Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Carol Hope Rob continues to gain back some ground. So sorry to hear he's going through a rough time now. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Sorry to hear Bob has had such difficulties. It's so much harder when a new level or set of symptoms appear. Hang in there. See you in Boston, Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Hi Carol, Hang in there! & Maddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Hi Bill, God willing you will see the both of us there on Saturday. I hope to come in by myself on Friday night depending if I can get someone to stay with Maddie. See you there, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Hi Bill, God willing you will see the both of us there on Saturday. I hope to come in by myself on Friday night depending if I can get someone to stay with Maddie. See you there, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Hi Bill, God willing you will see the both of us there on Saturday. I hope to come in by myself on Friday night depending if I can get someone to stay with Maddie. See you there, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Hi , Will I get to see you and Maddie at Boston? Take care, Bill --------------------------------------------- 9910@... wrote: Hi Carol, Hang in there! & Maddie 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 15, 2002 Report Share Posted April 15, 2002 Hi , Will I get to see you and Maddie at Boston? Take care, Bill --------------------------------------------- 9910@... wrote: Hi Carol, Hang in there! & Maddie 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 15, 2002 Report Share Posted April 15, 2002 Hi , Will I get to see you and Maddie at Boston? Take care, Bill --------------------------------------------- 9910@... wrote: Hi Carol, Hang in there! & Maddie 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 15, 2002 Report Share Posted April 15, 2002 Dear Carol and Rob: Hang in there. I hope to see you folks in Boston. I am trying now to finalize my plans. Bob took Mirapex a few years ago and did not do well. His Neurologist thought he should give it another try and somehow or other this time it seems to help him a little. Adjusting the meds is tricky. I try to keep a little record but too many meds and he has hallucinations and too little he can hardly move. Somedays start out good and go down hill with the smallest things. Saturday was beautiful as we sat in the kitchen, the sun was shining, the birds were singing, the Sox beat the " dreaded Yankees " - which made my Mother happy as she read the Sports Pages - when Bob wanted to go to the bathroom. I pushed his transport chair to the bathroom door - he can walk with help about 10 or 12 steps - he grabbed on to one of the 3 bars I have to hold on to and grabbed the doorknob too. I didn't see that and as I went to help him down on the toilet the door hit my arm and I tried to break his arm free from the knob. Well it set his day off badly. He complained I hurt his arm. It was either getting his arm free from the knob or both of us on the hard tile floor or in the tub. He somehow feels he is doing it all himself. He still lets me know when he wants to urinate but then he does not seem to know whether he has started or finished. He uses Depends Guards just in case and he does have accidents. He eventually got over his " sore-arm " bad mood and cheered up later when his old " Navy Buddy " stopped by. At night sometimes he wakes me up - I will get him on the commode and then he doesn't know whether he went or not. Looking forward to seeing you both in May. Pat from Framingham Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Dear Carol and Rob: Hang in there. I hope to see you folks in Boston. I am trying now to finalize my plans. Bob took Mirapex a few years ago and did not do well. His Neurologist thought he should give it another try and somehow or other this time it seems to help him a little. Adjusting the meds is tricky. I try to keep a little record but too many meds and he has hallucinations and too little he can hardly move. Somedays start out good and go down hill with the smallest things. Saturday was beautiful as we sat in the kitchen, the sun was shining, the birds were singing, the Sox beat the " dreaded Yankees " - which made my Mother happy as she read the Sports Pages - when Bob wanted to go to the bathroom. I pushed his transport chair to the bathroom door - he can walk with help about 10 or 12 steps - he grabbed on to one of the 3 bars I have to hold on to and grabbed the doorknob too. I didn't see that and as I went to help him down on the toilet the door hit my arm and I tried to break his arm free from the knob. Well it set his day off badly. He complained I hurt his arm. It was either getting his arm free from the knob or both of us on the hard tile floor or in the tub. He somehow feels he is doing it all himself. He still lets me know when he wants to urinate but then he does not seem to know whether he has started or finished. He uses Depends Guards just in case and he does have accidents. He eventually got over his " sore-arm " bad mood and cheered up later when his old " Navy Buddy " stopped by. At night sometimes he wakes me up - I will get him on the commode and then he doesn't know whether he went or not. Looking forward to seeing you both in May. Pat from Framingham Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Dear Carol and Rob: Hang in there. I hope to see you folks in Boston. I am trying now to finalize my plans. Bob took Mirapex a few years ago and did not do well. His Neurologist thought he should give it another try and somehow or other this time it seems to help him a little. Adjusting the meds is tricky. I try to keep a little record but too many meds and he has hallucinations and too little he can hardly move. Somedays start out good and go down hill with the smallest things. Saturday was beautiful as we sat in the kitchen, the sun was shining, the birds were singing, the Sox beat the " dreaded Yankees " - which made my Mother happy as she read the Sports Pages - when Bob wanted to go to the bathroom. I pushed his transport chair to the bathroom door - he can walk with help about 10 or 12 steps - he grabbed on to one of the 3 bars I have to hold on to and grabbed the doorknob too. I didn't see that and as I went to help him down on the toilet the door hit my arm and I tried to break his arm free from the knob. Well it set his day off badly. He complained I hurt his arm. It was either getting his arm free from the knob or both of us on the hard tile floor or in the tub. He somehow feels he is doing it all himself. He still lets me know when he wants to urinate but then he does not seem to know whether he has started