CMT Disabled 58 Year Old Woman Seeks Grant Money For Leg Braces
by Susan
During those years of onset of the disease, I suffered many falls, and pains in my legs. Falling at the age of 31, I fractured my left ankle and ripped tendons. The doctors told me I must begin to be fitted with plastic orthotics that fit in my shoes to correct my foot drop and weak ankles due to the damage of a disease called CMT. This disease destroys the peroneal nerves on the front of the legs, which causes a foot drop, and deformities of the feet. I tried to work, raise three children and was in and out of physical therapy three times a week for long stretches of time to try and strengthen what muscles in the leg still functioned. Over the years until the year of 1993, I became disabled and was put on Social Security Disability. After a long and difficult divorce from a marriage that lasted 17 years, I was left raising a 4-year-old son and 10-year-old daughter on my own. I was forced to work a part-time job as a cashier in a local food store to support myself, manage a mortgage on a house and raise the two children. Unfortunately, by earning over the limit and collecting a benefit for disability from Social Security, I incurred a large overpayment for the years I tried to work. Now, after six years of the process of waivers and stoppages of full benefits, I have agreed to a loss of $100 a month of benefits for the next 27 years to help pay off the large overpayment to Social Security Disability. I now live on a $666 a month benefit check probably for the rest of my life. If it wasn't for a friend who rented me a room in his house, I would certainly not be able to afford to live in any one-room apartments in any area of this USA. I have been trying to treat my hands as well now for the past 17 years, since the disease has ravaged my forearms and hands now. I cannot pick up a piece of paper on the floor with my right hand due to the loss of muscle tone to my hands. Working is impossible now, as I am totally disabled since 2004 due to an auto accident driving home late at night, during a snowstorm from a job on route 80 in PA. It left me with permanent neck and back injuries. I had to purchase an Anodyne machine with a co-pay of $299, which I have to pay in four installments. This machine uses electronic pads that heat up my palms and bottoms of my feet. It helps the poor circulation I suffer, with loss of sensation due to coldness and numbness in my hands, legs and feet. I have tried wearing many kinds of braces including a current pair with metal side bars attached to orthopedic shoes that only lasted a month before the metal rivet broke and the stirrup worked its way through the heel of the shoes. Now, I am forced to again, rely on my 12-year-old duct-taped older braces to walk around in till these are fixed again. Today, while researching any new types of braces for CMT affected patients, I discovered a pair called Helios, which are made in a place called Ortho-Rehab, Las Vegas, NV. I have to pay about $1000 worth of plane fare, lodgings, car rental and expenses for five days to be fitted with these braces which are the best ones available since the Doctor that owns this facility, wears them himself for he has CMT. The cost of the braces could be upwards of $20, 000 for the pair. I cannot afford to pay the 20% difference that Medicare will not cover due to my present income of only $666 a month. I have PA state Medicaid and they do not cover any out of state medical expenses. Since the braces are not made around here, I must travel out of state to receive them. I feel that a government sponsored grant would certainly be of great benefit in improving my state of health and mobility issues due to my disease, that is continuing to gradually worsen with improper bracing.
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