Anthony B., Age: 33, CMT
Lurgan, N. Ireland
I was born in 1977. As a child, as I learned to walk, I found myself tripping/falling quite a lot, and my parents took advice from a consultant who stretched/lengthened the achilles tendons in both of my ankles. This, however, did not really stop me from falling. After further consultation and tests I was diagnosed with Charcot-Marie-Tooth. In turn, I began using standard AFOs from about the age of 5. I have used AFOs, and more recently the Blue Rocker AFOs since that time, yet my balance has never improved and I remained unsteady on my feet. I found Ortho Rehab Designs in Las Vegas by searching on the internet, and in August 2010 I traveled to Las Vegas from my home in Ireland to be fitted with the Helios braces. I stayed in Las Vegas for two weeks, since the distance from Ireland made it prohibitive to travel back and forth. My experience with Ortho Rehab Designs and particularly Mitch was excellent. I needed my new braces adjusted, and Mitch and his team carried out these adjustments immediately. I must say, I quickly became accustomed to walking with the Helios. Through using the Helios braces I have much better balance. I do not dread having to stand in the centre of a room (previously I would always have positioned myself near a wall or bench to ensure I could support myself), and can even stand while holding a glass at a party, something I would never have done for fear of falling or spilling the contents. Since having my Helios braces I have married Mary, the mother of my beautiful daughter Valentina. I had always put off the wedding for fear of walking down the aisle. I had a fantastic day at our wedding and did not have any trips or falls, and even danced the first dance. I have no hesitation in recommending Mitch and everyone at Ortho Rehab Designs, as they have improved my balance, my mobility and the quality of my life immeasurably.
Dana R., Age: 49, CMT
I am still loving my new braces! It is still shocking how fast I can walk. I feel like I am getting better with the stairs and can now alternate feet when I go up and down. I continue to walk in the neighborhood every night, and I am walking about 1.8 miles. I am shopping without shopping carts and enjoying it very much! I went to a cookout on Sunday and wore the braces with black soccer socks and shorts and one woman thought I had some sort of new type of fashionable shoes. I really like the fact that the braces are so open in the front. Had a big walking week, even had to waitress at Pizza Inn for a fundraiser one night. I wore the braces one day for 17 straight hours with no pain. This has been the best week yet with the braces and I am beginning to walk and not even think about the fact that they are on my feet at all. Perfection! Thanks for all of your genius work. Nice Job! Thanks again!
Judy L. Age: 65, CMT
West Hartford, CT
Dear Mitch, On the Sunday after my appointment with you and receiving the braces, I went to an 85th birthday party for the mother of one of our friends. It was a small gathering of close friends and everyone was amazed at the difference in my standing and walking. Monday I took a walk to our local drugstore, not far (about a block), but not something I have wanted to do for a long time. Tuesday I showed off my new abilities to close friends at the university, I actually found myself saying that I WANTED to stand for a while. Wednesday night I taught a class and was able to stand for the entire 1.5 hours and move around as I interacted with students, I cannot even remember the last time I was able to do that. Thursday I had a massage and chiropractor appointment. I think the braces are helping reduce my neck and lower back pain. Friday I went to show the braces to my physical therapist - she was very impressed. I have no desire to wear my old braces. Thank you so much. You have made many people happy; me, Stuart, my mother (who is really enjoying my progress), and all of my friends. I will also show the rest of my family in the next couple of months. THANK YOU SO MUCH, Mitch, for your creativity, problem solving, careful listening, and extraordinary care.
Robert F., Age: 71, CMT
Manns Choice, PA
I am writing to let you know how pleased I am with my Helios braces. About five years ago I noticed that I was not walking with my normal gait and that I was tripping over the least little bump. My balance was also becoming very poor. This condition worsened until I had to use a cane or walking stick to walk, and I could not stand still without holding onto something. I finally made an appointment with a neurologist and he diagnosed my condition as Charcot-Marie-Tooth. I then researched the disease and found that I had all the classic symptoms and that the disease would gradually worsen, and that there was little that could be done for it. One day I happened upon the website for Ortho Rehab Designs and watched some of the videos of people walking with and without the Helios braces. I was so impressed that I wanted to find everything that I could about these braces. Michelle was most helpful to answer my questions and send to me the necessary information. I was excited to make an appointment as soon as it could be arranged. I was amazed to find that Mitch devoted an entire week to me. He could not have been more encouraging and helpful. As soon as I put the braces on, I found that I could walk much better. I learned to walk with my legs straighter. I can now walk better than I could five years ago, and I can stand in one spot as long as I want. I live on a farm and my chores were getting difficult because of the lack of balance and having to use a walking stick. Now with my braces I do not have to hold on to something, and I can use both hands to do my work. I no longer use a cane or walking stick and no one can tell that I am wearing braces. I am 100% satisfied with my new braces and I would not sell them for any amount of money. They are truly life changing. Thank you Mitch.
Rolf D., Age: 61, CMT
Hi Mitchell! This is fantastic. Every new day I am walking better, faster, and with less effort. I can walk longer distances without getting tired. At work they no longer have to wait for me-I can keep up with them. Walking uphill and downhill also is becoming better. My balance has improved dramatically, I can stand still as long as I want, I can walk backwards and stand on one leg. Thank you Mitchell, I am feeling fine. Yours sincerely.
Vera A., Age: 43
Porto Alegre, Brazil
Mitch made my orthotics in 2008 and I brought them to Brazil. When I first arrived in Brazil I began to use my Helios, and those 6 months of use have felt great. My Helios are very comfortable now. I go down and up stairs without any problems. I feel no points of contact with my skin, it provides a stable balance. I can stand for hours, walk long distances for hours, and it keeps my whole heel-knee-hip in very good alignment. Besides the comfort, a pleasant feeling is to go back to walking like a normal person. With my Helios, I feel lighter, I feel safe, I feel free, I feel happy. Mitch, I'm sure that the Helios is a brace you created that can really change the life of CMT patients. Thank you.
