Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Thanks, nice to hear those words from both of you. I love all of you too. Enjoy reading all your mail. You are such a great support group. Don't know how I managed till I found all of you. Marilyn > Ditto and all!!!!!!! > > >>>>>>>>>>>>>>>>>>>> > Dear friends, > Jus wanted to sy hi nd I love you. > ove > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Dear and : When we decided to try using a condom catheter for ken at night, I went to our local Medical Supply House and bought several types and brands. They had only medium size, and I had to go back and order everything in Large size. Once we settled on a size and type and brand, our doctor wrote a prescription, and the supply house delivered them at Insurance expense once a month along with whatever bags we asked for. Ken used non-latex large self sealing ones, and we added paper tape to help keep them on. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Hi and , Good to see you are still around. How is doing. Are you roasting on Hilton Head? Got the house rented for the summer? Note, the Wal-Mart brand of briefs (diapers) is as good as the CVS brand and cheaper. I think they are called Assurance. ) I can't help on the condom catheters ) I did use Poise pads (Ultra's) inside the diapers at night. The Assurance bed pads are not as good as the Depends bed pads, but are much cheaper. The bed pads DO help, in fact I put them beneath the sheet as well as on top of the sheets to save the mattress. Take care, Bill Werre ---------------------------------------------------------------------- david_mary2001 wrote: > - > Hi Carol and others writing on this subject. > > and I joined the group in 2001 after was Dx. in 1999 with > Shydrager..MSA. Pretty much just been reading the past year..Have > taken on couple big projects when this all started with the thought > of being where we want to be when and how this would progress. > > This response is regarding the bladder problem. started > learning how to catherize about the same time of the third Dx. I am > also a RN so have been able to encourage as well as do some pt. > teaching along the way...to us both I should add..:>) > > We pretty much have decide what ever does come down the pike with > this it is not a woman thing or a man thing...but MSA thing. So the > bladder and bowel problems are so much easier to handle for both of > us. We also, look and easily find the humor in as much as we > can..Even wet beds!!! how about that. Anyway, at the present time > has added to the catheter, protective underware with the max > protection. We also found a new product couple months ago called > Depend Boost liners. Those are great as you can put one inside the > protective underware and gives extra protection...hense...why they > are called boost.. They are great to add to the underware at > night.We have only been able to find Boost at Walmart. The underware > is CVS brand and fits nicely. He still does use the cath. As the > bladder as we know does not empty much on it's own, so when he caths > then has longer dry period...for lack of a better way to say it. > > We were at the urologist yesterday and have decided to try the condom > Catheter. Dr. feels this would work well if we get the right kind. > He knows we are on this support group and suggested we ask you all > for suggestions as that would be the best way to get the best product > or where to find the best one. So can any of you help us out there? > Would like to get one this week to try. We will let you know how > well we do with this after we select one. Know there is a lot of > trial and error with so many things..so with your help you could save > us much error...how about that for confidence in this group.. > > It has been awhile since I posted on here. So doing this as a reply > as I was not sure how to start a new email..yup need help there > too. Plus would like to know how to send a picture to the group. > > Judy and Mark Whittaker were also friends we met via here and become > good friends with. Judy has since moved back to Ohio, and we miss > her and the dogs. We have three Bicons...We call them the Beach > Babies...CiCi, Sands and Shell...because we live near the beach. > Anyway, have some pictures of our last get together with Judy and > poodles and our Bichons before she left and would try to send to the > list if I can figure that out. > > The main question from this email...is Condom Catheters...so please > let us hear from anyone regarding those. > > Thanks... > and Hanson...Hilton Head Island, S.C. > > - In shydrager@y..., " Carol Langer " wrote: > > Aida, > > > > It's nice to hear from you. It seems like it's been a while. > > > > Rob is coping with the transition to Depends on occasion. He's had > a few > > " accidents " , mostly in the car when I can't get to a rest area > quickly > > enough. That was enough to realize that wearing Depends isn't as > bad as > > having wet pants. > > > > He also has problems at night, but they're a little different from > the > > others I've seen mentioned. He simply doesn't wake up when he > needs to go. > > At least not always. The result is a wet bed, so we've started to > use > > Depends at night all the time. > > > > I agree that women adapt to these things better. Not to be > graphic, but > > we're kind of used to having to wear pads and stuff to catch things. > > > > Thanks for sharing all this. It makes it easier to know others are > > struggling too. > > > > Carol & Rob > > Lexington, MA > > Toilet Problems > > > > > > > Hello Gillian: > > > > > > > > > Oh, how I know what you mean. Bill will admit to > > > feeling woozy, having problems eating, right hand > > > tremors, etc. BUT he won't admit to the " toilet > > > problem. " It took a syncope while he was standing at > > > the toilet to get him to sit down when his bp is low. > > > Neurologist told him the bp goes down when he empties > > > his bladder. Hence his passing out that time. > > > Sometimes, he forgets. I bought some antibacterial > > > wipes, and asked him to clean up afterwards. Sometimes > > > he remembers, sometimes he doesn't. I also think with > > > this disease, they lose some olfatory ability. > > > > > > 1) I bought a small bath mat that I keep over the tub. > > > Wash it every two days. > > > 2) Periodically, throw