Guest guest Posted January 11, 2011 Report Share Posted January 11, 2011 Does anyone know of a hand warmer that plugs into the electrical socket on your car's dash? My hands get terribly cold and those warmers you put in the microwave lose their pizzazz after a couple of hours. L. On 11-Jan-11, at 11:44 AM, MargaretL wrote: > , > > I am so sorry you are experiencing all of these things at such an > early time in your life. I have CMT 1B and am 60 yrs. old and I have > been going through what you're experiencing since my CMT became > worse at age 50. > > The braces you're referring to are The Helios out of Las Vegas. They > are very expensive $6,000 for each one! My orthotist hooked me up w/ > an afoot that is awesome. I don't know what it's called, but it has > a small metal shaped foot that goes into your shoe first and > continues up the back up your leg. It does not go to the knee, so > you can bend your leg better than w/that plastic junk. Near the top > it has soft padding that adheres to the brace with velcro and then a > velcro'd strap goes around the top and near the ankle to keep you > attached to the brace. > > My gait is so bad w/out this brace, but when I put it on and wear > slacks, no one call tell I have a problem! In the summer when I wear > shorter pants, I have people/friends ask when I broke my leg! They > had no idea I had any kind of walking issues. Insurance does pay for > these and they are not that expensive. Oh, and then you need the > orthotist to mold an orthotic that will fit in you shoe over this. > That way you don't feel the metal and you're very secure and snug in > your shoes. > > I worked at a law school when I had to go on disability as age 48. > It is nothing to be turned down the first time! They don't know much > about CMT and think we'll go away. Not! You keep applying on your > own and w/your doctor (preferably a neurologist) and after 2 > denials, you can hire an attorney who specializes in disability > insurance. DO not hire them until you've tried all this on your own > b/cause they will be able to claim up to 1/3 of your first check, > which will be a fairly large check, as it will include back payments > from the first time and first month you applied. If they only go w/ > you to a disability hearing, which is done for almost everyone, they > can only claim a very small part of that $ b/cause you will have > done all the long term work yourself. Don't be afraid to ask for a > hearing, and don't be afraid to then hire a reputable attorney to go > with you. > > Give your attorney all of your symptoms and be very up front w/your > issues. Take pix of your bloody knees, scars, trips to ER. All of > this will help. Also go to the CMTA site and copy what CMT is. They > have great descriptions and if you don't subscribe to that > newsletter, you should! > > Also, did you know you are eligible to me seen by the MDA (Muscular > Dystrophy Association—Jerry's Kids)? Yep, we're one of his kids. > Look for your nearest MDA clinic. I go to Duke's MDA, since I live > in NC. They are so helpful and they will help you immensely. > > As for cold hands. I have those too! Lyrica is my best hope and it > does help some. You should go to Restoration Hardware and buy their > hand warmers. Just keep them in your pockets. They're great. Look > for them online if you don't have that store near you. > > Best of luck. Feel free to contact me if I can help in any way! > Mags > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2011 Report Share Posted January 11, 2011 , This has been the coldest on record in the north of England. I would also love my steering wheel warmed up. Some models have this tech already. Eilish On 11-Jan-11, at 11:44 AM, MargaretL wrote: > , > > I am so sorry you are experiencing all of these things at such an > early time in your life. I have CMT 1B and am 60 yrs. old and I have > been going through what you're experiencing since my CMT became > worse at age 50. > > The braces you're referring to are The Helios out of Las Vegas. They > are very expensive $6,000 for each one! My orthotist hooked me up w/ > an afoot that is awesome. I don't know what it's called, but it has > a small metal shaped foot that goes into your shoe first and > continues up the back up your leg. It does not go to the knee, so > you can bend your leg better than w/that plastic junk. Near the top > it has soft padding that adheres to the brace with velcro and then a > velcro'd strap goes around the top and near the ankle to keep you > attached to the brace. > > My gait is so bad w/out this brace, but when I put it on and wear > slacks, no one call tell I have a problem! In the summer when I wear > shorter pants, I have people/friends ask when I broke my leg! They > had no idea I had any kind of walking issues. Insurance does pay for > these and they are not that expensive. Oh, and then you need the > orthotist to mold an orthotic that will fit in you shoe over this. > That way you don't feel the metal and you're very secure and snug in > your shoes. > > I worked at a law school when I had to go on disability as age 48. > It is nothing to be turned down the first time! They don't know much > about CMT and think we'll go away. Not! You keep applying on your > own and w/your doctor (preferably a neurologist) and after 2 > denials, you can hire an attorney who specializes in disability > insurance. DO not hire them until you've tried all this on your own > b/cause they will be able to claim up to 1/3 of your first check, > which will be a fairly large check, as it will include back payments > from the first time and first month you applied. If they only go w/ > you to a disability hearing, which is done for almost everyone, they > can only claim a very small part of that $ b/cause you will have > done all the long term work yourself. Don't be afraid to ask for a > hearing, and don't be afraid to then hire a reputable attorney to go > with you. > > Give your attorney all of your symptoms and be very up front w/your > issues. Take pix of your bloody knees, scars, trips to ER. All of > this will help. Also go to the CMTA site and copy what CMT is. They > have great descriptions and if you don't subscribe to that > newsletter, you should! > > Also, did you know you are eligible to me seen by the MDA (Muscular > Dystrophy Association—Jerry's Kids)? Yep, we're one of his kids. > Look for your nearest MDA clinic. I go to Duke's MDA, since I live > in NC. They are so helpful and they will help you immensely. > > As for cold hands. I have those too! Lyrica is my best hope and it > does help some. You should go to Restoration Hardware and buy their > hand warmers. Just keep them in your pockets. They're great. Look > for them online if you don't have that store near you. > > Best of luck. Feel free to contact me if I can help in any way! > Mags > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.