John W., Age: 67
On February 1, 2010, Mitch took videos of me walking with AFO braces and barefoot, then casted my legs. The next day I received "diagnostic braces," custom-made from the casting. Mitch asked me to stand. After talking for a while, Mitch told me I had been standing for ten minutes without holding onto anything. I hadn't done this in years. Mitch spent the next while making adjustments, checking for comfort, fit, etc. Mitch gave me the "finished" Helios on February 4, 2010. I put them on. My wife and Mitch watched as I did things I hadn't done in years; stood, walked in circles, bent over and touched my toes, did pirouettes, walked backwards, and danced all with near perfect balance and no support. This was very emotional for Mary and I. The sensation of weakness around the ankles was gone completely. Outside Mitch's office, I walked 50 yards and back with confidence and delight. The Helios were incredibly comfortable because the foot section was custom fitted to each foot. Every day since February 4, 2010 has been pure delight whether I'm standing, walking from the car to the Giant Store, or walking 2 to 3 miles. My legs feel "normal" and strong from the moment I put the Helios on every morning. Here is what I want people to know about the Helios:
1. The Helios have been life changing every day. They are not just a little bit better than the other braces I've had. They are exponentially better because they are custom made for my feet and legs and have completely changed my ability to walk, my enjoyment of walking and my self image as a "disabled" person. I can't believe I walk at least two miles several times a week and enjoy it. I can stand anywhere hands free without fear of losing my balance.
2. The Helios are energy-storing. I didn't understand the concept of "energy storing" until after I had the Helios for a while. The Helios flex behind the calf, not at the ankle. They store energy like a bow stores energy right before you release the bow cord holding the arrow. When I walk through a shopping mall, I feel like I am "gliding." I walk almost as fast as I did before CMT. I sense the "stored energy" of the Helios most when I'm simply standing in a store line or in the kitchen, moving a little, then stopping, or when I'm standing on a street corner or in an elevator; I feel like I have new muscles “flexing” in my lower legs as I make slight adjustments for balance. I marvel daily at this simple pleasure.
3. The results that I have achieved from the Helios are unquestionably worth the cost of the Helios and the expense of travel.
Thank you Mitch for the genius of the Helios' design; for treating Mary and I while we were in Las Vegas, as if we were your only, and most important, patients and for what is for me no less than a miracle in having mobility, balance and dignity that is to say, my life restored.
Traci V. Age: 21
Hello. My name is Traci. I am a 21 year old female who was diagnosed with Charcot-Marie-Tooth disease when I was 15. My life was difficult throughout high school because I have bilateral foot drop and have always walked “funny”. A couple of months ago, however, my life completely changed. I went to visit Dr. Glenn Pfeffer at Cedars-Sinai Medical Center to see if he could help me with my situation. He was absolutely wonderful. He was the first doctor that I have met who actually knew what CMT is! He recommended that I visit Mitchell Warner in Las Vegas to get the Helios braces. In November, I made the trip from Florida to Nevada to receive my braces. Now I walk completely normal with them on!!! I LOVE THEM! They are the most wonderful things in the world and I never want to be without them again. Before getting them, I was falling at least three times a week. Now, I never fall. I can walk faster than some of my friends. My boyfriend calls me "fast-walker" now. It's so awesome. Everyone with CMT should know about the Helios braces. Dr. Pfeffer was wonderful in sending me to see Mitch to receive them. Mitch was incredibly nice and very thorough. He explained everything to me very well. Not only did he change the way I walk, but he changed my life completely. I am the happiest that I have been in five years.
Jennifer Sidery, Age: 57
I cannot but help thinking about every day as I put on my Helios braces, and giving up a prayer of profound gratitude. My only regret is that I didn't find out about ORD until I became so old and debilitated. Today I went to the supermarket. A young man was walking in front of me at a very brisk pace. Hah, I thought to myself, I bet I can out-pace you. So I put a spurt on, and sure enough, I overtook him. I felt such a thrill of excitement at this I can hardly describe it! And no one looks at my feet anymore I feel human for the first time and not like a freak. The other miracle is standing without collapsing in a heap. Another liberating aspect of the braces is the elimination of pain and fatigue when walking. Maybe the pain issue isn't relevant for many of your patient, but when wearing them, I don't have that continual pain in the left knee that I had before, due to the pronation of the ankle on that side. But the elimination of fatigue after walking is something that probably all of your patients experience, but as it is such a new phenomenon to me, I still find it somewhat hard to believe. I was amazed to fined that I am neither perspiring from exertion, nor even the slightest bit out of breath; something I have ever only dreamt of in the past. I have sent pictures to friends and family, and quite frankly, they are completely astonished. They all think you must be some sort of miracle worker (which you are as far as I'm concerned). I don't think I shall ever get over the sheer novelty of being able to stand independently. I feel different inside; I feel a dignity I have never before experienced.
Mike H., Age: 38
I have become very accustomed to the Helios leg braces, and they are working quite well. I have a good, quick, balanced gait, and am able to keep up with the New York City foot traffic easily. In fact, I was in a cab on the way to the train station and stuck in traffic two blocks away from Penn Station and chose to jump out of the cab and walk the remaining distance. I made my train, where before I would have missed it while I waited for the cab to get closer to the shortest distance. Also, now when I go out to get lunch, I am no longer just going to the places a block away, but am enjoying exploring the area and finding new places to eat. I think the biggest difference is it's fun to walk again. I no longer focus on how many steps it takes to get from point A to B, but just enjoy the trip. Many people have noticed the difference. Well almost everyone really. I have people on the street I don't know asking me about it because they had seen me walking before and see me now. Every time I get a "wow, you're walking really well, it's a huge difference!" I smile. So thank you for everything! I am very happy with the results!
T.C., M.D., Age: 50
It's been eight months since you fitted me with the Helios braces. I'm sorry it has taken me this long to give my assessment of them. Part of the delay has been inertia, but the other part has been purposeful. I've wanted to wait long enough to allow a more complete and objective review. As you know, I am a physician, and in 24 years of practice, I think I have come to know a great deal about quality medicine. To this day, providing the highest quality care for my patients remains one of my primary goals. I preface things this way because it's quite apparent to me that you do the same. When I began the research that brought me to your office, I remember reading internet comments from some who were concerned with the cost of the braces, but after seeing the extraordinary attention to detail and care you provide in designing, manufacturing, and fitting the braces, the price seems small. I am sure that if maximizing income had been your goal, you could have achieved that more easily by opening several offices in assembly line fashion and selling off the shelf braces. Thank God you did not. Thank God, too, that you had the unique combination of education, training, experience, and desire to invent the Helios brace.