out boxer shorts. > > > 3) Let friends know that the best gift are pajamas. > > > Therefore, I lay out a new pair every so often. > > > 4) Bought a plastic " urinal " which he keeps near the > > > bed. I told him this was to avoid tripping over in > > > the dark. > > > > > > Above all, I worried when he wouldn't drink water > > > because he didn't want to have to be going to the > > > bathroom. When I read the research about water raising > > > the bp, then he was convinced. > > > > > > Bladder control seems very important for the male > > > psyche. Okay, guys. I know I am going out on a limb on > > > this one. But, I do believe women handle loss of > > > bladder control a lot better. Notice the TV > > > commercials for incontinence products, they are for > > > women. > > > > > > Aida > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 - Hi Bill, Thanks for the nice greeting. It has been a long while since posting on here. Life has been way to busy... Yes, we are renting our beach home again this summer. In fact not sure I told you we started builing a new home right off the island...looking over onto Hilton Head and the Inter-Coastal waters. Really a beautiful view, and I had my doubts about doing all this esp. with putting our home on the short term rental market. has loved every bit of all the planning and never thought it would go on this long. Hopefully, we are getting closer to a move in date. So we are in an apt. near by till it is finished. Due to progressing with this disease we decided not to try to keep the beach house as income and have it listed for sale now. Life could take a turn for the better if that would sell and the new one would finish about the same time. We have to start really making changes in our busy lifestyle. We seem to think we can still do so many things. I will try to send some pictures to you off the list ...soon. Sorry you didn't make Hilton Head on your great tour this past Spring. Judy, and I would have so like to have you come, however we were all over our heads with renting, moving, selling and making big changes.. Judy is happy back in Ohio as you know. Will check out the Walmart brand...although we buy at CVS when they are only $9.99/pkg. The new product Depend boost are really a great item. They don't have the moisture proof backing like the pads you mentioned. Have only seen tham at Walmart so far. Maybe we will have to have you come visit when we get in the new house. We have been having friends over to eat easy type meals on the back decks and hopefully we will be living in the whole house. Wish we could have made the Boston meeting. We are talking about the Denver one and since we have two sons there it is looking like it could be something we could work out. They want us to fly and I want to drive...of course they don't understand that one. We went last Spring and took the three Bichons along...Our sons each had two Bichons each so there were 7 Bichons together for the 10 days we were there...Now that was a sight. Would like to try the chat part of this. I did click on last night but no one was on there. I am doing good just to get back to writing on the list. I am feeling much the need for some support. So know it is here. Also, in the need for a day without half a dozen more things that have to be down between two houses. Know our goals have been pretty heddy the past two years. Time to get the life style down to something less stressful. Happy for you that you had such a nice time traveling. You must have really made some good memories... Always, and -- In shydrager@y..., Werre wrote: > Hi and , > > Good to see you are still around. How is doing. Are you roasting on > Hilton Head? Got the house rented for the summer? > > Note, the Wal-Mart brand of briefs (diapers) is as good as the CVS brand and > cheaper. I think they are called Assurance. ) I can't help on the condom > catheters ) I did use Poise pads (Ultra's) inside the diapers at night. > The Assurance bed pads are not as good as the Depends bed pads, but are much > cheaper. The bed pads DO help, in fact I put them beneath the sheet as well > as on top of the sheets to save the mattress. > > Take care, Bill Werre > > -------------------------------------------------------------------- -- > > david_mary2001 wrote: > > > - > > Hi Carol and others writing on this subject. > > > > and I joined the group in 2001 after was Dx. in 1999 with > > Shydrager..MSA. Pretty much just been reading the past year..Have > > taken on couple big projects when this all started with the thought > > of being where we want to be when and how this would progress. > > > > This response is regarding the bladder problem. started > > learning how to catherize about the same time of the third Dx. I am > > also a RN so have been able to encourage as well as do some pt. > > teaching along the way...to us both I should add..:>) > > > > We pretty much have decide what ever does come down the pike with > > this it is not a woman thing or a man thing...but MSA thing. So the > > bladder and bowel problems are so much easier to handle for both of > > us. We also, look and easily find the humor in as much as we > > can..Even wet beds!!! how about that. Anyway, at the present time > > has added to the catheter, protective underware with the max > > protection. We also found a new product couple months ago called > > Depend Boost liners. Those are great as you can put one inside the > > protective underware and gives extra protection...hense...why they > > are called boost.. They are great to add to the underware at > > night.We have only been able to find Boost at Walmart. The underware > > is CVS brand and fits nicely. He still does use the cath. As the > > bladder as we know does not empty much on it's own, so when he caths > > then has longer dry period...for lack of a better way to say it. > > > > We were at the urologist yesterday and have decided to try the condom > > Catheter. Dr. feels this would work well if we get the right kind. > > He knows we are on this support group and suggested we ask you all > > for suggestions as that would be the best way to get the best product > > or where to find the best one. So can any of you help us out there? > > Would like to get one this week to try. We will let you know how > > well we do with this after we select