Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 In a message dated 11/30/2001 4:14:12 PM Central Standard Time, butterflypower@... writes: > and heavy and I couldn't move them or get > out of bed. Is this a part of CMT or not? > Has anyone had this happen? > It's never happened to me before and I imagine , That happens to me when I do way more than I should. The next few days are rough. I have to pick up my legs to get out of bed. I haven't had it happen for a while, I guess I've been pacing myself better. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 I usually have a lot of pain and stiffness when I first get up especially when I have been on my feet to long. I usually force my self up and I walk a short distance then rest for a minute then up again. I guess that I am just stubborn. > -----Original Message----- > From: butterflypower@... [sMTP:butterflypower@...] > Sent: Friday, November 30, 2001 6:01 PM > > Subject: [] getting out of bed > > Hey, > > I have a question based on an experience I had. > Yesterday I woke up and my legs were numb > and heavy and I couldn't move them or get > out of bed. Is this a part of CMT or not? > Has anyone had this happen? > It's never happened to me before and I imagine > it was CMT related but I am not sure. > If you could let me know I'd appreciate it. > > > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > > Foundation: http://www..org > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Big hug Like others I think this could be part of your CMT and maybe it is your body saying 'hey let's take it easy.' Living with CMT is a continuous learning curve because things can happen to our bodies without us being totally conscious of it but our bodies are and they learn to compensate in many ways without us knowing. At your age you really need to see a doctor who knows everything about CMT and you need Paolo's book to share with your doctors. It may sound silly for me to say this but I know for a fact that if I'd had proper care and dare I say Paolo's book I know that I would not be in the situation I am today. Your body is so precious, your mobility is too, please read and learn and that will give you the best chance in life that is available today. Take care sweetheart I know it's hard but we're there to help you and give you the best chance we can. Love, hugs and cuddles Sue X The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: butterflypower@... Sent: Friday, November 30, 2001 11:01 PM Subject: [] getting out of bed Hey, I have a question based on an experience I had. Yesterday I woke up and my legs were numb and heavy and I couldn't move them or get out of bed. Is this a part of CMT or not? Has anyone had this happen? It's never happened to me before and I imagine it was CMT related but I am not sure. If you could let me know I'd appreciate it. ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Sue- you are so encouraging!! Tell me about Paolos book. I have never heard of this before. I am 41 and I am pretty ignorant about CMT although I have been living with this since I was 11 years old. Traci > -----Original Message----- > From: Sue Horder-Mason [sMTP:sue@...] > Sent: Friday, November 30, 2001 7:19 PM > > Subject: Re: [] getting out of bed > > Big hug > Like others I think this could be part of your CMT and maybe it is your > body saying 'hey let's take it easy.' > Living with CMT is a continuous learning curve because things can happen > to our bodies without us being totally conscious of it but our bodies are > and they learn to compensate in many ways without us knowing. > At your age you really need to see a doctor who knows everything about CMT > and you need Paolo's book to share with your doctors. > It may sound silly for me to say this but I know for a fact that if I'd > had proper care and dare I say Paolo's book I know that I would not be in > the situation I am today. > Your body is so precious, your mobility is too, please read and learn and > that will give you the best chance in life that is available today. > Take care sweetheart I know it's hard but we're there to help you and give > you the best chance we can. > Love, hugs and cuddles > Sue X > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my > work, and my God. " - Helen Keller > > ----- Original Message ----- > From: butterflypower@... > > Sent: Friday, November 30, 2001 11:01 PM > Subject: [] getting out of bed > > > Hey, > > I have a question based on an experience I had. > Yesterday I woke up and my legs were numb > and heavy and I couldn't move them or get > out of bed. Is this a part of CMT or not? > Has anyone had this happen? > It's never happened to me before and I imagine > it was CMT related but I am not sure. > If you could let me know I'd appreciate it. > > > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Traci we're twins. I am 40 and thirteen months. Paolo's book is wonderful because what he has done is broken down the degenerative stages