus and MSA? I was told Leo had > > Parkinson's Plus about a year afer Parkinson's diagnosis. Ginger > > > 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 April 4, 2002 Report Share Posted April 4, 2002 Thanks Bill, I 'm not up on all the correct catagories. Jankovic gave us a print out with heading Parkinson's Plus, under that MSA. under that Shy-Drager, O something and SND in '94. When we saw him in 2000 the print out had MSA on top and Shy-Drager, O whatever and SND under that. I think they've changed some of the terms too. Ginger Re: Re: age of msa people > Ginger, > > PD+ is a very loose term with no real definition. Generally it means any > disorder with a Parkinsonian symptom (dopamine reduction). This includes many > brain disorders including MSA, OPCA, CBGD, PSP and others (possibly even > Altzheimers). > > Take care, Bill Werre > > ------------------------------------- > > Virginia Willmann wrote: > > > What is the difference between Parkinson's Plus and MSA? I was told Leo had > > Parkinson's Plus about a year afer Parkinson's diagnosis. Ginger > > > 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 April 4, 2002 Report Share Posted April 4, 2002 Thanks Bill, I 'm not up on all the correct catagories. Jankovic gave us a print out with heading Parkinson's Plus, under that MSA. under that Shy-Drager, O something and SND in '94. When we saw him in 2000 the print out had MSA on top and Shy-Drager, O whatever and SND under that. I think they've changed some of the terms too. Ginger Re: Re: age of msa people > Ginger, > > PD+ is a very loose term with no real definition. Generally it means any > disorder with a Parkinsonian symptom (dopamine reduction). This includes many > brain disorders including MSA, OPCA, CBGD, PSP and others (possibly even > Altzheimers). > > Take care, Bill Werre > > ------------------------------------- > > Virginia Willmann wrote: > > > What is the difference between Parkinson's Plus and MSA? I was told Leo had > > Parkinson's Plus about a year afer Parkinson's diagnosis. Ginger > > > 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 April 4, 2002 Report Share Posted April 4, 2002 I keep year of diagnosis and year of birth on my database. According to what nearly 400 people have told me who have answered my survey over the past several years, I've figured out the average age at diagnosis for this list is 60. You often see statistics in medical literature which states the average age of onset is 55... so we aren't too far off. I don't keep any data on age symptoms were first noticed. The breakdown for our list for age at diagnosis: 1 person was diagnosed in their teens 2 people were diagnosed in their 20's 19 people were diagnosed in their 30's 50 people were diagnosed in their 40's 103 people were diagnosed in their 50's 113 people were diagnosed in their 60's 77 people were diagnosed in their 70's 12 people were diagnosed in their 80's I'd rather not post any statistics about people who are now deceased as not many people tell me that information, most leave the list quietly so we do not have accurate data. Hugs, Pam Re: age of msa people > Lou, > > There is no set pattern for this. The youngest I have heard of a person > actually diagnosed as MSA is about 32 and the oldest is about 82. Usually the > diagnoses is made in the fifties and first symptoms (often fatigue, clumbsiness > or dizziness) are 1-5 years before that. Charlotte was about average, first > symptoms at about age 47, dx of PD at age 51, dx changed to MSA at age 55-56 > and she died at age 62. In 1995 the average length of time between dx of a > movement disorder and death was about 9.5 years. Today with what we know about > the disorder, I would hope that Charlotte's 12 years would be more average. > But remember that is only an average, 2-20 years is closer to the range. > > Unfortunately, too many people are still in denial if they unsubscribe for that > reason. I joined the PD internet group in 1991 as I am an engineer and wanted > to find out what if anything we could do to make Charlotte's life as good as > possible. She too got over the initial shock quickly when the Sinemet helped > so much in the beginning. However, she also felt devastated when we learned it > was MSA and more when she realized how much it would cripple her. That was > when our pastor suggested that we go to grief counseling. We worked our way > through the first stages and accepted the disorder enough to go out and work > out funeral arrangements, legal stuff and medical decisions (like PEG's and > trach tubes). After that, we learned to live with it and enjoyed the time we > had together. Remember that some people unsubscribe because they can not > handle the 40 messages per day we get on the list. Others do not like the > chain letters we often get on the list. So there are many reasons to > unsubscribe. > > Too many people do not accept the limits placed on them by the disorder and get > stuck in the denial stage - that is the worst possible place to be stuck. MSA > DOES place restrictions on you! Most people lose their ability to drive soon > after a dx. Most people need a wheelchair within five years (or less) of a > dx. Five years is a long time to carry on with a job after dx, but may be > possible if you work with computers at home. Charlotte was able to work with > the mouse somewhat, as long as ten years after dx of PD - not well enough to do > a job however, just play games. If you can accept the limitations and work > around them, that is half the battle. > > I think the reason you see more younger people on the list is that they are > more " into " computers. Most