one. Know there is a lot of > > trial and error with so many things..so with your help you could save > > us much error...how about that for confidence in this group.. > > > > It has been awhile since I posted on here. So doing this as a reply > > as I was not sure how to start a new email..yup need help there > > too. Plus would like to know how to send a picture to the group. > > > > Judy and Mark Whittaker were also friends we met via here and become > > good friends with. Judy has since moved back to Ohio, and we miss > > her and the dogs. We have three Bicons...We call them the Beach > > Babies...CiCi, Sands and Shell...because we live near the beach. > > Anyway, have some pictures of our last get together with Judy and > > poodles and our Bichons before she left and would try to send to the > > list if I can figure that out. > > > > The main question from this email...is Condom Catheters...so please > > let us hear from anyone regarding those. > > > > Thanks... > > and Hanson...Hilton Head Island, S.C. > > > > - In shydrager@y..., " Carol Langer " wrote: > > > Aida, > > > > > > It's nice to hear from you. It seems like it's been a while. > > > > > > Rob is coping with the transition to Depends on occasion. He's had > > a few > > > " accidents " , mostly in the car when I can't get to a rest area > > quickly > > > enough. That was enough to realize that wearing Depends isn't as > > bad as > > > having wet pants. > > > > > > He also has problems at night, but they're a little different from > > the > > > others I've seen mentioned. He simply doesn't wake up when he > > needs to go. > > > At least not always. The result is a wet bed, so we've started to > > use > > > Depends at night all the time. > > > > > > I agree that women adapt to these things better. Not to be > > graphic, but > > > we're kind of used to having to wear pads and stuff to catch things. > > > > > > Thanks for sharing all this. It makes it easier to know others are > > > struggling too. > > > > > > Carol & Rob > > > Lexington, MA > > > Toilet Problems > > > > > > > > > > Hello Gillian: > > > > > > > > > > > > Oh, how I know what you mean. Bill will admit to > > > > feeling woozy, having problems eating, right hand > > > > tremors, etc. BUT he won't admit to the " toilet > > > > problem. " It took a syncope while he was standing at > > > > the toilet to get him to sit down when his bp is low. > > > > Neurologist told him the bp goes down when he empties > > > > his bladder. Hence his passing out that time. > > > > Sometimes, he forgets. I bought some antibacterial > > > > wipes, and asked him to clean up afterwards. Sometimes > > > > he remembers, sometimes he doesn't. I also think with > > > > this disease, they lose some olfatory ability. > > > > > > > > 1) I bought a small bath mat that I keep over the tub. > > > > Wash it every two days. > > > > 2) Periodically, throw out boxer shorts. > > > > 3) Let friends know that the best gift are pajamas. > > > > Therefore, I lay out a new pair every so often. > > > > 4) Bought a plastic " urinal " which he keeps near the > > > > bed. I told him this was to avoid tripping over in > > > > the dark. > > > > > > > > Above all, I worried when he wouldn't drink water > > > > because he didn't want to have to be going to the > > > > bathroom. When I read the research about water raising > > > > the bp, then he was convinced. > > > > > > > > Bladder control seems very important for the male > > > > psyche. Okay, guys. I know I am going out on a limb on > > > > this one. But, I do believe women handle loss of > > > > bladder control a lot better. Notice the TV > > > > commercials for incontinence products, they are for > > > > women. > > > > > > > > Aida > > > > > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 -Hi Barb, Thanks for your response. We have the prescription from the Doc. just trying to find out what others suggest as to a good brand to go with. Would you remember what brand you and Ken decided on? I told about what you said and having to change the size, and he " Lucky Ken " ..you would have to know 's wit. We didn't know medicare would pay for them or they would mail them to you. We are just learning about them. This whole thing sure is a non stop learning thing huh. I am thinking you are from Texas, but not sure. Is it Arlington? We used to live in Houston from 1987-1995 when we made the big leap to the Ocean. Think it is as hot here if not hotter than I remember the summers in Houston. Always, and -- In shydrager@y..., kmcrae@a... wrote: > Dear and : > When we decided to try using a condom catheter for ken at night, I > went to our local Medical Supply House and bought several types and brands. > They had only medium size, and I had to go back and order everything in Large > size. Once we settled on a size and type and brand, our doctor wrote a > prescription, and the supply house delivered them at Insurance expense once a > month along with whatever bags we asked for. Ken used non-latex large self > sealing ones, and we added paper tape to help keep them on. > > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 and , Write anytime you want. I generally check my email several times a day. We were all in the chat room this evening (Judy too). Sorry you missed us. Which chat room are you using? Do you have Netscape IM on your computer? If so what is your buddy name? I will be online about 2 PM EDT Thursday after softball so you can look for " bwerre " on IM and I can show you how to get in if you have it. I am not home on the weekends as I am now dating again. My lady friend lives north of Baltimore so I am on the road a lot. I met her through a mutual friend about the first of the year about 5 weeks after Charlotte died, and we have been dating weekends since. She is still working (a nurse) and the 80 miles is a hindrance to weekday dates. How far has progressed? Is he always in a wheelchair yet? Any swallowing problems? Judy mentioned you are using Mark's aide now. But she did not say how much help needed. Take care, Bill Werre ----------------------------------------------------- david_mary2001 wrote: > - > Hi Bill, > Thanks for the nice greeting. It has been a long while > since posting on here. Life has been way to busy... > Yes, we are renting our beach home again this summer. In fact > not sure I told you we