So how have the braces performed? Well, now I don't fear walking to talk to a patient's family after a procedure anymore. I don't fear being caught in the middle of an elevator without being able to hold on to a rail. I don't fear a friend coming up to me for a conversation in a place where there's nothing to hold on to. I don't begrudge leaving my house anymore. I've become more social and outgoing again, and have also become more involved in my children's school and extracurricular activities. I play golf again. I don't constantly worry that someday I may not be able to walk my daughter down the church isle on her wedding day without a cane. I no longer worry that strangers are staring at me as I walk down the street. I no longer obsess about why others can walk or stand unaided and I cannot. I now happily worry about life's other, menial concerns, and that's just fine with me. In short, the effect that the braces have had on my life is nothing short of miraculous. You have given me back a normal life; something I thought had been lost forever. As someone who's in the business of trying to achieve miracles at times, I find it ironic that in all these years the one interaction I could almost truly classify as miraculous has been this one, one in which I'm the patient and recipient. Words will never adequately express my gratitude and thanks, but thank you, nevertheless.
The Helios braces made for me in Vegas by Mitch Warner (I have CMT), gave me a whopping blast of confidence, they gave me a saucy superior, star-size eagerness. I felt a raw clarity and confidence of thought, a more dynamic presence. I was standing in the small cottage kitchen at Leon Williams' New Years Day birthday party. Unlike last night, I could stand for hours; up-straight, tall. "Tall and growing" I said. I was spectacular; beautifully dressed, thoughtfully put together. I could even drive a car with my new braces on; heel, not toe, safely on the gas pedal. I have a new life here. I am not weak and stumbling behind my fear. This fear must be conquered.
What a great way to begin the New Year.
Pat B., Age 60, CMT
Now that some better weather has arrived and my time commitments have lessened, I have been able to get out on my bicycle with my Helios. In the last 9 days, I have done three 20 mile rides and today a 51 mile ride. That has been my longest ride in 3 1/3 years since my peripheral neuropathy exacerbated. The route today had numerous hills and a strong head wind. The ride out was 45 minutes longer than the ride back. While I was the slowest of the 5 riders, I made it up every hill. There is no way I could have done this ride without my Helios.
Jim K., Age 55, CMT
Perth, Western Australia
Words can not express the difference your Helios braces have made to me. I am walking tall now and can stand for hours on end with no support. They have changed my life. I feel like I can conquer the world. You are my hero. The Helios is very comfortable and easy to put on, less pressure on my knees, hips, and back, and much more. The benefits are endless. Before the Helios, I had many other braces; some off the shelf, and some custom made. I also had a silicone pair thinking that all braces are the same. Nothing is further from the truth. The Helios is the best.
Richard W., Age: 64, CMT
I got my Helios braces about six months ago in late February and they have been priceless. Being 64, but still very active, the braces have allowed me to resume a more normal lifestyle. I play golf two or three times a week, among other activities, and I am never as tired as with my other 窶徙ff the shelf: braces. Another benefit is I can use these braces with most of my shoes.
Meeting and working with you and your staff has been an extremely pleasant experience. Keep up the good work.
Thanks for restoring a more normal life.
Kathy W., Age: 52, CMT
I could never go back to regular braces after having the ones I have now. They are the BEST!!! And a brace with an ankle joint won't help me either...it is the CMT causing the ankle to lose flexion. Although any brace will cause an ankle to stiffen up with or without CMT...Cause if you don't use it you lose it. Just like when you have to wear a cast for a broken bone, your muscle starts to weaken. Anyway, I got side tracked, the braces made at your facility can't be beat...they are the best for CMT patients. No one can compete with the Helios!!
Walter M. Age: 68, CMT
The Helios Orthosis
I really am delighted with my braces. After years of limping in staggering around with the cane, it is such a pleasure to be able to stride along all or a sidewalk with confidence. My family and friends are amazed that the improvement in my walking. I can stand much longer to. I haven't used my cane at all for the past few weeks. Once again, my profound thanks for your expert service!
Ronald B., Age: 52, CMT
My braces have worked so well I just started doing things I have not been able to do for many years. The freedom to enter a large box store knowing I am not going to exit in pain and exhaustion is tremendous. Going for a walk is no longer a super human event, it's just something I do. People constantly comment on how tall I am. Before my braces, I was bent over from constantly leaning on a cane. Now I stand tall.
Thank you so much.
Lloyd B., Age: 75, CMT
The Helios Orthosis
San Antonio, TX
I stood upright (without movement) with no outside support. I had him with tears in my eyes. It had been 14 years since I was able to do this.
I read of Mitchell in a CMT newsletter, and since my wife and I already had a trip planned to Las Vegas, I was determined to see him.
I have used the Helios that he designed (and made) for over a year now and I am so grateful for my Helios. The Helios has so improved my life and I no longer need my cane except on very, very rough terrain.
What a positive and permanent effect on my life. I will be forever grateful!
Linda S., Age: 59, Muscular Dystrophy
The Helios orthosis
Huntington Beach, CA
1-Month and Going Great!
I've had my Helios braces for one month and wanted to let you know how pleased I am. I talked with you two weeks ago and mentioned that I was still walking stiff legged and sometimes I would feel off-balance all of a sudden. I think the best advice you gave me was to just let go and not think about the details of walking so much, reassuring me that good walking would come in time.
About a week ago, I noticed I had stopped getting "dizzy" or unbalanced at times and for some reason walking seemed more smooth. I have days where I notice a great improvement over the previous day and then will go two to three days at a plateau where nothing new happens and maybe I even walked slightly not as good as the previous day. I'm sure others have told you this before, but because I have that Type A personality of wanting to know exactly what will happen and when it will happen means I have a hard time with just letting things happen on their own.
My family and I went to Costco. Anytime I go to Costco I push the basket because it gives me something to hold onto while walking. Well, with three of us the basket got too heavy for me to push and I told my husband he had to push it and I held my dad's hand and walked. I used my cane but didn't have to lean on it for support-just wanted it because there were so many baskets and people around. I walked the last half of the warehouse to the checkout, stood balanced in line (smile), and then walked clear out to the parking lot holding my dad's hand. I could have never done this with the old braces. Many times I would just wait in the car while my husband did the shopping.