or finished. He uses Depends Guards just in case and he does have accidents. He eventually got over his " sore-arm " bad mood and cheered up later when his old " Navy Buddy " stopped by. At night sometimes he wakes me up - I will get him on the commode and then he doesn't know whether he went or not. Looking forward to seeing you both in May. Pat from Framingham Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Carol, I had been wondering about you all. You are right, you had not been on the list in a while. We are certainly sorry to hear the Rob has been having difficulties. I am certainly glad that things appear to have improved. Tell Rob, " Good luck! " We learned that the medications to help with bladder control may also cause bowel problems/constipation. Speedy got his first major bowel impaction after being on Detrol for about 3 months. He was having lots of loose stools, so we were quite surprised to learn that he was also impacted. Long messy story. Just be careful, be aware. We also recognize that all of this " stuff " is different from patient to patient. We are also having more problems with the sleep disorder. Speedy is absolutely unable to move when he is awake (maybe his toes some), except for feeding himself and washing his face. Sometimes when he is asleep, he can have really unusual movements....from dramatic movement to very rapid movement. Then during the day, we must use the lift to be able to do anything with him. The sunshine was so nice in TN today. Speedy was going to sit in his wheel chair in the yard. While he was outside, he decided to ride down the drive and the distance of our property on the road. He got too close to the edge of the black top and turned his wheel chair over into ditch on top of him. We spent the rest of the day in the emergency room. All kinds of cat scans, blood work, and X-rays. I think he used two or three of his nine lives today. If he did not use his, he certainly used some of mine. They were unable to find any damage, except a couple of scratches. Marilyn Anyway, know that we are thinking of you. I feel as though we have learned from you. Marilyn > > Reply-To: shydrager > Date: Tue, 7 May 2002 01:49:35 -0700 > To: shydrager > > Subject: Re: Update on Rob & Carol > > Carol, > Sorry Rob is having a difficult time. Keep the faith and hang in there. > S. > Update on Rob & Carol > > >> Dear group, >> >> I've been quiet on the list for a while, and I wanted to let you all >> know what's been going on. Rob's had a difficult time recently, but >> I think we've made some progress and he's doing a bit better. Here's >> what happened: >> >> He started taking Mirapex this winter. At first it seemed to help, >> particularly with the cramping in his foot and leg. Then he started >> to get confused, and ultimately had a bad case of " brain fog " -- very >> poor short term memory, slowed cognition, and (once again) wandering >> around at night in his sleep. We (with the doctor's full knowledge >> and consent) stopped the mirapex and went back to a higher dose of >> sinamet. The confusion got better but the leg cramps got worse. I >> the meantime, he was depressed and we began treatment for depression >> with Effexor. >> >> Over the past few months he has had increasing difficulty with >> bladder control, and is using Depends at night and when we go out for >> any length of time. He had been taking Detrol, but switched to >> ditropan and just this week, after a visit to the urologist, to >> Ditropan XL. The good news is that his bladder is emptying well. >> The bad news is that it does it on its own! Hopefully the ditropan >> XL will help. >> >> He also saw the sleep neurologist last week and is now scheduled for >> a sleep study to see if he's ready for a bi-pap. He's used a cpap >> for several years, and recently seems to be snoring in spite of it. >> I didn't even know that was possible! >> >> To make a long story short, four years after getting the diagnosis of >> SDS/MSA, his symptoms have gotten worse. This is the first time in >> those four years that they seem to have gotten this much worse this >> fast, and it's been a bit of a shock to us both. We're adjusting >> though, and Rob's a real trooper -- he's not going to give in. >> >> Anyway, I wanted you all to know that we're still out here and that >> we hope to see a bunch of you in Boston in May. >> >> Carol & Rob >> Lexington, MA >> >> >> 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 15, 2002 Report Share Posted April 15, 2002 Carol, I had been wondering about you all. You are right, you had not been on the list in a while. We are certainly sorry to hear the Rob has been having difficulties. I am certainly glad that things appear to have improved. Tell Rob, " Good luck! " We learned that the medications to help with bladder control may also cause bowel problems/constipation. Speedy got his first major bowel impaction after being on Detrol for about 3 months. He was having lots of loose stools, so we were quite surprised to learn that he was also impacted. Long messy story. Just be careful, be aware. We also recognize that all of this " stuff " is different from patient to patient. We are also having more problems with the sleep disorder. Speedy is absolutely unable to move when he is awake (maybe his toes some), except for feeding himself and washing his face. Sometimes when he is asleep, he can have really unusual movements....from dramatic movement to very rapid movement. Then during the day, we must use the lift to be able to do anything with him. The sunshine was so nice in TN today. Speedy was going to sit in his wheel chair in the yard. While he was outside, he decided to ride down the drive and the distance of our property on the road. He got too close to the edge of the black top and turned his wheel chair over into ditch on top of him. We spent the rest of the day in the emergency room. All kinds of cat scans, blood work, and X-rays. I think he used two or three of his nine lives today. If he did not use his, he certainly used some of mine. They were unable to find any damage, except a couple of scratches. Marilyn Anyway, know that we are thinking of you. I feel as though we have learned from you. Marilyn > > Reply-To: shydrager > Date: Tue, 7 May 2002 01:49:35 -0700 > To: shydrager > > Subject: Re: Update on Rob & Carol > > Carol, > Sorry Rob is having a difficult time. Keep the faith and hang in there. > S. > Update on Rob & Carol > > >> Dear group, >> >> I've been quiet on the list for a while, and I wanted to let you all >> know what's been going on. Rob's had a difficult time recently, but >> I think we've made some progress and he's doing a bit better. Here's >> what happened: >> >> He started taking Mirapex this winter. At first it seemed to help, >> particularly