started builing a new home right off > the island...looking over onto Hilton Head and the Inter-Coastal > waters. Really a beautiful view, and I had my doubts about doing > all this esp. with putting our home on the short term rental market. > has loved every bit of all the planning and never thought it > would go on this long. Hopefully, we are getting closer to a move in > date. So we are in an apt. near by till it is finished. Due to > progressing with this disease we decided not to try to keep the > beach house as income and have it listed for sale now. Life could > take a turn for the better if that would sell and the new one would > finish about the same time. We have to start really making changes in > our busy lifestyle. We seem to think we can still do so many things. > I will try to send some pictures to you off the list ...soon. Sorry > you didn't make Hilton Head on your great tour this past Spring. > Judy, and I would have so like to have you come, however we > were all over our heads with renting, moving, selling and making big > changes.. Judy is happy back in Ohio as you know. > > Will check out the Walmart brand...although we buy at CVS when they > are only $9.99/pkg. The new product Depend boost are really a great > item. They don't have the moisture proof backing like the pads you > mentioned. Have only seen tham at Walmart so far. > > Maybe we will have to have you come visit when we get in the new > house. We have been having friends over to eat easy type meals on > the back decks and hopefully we will be living in the whole house. > > Wish we could have made the Boston meeting. We are talking about the > Denver one and since we have two sons there it is looking like it > could > be something we could work out. They want us to fly and I want to > drive...of course they don't understand that one. We went last > Spring and took the three Bichons along...Our sons each had two > Bichons each so there were 7 Bichons together for the 10 days we were > there...Now that was a sight. > > Would like to try the chat part of this. I did click on last night > but no one was on there. I am doing good just to get back to writing > on the list. I am feeling much the need for some support. So know > it is here. Also, in the need for a day without half a dozen more > things that have to be down between two houses. Know our goals have > been pretty heddy the past two years. Time to get the life style down > to something less stressful. > > Happy for you that you had such a nice time traveling. You must have > really made some good memories... > > Always, > and > > -- In shydrager@y..., Werre wrote: > > Hi and , > > > > Good to see you are still around. How is doing. Are you > roasting on > > Hilton Head? Got the house rented for the summer? > > > > Note, the Wal-Mart brand of briefs (diapers) is as good as the CVS > brand and > > cheaper. I think they are called Assurance. ) I can't help on > the condom > > catheters ) I did use Poise pads (Ultra's) inside the diapers at > night. > > The Assurance bed pads are not as good as the Depends bed pads, but > are much > > cheaper. The bed pads DO help, in fact I put them beneath the > sheet as well > > as on top of the sheets to save the mattress. > > > > Take care, Bill Werre > > > > -------------------------------------------------------------------- > -- > > > > david_mary2001 wrote: > > > > > - > > > Hi Carol and others writing on this subject. > > > > > > and I joined the group in 2001 after was Dx. in 1999 > with > > > Shydrager..MSA. Pretty much just been reading the past year..Have > > > taken on couple big projects when this all started with the > thought > > > of being where we want to be when and how this would progress. > > > > > > This response is regarding the bladder problem. started > > > learning how to catherize about the same time of the third Dx. I > am > > > also a RN so have been able to encourage as well as do some pt. > > > teaching along the way...to us both I should add..:>) > > > > > > We pretty much have decide what ever does come down the pike with > > > this it is not a woman thing or a man thing...but MSA thing. So > the > > > bladder and bowel problems are so much easier to handle for both > of > > > us. We also, look and easily find the humor in as much as we > > > can..Even wet beds!!! how about that. Anyway, at the present time > > > has added to the catheter, protective underware with the max > > > protection. We also found a new product couple months ago called > > > Depend Boost liners. Those are great as you can put one inside > the > > > protective underware and gives extra protection...hense...why they > > > are called boost.. They are great to add to the underware at > > > night.We have only been able to find Boost at Walmart. The > underware > > > is CVS brand and fits nicely. He still does use the cath. As the > > > bladder as we know does not empty much on it's own, so when he > caths > > > then has longer dry period...for lack of a better way to say it. > > > > > > We were at the urologist yesterday and have decided to try the > condom > > > Catheter. Dr. feels this would work well if we get the right kind. > > > He knows we are on this support group and suggested we ask you all > > > for suggestions as that would be the best way to get the best > product > > > or where to find the best one. So can any of you help us out > there? > > > Would like to get one this week to try. We will let you know how > > > well we do with this after we select one. Know there is a lot of > > > trial and error with so many things..so with your help you could > save > > > us much error...how about that for confidence in this group.. > > > > > > It has been awhile since I posted on here. So doing this as a > reply > > > as I was not sure how to start a new email..yup need help there > > > too. Plus would like to know how to send a picture to the group. > > > > > > Judy and Mark Whittaker were also friends we met via here and > become > > > good friends with. Judy has since moved back to Ohio, and we miss > > > her and the dogs. We have three Bicons...We call them the Beach > > > Babies...CiCi, Sands and Shell...because we live near the beach. > > > Anyway, have some pictures of our last get together with Judy and > > > poodles and our Bichons before she left and would try