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63 Year Old Man With Charcot Marie Tooth Seeks Grant Money For Leg Braces

by Verne
(Bunker Hill, IN, USA)

I am a 63-year-old male and was diagnosed with Charcot-Marie-Tooth with peripheral poly neuropathy along with Ataxia about 10 years ago.

I have lost feeling from the toes to mid-thigh now along with muscle tone. I cannot stand unaided and use boots with built in braces and a cane to walk short distances.

Long distance must be done with a scooter or wheel chair. Steps are next to impossible especially if they are high.

I am no longer able to drive and truck driving was my occupation. I have not been able to work since December of 1999. Doctors have determined I am 90% disabled and 100% unemployable.

There is a carbon fiber brace called a Helios brace that is doing great things for CMT patients. One supplier has evaluated me, but the cost of $10,000 to $20,000 PER brace and the fact that their braces were not medically coded put them way beyond our financial reach.

That cost did not include the trips to a near by city for therapy to learn to use them or my wife's lost work time and of course gas and meals.

Recently we located a place called Ortho Rehab Designs in Las Vegas who have been in business 10 years and are making the braces we saw last March. These braces are medically coded and range from $6,000 to $24,000 a PAIR depending on the one you need.

The problem is you have to travel to Las Vegas, spend five days with them but then you can leave with braces and no further physical therapy is involved to learn to use them.

We would need a hotel for seven days, meals, airfare and a rental car.

There are many success stories with this carbon fiber brace. One young lady is now actually running, something she hasn't done in 15 years. Another man completed a 26.2 marathon in the Helios brace.

My mind is boggled when I think that I might actually be able to walk again on my own power. No more bulky boots as these braces can be worn with regular shoes saving us on footwear costs as well.

We are praying for grant money to help us obtain the braces. I know that I will not be able to return to work because of further damage done by the CMT, but for me just to be able to walk on my own would take a lot of the stress off of my wife.

Information on these braces can be found on the web at Ortho Rehab Designs, Las Vegas. Michelle there has been very helpful in answering our questions.

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Nov 01, 2011
48 and they said it's CMT
by: Ray

The first thing is to get your SS disability. I've been at it for almost three years, with two denials and now a hearing in January 2012. It's been a long battle but the docs finally found out I have axonal CMT type 2.

Once I started the SS application, the state of Oregon recognized my need for insurance and set me up with OHP Medicaid, so that until I get my SS I will have Medicare insurance. I was able to get Medicaid insurance that let the docs do many tests and exams and X-rays.

Throughout this process I was introduced to my local chapter of the MDA, they are wonderful people that will help you get leg braces if they feel they will help you. They may not be the ones you want but any type is better than nothing.

I am going to see if they can get us CMTers the helio type. The MDA sure has helped me when I needed it, and they are very prompt. They will help you get all kinds of things you need to assist you along your new journey in life, things will more than likely continue to get more challenging as my life goes on the docs have informed me.

Aids of all kinds are of the utmost help when you have progressive disability like CMT. Mine has got so bad that I have not been able to work since November of 2008. It is now November of 2011. Mine has also affected my vision, and created a high pitch constant ring in my left ear.

I have trouble walking and balance issues. I tipped over the other day in the hallway and put the doorknob through the wall at the end of the hallway. I'm feeling a loss of sensation in upper and lower extremities, coldness, numbness, tingling and even the sensation of bugs under my skin. And I get a lot of ocular migraines.

I had to stop driving a while back when I almost hit a feller on a motorcycle; I did not see him in my blurred vision areas. (Sorry about that!) It scared me more than him I do believe. That was when I came to grips with myself and had to admit I will need help from others, once in a while.

Good luck with your braces. You can get help; it is out there. Just keep knocking at every door and avenue you can find. Happy trails!!!!! And always thank your spouse and family that help you out. It is hard on them too.

Oct 28, 2011
I also have Charcot Marie Tooth
by: cynthia

i understand what you are going through. I also have Charcot Marie Tooth and I'm having great difficulty with walking and balance. I have fallen 8 times this year alone now with a broken foot. I was wanting to get the same braces but had no idea they were that much money. I hope you get your grant. Maybe that will break ground for the rest of us Good luck and God Bless You

Feb 05, 2010
MDA Support
by: Anonymous

CMT is one of the diseases that the Muscular Dystrophy Clinic supports. There is one in Indianapolis and could tell you if there is one closer to you. Call them and ask for an appointment. They will see you for free if you do not have insurance. Also you may be able to get Social Security Disability, which would get you medicare.

Jan 25, 2010
CMT Help
by: Anonymous

You may want to join CMTUS to connect with others about Helios, Ortho Rehab Designs and other important info. Free membership, tons of research info, much hope for treatment:

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