Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Bob, Thanks for the response. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 Sheila, I too was suprised that Mitch would have been rude. The only thing I could think of was that he was really pressed for time and it was a bad day and may have gotten a bit defensive about the competition. I have found Mitch to be a pleasure to speak to, and extremely informative. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Here is their website www.ordesignslv.com Also, they have had many write ups in CMT related articles. Wayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2008 Report Share Posted November 4, 2008 Hi Laine, Did you go to Vegas to acquire the Helios and how long did you have to be there? I live in the FL Keys. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2008 Report Share Posted November 4, 2008 Hi , Yes, I did go to Vegas for the Helios and the normal time Mitch requires is one week as I said before, you or any fellow CMTers in the area are more than welcome to see my braces. If you like you can call me 561-620-3889 I live in Boca. I hope you make the decision that is comfortable for you. Thank you & good luck Lainie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Hi, Does anyone have this brace? Please let me know your opinion. Am interested in possible purchase. Would love any other brace recommendations as well. Just looking for something others are happy with. Thanks so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 We are all so different, I wish I could give you a defined answer. My opinion the Helios are great for standing, but if you have weak quads, for myself, difficult to walk in. Custom Composites are also good for standing(not holding on to anything) and give me some flexibility. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 I have the Helios too, and for me they don't work outdoors. This is because they are rigid underneath and can't bend over uneven surfaces, as normal shoes do. Indoors they are great, easy to stand and walk in. I find it troublesome to put them on/take them off, and since I am an active person going around all day, I usually only wear them for work, or else I would have to take them off when going out. I work in an office with long corridors, the best place to walk with Helios, really. I am looking for other braces now that are not so rigid, and which I can use outdoors too. Beata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Beata, I totally agree, Helios (I think) are made for level ground, I'm a little upset with people paying all that $$$$$$$$$$$$$$$$$$ and then not being able to wear them, then what? Please, I know there are some they work great for, I'm speaking for myself. Try looking into the Custom Composites. Good Luck Lainie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 I am also considering Helios as they seem less bulky and more " sleek " than the hinged AFOs I now wear. I was quoted two prices: $10,000 if you don't need to walk on uneven surfaces and $12,000 if you do need to walk on uneven surfaces. Has anyone in our group tried the $12,000 version? If so, is it all that it is cracked up to be? Thanks in advance for your input. J. Warren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 I agree with Laine also; I think before you decide on Helios, you need to really determine your weakness. If you have very weak hips or very weak quads, they may be difficult to wear. (thank you Laine for figuring out why I was having a hard time in them!) I too got these 1.5 years ago and have been unable to walk in them yet, but that is my goal and I am working with a physical therapist to help me now. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 First I want to clairify that these braces are a fabulous design and a g-dsend for those that have stronger muscles in the hips and quads. I have the more expensive ones, but have not been able to test them as I can't take more than one step in them at this time. See my previous post from today. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 : Why don't you just check with your PT to know if the Helios are right for you. There is no reason to waste all that money if they won't work for you. Marin from Bridgeport, CT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 , I realize it's a very expensive decision, but please try to speak to people that actually have them. I don't see how a PT could know unless they see you walk in them, by then ??????????? I'm sure you will hear good and not so good, but PLEASE if you decide to go WEAR THEM OUTSIDE NOT JUST IN THE OFFICE. I can't tell you how important it is, the planet is not LEVEL. For myself, I wanted them to work sooooooooooooo bad that you tell yourself it gets better. The way I walked in Vegas did not change. I do have weak quads. Lainie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Sorry - The post about Helios was for not Laine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Hi there- I have the pair of Helios that were $12000 and I still hate walking on uneven ground. I can do it but it is a little awkward at times. They are my first pair of AFOs and although I have nothing to compare them with, my balance has been returned to near normal and my stride is normal as well. I have had them for 2 1/2 years with no problems. If you have any questions please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Lainie: Your PT knows your strength level and weaknesses. They are also trained to know what different braces or AFOs are; their strength and weaknesses too. For example: my PT wants me to wear only a full brace, the plastic cast kind. I asked my PT about wearing a ankle hinged one but she said I don't have the flexability to walk in them. She even showed me to understand. I heard someone saying on here that you have to have strong thighs and hips to correctly use them. Still, I would check with your PT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2009 Report Share Posted January 17, 2009 , How many times has your PT seen the Helios ? Laine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 I had the Custom Composite braces, before the Helios. The Custom Composites brace did not work for me, they did not provide any stability for me. The Helios are wonderful, walking on uneven ground became very easy in a short time after having the Helios. Worth every penny to me, and I would get them again. Shelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Glad to hear they worked for you, Sheila. Did you get them from Mitch? The $12,000 ones? Thanks! JoAnn N. Newfoundland, Canada (originally from NJ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 Dear JoAnn, Yes from Mitch, they are the ones that were $12,000. for the pair, but they also included test braces that were made first. So they actually make you two pairs of braces, which is part of the cost. I was also shown other carbon fiber braces by Mitch, which were non-Helios styles, but they were carbon fiber