One thing I've noticed is how much more energy I have-my husband really likes that part!-Ha! After we got home from Costco, I put food away, made dinner and cleaned up-once again, something I never did after clogging around in the old braces.
Another thing I can't believe is that from the first day I wore your braces, I haven't had one sore spot, red spot, or area that needed padding correction. Job Well Done! I am looking forward to month 2, and will keep you posted.
Thank you so very much for my new braces,
Edwin L., Age: 34, CMT
The Helios Orthosis
New York, NY
My name is Edwin. I visited your facility in August of 2005, and was fitted with a pair of Helios braces. Now that it's been about a year, I thought I'd write in and give you a progress report.
First, I have to say how pleased I am that I decided to fly out to Vegas and take a chance on these braces. They've made all the difference in my life and I can't tell you how grateful I am to Mitch and Michelle for all their support.
I have had CMT symptoms since I was five years old and the first thing I noticed when I put on my Helios braces was the immediate restoration of balance. Anyone with CMT knows how difficult it is to simply stand in one spot without holding onto something, or falling to the ground when someone bumps into you. I can now stand on line for hours if I have to, and in the last 13 months I've only fallen twice. Neither time having anything to do with the Helios failing me.
The other improvement that becomes apparent with time is an increase in walking speed. Incredibly handy when navigating the streets of New York.
I live a fairly busy life, I work a full-time job and I'm also a full-time graduate student. There are days that I have the braces on 14 hours straight. While this is not ideal for a CMT patient, the Helios has made my days much easier. All the work Mitch puts into properly fitting really pays off. These braces are about as comfortable as it gets.
The braces have gradually improved as time passes. The most difficult thing to do was learn to trust the braces. Having CMT makes a person more cautious and a little defensive. These braces allow me to do more than I was accustomed to and it took me a while to learn that. I'm still learning.
Mitchell, thank you so much for designing such an incredible product, and I look forward to seeing you and Michelle again very soon.
Denny H., Age: 54, CMT
The Helios Orthosis
Mason City, IA
Mitch, you are the man!
Wow! What a change in my quality of life! I've worn my braces every day all day since getting home and they feel great and fit like a glove. I feel like "CMT Man" (step into a phone booth and put on my braces and do amazing things). I bought two pairs of really good shoes and that helps too. For the first time I was able to stand in church and close my eyes without holding onto the chair in front of me. I don't have the problem driving my truck like I thought I might, in fact I have more strength to depress the clutch and press the brake pedal than ever before and hold it as long as I want. The accelerator took some getting used to, but I'm learning. My first day back on the job I had to walk sideways on an incline that was 1" gravel. NO PROBLEMO! On the Fourth of July we went to a friends house who lives on a lake to watch the fireworks. I was able to walk out on their boat dock (3 feet wide by 100 feet long, without railing, at night) without losing my balance. My mom was so happy to see me standing and walking straighter that she almost cried. Everyone I show them to are really impressed. I had an appointment at the Mayo Clinic yesterday and showed them to my neurologist, and he was excited for me. Sunday we leave for a two-week missions trip to Mexico and I asked my wife to shorten some of my old slacks into shorts. I've never worn shorts in public because I was embarrassed of my legs. Now I want to show off my new Helios made by Ortho Rehab Designs. I'll send you some pictures when we get back.
You're such a blessing!
Christine H., Age: 35, CMT
The Helios Orthosis
Green Island, New York
I was writing to let you know of my progress! Since getting the braces from you in November, after my breaking in period was over, I have noticed a lot of things:
I have had several situations in which I was forced to walk on uneven ground, because of traffic, puddles, etc., and with each one, I navigated the changes successfully, without needing any assistance at all. Most especially I have noticed when I am in the store (around the holiday season) that I not only can last SO much longer, the crowds and lines are not affecting me as they used to. I realized this in Wal-Mart over the weekend, when I was trying to get to the "office supplies" section. It was extremely crowded, and a mom with her four kids running toward me, along with a cart that came flying around another corner did not stop me... I zigged, then zagged, and went on my merry way. I haven't been able to do that since grade school!
Everyone I see it so amazed at the changes-I've been told by several people that I am taller and straighter, and even look thinner because I am no longer bent at the waist, with my hips rotated/feet turned in. My family has passed on this information to a friend of ours that knows a young woman of 34 with the same balance issues I had. I spoke with her and told her how much these braces have changed my life, and am hoping that your braces may help this woman in the future.
The biggest surprise I've had yet was just last week-the doorbell rang, and I ran down to answer it-then ran back up the stairs with the package that was dropped off. After sitting down to open it, I realized how fast I had gone up and down the stairs. It was unbelievable!
I don't know if words can express just how much you have given me-to say "thank you" is not enough! You have given me my independence back, which is so important-being 35 years old, with so many years ahead of me, to lose that now would be devastating. I feel like you have given me back my life!
I am so thankful to have met you, and for this experience to happen now when it was needed the most!
Betty H., Age: 63, CMT
The Helios Orthosis
I can't believe how blessed I am to have found you and these new legs! It is only 13 days since I first strapped them on and I am walking like a normal person!
Here is my list of "normal" things that I can now do;
Stand by the sink and wash my coffee cup (without sticking a knee against the cupboard).
Walk to the copier and stand there while I make 50 copies (without holding onto the copier or using my cane).
Walk wherever I want and not worry about the cane or touching the wall.
Even walk diagonally across the room!
Bend over and pick something off the floor or wipe up a spot on the kitchen floor (without holding onto anything).
Kick a ball down the hallway while playing with my grandson.
Sidestep, walk backwards. Rock up on my toes! Touch my toes (exercise) 10 times without falling.
Stand in the arena lobby and talk with an old friend for 10 minutes (without the cane and without doing my little shuffle dance), and the list goes on...
I am wearing the braces from 7 a.m. to 10 p.m. and enjoying every minute! Driving seems to do just fine.
The good news is no one seems to notice my disability now. The bad news is no one notices and I want to tell the world!
