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Grant Money To Help CMT Disabled Woman Improve Mobility With Leg Braces

by Susan
(Hazleton, PA, USA)

I am a 58-year-old woman that has suffered CMT (Charcot-Marie-Tooth) Disease from the age of five.

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.

Comments for Grant Money To Help CMT Disabled Woman Improve Mobility With Leg Braces

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Feb 05, 2013
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This might help
by: Kim Hubbard

I appreciate your willingness to share your story. It has to be frustrating to know there is help, if only it were affordable. There are funds out there that most people probably are unaware of. I suggest you visit http://www.ability-mission.org/benefits. It will give you instructions for using a site that determines eligibility for grants based on individual circumstances. God bless you in your search for answers. Keep us posted!

Feb 01, 2013
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More Points
by: Anonymous

This comment is directed at "Another Point of View." I am stunned and appalled at your comment of focusing on herself and feeling self-pity as the reason this woman is in the dire straits she is experiencing currently. The fact is, if her medical and health needs are taken care of she will be able to live a much more productive life. My suggestions are to go to United Way, Friends of Man, or the Dominican Sisters -- all who deal in charitable outreach to the poor and disabled. Good Luck and God's blessings!

Aug 14, 2011
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Help
by: Anonymous

I would say you have had a very hard go of it. No pity, but just concern. Hope you got the help you needed.

Jul 21, 2010
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SSA Ex-Spouse Benefits
by: Anonymous

From the Social Security Administration...

Qualifying for divorced spouse benefits. Updated 04/23/2010 02:44 PM | ID #299

How does a divorced spouse qualify for benefits?

A person can receive benefits as a divorced spouse on a former spouse?s Social Security record if he or she:

Was married to the former spouse for at least 10 years;
Is at least age 62 years old;
Is unmarried; and
Is not entitled to a higher Social Security benefit on his or her own record.

In addition, the former spouse must be entitled to receive his or her own retirement or disability benefit. If the former spouse is eligible for a benefit, but has not yet applied for it, the divorced spouse can still receive a benefit if he or she meets the eligibility requirements above and has been divorced from the former spouse for at least two years.

Benefit amounts for divorced spouses. Updated 04/30/2010 03:41 PM | ID #367

How much can a divorced spouse receive?

A person who is divorced after at least 10 years of marriage keeps certain benefit rights on their former spouse's Social Security record. In order to get benefits, a divorced spouse must be at least age 62 and the former spouse must be eligible for benefits, but not necessarily receiving them.

The maximum benefit is 50% of the benefit the worker would receive at full retirement age. However, benefits paid before the full retirement age of the spouse are reduced based upon the age of the spouse at the time benefits are received.

If 50% of the Social Security Benefit for your ex-husband (of 17 years) is higher than $666 a month (and it most likely is) then you can receive, at age 62, the higher amount (as long as you stay single). So you will not be receiving $666 a month for the rest of your life, but much more.

Good Luck.

Jul 17, 2010
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Another view point
by: Anonymous

Someone recently told me, "If people would stop centering their life on themselves and start caring about other people, they might be happier in life."

To me, it makes total sense to stop saying, "If I only had this, or why is this not working for me," and let go of the "me, me, me, me" mentality and put "others" in place of it, you live a happier life.

Self-pity discourages help.

May 01, 2010
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Leg Brace -- Medicaid Approved Resource
by: Katina from Ability-Mission.org

As a disabled person myself, I can sympathize with your situation and I definitely understand your need for help.

I've done a bit of research and found these resources for you:

Help with Leg Brace Cost/Medicaid Approved!
St. Petersburg Limb & Brace
1001 37th Street North, Suite B
St. Petersburg, FL 33713
(727) 321-3900

Others reading your story may be able to contribute more. In any case, please let us know if they've been helpful to you.

Katina from Ability-Mission.org

Good luck!

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