to send to > the > > > list if I can figure that out. > > > > > > The main question from this email...is Condom Catheters...so > please > > > let us hear from anyone regarding those. > > > > > > Thanks... > > > and Hanson...Hilton Head Island, S.C. > > > > > > - In shydrager@y..., " Carol Langer " wrote: > > > > Aida, > > > > > > > > It's nice to hear from you. It seems like it's been a while. > > > > > > > > Rob is coping with the transition to Depends on occasion. He's > had > > > a few > > > > " accidents " , mostly in the car when I can't get to a rest area > > > quickly > > > > enough. That was enough to realize that wearing Depends isn't > as > > > bad as > > > > having wet pants. > > > > > > > > He also has problems at night, but they're a little different > from > > > the > > > > others I've seen mentioned. He simply doesn't wake up when he > > > needs to go. > > > > At least not always. The result is a wet bed, so we've started > to > > > use > > > > Depends at night all the time. > > > > > > > > I agree that women adapt to these things better. Not to be > > > graphic, but > > > > we're kind of used to having to wear pads and stuff to catch > things. > > > > > > > > Thanks for sharing all this. It makes it easier to know > others are > > > > struggling too. > > > > > > > > Carol & Rob > > > > Lexington, MA > > > > Toilet Problems > > > > > > > > > > > > > Hello Gillian: > > > > > > > > > > > > > > > Oh, how I know what you mean. Bill will admit to > > > > > feeling woozy, having problems eating, right hand > > > > > tremors, etc. BUT he won't admit to the " toilet > > > > > problem. " It took a syncope while he was standing at > > > > > the toilet to get him to sit down when his bp is low. > > > > > Neurologist told him the bp goes down when he empties > > > > > his bladder. Hence his passing out that time. > > > > > Sometimes, he forgets. I bought some antibacterial > > > > > wipes, and asked him to clean up afterwards. Sometimes > > > > > he remembers, sometimes he doesn't. I also think with > > > > > this disease, they lose some olfatory ability. > > > > > > > > > > 1) I bought a small bath mat that I keep over the tub. > > > > > Wash it every two days. > > > > > 2) Periodically, throw out boxer shorts. > > > > > 3) Let friends know that the best gift are pajamas. > > > > > Therefore, I lay out a new pair every so often. > > > > > 4) Bought a plastic " urinal " which he keeps near the > > > > > bed. I told him this was to avoid tripping over in > > > > > the dark. > > > > > > > > > > Above all, I worried when he wouldn't drink water > > > > > because he didn't want to have to be going to the > > > > > bathroom. When I read the research about water raising > > > > > the bp, then he was convinced. > > > > > > > > > > Bladder control seems very important for the male > > > > > psyche. Okay, guys. I know I am going out on a limb on > > > > > this one. But, I do believe women handle loss of > > > > > bladder control a lot better. Notice the TV > > > > > commercials for incontinence products, they are for > > > > > women. > > > > > > > > > > Aida > > > > > > > > > > __________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 - Bill, Your sure up late. Tonight was the first night for getting to bed before midnight. Midnight is early for us...Ask Judy, we have always been up late people. Another thing that needs to change. is not in a wheelchair yet. He is using a walker in the house, and using a cane outside now. Fatigue has been one of the worst problems. Bladder and Bowel are right up there on the list. He had a bowel impaction we dealt with all last week...the firs time for that. Glad that week is over. Last night, we were struggling with all our wits to get him up from floor between the bedroom and bathroom. I call it a fall, he said " I slid down the wall " also told one of the sons tonight it was a slider. He has a fantastic sense of humor and what a great attitude too. We do laugh a lot. While trying to get him up last night I used his belt while I sat in a chair.. it slipped once and went around his neck. He says oops, think your getting it around my neck...so we had to stop till we both stopped laughing. So while the rest of the world sleeps, who knows what the Hanson's are up to. Yes, we have met Valencia who worked with Mark. We both like her a lot and she said she would do anything we needed to help. So at this moment in time we are getting to know her and she has helped do some sorting and moving some things to the apt. Also, one day last week, she came and cleaned the apt. with the dogs here, while we had to go meet the builder at the new house. So it looks like it can develope into a good relationship by the time we will need more help with . He is getting back to Phy. Therapy and that is going to really help. He drinks everything from a straw as it is difficult to tip his head back. He is on a BiPap at night and that is a real project. He can not get up once he is down in bed, so I do have to help him get up in the morning. has been a picture of health all the years I have known him. So much energy, (we both have always been very high energy people) that it is really difficult to see him with this. We are doing all we can to keep S/S under control. We are hoping to be part of the MSA study. Sent in the form last week so maybe we will hear something soon on that. Judy, told me about the chat few weeks ago, however have not been on it yet. Think we do have AIM.. we are on there as Montucksouth...granddaughter put us on it and spelled Montauk wrong. We are never around much in the afternoon. Although tomorrow we do not have a jammed packed day. I will give this chat thing a try, sure once I can manage it, I will enjoy it. Sorry too, to miss you all on there tonight. Was going to send Judy an email and didn't get that done as I wanted to ready things being talked about on the list. My feeling is a wheelchair might come into the lifestyle within a year. Hoping not, but when starts falling to much, not going to let him get hurt. We have talked about it. Not a favorite subject. I just got him to use the drive carts in the stores the past two months. Now that he is doing that it is fine. In March I could tell he was not going to be able to handle walking through Home Depot, grocery store etc. So we have made the transition