Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Kathy, We are all sorry that you must be here, but everyone will be glad to be of assistance to you. Remember that we are patients or caregivers and not Drs. I, like you, have learned a lot from these folks, but my sons remind me every day that anyone can write anything on the internet. I have learned that symptons, that my husband had over a period of maybe 15 years, are all symptoms of SDS/MSA, but no one was able to put it all together until 1998. Best wishes to you. I will be happy to answer publicily or privately about our experiences, as long as you know that we are just as you looking for answers. I have also stopped working to be with my husband. Marilyn in TN ---------- > >To: shydrageregroups >Subject: msa >Date: Tue, Dec 12, 2000, 9:47 PM > >Hello, my name is Kathy. MY husband was diagnosed with shy-drager this year. >He has a trach, due to vocal cord paralysis, indewelling foley cath, and now >walks with assistance. He has problems turning over in bed, can,t get out of >a chair without help, and has blackouts. I really don't know what to expect. >what we have learned has been from the internet. I made the decision to quit >work and stay home with him. I really feel that I need to spend as much time >with him as I can. I was pleased to find this support group, it helps to >know someone really knows what we are going through. >thanks kathy >___________________________________________________________________________ __________ > >Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Hi Kathy, Welcome to the group, although we're sorry that you have a reason to be here. My husband Rob, now age 54, was diagnosed with Shy-Drager Syndrome almost 3 years age. He has been fortunate that his symptoms are fairly well controlled by medication, although over the past few weeks he seems to be slipping a little. I, too, decided to " retire " (at age 50) from my job to spend more time with my husband. I'm so glad I did! Since Rob is still able to do many things, we are doing lots of traveling and are really enjoying our time together. You will find lots of helpful information and support here. Please chime in with a question or comment at any time. Happy holidays, Carol & Rob (writing from Lexington, MA, where it is COLD this morning!) > Hello, my name is Kathy. MY husband was diagnosed with shy-drager this year. > He has a trach, due to vocal cord paralysis, indewelling foley cath, and now > walks with assistance. He has problems turning over in bed, can,t get out of > a chair without help, and has blackouts. I really don't know what to expect. > what we have learned has been from the internet. I made the decision to quit > work and stay home with him. I really feel that I need to spend as much time > with him as I can. I was pleased to find this support group, it helps to > know someone really knows what we are going through. > thanks kathy > ______________________________________________________________________ _______________ > Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Carol, Did you have to send that cold weather down here to the Washington, DC area? Seems to be in the low 20's from here to Halifax this morning. Usually we don't get weather like this until after Christmas (when the politicians go home for Christmas ) My experience is that MSA moved fairly rapidly for the first seven years (no symptoms to wheelchairbound). However, since then exercise has done Charlotte a lot of good. I am sorry that her first neurologists did not tell her that it could help. They told her it would not stop the disorder which may be true, but exercise does slow the crippling. Most of our long time patients agree on this. Ask Anne! By my count she ought to be coming up on 22 years now. Hey Anne, should I come over and adjust the nuts and bolts holding you together? Take care, Bill and Charlotte ------------------------------------------------------------- Carol Langer wrote: > Hi Kathy, > > Welcome to the group, although we're sorry that you have a reason to > be here. My husband Rob, now age 54, was diagnosed with Shy-Drager > Syndrome almost 3 years age. He has been fortunate that his symptoms > are fairly well controlled by medication, although over the past few > weeks he seems to be slipping a little. I, too, decided to " retire " > (at age 50) from my job to spend more time with my husband. I'm so > glad I did! Since Rob is still able to do many things, we are doing > lots of traveling and are really enjoying our time together. > > You will find lots of helpful information and support here. Please > chime in with a question or comment at any time. > > Happy holidays, > > Carol & Rob > (writing from Lexington, MA, where it is COLD this morning!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Carol, Don't let Rob get away with that. He can do range of motion exercises without standing. Charlotte's hamstrings need to be stretched daily. Take care, Bill and Charlotte ---------------------------------------------------------------- Carol Langer wrote: > Bill, > > Actually, Rob hasn't been getting as much exercise as usual recently > because he's been feeling lightheaded. I giving us BOTH until after > the holidays, then we have to get serious about getting into an > everyday routine. I did some work in the yard yesterday (before the > wind brought in the cold weather) and I'm now feeling very stiff. > Boy, am I out of shape! Anyway, I couldn't agree more about the " use > it or lose it " saying - for patients and caregivers (and everyone > else, for that matter!) > > Stay warm! > > Carol & Rob > > > > > > > Hi Kathy, > > > > > > Welcome to the group, although we're sorry that you have a reason > to > > > be here. My husband Rob, now age 54, was diagnosed with Shy- > Drager > > > Syndrome almost 3 years age. He has been fortunate that his > symptoms > > > are fairly well controlled by medication, although over the past > few > > > weeks he seems to be slipping a little. I, too, decided > to " retire " > > > (at age 50) from my job to spend more time with my husband. I'm > so > > > glad I did! Since Rob is still able to do many things, we are > doing > > > lots of traveling and are really enjoying our time together. > > > > > > You will find lots of helpful information and support here. > Please > > > chime in with a question or comment at any time. > > > > > > Happy holidays, > > > > > > Carol & Rob > > > (writing from Lexington, MA, where it is COLD this morning!) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Kathy, Your regular doctor can check for infection, it sounds to me like he may have some sort of infection. Signs of infection are: Sudden change for the worse. Confusion or sudden loss of memory Any temperature above 98.6 as most MSA patients run " normal temperatures of around 96.6 or lower. After they clear up any infection your regular doctor can also order physical therapy. Take care, Bill and Charlotte kathy thompson wrote: > Hi everyone, hope you and your families are doing well. Dave is having a > very bad day, he can barely walk with my help. I don't know if he will > bounce back or if the disease process is worsening. This last week has been > the worst. I wish I knew what to do to help him get better. Maybe we will > get an appointment with Mayo soon. We see our regular doctor on Tuesday, > maybe he can rush things up. I'm afraid if we don't go soon he won't be able > to go at all. take care, Kathy > ________________________________________________________________________________\ _____ > Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Bill, Good point! I'll start bugging him tomorrow! Carol > > > > > > > Hi Kathy, > > > > > > > > Welcome to the group, although we're sorry that you have a reason > > to > > > > be here. My husband Rob, now age 54, was diagnosed with Shy- > > Drager > > > > Syndrome almost 3 years age. He has been fortunate that his > > symptoms > > > > are fairly well controlled by medication, although over the past > > few > > > > weeks he seems to be slipping a little. I, too, decided > > to " retire " > > > > (at age 50) from my job to spend more time with my husband. I'm > > so > > > > glad I did! Since Rob is still able to do many things, we are > > doing > > > > lots of traveling and are really enjoying our time together. > > > > > > > > You will find lots of helpful information and support here. > > Please > > > > chime in with a question or comment at any time. > > > > > > > > Happy holidays, > > > > > > > > Carol & Rob > > > > (writing from Lexington, MA, where it is COLD this morning!) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2000 Report Share Posted December 16, 2000 Good news, Kathy. Debbie Debbie White dwhite@... > MSA > > > Hi everyone, hope you all are well. I have some good news, Dave can walk > today with his cane without help from me. He has been awake all > day watching > ball games. His appetite has been better. I am so proud. I wrote to you > yesterday that I had called the doctor and the home health nurse > drew labs > and a urine specimen to see if there was a underlying problem, I haven't > heard from the doctor yet. Do you think for him to recover without meds > means that it was MSA and not infection? Needless to say, I have > been in a > lot better spirits than I have in the last week. > > thanks, Kathy > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2000 Report Share Posted December 16, 2000 Congratulations. We area ll happy for you and for Dave. Marilyn in TN ---------- > >To: shydrageregroups >Subject: MSA >Date: Sat, Dec 16, 2000, 8:34 PM > >Hi everyone, hope you all are well. I have some good news, Dave can walk >today with his cane without help from me. He has been awake all day watching >ball games. His appetite has been better. I am so proud. I wrote to you >yesterday that I had called the doctor and the home health nurse drew labs >and a urine specimen to see if there was a underlying problem, I haven't >heard from the doctor yet. Do you think for him to recover without meds >means that it was MSA and not infection? Needless to say, I have been in a >lot better spirits than I have in the last week. > thanks, Kathy >_________________________________________________________________ >Get your FREE download of MSN Explorer at http://explorer.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 Hi everyone, Today, a physical therapist came to our house to see Dave. He will be getting therapy three times a week. I am very pleased. He is having a good day. Walking with his cane very well. Yesterday he walked with a walker. We'll pray for a good day tomorrow. The lab work we had Friday was fairly well. But he does have a UTI, which he started treatment for today. I knew that when he had fever, his weakness tripled but I didn't connect the cause of the weakness to being infection. He is very sensitive to temps. He becomes lethargic and usually I can't get him out of bed. So, I thought that as long as he wasn't having a temp he was okay. Thank you for informing me of the symptoms of an infection in a person with shy-drager. I have learned a lot from all of you. Dave and I hope you and your families has a very Merry Christmas. I am doing everything in my power to see that we have the best one yet. Dave and Kathy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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