I have appointments with both my hip surgeon and my neurologist in the next month. I can't wait to show them!
You are a miracle worker! Thanks again.
Barb S., Age: 53, CMT
I'm really doing well with the braces. It's hard to imagine life (or walking) without them. The braces are extremely helpful for support and stability, and I'll make sure to rehabilitate with them. In the meantime I will probably be out on the bike this weekend and most definitely take a picture showing off the braces on the motorcycle. Thanks for everything.
Angelo Santini, Age: 47, CMT
The Helios Orthosis
I wanted to drop you a note to express my most heartfelt thanks and let you know how I am doing with the braces. For the first time in my life, I feel confident walking distances! Walking, which is elementary to most, has always been a source of anxiety for me knowing at anytime I could fall, twist a knee, or just plain become exhausted very quickly. For the last 15 years, except for work and an occasional vacation here and there, I had become almost housebound.
Since I have the Helios, I have reclaimed my life! I am no longer afraid to go out, no longer afraid of tripping, and no longer become dog tired from walking. I have been walking 5-6 miles a week now and feel great. Honestly, I never realized how much I struggled each day until using the braces. Getting out of bed now is something I look forward to! WOW! I no longer feel I have to park in handicapped parking! I want to park and walk. Just typing the last few words amazes me, never thought I would ever say that.
Your patience and understanding Mitch is priceless. Of course, trying to tough it out for the last 30 years or so, I had no clue of the adjustment period. You listened, helped, and tried to understand where I was coming from. I know I would not be in today's comfort zone without you, I owe you for giving me my life back.
Elaine Sullivan, Age: 53, CMT
The Helios Orthosis
I am currently 53 years old. I was diagnosed with CMT at the age of 36. At the age of 45 I began to have weakness in my lower legs and trouble with balance. I began wearing AFO's a couple of years later. With the AFO's I could walk better, however I walked slowly and with much effort. They didn't help with balance. I couldn't stand without touching something. In June of 2004 I went to see Mitch and was fitted with Helios braces. Now I can walk much faster. I don't get fatigued when walking and I can stand in the middle of a room without touching anything! These braces have improved my life tremendously. As an added bonus Mitch and Michelle were great to work with.
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February 21, 2004
Fred Haag, Age: 78, CMT
The Helios Orthosis
San Diego, CA
It was two weeks ago that I left your office in Las Vegas and headed back to San Diego with my new braces. Your words were "Do not place any expectations on yourself for the first two weeks".
During the first week my wife went with me to my athletic club to be sure that I did not fall in my transit to and from. I did my usual Pilates with my trainer as well as the swimming (without the braces) also with a trainer to get the maximum out of these workouts. I had no falls or other mishaps for the week. In the second week I timed myself from the garage to the front desk of the club. Before braces it took me thirty minutes fraught with great danger due to my instability, upon arrival I laid down to recover from the exhaustion. However with the new braces from you it took me five minutes and I was fresh and ready for the exercises.
Also during the second week I wrote a letter to four of my doctors that are acquainted with my Amyloidosis if they wanted to see my new braces and the fantastic results they provided. An answer was received and I went to see Charles Jablecki, M.D., my local lead neurologist. He called me into his office and was amazed with my mobility and steady pace of walking as well as my ability to stand without leaning on anything or anybody. Charles took pictures of the braces and was delighted that I found Mitch Warner. Since he lectures at various campuses he said with excitement that he will tell the younger doctors of my find.
After leaving my neurologist, I went to see Jackie Macauley at Sharp Rehab Center who had examined me and said "Before we do anything you must get leg braces". She told me that she had heard about light weight braces and through a variety of circumstances I found the brace on a website. That was Mitch Warner's home page. I wanted to thank Jackie Macauley personally for changing my life with these new braces. And so I did. Jackie was amazed and my ability to stand while talking to her without leaning against anything. After a nice visit, listened to by a lot of the PT's and patients all smiling, I turned and walked out and I heard her say a big loud "Wow".
This is my report for the first two weeks of my new braces Mitch. Thanks a lot for your contribution in changing my life. Back in my home town we say "You did good".
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January 16, 2005
Jack A. Graves, CMT
My first awareness of the braces made by Mitchell Warner of Ortho Rehab Designs in Las Vegas came from an article in the December, 2002 issue of The CMTA Report. It was titled "Designing An Energy Loading Brace For CMT" and discussed a type of AFO using a carbon-graphite device. The article intrigued me and I made an appointment to see Mr. Warner. He was most gracious, very helpful, and indicated he could indeed design braces for my CMT condition. The project took about a week for diagnostic fittings, fabricating the device, etc. When I put on my Helios braces and stood up, I had tears in my eyes for it was the first time in almost thirty years I could do so without the feeling of losing my balance -forward or backward. Mitch indicated it would take a while to get used to the braces, gave me some instructions, and I carried them back to my home-an eight hour drive.
One day I tried to drive my car but I got concerned before I even left the garage because it seemed as if my shoe was hitting the brake pedal after I lifted it from the gas pedal. This bothered me and, since I live alone, I was extremely worried I could not drive my car. The braces really did help my balance and my walking (no more drop foot for the braces held my feet in a fixed position) and I decided it was time to take a positive approach.
I took the braces out to a new shopping mall where a store there had a huge parking lot. I had noticed on previous visits to the area that no cars were ever parked in the far end of the lot and this would be a safe place to practice. I put on my braces and, since the sun was shining brightly, I could see down to the gas and brake pedals. I discovered, much to my delight, there was plenty of room and I was able to move from one to the other with ease. I noticed I was using my thigh muscles, which I was doing without the braces, so having them on felt quite natural. I felt comfortable in only about five minutes! Now the big test was whether or not I could do so in traffic without being nervous. I left the parking lot, got into the main street, and drove with ease. In fact, I felt more confident with the braces because there was no drop foot action and no weakness in my ankle! So, now I wear the braces whenever I go out and I have so much confidence and a feeling of self-worth for I don't have to worry about tripping or that I walk "funny". If someone stares now I just hold my head high and walk with a purpose. It is such a grand feeling not to have to look down most of the time or to worry about tripping over the simplest of things.
I definitely do recommend these braces to anyone with CMT who has the usual walking and balance problems which often accompany this disease. Mitch knows his work and is always willing to assist in any manner necessary. Anyone can e-mail me if more information is needed.