with the cramping in his foot and leg. Then he started >> to get confused, and ultimately had a bad case of " brain fog " -- very >> poor short term memory, slowed cognition, and (once again) wandering >> around at night in his sleep. We (with the doctor's full knowledge >> and consent) stopped the mirapex and went back to a higher dose of >> sinamet. The confusion got better but the leg cramps got worse. I >> the meantime, he was depressed and we began treatment for depression >> with Effexor. >> >> Over the past few months he has had increasing difficulty with >> bladder control, and is using Depends at night and when we go out for >> any length of time. He had been taking Detrol, but switched to >> ditropan and just this week, after a visit to the urologist, to >> Ditropan XL. The good news is that his bladder is emptying well. >> The bad news is that it does it on its own! Hopefully the ditropan >> XL will help. >> >> He also saw the sleep neurologist last week and is now scheduled for >> a sleep study to see if he's ready for a bi-pap. He's used a cpap >> for several years, and recently seems to be snoring in spite of it. >> I didn't even know that was possible! >> >> To make a long story short, four years after getting the diagnosis of >> SDS/MSA, his symptoms have gotten worse. This is the first time in >> those four years that they seem to have gotten this much worse this >> fast, and it's been a bit of a shock to us both. We're adjusting >> though, and Rob's a real trooper -- he's not going to give in. >> >> Anyway, I wanted you all to know that we're still out here and that >> we hope to see a bunch of you in Boston in May. >> >> Carol & Rob >> Lexington, MA >> >> >> 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 15, 2002 Report Share Posted April 15, 2002 Carol, I had been wondering about you all. You are right, you had not been on the list in a while. We are certainly sorry to hear the Rob has been having difficulties. I am certainly glad that things appear to have improved. Tell Rob, " Good luck! " We learned that the medications to help with bladder control may also cause bowel problems/constipation. Speedy got his first major bowel impaction after being on Detrol for about 3 months. He was having lots of loose stools, so we were quite surprised to learn that he was also impacted. Long messy story. Just be careful, be aware. We also recognize that all of this " stuff " is different from patient to patient. We are also having more problems with the sleep disorder. Speedy is absolutely unable to move when he is awake (maybe his toes some), except for feeding himself and washing his face. Sometimes when he is asleep, he can have really unusual movements....from dramatic movement to very rapid movement. Then during the day, we must use the lift to be able to do anything with him. The sunshine was so nice in TN today. Speedy was going to sit in his wheel chair in the yard. While he was outside, he decided to ride down the drive and the distance of our property on the road. He got too close to the edge of the black top and turned his wheel chair over into ditch on top of him. We spent the rest of the day in the emergency room. All kinds of cat scans, blood work, and X-rays. I think he used two or three of his nine lives today. If he did not use his, he certainly used some of mine. They were unable to find any damage, except a couple of scratches. Marilyn Anyway, know that we are thinking of you. I feel as though we have learned from you. Marilyn > > Reply-To: shydrager > Date: Tue, 7 May 2002 01:49:35 -0700 > To: shydrager > > Subject: Re: Update on Rob & Carol > > Carol, > Sorry Rob is having a difficult time. Keep the faith and hang in there. > S. > Update on Rob & Carol > > >> Dear group, >> >> I've been quiet on the list for a while, and I wanted to let you all >> know what's been going on. Rob's had a difficult time recently, but >> I think we've made some progress and he's doing a bit better. Here's >> what happened: >> >> He started taking Mirapex this winter. At first it seemed to help, >> particularly with the cramping in his foot and leg. Then he started >> to get confused, and ultimately had a bad case of " brain fog " -- very >> poor short term memory, slowed cognition, and (once again) wandering >> around at night in his sleep. We (with the doctor's full knowledge >> and consent) stopped the mirapex and went back to a higher dose of >> sinamet. The confusion got better but the leg cramps got worse. I >> the meantime, he was depressed and we began treatment for depression >> with Effexor. >> >> Over the past few months he has had increasing difficulty with >> bladder control, and is using Depends at night and when we go out for >> any length of time. He had been taking Detrol, but switched to >> ditropan and just this week, after a visit to the urologist, to >> Ditropan XL. The good news is that his bladder is emptying well. >> The bad news is that it does it on its own! Hopefully the ditropan >> XL will help. >> >> He also saw the sleep neurologist last week and is now scheduled for >> a sleep study to see if he's ready for a bi-pap. He's used a cpap >> for several years, and recently seems to be snoring in spite of it. >> I didn't even know that was possible! >> >> To make a long story short, four years after getting the diagnosis of >> SDS/MSA, his symptoms have gotten worse. This is the first time in >> those four years that they seem to have gotten this much worse this >> fast, and it's been a bit of a shock to us both. We're adjusting >> though, and Rob's a real trooper -- he's not going to give in. >> >> Anyway, I wanted you all to know that we're still out here and that >> we hope to see a bunch of you in Boston in May. >> >> Carol & Rob >> Lexington, MA >> >> >> 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 16, 2002 Report Share Posted April 16, 2002 Marilyn, I'm so sorry to hear about Speedy's " crash " . I hope he (and YOU) willl be okay. Isn't it amazing how a person can act so different in sleep? At his worst Rob really wanders around and is much more violent than he even would be while awake. It's amazing. I feel that I have learned from you too, Marliyn. It's interesting to me that sometimes we both respond to the same question and my response is factual and clinical, and yours covers some of the same information but hits more of the emotional and psychological issues. Both are so important, yet I, like many of the doctors, overlook the emotional side. Thanks for reminding me that is important too. Hugs, Carol & Rob > Carol, > > I had been wondering about you all. You are right, you had not been on the > list in a while. > > We are certainly sorry to hear the Rob has been having difficulties. I am > certainly glad that things appear to