of the " older " folks got on the list because their > kids (or grandkids) found the list and fixed them up with an old computer to > use. Haight, Tim Foley, Bushnell, etc. all worked regularly with > computers and are among the youngest members we have, whereas only a few of the > " over 50 " members had computer experience " before MSA " (like ) and me). > Sorry - are you over 50 yet? > > Take care, Bill Werre > > ----------------------------------------------------------- > > lou Reynolds wrote: > > > It seems to me that many of the people afflicted with msa are very young, > > and though there may be some older people--parents and spouses, there are > > fewer of them. I'd be interested to know 3 things-(1) the age at which > > symptoms first appeared, (2) the age when diagnosed with msa, and (3) the > > age at present or at death. > > > > Someone wrote in about not wanting to subscribe further to the group, as I > > think they said they found things too upsetting, or words to that > > effect. I too felt that way several years ago, just couldn't face what was > > ahead (I knew what was coming, but didn't want to think about it anymore > > than I had to).: I canceled my subscription several times. Now I feel > > that the group is a wonderful source of support, encouragement, practical > > advice, and just plain company. Lou Reynolds > > > > 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 April 4, 2002 Report Share Posted April 4, 2002 I keep year of diagnosis and year of birth on my database. According to what nearly 400 people have told me who have answered my survey over the past several years, I've figured out the average age at diagnosis for this list is 60. You often see statistics in medical literature which states the average age of onset is 55... so we aren't too far off. I don't keep any data on age symptoms were first noticed. The breakdown for our list for age at diagnosis: 1 person was diagnosed in their teens 2 people were diagnosed in their 20's 19 people were diagnosed in their 30's 50 people were diagnosed in their 40's 103 people were diagnosed in their 50's 113 people were diagnosed in their 60's 77 people were diagnosed in their 70's 12 people were diagnosed in their 80's I'd rather not post any statistics about people who are now deceased as not many people tell me that information, most leave the list quietly so we do not have accurate data. Hugs, Pam Re: age of msa people > Lou, > > There is no set pattern for this. The youngest I have heard of a person > actually diagnosed as MSA is about 32 and the oldest is about 82. Usually the > diagnoses is made in the fifties and first symptoms (often fatigue, clumbsiness > or dizziness) are 1-5 years before that. Charlotte was about average, first > symptoms at about age 47, dx of PD at age 51, dx changed to MSA at age 55-56 > and she died at age 62. In 1995 the average length of time between dx of a > movement disorder and death was about 9.5 years. Today with what we know about > the disorder, I would hope that Charlotte's 12 years would be more average. > But remember that is only an average, 2-20 years is closer to the range. > > Unfortunately, too many people are still in denial if they unsubscribe for that > reason. I joined the PD internet group in 1991 as I am an engineer and wanted > to find out what if anything we could do to make Charlotte's life as good as > possible. She too got over the initial shock quickly when the Sinemet helped > so much in the beginning. However, she also felt devastated when we learned it > was MSA and more when she realized how much it would cripple her. That was > when our pastor suggested that we go to grief counseling. We worked our way > through the first stages and accepted the disorder enough to go out and work > out funeral arrangements, legal stuff and medical decisions (like PEG's and > trach tubes). After that, we learned to live with it and enjoyed the time we > had together. Remember that some people unsubscribe because they can not > handle the 40 messages per day we get on the list. Others do not like the > chain letters we often get on the list. So there are many reasons to > unsubscribe. > > Too many people do not accept the limits placed on them by the disorder and get > stuck in the denial stage - that is the worst possible place to be stuck. MSA > DOES place restrictions on you! Most people lose their ability to drive soon > after a dx. Most people need a wheelchair within five years (or less) of a > dx. Five years is a long time to carry on with a job after dx, but may be > possible if you work with computers at home. Charlotte was able to work with > the mouse somewhat, as long as ten years after dx of PD - not well enough to do > a job however, just play games. If you can accept the limitations and work > around them, that is half the battle. > > I think the reason you see more younger people on the list is that they are > more " into " computers. Most of the " older " folks got on the list because their > kids (or grandkids) found the list and fixed them up with an old computer to > use. Haight, Tim Foley, Bushnell, etc. all worked regularly with > computers and are among the youngest members we have, whereas only a few of the > " over 50 " members had computer experience " before MSA " (like ) and me). > Sorry - are you over 50 yet? > > Take care, Bill Werre > > ----------------------------------------------------------- > > lou Reynolds wrote: > > > It seems to me that many of the people afflicted with msa are very young, > > and though there may be some older people--parents and spouses, there are > > fewer of them. I'd be