Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 Hi. I first went to my regular doctor who wrote a 'prescription' for the orthotist. Then I went to the orthotist, a guy in Santa , Stefan Moser. The website of his is http://www.swissbalance. com Stefan took the 'prescription' from me, asked questions, saw how I walked in bare feet, made drawings and molds of my feet and in just a few short days I was the owner of a pair of orthotics. Stefan recommended that for my everyday type shoes I get some cross-trainers with a straight-last. He at first recommended , but then I found New Balance to be even better. I paid about $300 for the orthotics. They also fit in two other pair of shoes. I had to fight with my insurance to get them paid, but finally they were, since I had the 'prescription' from a MD. Each orthotic is different for me, since my feet are both different and require more arch support on one and less on the other, etc. I just go in to Stefan once a year now to get them checked and see how they are wearing. The orthotics have really helped. You might also try the MDA clinic in San Diego. The general MDA site is at http://www.mdausa.org you can get a list of clinics from them. Hope this helps. Gretchen goelze@... wrote: > > From: goelze@... > > Where should i go to get them. Do they need to be specially made or > just ones that stretch metatarsals? How much should i spend. Does > insurance pay, does MDA cover? Any reply would be great. Thanks In > San Diego > > ------------------------------------------------------------------------ > Shabang!com is the place to get your FREE eStore, Absolutely FREE > Forever. If you have any desires to sell your products or services > online, or you want to expand your customer base for FREE, Come check > out Shabang!com FREE eStores! > http://click.egroups.com/1/1299/1/_/616793/_/951438006/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 In a message dated 3/3/00 1:59:59 PM Pacific Standard Time, aridan@... writes: << Hi , took the cast off Ariel's feet yesterday (did we miss each other? -- she mentioned that Adam is coming in at noon). They should be ready in a couple of weeks. She also gave us a referral for my husband who probably needs a new set of AFOs. She's lovely! Thanks for telling me about her. Shula >> Hi Shula, I was going to call you today to see how you liked . Adam and my husband were there at noon. Funny we both saw her the same day. I really like nancy she cares about people and treats my son so wonderfully. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 In a message dated 3/3/00 1:59:59 PM Pacific Standard Time, aridan@... writes: << Hi , took the cast off Ariel's feet yesterday (did we miss each other? -- she mentioned that Adam is coming in at noon). They should be ready in a couple of weeks. She also gave us a referral for my husband who probably needs a new set of AFOs. She's lovely! Thanks for telling me about her. Shula >> Hi Shula, I was going to call you today to see how you liked . Adam and my husband were there at noon. Funny we both saw her the same day. I really like nancy she cares about people and treats my son so wonderfully. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 In a message dated 3/3/00 1:59:59 PM Pacific Standard Time, aridan@... writes: << Hi , took the cast off Ariel's feet yesterday (did we miss each other? -- she mentioned that Adam is coming in at noon). They should be ready in a couple of weeks. She also gave us a referral for my husband who probably needs a new set of AFOs. She's lovely! Thanks for telling me about her. Shula >> Hi Shula, I was going to call you today to see how you liked . Adam and my husband were there at noon. Funny we both saw her the same day. I really like nancy she cares about people and treats my son so wonderfully. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2000 Report Share Posted April 24, 2000 In a message dated 4/24/00 8:45:48 PM Pacific Daylight Time, aridan@... writes: << , Gretchen, et al, A quick note to share with you that Ariel finally got the orthotic inserts. It took him a few days to get used to them (said he felt his muscles were " placed " differently, but he is very pleased with them. We got a new pair of Dr. s (his favorite shoes) - 1/2 size larger to accommodate the inserts. Thanks for recommending this option, Shula >> Great News I hope he gets miles of pain free use out of them. Adam see's nancy tomorrow. I am having my Mom drive him down. I get really depressed if I have to deal with to many Dr appts. I don't want to take my 3 year old with us either. I am affraid might spot " IT " with him. I am just not ready to have another child with " IT " . My Mom really wants to me go along for the drive. I don't think she will understand my problem so I am making up a lame excuse. I feel bad for not being able to handle it right now. Next time I will have my husband take him down. He likes to go alone. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2000 Report Share Posted April 24, 2000 In a message dated 4/24/00 8:45:48 PM Pacific Daylight Time, aridan@... writes: << , Gretchen, et al, A quick note to share with you that Ariel finally got the orthotic inserts. It took him a few days to get used to them (said he felt his muscles were " placed " differently, but he is very pleased with them. We got a new pair of Dr. s (his favorite shoes) - 1/2 size larger to accommodate the inserts. Thanks for recommending this option, Shula >> Great News I hope he gets miles of pain free use out of them. Adam see's nancy tomorrow. I am having my Mom drive him down. I get really depressed if I have to deal with to many Dr appts. I don't want to take my 3 year old with us either. I am affraid might spot " IT " with him. I am just not ready to have another child with " IT " . My Mom really wants to me go along for the drive. I don't think she will understand my problem so I am making up a lame excuse. I feel bad for not being able to handle it right now. Next time I will have my husband take him down. He likes to go alone. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2000 Report Share Posted April 24, 2000 , I don't blame you ONE bit for not being ready to face the possibility of your 3 year old having " IT " as well. My 22 year old is not showing real symptoms of CMT, but he has terribly flat feet which could be an indication. He's not willing to deal with a blood test right now, so we are kind of suspending the issue. I guess he'll pursue this when he's ready to marry and have children. Shula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 << Also, he is about to be finished with his short term disability, and we are quite concerned about him going back to work. His job was primarily one where standing up is required. Any information or advice would be helpful, as we are getting the run around from human resources (voice mails not being returned, etc.) >> HI , Welcome to the group. I hope the people who have experience with orthotics and AFOs will have some suggestions. Shoes seem to be another very individual item for CMTers. Our feet vary so much it's a matter of trial and error I think. Some do well with hiking boots. CMTers need a lot of support for their feet/ankles. Regarding standing at work. Would it be possible for him to have a stool or something to lean against for support? Standing becomes very difficult and exhausting for most CMTers. Doesn't the employer have to make accommodations for your husband? I know of one CMTer whose employer purchased an expensive divided keyboard so the CMTer could keep her job, for example. Fatigue is an important part of CMT for many of us. Our bodies are having to adapt to the loss of nerves, making the remaining nerves and muscles work harder. When they are stressed too much the CMT may progress faster than it otherwise would. There is a balance between not enough exercise/movement and too much that each person has to find for him or herself. CMTers vary a lot! What helps one may not help another. Trial and error, but getting ideas from others can be very helpful. Kat/Pixi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 , I understand your fear. When I approached my children's pediatrician about my concerns for my daughter, I didn't expect her to say both my children appeared to have very poor muscle tone! I felt like I got hit in the stomach with a bowling ball. I want so much for my children to be able to do things I never could do. (like sports!) Question: My son has GERD (reflux) could this be connected to CMT in any way? - my prayers are with you. April ----------------------------------------------- FREE! The World's Best Email Address @email.com Reserve your name now at http://www.email.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 , I understand your fear. When I approached my children's pediatrician about my concerns for my daughter, I didn't expect her to say both my children appeared to have very poor muscle tone! I felt like I got hit in the stomach with a bowling ball. I want so much for my children to be able to do things I never could do. (like sports!) Question: My son has GERD (reflux) could this be connected to CMT in any way? - my prayers are with you. April ----------------------------------------------- FREE! The World's Best Email Address @email.com Reserve your name now at http://www.email.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Thanks Kathleen, I am learning that 's CMT is different from even the few bits I have read about so far. As a spouse, do you all have any advice for me to help out? I mean, there isn't a whole lot I can do, but let me know what you all appreciate. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 In a message dated 4/24/00 9:33:25 PM Pacific Daylight Time, Vivien529@... writes: << I have a question about orthotics - what should they look like? got his a few weeks ago, and he and his neurologist don't think they are right. We have made yet another appmnt. with the orthopedist because the braces he got are non-padded plastic that go about mid-calf length and have no padding on the feet/orthotic part. Shouldn't the orthotics be padded? After wearing them for any length of time, says his heel feels more like spikes being beaten into it than usual. >> ************************** , My AFO is hard plastic. The orthotist made a casting of my lower leg and foot.... He had me stand on it to make sure it would fit when I stood. It is also important that they get the foot at the correct angle when making the casting. My AFO comes up the full back of my lower leg to within 3 or 4 inchs of the back of my knee. It has a velcro strap that is 2 or 3 inchs wide with a piece of foan behind it where it might come in contact with the leg. It fits in my shoe. From the back part of the AFO it continues down into my shoe under my foot to within 1 or 2 inchs of my toes. There is NO padding. I wear knee-high socks with my AFO in order to keep the plastic from iratating my leg. You can use mole skin on your AFO on the inside. Plus you can use a cushioned insole between your foot and the AFO.... You don't want anything that might be uneven because it could cause problems for your feet or back... Of course, this all depends on if you had a good orthotist make your husbands