Jack A. Graves
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March 18, 2005
Gail D., Age: 52, CMT
I called Mitch Warner of Ortho Rehab Designs in late December of 2004 and decided to take the trek from Chicago to Las Vegas to try his Helios braces for my CMT. I was hopeful but honestly didn't know quite what to expect. Three weeks after my return home, I am nothing short of ecstatic.
I am 52 years old and was diagnosed with CMT in my late 20's when I had a triple arthrodesis on each of my ankles. I started wearing AFO's about 12 years ago, walked/limped slowly along, and essentially could not stand still without touching something or someone. For me, I think the balance problem was the hardest part of having this disease because it caused me to start avoiding more and more situations over time and ultimately was becoming quite limiting.
My neurologist said there wasn't anything that could be done to improve my balance. When I called Ortho Rehab Designs, Mitch said there was. His certainty was what led me to take a chance and visit. And he was 100% right. With the new braces, for the first time in years, I can stand perfectly still without touching anything for as long as I desire. Moreover, my gait is now actually normal or very close to it, I stand straight rather than bent at my knees, I walk at a more normal pace, and can walk much further without fatigue. The change has been dramatic and immediate, and I'm told that the full change generally takes a couple of months to achieve. Put simply, I am thrilled and very happily surprised that my most hopeful expectations have been far exceeded.
Mitch was a pleasure to work with through the entire process, gives you his undivided attention, and customizes everything to each person's needs. Michelle shepherded the insurance claim process and clearly knows those ropes, which is important because the braces are expensive. However, when I consider what they have done for me in such a short time, the cost is well worth it. My quality of life has been significantly improved.
I could not recommend Ortho Rehab Designs more highly. Thank you Mitch and Michelle!
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July 7, 2004
Betty Darrenkamp, Age: 50, CMT
I would highly recommend Mitch Warner and his Helios II and double Helix braces for anyone afflicted with CMT. The stability and feeling of security of not falling are wonderful! I also have severe recurvatum in my left knee and the brace holds my knee in check, preventing further damage to the ligaments. I am able to walk longer distances than ever before with my braces.
If anyone is wondering about after care or having problems with their braces once they are back home, I can attest to the fact that Mitch will do anything in his power to prevent that by carefully fitting test braces first. Mitch is a very caring person and you can rest assured that he will keep in touch with you after you leave his office.
If I can ever be of help to you Mitch by offering my e-mail or phone number to a perspective patient with CMT please don't hesitate in letting them contact me.
Thanks again Mitch for your wonderful braces and your caring attitude!
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CMT patient answers questions From Another CMT Patient
Thanks for your e-mail. My experience with Mitch was so positive that I'd gladly respond to your request for more information:
Q. Which Helios brace to you wear?
A. I wear the double Helios style.
Q. Do you wear one or two braces?
A. One on each leg.
Q. The how well do you walk with the braces?
A. The best I have ever walked in my life. No question about it. I was diagnosed at age 20. Discovered these braces at age 32. I had so many bad habits created in my gait. These braces, along with some discipline to remember to straighten my knees when I walked, changed my gait forever. When I walk now, it is fluid, and you would not suspect that I have CMT. In fact, to give you an even more compelling argument, I am now 34 and 7 1/2 months pregnant. I was very nervous that I would have problems with my legs and my stability during my pregnancy. With 9 weeks to go, I still have no problems and my balance is near-perfect. I think it has to do with a good diet and these Helios braces. Even more important than my gait improvements, my balance is near-perfect. I can stand still for hours at a time (when standing on both legs), not feeling the slightest bit clumsy or off center. (Remember again—even at 7 months pregnant, my balance hasn’t changed!).
Q. Has it improved your balance while standing still?
A. Please see above. The results are impressive when you are used to always having to hold onto something.
Q. Do you need to use a cane?
Q. Did your medical insurance pay for the braces?
A. Yes. Check out your benefits to see if they cover this type of durable medical equipment and be persistent. I recommend that you get everything preapproved, if possible. This doesn't (shouldn't take very long). Collecting after the fact is very difficult.
Q. How long have you worn the braces?
A. Going on two years in June.
Q. How long did you need to stay in Las Vegas to be fitted?
A. 1 week -- there is so much to do! It was like a mini vacation for me -- even being alone.
Last but not least, Mitch is very responsive. I live on the East Coast and he responds very quickly (within 24 hours of my calls if not sooner). The stellar customer service you receive from both Mitch and his assistant Michelle make your investment that much more worthwhile. Any potential problems are addressed promptly. Michelle also has experience working with insurance companies. Although I had to file everything myself, she gave me very good advice throughout the process.
My bottom-line recommendation is: just do it! Good luck!
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November 22, 2003
Michael Meyer, Age: 58, CMT
The Helios Orthosis
New York, NY
To all those with CMT, who would welcome the ability to walk with a normal gate:
Over the past eight years, I have tried various types of braces. I have found this to be a thoroughly exasperating experience. Physicians lacked knowledge in bracing and orthotists did not understand the needs of a person with CMT. Also, they lacked the knowledge of innovative approaches and offered few options (the ‘One Brace Fits All’ concept).
I was searching for a brace that would act as a support for the muscles that were reduced in their strength and function, and additionally allow the muscle groups that were still working to perform.
Also, I wanted a brace that was comfortable, would enable me to walk with a normal gate, offer stability while standing or walking, and support proper posture.
If you have ever searched for a brace, you probably find my desires equivalent to ‘The Impossible Dream'.
My search is over thanks to Mitchell Warner.
Mitchell Warner at Ortho Rehab Designs has developed and trademarked braces specifically for CMT. He possesses the knowledge and experience to evaluate and recommend solutions based on an individual’s needs.
I spent five great days in Las Vegas, NV, receiving the ultimate in courteous and professional care.
I am now able to out pace a majority of pedestrians in Manhattan. The Helios Orthosis enables me to stand and walk with stability. I can navigate uneven surfaces, and climb and transcend slopes. Achieving all this with absolute comfort and proper body alignment.
Thanks again Mitch.