interested to know 3 things-(1) the age at which > > symptoms first appeared, (2) the age when diagnosed with msa, and (3) the > > age at present or at death. > > > > Someone wrote in about not wanting to subscribe further to the group, as I > > think they said they found things too upsetting, or words to that > > effect. I too felt that way several years ago, just couldn't face what was > > ahead (I knew what was coming, but didn't want to think about it anymore > > than I had to).: I canceled my subscription several times. Now I feel > > that the group is a wonderful source of support, encouragement, practical > > advice, and just plain company. Lou Reynolds > > > > 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 April 4, 2002 Report Share Posted April 4, 2002 I keep year of diagnosis and year of birth on my database. According to what nearly 400 people have told me who have answered my survey over the past several years, I've figured out the average age at diagnosis for this list is 60. You often see statistics in medical literature which states the average age of onset is 55... so we aren't too far off. I don't keep any data on age symptoms were first noticed. The breakdown for our list for age at diagnosis: 1 person was diagnosed in their teens 2 people were diagnosed in their 20's 19 people were diagnosed in their 30's 50 people were diagnosed in their 40's 103 people were diagnosed in their 50's 113 people were diagnosed in their 60's 77 people were diagnosed in their 70's 12 people were diagnosed in their 80's I'd rather not post any statistics about people who are now deceased as not many people tell me that information, most leave the list quietly so we do not have accurate data. Hugs, Pam Re: age of msa people > Lou, > > There is no set pattern for this. The youngest I have heard of a person > actually diagnosed as MSA is about 32 and the oldest is about 82. Usually the > diagnoses is made in the fifties and first symptoms (often fatigue, clumbsiness > or dizziness) are 1-5 years before that. Charlotte was about average, first > symptoms at about age 47, dx of PD at age 51, dx changed to MSA at age 55-56 > and she died at age 62. In 1995 the average length of time between dx of a > movement disorder and death was about 9.5 years. Today with what we know about > the disorder, I would hope that Charlotte's 12 years would be more average. > But remember that is only an average, 2-20 years is closer to the range. > > Unfortunately, too many people are still in denial if they unsubscribe for that > reason. I joined the PD internet group in 1991 as I am an engineer and wanted > to find out what if anything we could do to make Charlotte's life as good as > possible. She too got over the initial shock quickly when the Sinemet helped > so much in the beginning. However, she also felt devastated when we learned it > was MSA and more when she realized how much it would cripple her. That was > when our pastor suggested that we go to grief counseling. We worked our way > through the first stages and accepted the disorder enough to go out and work > out funeral arrangements, legal stuff and medical decisions (like PEG's and > trach tubes). After that, we learned to live with it and enjoyed the time we > had together. Remember that some people unsubscribe because they can not > handle the 40 messages per day we get on the list. Others do not like the > chain letters we often get on the list. So there are many reasons to > unsubscribe. > > Too many people do not accept the limits placed on them by the disorder and get > stuck in the denial stage - that is the worst possible place to be stuck. MSA > DOES place restrictions on you! Most people lose their ability to drive soon > after a dx. Most people need a wheelchair within five years (or less) of a > dx. Five years is a long time to carry on with a job after dx, but may be > possible if you work with computers at home. Charlotte was able to work with > the mouse somewhat, as long as ten years after dx of PD - not well enough to do > a job however, just play games. If you can accept the limitations and work > around them, that is half the battle. > > I think the reason you see more younger people on the list is that they are > more " into " computers. Most of the " older " folks got on the list because their > kids (or grandkids) found the list and fixed them up with an old computer to > use. Haight, Tim Foley, Bushnell, etc. all worked regularly with > computers and are among the youngest members we have, whereas only a few of the > " over 50 " members had computer experience " before MSA " (like ) and me). > Sorry - are you over 50 yet? > > Take care, Bill Werre > > ----------------------------------------------------------- > > lou Reynolds wrote: > > > It seems to me that many of the people afflicted with msa are very young, > > and though there may be some older people--parents and spouses, there are > > fewer of them. I'd be interested to know 3 things-(1) the age at which > > symptoms first appeared, (2) the age when diagnosed with msa, and (3) the > > age at present or at death. > > > > Someone wrote in about not wanting to subscribe further to the group, as I > > think they said they found things too upsetting, or words to that > > effect. I too felt that way several years ago, just couldn't face what was > > ahead (I knew what was coming, but didn't want to think about it anymore > > than I had to).: I canceled my subscription several times. Now I feel > > that the group is a wonderful source of support, encouragement, practical > > advice, and just plain company. Lou Reynolds > > > > 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 April 4, 2002 Report Share Posted April 4, 2002 How about those of us who who are surviving mates or children of deceased patients who would be happy to tell you the facts of our loved ones illness so the list will be at least a bit more conclusive? Barb -- "It is safe to tell the pure in heart that they shall see God, for only the pure in heart want to." --C. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 How about those of us who who are surviving mates or children of deceased patients who would be happy to tell you the facts of our loved ones illness so the list will be at least a bit more conclusive? Barb -- "It is safe to tell the pure in heart that they shall see God, for only the pure in heart want to." --C. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 How about those of us who who are surviving mates or children of deceased patients who would be happy to tell you the facts of our loved ones illness so the list will be at least a bit more conclusive? Barb -- "It is safe to tell the pure in heart that they shall see God, for only the pure in heart want to." --C. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Barb, I'm not sure that would be more accurate than the 1995 study as the study had autopsy reports to confirm MSA. Many people here don't have autopsy reports. Some of our examples of long term survival have been other disorders, so the 2-20 years is probably as accurate as we can get at this time. If I had not taken Charlotte to the hospital ER in late 1998, she would have died at 9 years, so knowledge did gain her 3 years. The PEG and exercise definitely helped her during those three years. But your Ralph did not have the PEG more than a few months - did he? I remember us chatting on IM and you having to run as he spilled chili or a milkshake on the new rug ) Then later you were at the rehab center so much. Take care, Bill ------------------------- Barb wrote: How about those of us who who are surviving mates or children of deceased patients who would be happy to tell you the facts of our loved ones illness so the list will be at least a bit more conclusive? Barb -- "It is safe to tell the pure in heart that they shall see God, for only the pure in heart want to." --C. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Greetings Bill & Everyone! Bill, you wondered: > Sorry - are you over 50 yet? Feels like it! My father, in his mid 70s has more get up and go than I do. I MUST use a walking staff to stay upright, he would have to steady me! Go figure. But, yes. I have worked with computers for quite a long time. I started in 1977. Fell in love with them and made that my career choice. I've worked with many different computer systems, including an IBM 360-158/AP, and a IBM 3090 mainframe, UNIX systems, OpenVMS systems, numerous iterations of Windows, MS-DOS, CP/M, an IBM Series/1, Data General systems... and the list goes on. I figured out one time that I have worked with over 20 operating systems. Further I've learned numerous computer languages. (A German major does tend to learn a LOT about how languages are constructed). I've managed mission critical systems, then as someone working for a vendor, I sold and delivered over 4 to 10 million in consulting business alone. The hardware tended to top 20 million per year. About five years ago, I was forced to find another job. The group I worked for went VERY squirrelly .. though 2 of us brought 4 - 6 million in revenue into the company, they thought it wasn't good business. Excuse me??? So, I started with the Mission Critical support group. Fortunate, that was a work from home job. If not, I would have gone on disability a long time ago. A God-incidence, perhaps? To the other question, age of diagnosis ... not MSA, at this point. About 14 years ago was diagnosed with severe obstructive sleep apnea. Then 3-4 years ago, developed serious problems with balance and tremors. After a year or so, this led to my current diagnosis of Primary Cerebellar Degeneration. Right now we are in the hover and wait stage. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 My mother Joyce Scaduto was diagnosed with PD at 67, rediagnosed with MSA/SND at 69 and she died at 71. She had been diagnosed with Epstein-Barr about 5 or 6 years before the PD diagnosis and then had a frozen shoulder about two years prior to the PD diagnosis. Clear neuro signs started about one year before diagnosis (though her speech was slurred slightly for about 2 years prior to PD diagnosis). I guess what I am getting at here, is that it is difficult to pinpoint when the symptoms first appeared. I know that extreme fatigue (Epstein-Barr) and frozen shoulder often predate clear neuro symptoms. I would say that my mother clearly showed some signs at age 66. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 thank u. that would be of some help for me as a patient. I know i am progressing and I am not the way I use to be, ect. However, I would like to know the feelings of the teens and young adults of parents and the spouses as well. I understand everyone is different, but there are commonalties among us all. nancy m. Barb wrote: > > How about those of us who who are surviving mates or children of > deceased patients who would be happy to tell you the facts of our > loved ones illness so the list will be at least a bit more conclusive? > > Barb > [image] > > -- > " It is safe to tell the pure in heart that they shall see God, for > only the > pure in heart want to. " --C. S. > Quote Link to comment Share on other sites More sharing options...
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