to the cart and he does very well. I can always find him, because I hear the beeping sound when he is backing up. Judy, had told me you have new lady friend. Intersting, that you met a nurse. Happy for you. Sounds like you are really doing ok and I am happy for you. Here it is after 1:00am so better wind it up. I wake up every morning about 6:15am...I don't get up right then...but wake up then..LOL. We have two little dog walkers that come at 9am and 7:30pm. 45 min in the am and 1 hour at night. So that has been a great help to us. Plus it gives the dogs a chance to be more social with other people, esp. children. I look forward to getting this chat thing worked out. Know Judy likes it and think I would too. Nice Hug for you Bill, -- In shydrager@y..., Werre wrote: > and , > > Write anytime you want. I generally check my email several times a day. We > were all in the chat room this evening (Judy too). Sorry you missed us. > Which chat room are you using? Do you have Netscape IM on your computer? If > so what is your buddy name? I will be online about 2 PM EDT Thursday after > softball so you can look for " bwerre " on IM and I can show you how to get in > if you have it. > > I am not home on the weekends as I am now dating again. My lady friend lives > north of Baltimore so I am on the road a lot. I met her through a mutual > friend about the first of the year about 5 weeks after Charlotte died, and we > have been dating weekends since. She is still working (a nurse) and the 80 > miles is a hindrance to weekday dates. > > How far has progressed? Is he always in a wheelchair yet? Any > swallowing problems? Judy mentioned you are using Mark's aide now. But she > did not say how much help needed. > > Take care, Bill Werre > > ----------------------------------------------------- > david_mary2001 wrote: > > > - > > Hi Bill, > > Thanks for the nice greeting. It has been a long while > > since posting on here. Life has been way to busy... > > Yes, we are renting our beach home again this summer. In fact > > not sure I told you we started builing a new home right off > > the island...looking over onto Hilton Head and the Inter-Coastal > > waters. Really a beautiful view, and I had my doubts about doing > > all this esp. with putting our home on the short term rental market. > > has loved every bit of all the planning and never thought it > > would go on this long. Hopefully, we are getting closer to a move in > > date. So we are in an apt. near by till it is finished. Due to > > progressing with this disease we decided not to try to keep the > > beach house as income and have it listed for sale now. Life could > > take a turn for the better if that would sell and the new one would > > finish about the same time. We have to start really making changes in > > our busy lifestyle. We seem to think we can still do so many things. > > I will try to send some pictures to you off the list ...soon. Sorry > > you didn't make Hilton Head on your great tour this past Spring. > > Judy, and I would have so like to have you come, however we > > were all over our heads with renting, moving, selling and making big > > changes.. Judy is happy back in Ohio as you know. > > > > Will check out the Walmart brand...although we buy at CVS when they > > are only $9.99/pkg. The new product Depend boost are really a great > > item. They don't have the moisture proof backing like the pads you > > mentioned. Have only seen tham at Walmart so far. > > > > Maybe we will have to have you come visit when we get in the new > > house. We have been having friends over to eat easy type meals on > > the back decks and hopefully we will be living in the whole house. > > > > Wish we could have made the Boston meeting. We are talking about the > > Denver one and since we have two sons there it is looking like it > > could > > be something we could work out. They want us to fly and I want to > > drive...of course they don't understand that one. We went last > > Spring and took the three Bichons along...Our sons each had two > > Bichons each so there were 7 Bichons together for the 10 days we were > > there...Now that was a sight. > > > > Would like to try the chat part of this. I did click on last night > > but no one was on there. I am doing good just to get back to writing > > on the list. I am feeling much the need for some support. So know > > it is here. Also, in the need for a day without half a dozen more > > things that have to be down between two houses. Know our goals have > > been pretty heddy the past two years. Time to get the life style down > > to something less stressful. > > > > Happy for you that you had such a nice time traveling. You must have > > really made some good memories... > > > > Always, > > and > > > > -- In shydrager@y..., Werre wrote: > > > Hi and , > > > > > > Good to see you are still around. How is doing. Are you > > roasting on > > > Hilton Head? Got the house rented for the summer? > > > > > > Note, the Wal-Mart brand of briefs (diapers) is as good as the CVS > > brand and > > > cheaper. I think they are called Assurance. ) I can't help on > > the condom > > > catheters ) I did use Poise pads (Ultra's) inside the diapers at > > night. > > > The Assurance bed pads are not as good as the Depends bed pads, but > > are much > > > cheaper. The bed pads DO help, in fact I put them beneath the > > sheet as well > > > as on top of the sheets to save the mattress. > > > > > > Take care, Bill Werre > > > > > > ---------------------------------------------------------------- ---- > > -- > > > > > > david_mary2001 wrote: > > > > > > > - > > > > Hi Carol and others writing on this subject. > > > > > > > > and I joined the group in 2001 after was Dx. in 1999 > > with > > > > Shydrager..MSA. Pretty much just been reading the past year..Have > > > > taken on couple big projects when this all started with the > > thought > > > > of being where we want to be when and how this would progress. > > > > > > > > This response is regarding the bladder problem. started > > > > learning how to catherize about the same time of the third Dx. I > > am > > > > also a RN so have been able to encourage as well as do some pt. > > > > teaching along the way...to us both I should add..:>) > > > > > > > > We pretty much have decide what ever does come down the pike with > > > > this it