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I found Ortho Rehab Designs while doing research on bracing for CMT. After speaking to other people who were wearing the Helios system in Southern California I decided to take a trip to Las Vegas for an evaluation.
I was quite amazed to see so many other patients on videotape with CMT that were helped by this bracing system. My only concern is that initially my feet were much more severe than most patients I had seen. As I had severe foot deformity in both feet, my physicians told me that there was nothing that could be done for me, and they doubted that any bracing system could help to correct my feet considering how much damage there was to my feet at the time.
I am pleased to tell everyone that after my visit at Ortho Rehab Designs the Helios brace has made remarkable corrections. On my left foot the brace put in a correction of my foot of 34 degrees, and on my right foot there was about 25 degrees of correction. After wearing them for the first week I was able to go shopping again and walk all about the town without any pain, and with increased function and speed. I highly recommend this to any CMT patient or any other patient that is in need of leg bracing.
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Los Angeles, CA
I needed a brace due to a gastrocnemius paralysis. I had tried different braces and learned of Ortho Rehab Designs and Mitch Warner through referrals in my city. Initially I had doubts about this working as I had been through several braces before. After being treated with this brace I can tell you that this has been the solution for me, and additionally it has allowed me to walk with greater velocity and energy. It has also allowed me to return to the sport of paddle tennis which I now play three times a week. I am very pleased with this outcome, as it has helped me more than my expectations.
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I just returned from a 1.2 mile walk in the neighborhood and it seemed only appropriate to drop you a note to advise you of my progress.
As you know, I have CMT type 1A. Over the past several years my level of medication and my weight has increased fairly dramatically while my mobility and general quality of life has decreased. Prior to September I was using a pair of polypropylene-based braces that offered some protection from dropfoot but afforded very little lateral support. The material had begun to fatigue after about six months, and my idea of a long walk was to reach the back of a Wal-Mart store. I had been advised by a local podiatrist, and a neurologist from Mayo Clinic that this was about the best I could hope to expect; that is until I read an article about you and your product in “CMT Today”.
When I left your office three months ago I could barely stand up in my new Helios braces without assistance, and I must admit to a great deal of trepidation. After purchasing the proper footwear and “learning how to walk” again however, I cannot be happier. The biggest plus to the Helios II, aside from simply walking, is in the area of Balance!! My biggest source of embarrassment for many years has been my inability to simply stand and converse with someone without losing my balance; the new braces have taken away that fear.
I sincerely want to thank you for the amazing improvement your Helios II brace brought to my quality of life. Should you have other patients who you think might benefit from my experience, feel free to share my e-mail address or work phone number with them.
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April 5, 2002
Las Vegas, NV
Since I started wearing the Helios leg brace I have been able to walk with little or no pain, and walk faster. I can go up and downstairs now (using a railing) normally without having to use both feet on one step. My foot sometimes swells, but with the open brace design it doesn’t get tight like the old brace. In addition, I am able to walk for greater lengths of time, with more speed and much less fatigue.
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John Fox, CMT, June 2003
Age: 75, Indiana
I have wanted to write and thank Mitch Warner in Las Vegas. I called him after I reviewed his website. Following my appointment I wore my new Helios braces home and have worn them daily with astonishing results. It took a few weeks to “break them in” but now for the first time in 5 years I can stand without touching or holding on to something, what a godsend. My gait is much faster and I can walk much further, whereas with my former AFO’s I became fatigued after walking a city block. I have looked all over trying to find the perfect braces for me, and I am thankful that I have found them!
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Eric Taylor, Age: 32
Occupation: Registered Cardiopulmonary Technician
Left: Transfemoral prosthesis
Right: Symes prosthesis
Las Vegas, NV
As a user of bilateral prosthetic devices, endurance and comfort are critical to me. Working in a hospital keeps me on my legs all day long. When I am not working, my activities include: restoration of vintage automobiles, landscaping, and boating, to name a few. These new prostheses are extremely comfortable, and give me a high degree of stability.
The locking silicone liner on my above knee amputation is a great innovation. My previous prosthesis was made with a total suction fit (with a valve). Even though the socket fit me, I would constantly lose suction throughout my workday, as my stump would shrink. This prosthetic system has let me become more active, without pain.
With the locking silicone fit, no matter what changes my stump might have throughout the day, the prosthesis will not migrate down. Once it is locked on, it stays locked on until I am ready to take it off. This prosthesis is much easier to put on than my old valve suction limb.
My prosthesis has a Mauch SNS hydraulic knee, and an energy storing-multiaxial carbon graphite foot. I highly recommend this prosthetic system for anyone who wants to be highly active.
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Thomas Hellermann, Age 60, Transtibial (B.K.)
This locking silicone suction socket is the most comfortable and secure fit I ever had. On my previous prosthesis I always had pressure on the end of the amputated bone, due to the way my stump healed after surgery. With the silicone liner, there is no pain. The combination of the flex-foot and endolite shock pylon give me great function. I live out in the desert where there is a lot of uneven ground, and my prosthesis is made to adjust to these uneven surfaces. The shock pylon also provides me with a comfort zone, as it reduces the impact pressures on my stump. For the first time I can run, and even hop on one leg! My new leg has far increased my activity and endurance level. Amputees should be made aware that there is prosthetic technology available to improve their lives.
Mitch, thanks for the extra time and care you put into my prosthesis.
Matthew Perrin, Age 10, Double Helix/Dynamic Response Spiral
March 2, 2001
To whom it may concern:
Due to having a severe stroke at the age of five, my son Matthew has been wearing a right helix leg brace for the past four years. The correction that has occurred in Matthew's leg has been undeniable. Matthew struggles daily with his gait and tightness of his ankle. This brace allows him to have freedom of movement he would not have otherwise.
Mitchell Warner with Ortho Rehab approached me with the idea for the helix brace after Matthew had been in an AFO. From the very beginning this brace has improved Matthew's range of movement and greatly helped his leg/foot from tiring. As Matthew continues to grow, the brace needs replacing about every 12-13 months. Over time we have watched each one of Matthew's braces improve.