have improved. Tell Rob, " Good luck! " > > We learned that the medications to help with bladder control may also cause > bowel problems/constipation. Speedy got his first major bowel impaction > after being on Detrol for about 3 months. He was having lots of loose > stools, so we were quite surprised to learn that he was also impacted. Long > messy story. Just be careful, be aware. We also recognize that all of > this " stuff " is different from patient to patient. > > We are also having more problems with the sleep disorder. Speedy is > absolutely unable to move when he is awake (maybe his toes some), except for > feeding himself and washing his face. Sometimes when he is asleep, he can > have really unusual movements....from dramatic movement to very rapid > movement. Then during the day, we must use the lift to be able to do > anything with him. > > The sunshine was so nice in TN today. Speedy was going to sit in his wheel > chair in the yard. While he was outside, he decided to ride down the drive > and the distance of our property on the road. He got too close to the edge > of the black top and turned his wheel chair over into ditch on top of him. > We spent the rest of the day in the emergency room. All kinds of cat scans, > blood work, and X-rays. I think he used two or three of his nine lives > today. If he did not use his, he certainly used some of mine. They were > unable to find any damage, except a couple of scratches. > > Marilyn > > Anyway, know that we are thinking of you. I feel as though we have learned > from you. > > Marilyn > > > > From: " Strong " > > Reply-To: shydrager@y... > > Date: Tue, 7 May 2002 01:49:35 -0700 > > To: > > Subject: Re: Update on Rob & Carol > > > > Carol, > > Sorry Rob is having a difficult time. Keep the faith and hang in there. > > S. > > Update on Rob & Carol > > > > > >> Dear group, > >> > >> I've been quiet on the list for a while, and I wanted to let you all > >> know what's been going on. Rob's had a difficult time recently, but > >> I think we've made some progress and he's doing a bit better. Here's > >> what happened: > >> > >> He started taking Mirapex this winter. At first it seemed to help, > >> particularly with the cramping in his foot and leg. Then he started > >> to get confused, and ultimately had a bad case of " brain fog " -- very > >> poor short term memory, slowed cognition, and (once again) wandering > >> around at night in his sleep. We (with the doctor's full knowledge > >> and consent) stopped the mirapex and went back to a higher dose of > >> sinamet. The confusion got better but the leg cramps got worse. I > >> the meantime, he was depressed and we began treatment for depression > >> with Effexor. > >> > >> Over the past few months he has had increasing difficulty with > >> bladder control, and is using Depends at night and when we go out for > >> any length of time. He had been taking Detrol, but switched to > >> ditropan and just this week, after a visit to the urologist, to > >> Ditropan XL. The good news is that his bladder is emptying well. > >> The bad news is that it does it on its own! Hopefully the ditropan > >> XL will help. > >> > >> He also saw the sleep neurologist last week and is now scheduled for > >> a sleep study to see if he's ready for a bi-pap. He's used a cpap > >> for several years, and recently seems to be snoring in spite of it. > >> I didn't even know that was possible! > >> > >> To make a long story short, four years after getting the diagnosis of > >> SDS/MSA, his symptoms have gotten worse. This is the first time in > >> those four years that they seem to have gotten this much worse this > >> fast, and it's been a bit of a shock to us both. We're adjusting > >> though, and Rob's a real trooper -- he's not going to give in. > >> > >> Anyway, I wanted you all to know that we're still out here and that > >> we hope to see a bunch of you in Boston in May. > >> > >> Carol & Rob > >> Lexington, MA > >> > >> > >> If you do not wish to belong to shydrager, you may > >> unsubscribe by sending a blank email to > >> > >> shydrager-unsubscribe@y... > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Pat, We all have our trials, don't we? I do get tired of cleaning up pee. And I know it will only get worse. See you in May! Carol & Rob > Dear Carol and Rob: Hang in there. I hope to see you folks in Boston. I > am trying now to finalize my plans. Bob took Mirapex a few years ago and > did not do well. His Neurologist thought he should give it another try and > somehow or other this time it seems to help him a little. Adjusting the meds > is tricky. I try to keep a little record but too many meds and he has > hallucinations and too little he can hardly move. > Somedays start out good and go down hill with the smallest > things. Saturday was beautiful as we sat in the kitchen, the sun was > shining, the birds were singing, the Sox beat the " dreaded Yankees " - which > made my Mother happy as she read the Sports Pages - when Bob wanted to go to > the bathroom. I pushed his transport chair to the bathroom door - he can > walk with help about 10 or 12 steps - he grabbed on to one of the 3 bars I > have to hold on to and grabbed the doorknob too. I didn't see that and as I > went to help him down on the toilet the door hit my arm and I tried to break > his arm free from the knob. Well it set his day off badly. He complained I > hurt his arm. It was either getting his arm free from the knob or both of us > on the hard tile floor or in the tub. He somehow feels he is doing it all > himself. He still lets me know when he wants to urinate but then he does not > seem to know whether he has started or finished. He uses Depends Guards > just in case and he does have accidents. He eventually got over his > " sore-arm " bad mood and cheered up later when his old " Navy Buddy " stopped > by. At night sometimes he wakes me up - I will get him on the commode and > then he doesn't know whether he went or not. > Looking forward to seeing you both in May. > > Pat from Framingham Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Dear Carol and Rob: I wish I could give you info to help you but sometimes things get adjusted or we learn to handle them better. Bob has urinary problems off and on. Right now he uses Depends " Mens Guards " . I think they changed the style because the new ones are not as good so I will have to find something else. The thing that bothers me the most is lack of sleep. Bob wakes me when he has to urinate - I'm glad for that - but that means my sleep is disturbed. There was a time I used large Depends and he just went in them. Why his incontinence changed I don't know. Things haven't really gotten better they just changed. Pivoting him on to the commode is a challenge. I'm glad I have the one with