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