Matthew is a very active young boy and always on the go. He plays the catching position on his baseball team and is an avid motorcycle rider. If he is out of his brace for even a day or two, you can really see the difference. This newest brace, the double helix, allows Matthew the comfort of all day wear and correction. Although in the past he has chosen not to wear his brace when he runs, he is now wearing it at all times. At ten years old, he can run a mile in less than nine minutes. Given the fact that his right side was completely paralyzed just four and a half yeas age, this is a remarkable accomplishment.
We feel very blessed that not only are we in a time that we can enjoy these benefits in technology but that there are people out there such as Mitch/Ortho Rehab that care such a great deal for their patients.
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Left side transtibial amputation
Due to my industrial accident I received a left below the knee amputation. I have tried several types of prosthetic devices and gone through much pain and suffering. I was only able to walk short distances due to severe pain. The end of my amputated bone pushed against the skin terribly. It was like pushing your finger against plastic wrap. My doctors began to think that I could not be fit with a prosthesis unless I had a surgical revision to my stump. This is something I did not want to do. I had been through enough surgery and still wanted to try a prosthetic solution.
It was at this point in time that my physician referred me to Mitch Warner at Ortho Rehab Designs to see if anything could be done. Mitch advised me of a new approach to fitting my stump with complete hydrostatic pressure using the latest technology in locking silicone suction sockets. I have to admit in the beginning I thought that ultimately I would be headed for a surgical stump revision. Mitch walked me on diagnostic sockets, and it was from there that he made the necessary adjustments. Much to my amazement when I first walked in my new silicone suction prosthesis, I was able to walk pain-free for the first time since being fit with prosthetic devices. Because of this I have returned to an active lifestyle. I can walk on my prosthesis 14 hours a day pain free!
The kind of work I do mostly is landscaping my back yard and general work around the house. I installed my entire backyard's sprinkler system using heavy equipment with only the assistance of my wife Jennie. It still amazes me that I can walk normally and be pain-free on this prosthesis. I walk so well that no one knows I am wearing a prosthesis. If anyone would like to contact me to discuss the benefits of this prosthetic fitting method, I would be glad to speak with them.
Las Vegas, Nevada
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The Double Helix braces have worked extremely well for me. I have significantly increased my stability and find them to be flexible enough to drive without the assistance of hand controls. My plan is to have adjustments made periodically in the years ahead as these braces can actually improve, and not just maintain the status quo. The notion of improvement is not often associated with the progressive nature of Charcot-Marie-Tooth.
Personally, I highly recommend Ortho Rehab Designs and the Double Helix braces. What they've done for me is remarkable.
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August 1, 2000
Yozamp, Bilateral Spirals
Mitchell S. Warner
Ortho Rehab Designs
601 S. Rancho Drive, #B-14
Las Vegas, NV 89106
I would like to thank you for all your help. After wearing two different braces, I have to say, "that the Spiral is a much better brace versus the AFO brace".
While wearing the AFO braces, I was limited in the mobility and use of my legs and ankles. I could not turn quickly, without falling down. My ankle was too rigid for movement and the strap across the front of the brace, would hurt the bone in my leg. Also with my disease, the AFO braces became inadequate for me to continue walking, because I started to fall down, even though I was wearing the AFO braces.
When I was fitted to the Spiral braces, I felt as if I had my legs back. I could move quickly, turn quickly, and feel comfortable. Of course there was adjustments to the new brace, but that came quickly. I was very uncomfortable to be in a crowd of people while wearing the AFO braces, because I was afraid that someone would bump me and I would fall down. But wearing the Spiral braces, I felt comfortable and stable while wearing them in a crowd of people.
Many people have stopped me and asked about the Spiral braces. And all I can say is "the Spiral braces are much better in performance ability than the AFO braces".
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February 26, 2002
Robert Kaufmann, Age: 62, Peroneal Neuropathy
The purpose of this letter is to let you know of my satisfaction with the professional services you have provided over the last five years. Because of a motor neuron disorder I have lost significant motor function in my right leg and hip. Walking has become increasingly difficult. With the single and, more recently, double helix leg braces I can walk and have use of my leg for standing, as well. Without the brace the combination of foot drop and motor deficit results in a gait that is exhausting because I must compensate with raising my hip and circum-ducting the leg to obtain necessary foot clearance. Further, the right foot is severely pronated and a small amount of standing or walking quickly leads to total fatigue and discomfort.
The double helix brace, in particular, provides considerable correction of the aforementioned deficits in the positions of my foot and leg and assistance with my gait. I routinely am on my feet for much of an 8-hour or longer day and I just recently was able to walk up to a mile when periodic rest stops were made. Without the brace these activities are impossible.
Aside from the beneficial results of your efforts, I must point out that your obvious skill in working with difficult, costly materials (e.g. graphite, silicone) has been accompanied by every consideration for this patient's comfort, schedule, and input. You clearly listen to patient concerns and needs. Incorporation of patient input and your appropriate timely reaction are very commendable and exceptional in this day of "10 minute medicine".
Thank you for a job well done.
Robert F. Kaufmann, Ph.D.
Consulting Hydrogeologist (Ret.)
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Monica Tullar, Age: 30, Charcot-Marie-Tooth
One of the many benefits of the helical orthosis, I thought to be, is the ability to move from side to side. What I mean by that is rolling from the outside edge of the foot in towards the arch and back out again. In other braces that motion was never available. If you walked on an uneven surface, since the ankle couldn't give, it would take the knee out. In any other brace walking on an uneven surface was a disaster. The ankle wouldn't give at all, so the knee had to give totally throwing me off balance.
The ability to move from the outside of the foot to the inside of the arch just didn't exist. This, the brace doesn't just spring you forward; it rotates side-to-side giving you the ability to keep your stability while walking on uneven surfaces.
Being a photographer who often works outside, I am constantly having to lug equipment up and down grass, gravel, and sand. Have you ever tried to walk in the sand with braces? It made such a difference I couldn't even believe it.
I have to say one of the other great benefits of the helical orthosis was for the first time when I got a new set of braces there wasn't that long process of two hours this day, four hours the next day trying to build up. I wore them for a few hours one day, the next day I wore them a ten-hour shift at work.
No sores, no spots, I was really shocked. The difference was
that this pair of braces had custom silicone padded footplates,
designed by Mitchell Warner at Ortho Rehab Designs. It totally
reduced the everyday pressures on my feet, and allows me to stand
and walk for longer periods.
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