and cost a lot less. I felt very comfortable that I was given choices, and based on what each choice offered, I ultimately made the decision on what I wanted. When the braces are on, I walk quite normally, no one would know unless I was wearing shorts! Shelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Hi Jackie, Thanks for your sharing experience about the Helios braces! Right now it seems like a draw between those who love it and those who struggle to get used to it. I found it hard to manage using them becuase of the lack of flexibility for my foot to move, just like you. When my foot moves, I can compensate for things on the gound, rocks and things, but if I step on a rock with Helios I don't feel secure. I almost fell once with them, that was when there was a small slope. I didn't notice, tried to walk down it and I almost fell. I regained my balance, but strained my thigh muscle, it ached for weeks. I have a new theory, but I am not sure about this either. Maybe the Helios are good when nothing else works? I mean if a person's gait is very bad, and the alternative is wheelchair? Maybe I am a too good walker for them? I remember Mitch told me that some people come to his clinic in a wheelchair, but walk out with the Helios! (Great!) Also, the first day he asked me to practice " a lot " with them, and I asked: Should I walk to the hotel? (That was a mile or two away, I think). He said: No, haha, just walk a couple of times infront of the clinic! (100 yards or so...) I thought, well I could walk to the hotel without the braces, if it would be necessary, so why this short distance then? But he thought I was joking! (But he is a great person, and he really want to help people, that's true!) So we are all different, and it seems to be a 50% chance that the Helios will change your life! Yes,they are expensive, and it should be good to know for those who want it, that it might be great or...not. There should be an insurance for them: If you can't use them, you get some money back. Beata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Dear Beata, I respect your experience and your feelings. I have had a different experience and feelings than you. I had asked to speak to several people before I went out to be fit. They were of all different weakness levels and different ages. They all went over the fitting process, as that was a big one for me, as I needed to be there for a week. Mitch Warner did let me know that there are very specific break in instructions and training instructions for the braces, that I must follow. This was given to me in writing. I remember asking him questions about those instructions, and I was given very detailed answers. He let me know that sometimes patients did not follow those instructions, and that ususally led to problems. During my break in period with the braces, I did have some questions during the first week I got home, called them at Helios, and I was given detailed walking techniques to help me. It really made a big difference for me. It was made clear to me when we were finished, that if I had any problems or questions to please call. Now I walk normally as I have posted before. It is unfortunate that they did not work for you. I feel that making a statement that the Helios is a 50% chance that it will change your life is a very unfair. My life has changed 100%. Also, when I was there, I was told that on the second day of fitting, that if I did not like the results with my test braces, that I could stop then, and just pay $2000.00 for the standard test braces, which I thought was very fair. As I posted before when talking about surveys, I worked in the corporate world, and I also worked in auditing where everything is cross referenced. To get the Helios, you do need a prescription from your medical doctor. I had thoguht that you can just buy them if you were not using your insurance (you mentioned insurance). It was explained to me that even if you pay for the Helios without insurance, that you have to get a prescription from your medical doctor, to make sure that you are a candidate for this type of brace. They will not fit you without a prescription. Yes, I am very, very happy with my Helios, they are miraculous to me, and I never thought that my calf muscles could actually get bigger. If they come out with a different style to do different things, shoes, etc; yes I would get another pair. Shelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Hi, I am a happy Helios wearer, and try not to get involved with any Helios posts, because I may be considered biased. But I have to say, what you are posting Beata, your theories, to me sounds like you are going out of your way to badmouth. If you have ever read all of the articles by patients in the CMTA newsletters, and the HNF newsletters, you would know that the Helios is being used many many extremely active people, not wheelchair candidates. I once approached them at Ortho Rehab, for Helios, about a friend of mine who was in a wheelchair, and was told that people who are already in wheelchairs are not good candidates, because they already stopped walking. These kind of false theories are nothing but bad gossip! Wayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2009 Report Share Posted April 6, 2009 Hi Sheila, I am glad that the Helios work so well for you! It is great! But unfortunatelly, some people have a though time to get used to them. Several people who answered my survey here struggle with them, without really being able to use them the way you can! So that's what I meant with a 50% chance: Some people (about half in my survey) like them and can walk very well with them, and the other half can not. I did not get written instructions of how to practice with the Helios, but I also felt that they should be good at once, or I would not use them. Practicing is not what I have time to do right now, with a job, a household and a child... My Blue Rocker braces are just put on in the morning and off at night, I walk and stand steadier and no practicing or training plan is needed. I think that since the Blue Rocker suffice for me right now, I will just wear them, and in case I need more support in the future, more rigid braces, I will have another go with the Helios. My physiologist did approve of the Helios braces, but the physiologists just really don't know before for sure, if they will be wonderful or not... There is just no way of knowing, so real money-back-guarantee insurance would be best. I had a though time walking with the plastic pre-braces Mitch made too, but I was really hoping the final ones would be a lot better (they were too, but not enough, obviously). I really like Mitch too, and the Helios braces seem great for so many people! I think he is doing a great job and he is a wonderful person. No one else is an expert in the same degree as he, when it comes to braces for people with CMT. Bye Beata Quote Link to comment Share on other sites More sharing options...
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