Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 Mamie, Speech and swallowing use the same muscles, so they MUST keep in shape. Swallowing prpblems are the biggest killer of MSA patients. as with ALL muscles, when you have MSA, you must " Use it or lose it " . I hope to meet you at the Moller's on March 17th. Take care, Bill Werre ----------------------------------------------------------------------- MBur234@... wrote: > Bill, > > I'll look for the message about the upcoming meeting. Last time, I printed > and kept the directions to the Moller's so I'm all set with that. > > I really respect your experience and knowledge regarding the PEG, Thanks > for the advice. And Jim has had physical as well as speech therapy. He is > doing very well keeping on with the physical exercises but has gotten lax > with the speech exercises--how bad is that? Hope to meet you soon. > > Blessings, > Mamie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 Mamie, Speech and swallowing use the same muscles, so they MUST keep in shape. Swallowing prpblems are the biggest killer of MSA patients. as with ALL muscles, when you have MSA, you must " Use it or lose it " . I hope to meet you at the Moller's on March 17th. Take care, Bill Werre ----------------------------------------------------------------------- MBur234@... wrote: > Bill, > > I'll look for the message about the upcoming meeting. Last time, I printed > and kept the directions to the Moller's so I'm all set with that. > > I really respect your experience and knowledge regarding the PEG, Thanks > for the advice. And Jim has had physical as well as speech therapy. He is > doing very well keeping on with the physical exercises but has gotten lax > with the speech exercises--how bad is that? Hope to meet you soon. > > Blessings, > Mamie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Hello, I'm not sure if you will remember me from the shy drager board or not. My husband's name was Ken. He passed away on March 6th. He went so fast I don't want to post this to the main board for fear of scarring everyone . In 3 weeks he went from ok to death. First he couldn't empty his stomach. Remember I asked about that and someone , maybe you said Aussie Anne used a device to help with that? Then he could draw in enough oxygen because the muscles weren't working properly. Then he couldn't void on his own, so a catherater was put in, but then that too had to be irrigated every 4 hours. By this time he was in a facility, because he needed too much skilled care. He became so weak but still tried to do his exercises so he could come home. The night before he died I finally realized just how sick he was, but I still didn't think death was coming so soon. I thought after the bladder infection was cleared up he would be better. I didn't realize that all his systems were just shutting down. The heart was the last to go. His death certificate says the cause of death was 1. cardiad arrethrymia (sp), and 2. neuromuscular dystrophy. From reading from the shy drager board when I could, I thought Ken would first go in a wheel chair, then a feeding tube, then who knows...... Thanks for listening, and answering questions when I asked. I wrote this to you because, like I said, I didn't want to plant the fear that anyone here could go so quickly. He was admitted to the hospital with chest pains, however his heart had been checked from a-z and his heart was strong , absolutely nothing wrong with it. No UTI, no nothing.....all tests were normal....19 days later he died. Sincerely Betty Parrott Clearwater, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Hello, I'm not sure if you will remember me from the shy drager board or not. My husband's name was Ken. He passed away on March 6th. He went so fast I don't want to post this to the main board for fear of scarring everyone . In 3 weeks he went from ok to death. First he couldn't empty his stomach. Remember I asked about that and someone , maybe you said Aussie Anne used a device to help with that? Then he could draw in enough oxygen because the muscles weren't working properly. Then he couldn't void on his own, so a catherater was put in, but then that too had to be irrigated every 4 hours. By this time he was in a facility, because he needed too much skilled care. He became so weak but still tried to do his exercises so he could come home. The night before he died I finally realized just how sick he was, but I still didn't think death was coming so soon. I thought after the bladder infection was cleared up he would be better. I didn't realize that all his systems were just shutting down. The heart was the last to go. His death certificate says the cause of death was 1. cardiad arrethrymia (sp), and 2. neuromuscular dystrophy. From reading from the shy drager board when I could, I thought Ken would first go in a wheel chair, then a feeding tube, then who knows...... Thanks for listening, and answering questions when I asked. I wrote this to you because, like I said, I didn't want to plant the fear that anyone here could go so quickly. He was admitted to the hospital with chest pains, however his heart had been checked from a-z and his heart was strong , absolutely nothing wrong with it. No UTI, no nothing.....all tests were normal....19 days later he died. Sincerely Betty Parrott Clearwater, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Hello, I'm not sure if you will remember me from the shy drager board or not. My husband's name was Ken. He passed away on March 6th. He went so fast I don't want to post this to the main board for fear of scarring everyone . In 3 weeks he went from ok to death. First he couldn't empty his stomach. Remember I asked about that and someone , maybe you said Aussie Anne used a device to help with that? Then he could draw in enough oxygen because the muscles weren't working properly. Then he couldn't void on his own, so a catherater was put in, but then that too had to be irrigated every 4 hours. By this time he was in a facility, because he needed too much skilled care. He became so weak but still tried to do his exercises so he could come home. The night before he died I finally realized just how sick he was, but I still didn't think death was coming so soon. I thought after the bladder infection was cleared up he would be better. I didn't realize that all his systems were just shutting down. The heart was the last to go. His death certificate says the cause of death was 1. cardiad arrethrymia (sp), and 2. neuromuscular dystrophy. From reading from the shy drager board when I could, I thought Ken would first go in a wheel chair, then a feeding tube, then who knows...... Thanks for listening, and answering questions when I asked. I wrote this to you because, like I said, I didn't want to plant the fear that anyone here could go so quickly. He was admitted to the hospital with chest pains, however his heart had been checked from a-z and his heart was strong , absolutely nothing wrong with it. No UTI, no nothing.....all tests were normal....19 days later he died. Sincerely Betty Parrott Clearwater, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Betty, I'm so sorry to hear of your loss. This disease is devestating, and it's difficult to lose your loved one no matter how quickly or slowly it happens. Our thoughts and prayers are with you and your family. Carol & Rob Lexington, MA > Hello, > > I'm not sure if you will remember me from the shy drager board or not. My > husband's name was Ken. > > He passed away on March 6th. He went so fast I don't want to post this to > the main board for fear of scarring everyone . In 3 weeks he went from ok to > death. First he couldn't empty his stomach. Remember I asked about that and > someone , maybe you said Aussie Anne used a device to help with that? > > Then he could draw in enough oxygen because the muscles weren't working > properly. Then he couldn't void on his own, so a catherater was put in, but > then that too had to be irrigated every 4 hours. By this time he was in a > facility, because he needed too much skilled care. He became so weak but > still tried to do his exercises so he could come home. > > The night before he died I finally realized just how sick he was, but I still > didn't think death was coming so soon. I thought after the bladder infection > was cleared up he would be better. I didn't realize that all his systems > were just shutting down. The heart was the last to go. His death > certificate says the cause of death was 1. cardiad arrethrymia (sp), and 2. > neuromuscular dystrophy. > > From reading from the shy drager board when I could, I thought Ken would > first go in a wheel chair, then a feeding tube, then who knows...... > > Thanks for listening, and answering questions when I asked. I wrote this to > you because, like I said, I didn't want to plant the fear that anyone here > could go so quickly. He was admitted to the hospital with chest pains, > however his heart had been checked from a-z and his heart was strong , > absolutely nothing wrong with it. No UTI, no nothing.....all tests were > normal....19 days later he died. > > Sincerely > Betty Parrott > Clearwater, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Betty, I am sorry to hear of your loss. May God give you strength at this time. Bless you and your family. Jean (phx) Quote Link to comment Share on other sites More sharing options...
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