is not a woman thing or a man thing...but MSA thing. So > > the > > > > bladder and bowel problems are so much easier to handle for both > > of > > > > us. We also, look and easily find the humor in as much as we > > > > can..Even wet beds!!! how about that. Anyway, at the present time > > > > has added to the catheter, protective underware with the max > > > > protection. We also found a new product couple months ago called > > > > Depend Boost liners. Those are great as you can put one inside > > the > > > > protective underware and gives extra protection...hense...why they > > > > are called boost.. They are great to add to the underware at > > > > night.We have only been able to find Boost at Walmart. The > > underware > > > > is CVS brand and fits nicely. He still does use the cath. As the > > > > bladder as we know does not empty much on it's own, so when he > > caths > > > > then has longer dry period...for lack of a better way to say it. > > > > > > > > We were at the urologist yesterday and have decided to try the > > condom > > > > Catheter. Dr. feels this would work well if we get the right kind. > > > > He knows we are on this support group and suggested we ask you all > > > > for suggestions as that would be the best way to get the best > > product > > > > or where to find the best one. So can any of you help us out > > there? > > > > Would like to get one this week to try. We will let you know how > > > > well we do with this after we select one. Know there is a lot of > > > > trial and error with so many things..so with your help you could > > save > > > > us much error...how about that for confidence in this group.. > > > > > > > > It has been awhile since I posted on here. So doing this as a > > reply > > > > as I was not sure how to start a new email..yup need help there > > > > too. Plus would like to know how to send a picture to the group. > > > > > > > > Judy and Mark Whittaker were also friends we met via here and > > become > > > > good friends with. Judy has since moved back to Ohio, and we miss > > > > her and the dogs. We have three Bicons...We call them the Beach > > > > Babies...CiCi, Sands and Shell...because we live near the beach. > > > > Anyway, have some pictures of our last get together with Judy and > > > > poodles and our Bichons before she left and would try to send to > > the > > > > list if I can figure that out. > > > > > > > > The main question from this email...is Condom Catheters...so > > please > > > > let us hear from anyone regarding those. > > > > > > > > Thanks... > > > > and Hanson...Hilton Head Island, S.C. > > > > > > > > - In shydrager@y..., " Carol Langer " wrote: > > > > > Aida, > > > > > > > > > > It's nice to hear from you. It seems like it's been a while. > > > > > > > > > > Rob is coping with the transition to Depends on occasion. He's > > had > > > > a few > > > > > " accidents " , mostly in the car when I can't get to a rest area > > > > quickly > > > > > enough. That was enough to realize that wearing Depends isn't > > as > > > > bad as > > > > > having wet pants. > > > > > > > > > > He also has problems at night, but they're a little different > > from > > > > the > > > > > others I've seen mentioned. He simply doesn't wake up when he > > > > needs to go. > > > > > At least not always. The result is a wet bed, so we've started > > to > > > > use > > > > > Depends at night all the time. > > > > > > > > > > I agree that women adapt to these things better. Not to be > > > > graphic, but > > > > > we're kind of used to having to wear pads and stuff to catch > > things. > > > > > > > > > > Thanks for sharing all this. It makes it easier to know > > others are > > > > > struggling too. > > > > > > > > > > Carol & Rob > > > > > Lexington, MA > > > > > Toilet Problems > > > > > > > > > > > > > > > > Hello Gillian: > > > > > > > > > > > > > > > > > > Oh, how I know what you mean. Bill will admit to > > > > > > feeling woozy, having problems eating, right hand > > > > > > tremors, etc. BUT he won't admit to the " toilet > > > > > > problem. " It took a syncope while he was standing at > > > > > > the toilet to get him to sit down when his bp is low. > > > > > > Neurologist told him the bp goes down when he empties > > > > > > his bladder. Hence his passing out that time. > > > > > > Sometimes, he forgets. I bought some antibacterial > > > > > > wipes, and asked him to clean up afterwards. Sometimes > > > > > > he remembers, sometimes he doesn't. I also think with > > > > > > this disease, they lose some olfatory ability. > > > > > > > > > > > > 1) I bought a small bath mat that I keep over the tub. > > > > > > Wash it every two days. > > > > > > 2) Periodically, throw out boxer shorts. > > > > > > 3) Let friends know that the best gift are pajamas. > > > > > > Therefore, I lay out a new pair every so often. > > > > > > 4) Bought a plastic " urinal " which he keeps near the > > > > > > bed. I told him this was to avoid tripping over in > > > > > > the dark. > > > > > > > > > > > > Above all, I worried when he wouldn't drink water > > > > > > because he didn't want to have to be going to the > > > > > > bathroom. When I read the research about water raising > > > > > > the bp, then he was convinced. > > > > > > > > > > > > Bladder control seems very important for the male > > > > > > psyche. Okay, guys. I know I am going out on a limb on > > > > > > this one. But, I do believe women handle loss of > > > > > > bladder control a lot better. Notice the TV > > > > > > commercials for incontinence products, they are for > > > > > > women. > > > > > > > > > > > > Aida > > > > > > > > > > > > __________________________________________________ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 Dear and : No, I really don't remember the brand of Condom Catheters we used. I too joked about having to buy large. I said I had never known how lucky I was in all the fifty years we were married. No, I do not live in Texas; that is another Barbara. I live in Newport Beach in California and have never even visited Texas even though my family lived in New Mexico for years. Medicare didn't mail us the condoms. Our doctor wrote a prescription and our local Supply House delivered them and billed Medicare and our Supplement. Good Luck in finding the brand and size that works best for you. I think ours were called Freedom or something like that. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 --- Hi Barb, Thanks for the info on the process to get them. Will help us out for sure. Thanks for the humor too. and I both had the same thought regarding your comment after fifty years not knowing how lucky you were...great minds sometimes think a like haha.. We of course hope you were not only aware of how lucky you were, but in 50 years learned to take advantage of such good luck. You would have to know and how he thinks to appreciate the thought. Anyway, thanks for the info, we will put it use. Always, and In shydrager@y..., kmcrae@a... wrote: > Dear and : > No, I really don't remember the brand of Condom Catheters we used. I > too joked about having to buy large. I said I had never known how lucky I was > in all the fifty years we were married. > No, I do not live in Texas; that is another Barbara. I live in Newport > Beach in California and have never even visited Texas even though my family > lived in New Mexico for years. > Medicare didn't mail us the condoms. Our doctor wrote a prescription > and our local Supply House delivered them and billed Medicare and our > Supplement. > Good Luck in finding the brand and size that works best for you. I > think ours were called Freedom or something like that. > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 , Have a good time on vacation. Watch out for the 70 foot waves...lol Remember the SUNBLOCK!! Re: and Tommy is doing great...if he would just sleep through the night! We go back to Dr. H May 20th. He is standing and starting to cruise. I too am worried about his dorsiflexion but will see what the doctor says next month. He will be a year old on Saturday. How time flies. We will be going on a cruise Sunday with all of my in-laws. So I am busy packing. Do you think I can carry on the DBB or will the screeners think it is some sort of weapon. I am too paranoid to check it as it could get lost and I would freak! & Tommy Lee > Thanks , tell me about it. How is my little rocker doing anyway? > > PS. still screams at every visit. > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 > Hiedi, I can send it anytime. You can e-mail at chamberslm@... with the fax #. I saved everything from SSDI so if there is anything else you need let me know and I will try to locate it. The Dr's questionaire was only two pages so it will be a short fax. I also would be willing to post it on the website if anyone wants to see it or I can fax it to whomever wants to see it. I have a great calling plan so I can send all the long distance faxes or calls I want for one low monthly price. Thinking back I started to remember other things like one time they called me to ask how I cared for my children and that is when I sent the notarized letter from my mother. I also had my sons pre-school teacher write a short note explaining what my son had told her about my health and a little explaination regarding how my illness was affecting. She wrote a very nice note saying that my son wanted his mommies tummy fixed so she can give him a sister and take him fishing alot again. Thinking about all this makes me kind of deppressed because I think about how much my kids are missing out on. It is a major event if I am feeling weel enough to take them to the movies. I take more potty breaks at the movies than my boys do and the youngest is only 3. I just thank GOD for the good days, we actually managed two day fishing trips this past summer. Our main goal for the winter is to go to the snow. That will be a 2 1/2 drive since we live in So. Calif. Maybe we will be able to swing it financially and rent a cabin for a long weekend and do some fishing at Big Bear. I am keeping my fingers crossed. It breaks my heart to hear my 6 yr old say that maybe if I can't take them, their daddy can take the neighbors mom with them. Can you hear my heart breaking? Anyway let me know when to send it, I am on the west coast so give me a west coast time or maybe if you include your phone number I can just call you tommorrow before I send it. Goood night to all, it's time for bedtime stories. Simi Valley, CA > > Date: 2003/11/10 Mon PM 08:40:26 PST > To: pancreatitis > Subject: and > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Hi , Dr. H said 's feet look perfect. I was concerned with the dorsiflexion, but he said they were perfect and he wished all his patients feet looked this good. So I am very excited about that. I told him we are very religious about the shoes and bar. We haven't missed one night yet. He said you can really tell and it pays off. So my only advice to all the newer parents just starting the FAB: stick to it, don't give up and NEVER cheat. We are now down to 6 months between visits. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 I am so happy for you and . Thank God we found Dr. Herzenberg!! and Tommy Lee > Hi , > Dr. H said 's feet look perfect. I was concerned with the > dorsiflexion, but he said they were perfect and he wished all his patients > feet looked this good. So I am very excited about that. I told him we > are very religious about the shoes and bar. We haven't missed one night > yet. He said you can really tell and it pays off. > So my only advice to all the newer parents just starting the FAB: stick to > it, don't give up and NEVER cheat. > > We are now down to 6 months between visits. > > > > > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Thanks , tell me about it. How is my little rocker doing anyway? PS. still screams at every visit. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Tommy is doing great...if he would just sleep through the night! We go back to Dr. H May 20th. He is standing and starting to cruise. I too am worried about his dorsiflexion but will see what the doctor says next month. He will be a year old on Saturday. How time flies. We will be going on a cruise Sunday with all of my in-laws. So I am busy packing. Do you think I can carry on the DBB or will the screeners think it is some sort of weapon. I am too paranoid to check it as it could get lost and I would freak! & Tommy Lee > Thanks , tell me about it. How is my little rocker doing anyway? > > PS. still screams at every visit. > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
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