let-down arms. Bob also gets fungus around the top of the legs and I have to keep putting on Nystatin. If I keep him out of the Depends the fungus is better but then he has an accident. It's like everything with Shy-Drager you learn to handle one thing and another comes along. Bob says he does not want a catheter, Peg or any artificial help. I don't want to remind him that he has a Pacemaker. I don't know how he will feel further down the line if he has a real need for more help. We'll take it one day at a time. Bob seems to sleep a lot lately. I try to keep his mind active. We had the Marathon on and the Red Sox-Yankees game on close by. He really just glanced at them occasionally. Later I played some tapes of movies he likes but he just slept a lot. He was someone who had a million interests and activities and it was never hard to get him involved. Once in a while a little spark returns when the grandchildren come by or some friends but mostly he is snoozing. In contrast my Mother who will soon be 98 was of course blessing the Sox and going on how good they are. Later she was enjoying the Bruins and glad they are in the Playoffs. She is always watching " Keeping up Appearances " , " Are You Being Served " , or some other crazy shows. She laughs so hard she doesn't mind repeating them because she misses so much because she is laughing. I even got her some crazy tapes of " Benny Hill " . It's really wild here with us all on the 1st floor - including 4 TVs so no one will miss a show. I was out in the yard today it was so nice and with my Mom's TV blaring - I left Bob with a Submarine Movie - the house I think was vibrating a little. It reminded me of when the kids were Teenagers and different music was blaring from every room. They play everything loud just like the kids did. Of course they have an excuse - age deafness. Hope things improve with Rob and he can find some meds that help. When I get up at night I often think of the other Shy-Drager Caregivers and wondering if any are up and busy with their loved one. Take care, Pat from Framingham Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Carol, Thank you for your comments. I am certainly on the emotional side. I feel like that I am on an emotional rollercoaster sometimes. It seems as though we rock along ok for a few days and then we have an accident, so my emotions drop out from under me. My training in children and education makes me lean toward what/how people think and react. Best wishes to you. I do wish we could be in Boston, but there is no traveling with Speedy at this point. It is very difficult to find people to stay with him. Most people want to " sit " . That means SIT. In this house, we need people who are willing to work!. Please take notes for the rest of us. I am sure that the conference will be great. I am grateful that we had the opportunity to meet you all and others at the conference in Cleveland. Marilyn in TN > > Reply-To: shydrager > Date: Tue, 16 Apr 2002 13:26:35 -0000 > To: shydrager > Subject: Re: Update on Rob & Carol > > Marilyn, > > I'm so sorry to hear about Speedy's " crash " . I hope he (and YOU) > willl be okay. > > Isn't it amazing how a person can act so different in sleep? At his > worst Rob really wanders around and is much more violent than he even > would be while awake. It's amazing. > > I feel that I have learned from you too, Marliyn. It's interesting > to me that sometimes we both respond to the same question and my > response is factual and clinical, and yours covers some of the same > information but hits more of the emotional and psychological issues. > Both are so important, yet I, like many of the doctors, overlook the > emotional side. Thanks for reminding me that is important too. > > Hugs, > > Carol & Rob > > >> Carol, >> >> I had been wondering about you all. You are right, you had not > been on the >> list in a while. >> >> We are certainly sorry to hear the Rob has been having > difficulties. I am >> certainly glad that things appear to have improved. Tell > Rob, " Good luck! " >> >> We learned that the medications to help with bladder control may > also cause >> bowel problems/constipation. Speedy got his first major bowel > impaction >> after being on Detrol for about 3 months. He was having lots of > loose >> stools, so we were quite surprised to learn that he was also > impacted. Long >> messy story. Just be careful, be aware. We also recognize that > all of >> this " stuff " is different from patient to patient. >> >> We are also having more problems with the sleep disorder. Speedy is >> absolutely unable to move when he is awake (maybe his toes some), > except for >> feeding himself and washing his face. Sometimes when he is asleep, > he can >> have really unusual movements....from dramatic movement to very > rapid >> movement. Then during the day, we must use the lift to be able to > do >> anything with him. >> >> The sunshine was so nice in TN today. Speedy was going to sit in > his wheel >> chair in the yard. While he was outside, he decided to ride down > the drive >> and the distance of our property on the road. He got too close to > the edge >> of the black top and turned his wheel chair over into ditch on top > of him. >> We spent the rest of the day in the emergency room. All kinds of > cat scans, >> blood work, and X-rays. I think he used two or three of his nine > lives >> today. If he did not use his, he certainly used some of mine. They > were >> unable to find any damage, except a couple of scratches. >> >> Marilyn >> >> Anyway, know that we are thinking of you. I feel as though we have > learned >> from you. >> >> Marilyn >> >> >>> From: " Strong " >>> Reply-To: shydrager@y... >>> Date: Tue, 7 May 2002 01:49:35 -0700 >>> To: >>> Subject: Re: Update on Rob & Carol >>> >>> Carol, >>> Sorry Rob is having a difficult time. Keep the faith and hang in > there. >>> S. >>> Update on Rob & Carol >>> >>> >>>> Dear group, >>>> >>>> I've been quiet on the list for a while, and I wanted to let > you all >>>> know what's been going on. Rob's had a difficult time recently, > but >>>> I think we've made some progress and he's doing a bit better. > Here's >>>> what happened: >>>> >>>> He started taking Mirapex this winter. At first it seemed to > help, >>>> particularly with the cramping in his foot and leg. Then he > started >>>> to get confused, and ultimately had a bad case of " brain fog " -- > very >>>> poor short term memory, slowed cognition, and (once again) > wandering >>>> around at night in his sleep. We (with the doctor's full > knowledge >>>> and consent) stopped the mirapex and went back to a higher dose > of >>>> sinamet. The confusion got better but the leg cramps got > worse. I >>>> the meantime, he was depressed and we began treatment for > depression >>>> with Effexor. >>>> >>>> Over the past few months he has had increasing difficulty with >>>> bladder control, and is using Depends at night and when we go > out for >>>> any length of time. He had been taking Detrol, but switched to >>>> ditropan and just this week, after a visit to the urologist, to >>>> Ditropan XL. The good news is that his bladder is emptying well. >>>> The bad news is that it does it on its own! Hopefully the > ditropan >>>> XL will help. >>>> >>>> He also saw the sleep neurologist last week and is now scheduled > for >>>> a sleep study to see if he's ready for a bi-pap. He's used a > cpap >>>> for several years, and recently seems to be snoring in spite of > it. >>>> I didn't even know that was possible! >>>> >>>> To make a long story short, four years after getting the > diagnosis of >>>> SDS/MSA, his symptoms have gotten worse. This is the first time > in >>>> those four years that they seem to have gotten this much worse > this >>>> fast, and it's been a bit of a shock to us both. We're adjusting >>>> though, and Rob's a real trooper -- he's not going to give in. >>>> >>>> Anyway, I wanted you all to know that we're still out here and > that >>>> we hope to see a bunch of you in Boston in May. >>>> >>>> Carol & Rob >>>> Lexington, MA >>>> >>>> >>>> If you do not wish to belong to shydrager, you may >>>> unsubscribe by sending a blank email to >>>> >>>> shydrager-unsubscribe@y... >>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Carol, Thank you for your comments. I am certainly on the emotional side. I feel like that I am on an emotional rollercoaster sometimes. It seems as though we rock along ok for a few days and then we have an accident, so my emotions drop out from under me. My training in children and education makes me lean toward what/how people think and react. Best wishes to you. I do wish we could be in Boston, but there is no traveling with Speedy at this point. It is very difficult to find people to stay with him. Most people want to " sit " . That means SIT. In this house, we need people who are willing to work!. Please take notes for the rest of us. I am sure that the conference will be great. I am grateful that we had the opportunity to meet you all and others at the conference in Cleveland. Marilyn in TN > > Reply-To: shydrager > Date: Tue, 16 Apr 2002 13:26:35 -0000 > To: shydrager > Subject: Re: Update on Rob & Carol > > Marilyn, > > I'm so sorry to hear about Speedy's " crash " . I hope he (and YOU) > willl be okay. > > Isn't it amazing how a person can act so different in sleep? At his > worst Rob really wanders around and is much more violent than he even > would be while awake. It's amazing. > > I feel that I have learned from you too, Marliyn. It's interesting > to me that sometimes we both respond to the same question and my > response is factual and clinical, and yours covers some of the same > information but hits more of the emotional and psychological issues. > Both are so important, yet I, like many of the doctors, overlook the > emotional side. Thanks for reminding me that is important too. > > Hugs, > > Carol & Rob > > >> Carol, >> >> I had been wondering about you all. You are right, you had not > been on the >> list in a while. >> >> We are certainly sorry to hear the Rob has been having > difficulties. I am >> certainly glad that things appear to have improved. Tell > Rob, " Good luck! " >> >> We learned that the medications to help with bladder control may > also cause >> bowel problems/constipation. Speedy got his first major bowel > impaction >> after being on Detrol for about 3 months. He was having lots of > loose >> stools, so we were quite surprised to learn that he was also > impacted. Long >> messy story. Just be careful, be aware. We also recognize that > all of >> this " stuff " is different from patient to patient. >> >> We are also having more problems with the sleep disorder. Speedy is >> absolutely unable to move when he is awake (maybe his toes some), > except for >> feeding himself and washing his face. Sometimes when he is asleep, > he can >> have really unusual movements....from dramatic movement to very > rapid >> movement. Then during the day, we must use the lift to be able to > do >> anything with him. >> >> The sunshine was so nice in TN today. Speedy was going to sit in > his wheel >> chair in the yard. While he was outside, he decided to ride down > the drive >> and the distance of our property on the road. He got too close to > the edge >> of the black top and turned his wheel chair over into ditch on top > of him. >> We spent the rest of the day in the emergency room. All kinds of > cat scans, >> blood work, and X-rays. I think he used two or three of his nine > lives >> today. If he did not use his, he certainly used some of mine. They > were >> unable to find any damage, except a couple of scratches. >> >> Marilyn >> >> Anyway, know that we are thinking of you. I feel as though we have > learned >> from you. >> >> Marilyn >> >> >>> From: " Strong " >>> Reply-To: shydrager@y... >>> Date: Tue, 7 May 2002 01:49:35 -0700 >>> To: >>> Subject: Re: Update on Rob & Carol >>> >>> Carol, >>> Sorry Rob is having a difficult time. Keep the faith and hang in > there. >>> S. >>> Update on Rob & Carol >>> >>> >>>> Dear group, >>>> >>>> I've been quiet on the list for a while, and I wanted to let > you all >>>> know what's been going on. Rob's had a difficult time recently, > but >>>> I think we've made some progress and he's doing a bit better. > Here's >>>> what happened: >>>> >>>> He started taking Mirapex this winter. At first it seemed to > help, >>>> particularly with the cramping in his foot and leg. Then he > started >>>> to get confused, and ultimately had a bad case of " brain fog " -- > very >>>> poor short term memory, slowed cognition, and (once again) > wandering >>>> around at night in his sleep. We (with the doctor's full > knowledge >>>> and consent) stopped the mirapex and went back to a higher dose > of >>>> sinamet. The confusion got better but the leg cramps got > worse. I >>>> the meantime, he was depressed and we began treatment for > depression >>>> with Effexor. >>>> >>>> Over the past few months he has had increasing difficulty with >>>> bladder control, and is using Depends at night and when we go > out for >>>> any length of time. He had been taking Detrol, but switched to >>>> ditropan and just this week, after a visit to the urologist, to >>>> Ditropan XL. The good news is that his bladder is emptying well. >>>> The bad news is that it does it on its own! Hopefully the > ditropan >>>> XL will help. >>>> >>>> He also saw the sleep neurologist last week and is now scheduled > for >>>> a sleep study to see if he's ready for a bi-pap. He's used a > cpap >>>> for several years, and