AFO's. We have an elderly lady in our support group that got a new AFO and it was totally unacceptable for her to wear. They didn't take into consideration the swelling her legs go thru and they changed areas after the molding that hurt her horribly. It has and still is a battle. The medical society seem to think that they can make you accept whatever they say..... NOT SOOOO! You can refuse and start over. But, you have to be ready to get involved. I have never had to go thru that and believe that it is not a common occurance. Jeanie (from Oregon) Moonglow21@... Jeanie421@... come and visit http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat room http://www.egroups.com/group/Charcot-Marie-Toothonlinechat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 To find a place to get ** custom made ** orthotics. Ordinary over-the-counter orthotics are not what we mean. http://www.cpeds.org/ http://www.cpeds.org/ " >B.C.P. Home Page I hope this helps. Gretchen has this site on her list of URLs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 you mean the ones that fit in your shoes? baby powder..... Jill orthotics > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! > > Any ideas??? > > Thanks > Bonnie > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 you mean the ones that fit in your shoes? baby powder..... Jill orthotics > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! > > Any ideas??? > > Thanks > Bonnie > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 you mean the ones that fit in your shoes? baby powder..... Jill orthotics > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! > > Any ideas??? > > Thanks > Bonnie > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! Why would they squeak Bonnie?? What are they made from?? I bought a pear of sneakers once that squeaked and I took them back - they were defective. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Re: orthotics Why would they squeak Bonnie?? What are they made from?? I bought a pear of sneakers once that squeaked and I took them back - they were defective. Love Lana ~~~~~ It's my leather/hard plastic orthotics that are squeaking, not the shoes... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Re: orthotics Why would they squeak Bonnie?? What are they made from?? I bought a pear of sneakers once that squeaked and I took them back - they were defective. Love Lana ~~~~~ It's my leather/hard plastic orthotics that are squeaking, not the shoes... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 > It's my leather/hard plastic orthotics that are squeaking, not the shoes... Bonnie, what about some of the softening stuff you would use for leather shoes? Seems to me I saw something like that in a can that you spray on leather or suede to soften as well as protect. I don't have a clue if it would work or not - it's just a thought! Good luck! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 > It's my leather/hard plastic orthotics that are squeaking, not the shoes... Bonnie, what about some of the softening stuff you would use for leather shoes? Seems to me I saw something like that in a can that you spray on leather or suede to soften as well as protect. I don't have a clue if it would work or not - it's just a thought! Good luck! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Yep, the ones custom made for my feet that go inside shoes and take the place of the shoe insole....sqqqqquuuuueeeeeeeekkkkkk orthotics > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! > > Any ideas??? > > Thanks > Bonnie > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Yep, the ones custom made for my feet that go inside shoes and take the place of the shoe insole....sqqqqquuuuueeeeeeeekkkkkk orthotics > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! > > Any ideas??? > > Thanks > Bonnie > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Hi Bonnie: I found it extremely difficult to find to find shoes to accept the orthotics. When My orhtotics squeaked it was because there was too much play around the heal area and they therefore squeaked some. With too much play (movement) of the hard orthotic heal area that pair of shoes only lasted 2-3 months as the orthotic actually cut into the side of the leather shoe, damaging it quite quickly. Orthotics are notoriously difficult to fit in shoes, the only problem with them Bernie Re: orthotics you mean the ones that fit in your shoes? baby powder..... Jill orthotics > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! > > Any ideas??? > > Thanks > Bonnie > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Hi Bonnie: I found it extremely difficult to find to find shoes to accept the orthotics. When My orhtotics squeaked it was because there was too much play around the heal area and they therefore squeaked some. With too much play (movement) of the hard orthotic heal area that pair of shoes only lasted 2-3 months as the orthotic actually cut into the side of the leather shoe, damaging it quite quickly. Orthotics are notoriously difficult to fit in shoes, the only problem with them Bernie Re: orthotics you mean the ones that fit in your shoes? baby powder..... Jill orthotics > Does anyone know how to make the orthotics to stop squeaking? I finally > found new running shoes (New Balance) for my trip to Ireland and UK that > AREN'T white (that's a no-no in Europe as ONLY American's wear WHITE > shoes).... But now my orthotics squeak worse than they did in my old > shoes!!! > > Any ideas??? > > Thanks > Bonnie > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
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