of CMT into seven stages but he doesn't leave it at that he actually gives tried and tested methods as to how to help elevate the symptoms therefore giving us the best chance available today of maintaining mobility. My CMT has been untreated all my life and I really believe the reason I can't walk is not necessarily due to my CMT but due to secondary symptoms of CMT caused by misdiagnosis and lack of treatment. Something that could have been avoided if the medics in the UK were brave enough to admit they made a mistake - that's my gripe but you really do need Paolo's book and shove it under the noses of your doctors and emphasis that Paolo does have CMT and to put it crudely he is not asking us to do things that he hasn't tried and tested because he himself has CMT. Paolo's book can be bought over the internet at http://www.stradeservizi.it/cmt.htm . I know I do keep pushing it and I'm not on commission (you listening Paolo) but I really do believe in this book and carry it everywhere. Doctors believe in the myths that have arisen due to the ignorance of CMT one woman was told it was due syphilis that is taking it to extremes but it does show the lack of understanding of the basics of CMT and I for one am more than happy to trust someone who knows professionally the technicalities of the disease but also the effect it does have on a person - you! The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Denman, Traci M. ' ' Sent: Saturday, December 01, 2001 12:36 AM Subject: RE: [] getting out of bed Sue- you are so encouraging!! Tell me about Paolos book. I have never heard of this before. I am 41 and I am pretty ignorant about CMT although I have been living with this since I was 11 years old. Traci > -----Original Message----- > From: Sue Horder-Mason [sMTP:sue@...] > Sent: Friday, November 30, 2001 7:19 PM > > Subject: Re: [] getting out of bed > > Big hug > Like others I think this could be part of your CMT and maybe it is your > body saying 'hey let's take it easy.' > Living with CMT is a continuous learning curve because things can happen > to our bodies without us being totally conscious of it but our bodies are > and they learn to compensate in many ways without us knowing. > At your age you really need to see a doctor who knows everything about CMT > and you need Paolo's book to share with your doctors. > It may sound silly for me to say this but I know for a fact that if I'd > had proper care and dare I say Paolo's book I know that I would not be in > the situation I am today. > Your body is so precious, your mobility is too, please read and learn and > that will give you the best chance in life that is available today. > Take care sweetheart I know it's hard but we're there to help you and give > you the best chance we can. > Love, hugs and cuddles > Sue X > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my > work, and my God. " - Helen Keller > > ----- Original Message ----- > From: butterflypower@... > > Sent: Friday, November 30, 2001 11:01 PM > Subject: [] getting out of bed > > > Hey, > > I have a question based on an experience I had. > Yesterday I woke up and my legs were numb > and heavy and I couldn't move them or get > out of bed. Is this a part of CMT or not? > Has anyone had this happen? > It's never happened to me before and I imagine > it was CMT related but I am not sure. > If you could let me know I'd appreciate it. > > > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Sue- I had surgery when I was twelve. They lowered my insteps and cut and lengthened my tendons. I can still walk but I do have difficulty with climbing stairs and hills but I thank God that I am still mobile. I have occasional trouble with dropping things but I can type and I can still sew that is such a blessing to me. I will have to order that book. Thanks so much. Traci > -----Original Message----- > From: Sue Horder-Mason [sMTP:sue@...] > Sent: Friday, November 30, 2001 8:03 PM > > Subject: Re: [] getting out of bed > > Traci we're twins. I am 40 and thirteen months. Paolo's book is wonderful > because what he has done is broken down the degenerative stages of CMT > into seven stages but he doesn't leave it at that he actually gives tried > and tested methods as to how to help elevate the symptoms therefore giving > us the best chance available today of maintaining mobility. > My CMT has been untreated all my life and I really believe the reason I > can't walk is not necessarily due to my CMT but due to secondary symptoms > of CMT caused by misdiagnosis and lack of treatment. Something that could > have been avoided if the medics in the UK were brave enough to admit they > made a mistake - that's my gripe but you really do need Paolo's book and > shove it under the noses of your doctors and emphasis that Paolo does have > CMT and to put it crudely he is not asking us to do things that he hasn't > tried and tested because he himself has CMT. > Paolo's book can be bought over the internet at > http://www.stradeservizi.it/cmt.htm . I know I do keep pushing it and I'm > not on commission (you listening Paolo) but I really do believe in this > book and carry it everywhere. > Doctors believe in the myths that have arisen due to the ignorance of CMT > one woman was told it was due syphilis that is taking it to extremes but > it does show the lack of understanding of the basics of CMT and I for one > am more than happy to trust someone who knows professionally the > technicalities of the disease but also the effect it does have on a person > - you! > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my > work, and my God. " - Helen Keller > > ----- Original Message ----- > From: Denman, Traci M. > ' ' > Sent: Saturday, December 01, 2001 12:36 AM > Subject: RE: [] getting out of bed > > > Sue- you are so encouraging!! Tell me about Paolos book. I have never > heard of this before. I am 41 and I am pretty ignorant about CMT > although I > have been living with this since I was 11 years old. Traci > > > -----Original Message----- > > From: Sue Horder-Mason [sMTP:sue@...] > > Sent: Friday, November 30, 2001 7:19 PM > > > > Subject: Re: [] getting out of bed > > > > Big hug > > Like others I think this could be part of your CMT and maybe it is > your > > body saying 'hey let's take it easy.' > > Living with CMT is a continuous learning curve because things can > happen > > to our bodies without us being totally conscious of it but our bodies > are > > and they learn to compensate in many ways without us knowing. > > At your age you really need to see a doctor who knows everything about > CMT > > and you need Paolo's book to share with your doctors. > > It may sound silly for me to say this but I know for a fact that if > I'd > > had proper care and dare I say Paolo's book I know that I would not be > in > > the situation I am today. > > Your body is so precious, your mobility is too, please read and learn > and > > that will give you the best chance in life that is available today. > > Take care sweetheart I know it's hard but we're there to help you and > give > > you the best chance we can. > > Love, hugs and cuddles > > Sue X > > The important thing is never to stop questioning. > > Website www.horder-mason.freeserve.co.uk > > Freelance Writer and CMTer > > > > " I Thank God for my handicaps, for through them, I have found myself, > my > > work, and my God. " - Helen Keller > > > > ----- Original Message ----- > > From: butterflypower@... > > > > Sent: Friday, November 30, 2001 11:01 PM > > Subject: [] getting out of bed > > > > > > Hey, > > > > I have a question based on an experience I had. > > Yesterday I woke up and my legs were numb > > and heavy and I couldn't move them or get > > out of bed. Is this a part of CMT or not? > > Has anyone had this happen? > > It's never happened to me before and I imagine > > it was CMT related but I am not sure. > > If you could let me know I'd appreciate it. > > > > > > ________________________________________________________________ > > GET INTERNET ACCESS FROM JUNO! > > Juno offers FREE or PREMIUM Internet access for less! > > Join Juno today! For your FREE software, visit: > > http://dl.www.juno.com/get/web/. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 You won't regret buying Paolo's book and if you have any problems with it either email be privately on sue@... or post it on the sight Read, enjoy and learn you've taken your first step to controlling and managing your CMT. But we don't dump you we are always there for you. Love and hugs Sue X The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Denman, Traci M. ' ' Sent: Saturday, December 01, 2001 1:08 AM Subject: RE: [] getting out of bed Sue- I had surgery when I was twelve. They lowered my insteps and cut and lengthened my tendons. I can still walk but I do have difficulty with climbing stairs and hills but I thank God that I am still mobile. I have occasional trouble with dropping things but I can type and I can still sew that is such a blessing to me. I will have to order that book. Thanks so much. Traci > -----Original Message----- > From: Sue Horder-Mason [sMTP:sue@...] > Sent: Friday, November 30, 2001 8:03 PM > > Subject: Re: [] getting out of bed > > Traci we're twins. I am 40 and thirteen months. Paolo's book is wonderful > because what he has done is broken down the degenerative stages of CMT > into seven stages but he doesn't leave it at that he actually gives tried > and tested methods as to how to help elevate the symptoms therefore giving > us the best chance available today of maintaining mobility. > My CMT has been untreated all my life and I really believe the reason I > can't walk is not necessarily due to my CMT but due to secondary symptoms > of CMT caused by misdiagnosis and lack of treatment. Something that could > have been avoided if the medics in the UK were brave enough to admit they > made a mistake - that's my gripe but you really do need Paolo's book and > shove