recently seems to be snoring in spite of > it. >>>> I didn't even know that was possible! >>>> >>>> To make a long story short, four years after getting the > diagnosis of >>>> SDS/MSA, his symptoms have gotten worse. This is the first time > in >>>> those four years that they seem to have gotten this much worse > this >>>> fast, and it's been a bit of a shock to us both. We're adjusting >>>> though, and Rob's a real trooper -- he's not going to give in. >>>> >>>> Anyway, I wanted you all to know that we're still out here and > that >>>> we hope to see a bunch of you in Boston in May. >>>> >>>> Carol & Rob >>>> Lexington, MA >>>> >>>> >>>> If you do not wish to belong to shydrager, you may >>>> unsubscribe by sending a blank email to >>>> >>>> shydrager-unsubscribe@y... >>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Carol, Thank you for your comments. I am certainly on the emotional side. I feel like that I am on an emotional rollercoaster sometimes. It seems as though we rock along ok for a few days and then we have an accident, so my emotions drop out from under me. My training in children and education makes me lean toward what/how people think and react. Best wishes to you. I do wish we could be in Boston, but there is no traveling with Speedy at this point. It is very difficult to find people to stay with him. Most people want to " sit " . That means SIT. In this house, we need people who are willing to work!. Please take notes for the rest of us. I am sure that the conference will be great. I am grateful that we had the opportunity to meet you all and others at the conference in Cleveland. Marilyn in TN > > Reply-To: shydrager > Date: Tue, 16 Apr 2002 13:26:35 -0000 > To: shydrager > Subject: Re: Update on Rob & Carol > > Marilyn, > > I'm so sorry to hear about Speedy's " crash " . I hope he (and YOU) > willl be okay. > > Isn't it amazing how a person can act so different in sleep? At his > worst Rob really wanders around and is much more violent than he even > would be while awake. It's amazing. > > I feel that I have learned from you too, Marliyn. It's interesting > to me that sometimes we both respond to the same question and my > response is factual and clinical, and yours covers some of the same > information but hits more of the emotional and psychological issues. > Both are so important, yet I, like many of the doctors, overlook the > emotional side. Thanks for reminding me that is important too. > > Hugs, > > Carol & Rob > > >> Carol, >> >> I had been wondering about you all. You are right, you had not > been on the >> list in a while. >> >> We are certainly sorry to hear the Rob has been having > difficulties. I am >> certainly glad that things appear to have improved. Tell > Rob, " Good luck! " >> >> We learned that the medications to help with bladder control may > also cause >> bowel problems/constipation. Speedy got his first major bowel > impaction >> after being on Detrol for about 3 months. He was having lots of > loose >> stools, so we were quite surprised to learn that he was also > impacted. Long >> messy story. Just be careful, be aware. We also recognize that > all of >> this " stuff " is different from patient to patient. >> >> We are also having more problems with the sleep disorder. Speedy is >> absolutely unable to move when he is awake (maybe his toes some), > except for >> feeding himself and washing his face. Sometimes when he is asleep, > he can >> have really unusual movements....from dramatic movement to very > rapid >> movement. Then during the day, we must use the lift to be able to > do >> anything with him. >> >> The sunshine was so nice in TN today. Speedy was going to sit in > his wheel >> chair in the yard. While he was outside, he decided to ride down > the drive >> and the distance of our property on the road. He got too close to > the edge >> of the black top and turned his wheel chair over into ditch on top > of him. >> We spent the rest of the day in the emergency room. All kinds of > cat scans, >> blood work, and X-rays. I think he used two or three of his nine > lives >> today. If he did not use his, he certainly used some of mine. They > were >> unable to find any damage, except a couple of scratches. >> >> Marilyn >> >> Anyway, know that we are thinking of you. I feel as though we have > learned >> from you. >> >> Marilyn >> >> >>> From: " Strong " >>> Reply-To: shydrager@y... >>> Date: Tue, 7 May 2002 01:49:35 -0700 >>> To: >>> Subject: Re: Update on Rob & Carol >>> >>> Carol, >>> Sorry Rob is having a difficult time. Keep the faith and hang in > there. >>> S. >>> Update on Rob & Carol >>> >>> >>>> Dear group, >>>> >>>> I've been quiet on the list for a while, and I wanted to let > you all >>>> know what's been going on. Rob's had a difficult time recently, > but >>>> I think we've made some progress and he's doing a bit better. > Here's >>>> what happened: >>>> >>>> He started taking Mirapex this winter. At first it seemed to > help, >>>> particularly with the cramping in his foot and leg. Then he > started >>>> to get confused, and ultimately had a bad case of " brain fog " -- > very >>>> poor short term memory, slowed cognition, and (once again) > wandering >>>> around at night in his sleep. We (with the doctor's full > knowledge >>>> and consent) stopped the mirapex and went back to a higher dose > of >>>> sinamet. The confusion got better but the leg cramps got > worse. I >>>> the meantime, he was depressed and we began treatment for > depression >>>> with Effexor. >>>> >>>> Over the past few months he has had increasing difficulty with >>>> bladder control, and is using Depends at night and when we go > out for >>>> any length of time. He had been taking Detrol, but switched to >>>> ditropan and just this week, after a visit to the urologist, to >>>> Ditropan XL. The good news is that his bladder is emptying well. >>>> The bad news is that it does it on its own! Hopefully the > ditropan >>>> XL will help. >>>> >>>> He also saw the sleep neurologist last week and is now scheduled > for >>>> a sleep study to see if he's ready for a bi-pap. He's used a > cpap >>>> for several years, and recently seems to be snoring in spite of > it. >>>> I didn't even know that was possible! >>>> >>>> To make a long story short, four years after getting the > diagnosis of >>>> SDS/MSA, his symptoms have gotten worse. This is the first time > in >>>> those four years that they seem to have gotten this much worse > this >>>> fast, and it's been a bit of a shock to us both. We're adjusting >>>> though, and Rob's a real trooper -- he's not going to give in. >>>> >>>> Anyway, I wanted you all to know that we're still out here and > that >>>> we hope to see a bunch of you in Boston in May. >>>> >>>> Carol & Rob >>>> Lexington, MA >>>> >>>> >>>> If