Father With Primary Lateral Sclerosis Seeks Grant Help For Bioness L300
by Jeffrey Tayloe
(Wilmington, NC, USA)
I am a 52-year-old father of a son, age 21, and in college and a daughter, age 6, in elementary school.
I worked as a counselor in the public schools of NC and VA as well as for a hospice working with children whose parents had died.
I have also worked as a counselor in mental health clinics, working mainly with adolescents and children.
In 2002 I was diagnosed with Motor Neuron Disease. I worked until 2012 when the disease progressed to the point where I had to stop working and begin applying for Disability through Social Security and my employer.
I am now receiving Social Security, Medicare and long-term Disability from my employer. I receive medical treatment from the Duke University ALS Clinic.
My diagnosis is a rare disease, Primary Lateral Sclerosis.
I live on my own and am fairly self-sufficient.
I am currently helping my son pay for college and I pay for medical insurance for both of my children.
I have a Baclofen Pump surgically implanted in my abdomen. I take a myriad of medications to treat symptoms of my disease, PLS.
I have received a grant in 2012 for $500 from the Jim Catfish Hunter ALS Chapter to get an iPad to help me communicate verbally and to type.
I receive Social Security Disability and long-term Disability from my employer.
I seek funding for a set of Bioness L300 foot drop devices. The Bioness L300 is a biomechanical device that stimulates nerves to lift my foot when walking.
Toe drop leads to falls. I have broken my wrist three times, my elbow and my ribs on two separate occasions.
I have used the Bioness L300 on four separate occasions. It works! When wearing the device, I have better balance, the ability to walk faster and a feeling of safety that I have not felt in five years.
Medicare considers the devices "experimental" and will not pay for them. They cost $8700 a piece. I am unable to afford these life-altering devices.
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