it under the noses of your doctors and emphasis that Paolo does have > CMT and to put it crudely he is not asking us to do things that he hasn't > tried and tested because he himself has CMT. > Paolo's book can be bought over the internet at > http://www.stradeservizi.it/cmt.htm . I know I do keep pushing it and I'm > not on commission (you listening Paolo) but I really do believe in this > book and carry it everywhere. > Doctors believe in the myths that have arisen due to the ignorance of CMT > one woman was told it was due syphilis that is taking it to extremes but > it does show the lack of understanding of the basics of CMT and I for one > am more than happy to trust someone who knows professionally the > technicalities of the disease but also the effect it does have on a person > - you! > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my > work, and my God. " - Helen Keller > > ----- Original Message ----- > From: Denman, Traci M. > ' ' > Sent: Saturday, December 01, 2001 12:36 AM > Subject: RE: [] getting out of bed > > > Sue- you are so encouraging!! Tell me about Paolos book. I have never > heard of this before. I am 41 and I am pretty ignorant about CMT > although I > have been living with this since I was 11 years old. Traci > > > -----Original Message----- > > From: Sue Horder-Mason [sMTP:sue@...] > > Sent: Friday, November 30, 2001 7:19 PM > > > > Subject: Re: [] getting out of bed > > > > Big hug > > Like others I think this could be part of your CMT and maybe it is > your > > body saying 'hey let's take it easy.' > > Living with CMT is a continuous learning curve because things can > happen > > to our bodies without us being totally conscious of it but our bodies > are > > and they learn to compensate in many ways without us knowing. > > At your age you really need to see a doctor who knows everything about > CMT > > and you need Paolo's book to share with your doctors. > > It may sound silly for me to say this but I know for a fact that if > I'd > > had proper care and dare I say Paolo's book I know that I would not be > in > > the situation I am today. > > Your body is so precious, your mobility is too, please read and learn > and > > that will give you the best chance in life that is available today. > > Take care sweetheart I know it's hard but we're there to help you and > give > > you the best chance we can. > > Love, hugs and cuddles > > Sue X > > The important thing is never to stop questioning. > > Website www.horder-mason.freeserve.co.uk > > Freelance Writer and CMTer > > > > " I Thank God for my handicaps, for through them, I have found myself, > my > > work, and my God. " - Helen Keller > > > > ----- Original Message ----- > > From: butterflypower@... > > > > Sent: Friday, November 30, 2001 11:01 PM > > Subject: [] getting out of bed > > > > > > Hey, > > > > I have a question based on an experience I had. > > Yesterday I woke up and my legs were numb > > and heavy and I couldn't move them or get > > out of bed. Is this a part of CMT or not? > > Has anyone had this happen? > > It's never happened to me before and I imagine > > it was CMT related but I am not sure. > > If you could let me know I'd appreciate it. > > > > > > ________________________________________________________________ > > GET INTERNET ACCESS FROM JUNO! > > Juno offers FREE or PREMIUM Internet access for less! > > Join Juno today! For your FREE software, visit: > > http://dl.www.juno.com/get/web/. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 Hey there girlfriend - In a bed with no rails, you just " log roll " over to your side and use your arm to kind of push yourself up while swinging your legs over to the side. It sounds harder to do than it really is, but you'll see. It all falls into place and works out. Really it does! :-)) Love ya - > > Hi.. > As I have been getting the odds and ends I will need once I > get home from the hospital, I started wondering about getting > out of bed. In the hospital you have the bed rails to pull your > self up with, so once your home, well, how do you manage to haul > yourself up? I know the first go round way back when, I was much > younger, alot more fiesty and had no problems. Now that I am way older > and not so fiesty (just stubborn), wondering if I should get something > to help me. Any info, stories, advice, sure would like to hear it! > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 .....Oh yeah....Marty is right....my favorite post op item was indeed my nice " slidey " PJ's. A couple weeks ago www.intimo.com was having a sale. Not too expensive and they wear like iron. also come out of the wash nicely. Invest!! Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Thanks for the input. I do remember doing the log roll to both roll over and get out of bed. When I was thinking about it all, I remembered vividly the difficulty getting up and down after 3 c-sections. Now to have surgery that includes both front and back incisons, just kinda put the uh-oh in my mind. I am worried about being weak as Bonnie said. But I am not going to dwell on it, will take it as it comes. Thanks for the link to the silky jammies Cam. I am heading there next! I have already gotten a few pairs, but am thinking might be nice to have more. Have ordered a grabber from the site that was posted on here to. Am shopping around for a raised potty. Going for a physical next week to be sure all is in working order. Cleaned my closet and goodwilled all my shoes that were not flats *sob*. Man I had alot! Consoled myself by of course, doing some shoe shopping! I did talk to Ann at Dr. Hu's office a week ago, and I am not just penciled in any more, she put me on the surgical schedule while I was talking with her. Wow...this is really gonna happen!!! ~~doing a little happy dance~~ Hugs all around, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Hi , I had the very same questions as you did for both my fusions. In the hospital, I had a bed rail that was alongside just the upper half of the bed. This made it very easy to swing my legs without hitting the rail on the bottom half. But when I got home, I found that when I laid on my right side then I could use my left arm to push my torso up. When I did this at the same time as swinging my legs, I was surprised to find that it worked very well. Once I was sitting upright, standing was just a matter of scootching my rear as far forward as I could which centers my torso over my legs. It was then easy to stand up. Of course, having a rail on your home bed would make it easier to get up, but you really don't need it. In fact, you'll need to wean yourself of the rail so it might as well be now. Lastly, if your soft vertebrae would be hurt by getting up without a rail, by all means get one. Take care, > > Does anyone have a suggestion as far as the safest way to get out of > bed following surgery? I just had surgery Tues. Oct 28th. today is the > first day home from the hospital. I have a regular bed and I don't > know if I should get an add on handrail or something. The surgery went > well ( except for the pain!). The doctor said two of my vertebrae were > very soft so he wants me to be extra careful until the fusion is > complete. > > Thank you L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 That's exactly how I was taught in rehab too. Now that I'm almost a year & a half out, I still use it! It's the easiest on my spine and since my legs don't work very well, I can push them off the bed rather easily from that position. My home nurses & physical therapists always compliment me when they see that I use that technique. They mostly see older patients who are quite cranky when trying to teach a new, safer way of getting up in bed > > > > Does anyone have a suggestion as far as the safest way to get out of > > bed following surgery? I just had surgery Tues. Oct 28th. today is the > > first day home from the hospital. I have a regular bed and I don't > > know if I should get an add on handrail or something. The surgery went > > well ( except for the pain!). The doctor said two of my vertebrae were > > very soft so he wants me to be extra careful until the fusion is > > complete. > > > > Thank you L > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2008 Report Share Posted November 5, 2008 -I'm 6 mos. post-op and have a small oval shaped hand rail (attached to the wooden box/box springs) under my mattress, about 2 ft. down from the top of my bed. I don't always use it but I'll probably keep it there from here out, just in case. I sleep in a single bed w/ a dog so it helps keep her from rolling off the bed too!! camille -- In , " Gross " <lgross1@...> wrote: > > I still keep my walker beside my bed. It comes in handy as something to grab on to & assist with the initial lift as I raise up, shift around to get my feet on the floor. It allows me to utilize my arm strength as my back is usually sore and extremely stiff after being down for a while. That's about the only time I use the walker this far out (1 1/2 yr.) after my revision surgery. > G > [ ] Re: Getting out of bed > > > , > Welcome to the group. Wow...surgury on tuesday and home today would be > a record for most of us....I assume that you found us because you were > treated for flatback or a scoliosis related condition? > > Thanks to for being able to quickly pull up that document that > details the way most of us were taught to roll and get out of be in the > hospital....but of course in your case it sounds like you didn't have > too much time for physical or occupational therapy! > > Please be careful and get in touch with your surgeon's office if you > have any questions or if it seems like you are having any unusual > symptoms or if your pain is not well controlled. > > Where in the countty are you, and who was your surgeon? > > Take Care, Cam > Quote Link to comment Share on other sites More sharing options...
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