you do not wish to belong to shydrager, you may >>>> unsubscribe by sending a blank email to >>>> >>>> shydrager-unsubscribe@y... >>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Carol, Sorry Rob is having a difficult time. Keep the faith and hang in there. S. Update on Rob & Carol > Dear group, > > I've been quiet on the list for a while, and I wanted to let you all > know what's been going on. Rob's had a difficult time recently, but > I think we've made some progress and he's doing a bit better. Here's > what happened: > > He started taking Mirapex this winter. At first it seemed to help, > particularly with the cramping in his foot and leg. Then he started > to get confused, and ultimately had a bad case of " brain fog " -- very > poor short term memory, slowed cognition, and (once again) wandering > around at night in his sleep. We (with the doctor's full knowledge > and consent) stopped the mirapex and went back to a higher dose of > sinamet. The confusion got better but the leg cramps got worse. I > the meantime, he was depressed and we began treatment for depression > with Effexor. > > Over the past few months he has had increasing difficulty with > bladder control, and is using Depends at night and when we go out for > any length of time. He had been taking Detrol, but switched to > ditropan and just this week, after a visit to the urologist, to > Ditropan XL. The good news is that his bladder is emptying well. > The bad news is that it does it on its own! Hopefully the ditropan > XL will help. > > He also saw the sleep neurologist last week and is now scheduled for > a sleep study to see if he's ready for a bi-pap. He's used a cpap > for several years, and recently seems to be snoring in spite of it. > I didn't even know that was possible! > > To make a long story short, four years after getting the diagnosis of > SDS/MSA, his symptoms have gotten worse. This is the first time in > those four years that they seem to have gotten this much worse this > fast, and it's been a bit of a shock to us both. We're adjusting > though, and Rob's a real trooper -- he's not going to give in. > > Anyway, I wanted you all to know that we're still out here and that > we hope to see a bunch of you in Boston in May. > > Carol & Rob > Lexington, MA > > > 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 May 7, 2002 Report Share Posted May 7, 2002 Carol, Sorry Rob is having a difficult time. Keep the faith and hang in there. S. Update on Rob & Carol > Dear group, > > I've been quiet on the list for a while, and I wanted to let you all > know what's been going on. Rob's had a difficult time recently, but > I think we've made some progress and he's doing a bit better. Here's > what happened: > > He started taking Mirapex this winter. At first it seemed to help, > particularly with the cramping in his foot and leg. Then he started > to get confused, and ultimately had a bad case of " brain fog " -- very > poor short term memory, slowed cognition, and (once again) wandering > around at night in his sleep. We (with the doctor's full knowledge > and consent) stopped the mirapex and went back to a higher dose of > sinamet. The confusion got better but the leg cramps got worse. I > the meantime, he was depressed and we began treatment for depression > with Effexor. > > Over the past few months he has had increasing difficulty with > bladder control, and is using Depends at night and when we go out for > any length of time. He had been taking Detrol, but switched to > ditropan and just this week, after a visit to the urologist, to > Ditropan XL. The good news is that his bladder is emptying well. > The bad news is that it does it on its own! Hopefully the ditropan > XL will help. > > He also saw the sleep neurologist last week and is now scheduled for > a sleep study to see if he's ready for a bi-pap. He's used a cpap > for several years, and recently seems to be snoring in spite of it. > I didn't even know that was possible! > > To make a long story short, four years after getting the diagnosis of > SDS/MSA, his symptoms have gotten worse. This is the first time in > those four years that they seem to have gotten this much worse this > fast, and it's been a bit of a shock to us both. We're adjusting > though, and Rob's a real trooper -- he's not going to give in. > > Anyway, I wanted you all to know that we're still out here and that > we hope to see a bunch of you in Boston in May. > > Carol & Rob > Lexington, MA > > > 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 May 7, 2002 Report Share Posted May 7, 2002 Carol, Sorry Rob is having a difficult time. Keep the faith and hang in there. S. Update on Rob & Carol > Dear group, > > I've been quiet on the list for a while, and I wanted to let you all > know what's been going on. Rob's had a difficult time recently, but > I think we've made some progress and he's doing a bit better. Here's > what happened: > > He started taking Mirapex this winter. At first it seemed to help, > particularly with the cramping in his foot and leg. Then he started > to get confused, and ultimately had a bad case of " brain fog " -- very > poor short term memory, slowed cognition, and (once again) wandering > around at night in his sleep. We (with the doctor's full knowledge > and consent) stopped the mirapex and went back to a higher dose of > sinamet. The confusion got better but the leg cramps got worse. I > the meantime, he was depressed and we began treatment for depression > with Effexor. > > Over the past few months he has had increasing difficulty with > bladder control, and is using Depends at night and when we go out for > any length of time. He had been taking Detrol, but switched to > ditropan and just this week, after a visit to the urologist, to > Ditropan XL. The good news is that his bladder is emptying well. > The bad news is that it does it on its own! Hopefully the ditropan > XL will help. > > He also saw the sleep neurologist last week and is now scheduled for > a sleep study to see if he's ready for a bi-pap. He's used a cpap > for several years, and recently seems to be snoring in spite of it. > I didn't even know that was possible! > > To make a long story short, four years after getting the diagnosis of > SDS/MSA, his symptoms have gotten worse. This is the first time in > those four years that they seem to have gotten this much worse this > fast, and it's been a bit of a shock to us both. We're adjusting > though, and Rob's a real trooper -- he's not going to give in. > > Anyway, I wanted you all to know that we're still out here and that > we hope to see a bunch of you in Boston in May. > > Carol & Rob > Lexington, MA > > > 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...
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