Neuromuscular Disabled Couple Seeks Grant Money For Handicap Vehicle
(Provo, UT, USA)
I am 54 years old and married. Both of us are disabled due to very severe diseases.
We both worked hard labor jobs for 30 consecutive years, and were never on unemployment.
I was never in the Armed Forces, but my wife (April) was in the Army National Guard back in the late 1970s.
In the later months of 2003, while working a full-time (12 hours a day) job I was testing microchips for Micron Technology.
I was having a very hard time standing for the full shift and getting a lot of weakness in my arms too.
I was also working on my A.A.S. in Electronics and Computer Technologies, at UVSC (Utah Valley State College) now known as UVU (Utah Valley University).
I thought I was only overdoing it. My doctor took a few tests and also a muscle biopsy showing I had a neuromuscular disease.
The Neurologist believed it was ALS (Lou Gehrig Disease) and gave me the bad news.
I asked him when I could go back to work, and he replied never again. After several weeks, I learned that the disease was not ALS, but rather a rare and undetermined disease at this time.
It's possibly a combination of CMT, HSP and PLS. I only know one day I will not be able to use my waist down.
In 2005, I needed to get orthotic braces. In 2006 I needed to get a power chair.
Most recently I had a major colon surgery, and I now only have 10 inches of colon saved.
We have so many medical expenses and we both take a lot of medications. Our SSDI is very low. Neither of us has ever made more than $11 per hour. My first full-time job was in the 1970s earning $2.13 an hour so you can figure my disability pay.
Our church and neighbors have helped with food sometimes. Our Bishop is helping me at this time for my nutrients drink.
It took us both over 3 years to get approved for SSDI. We don't even attempt to find work now, in fear of losing what little benefits we get.
I am looking for a grant or some kind of funds to purchase the much needed handicap vehicle with hand controls, lifts and locking system.
We tried to finance it on our own. We just can't do it!!! While we were waiting on SSDI we went through all our savings, cashed in bonds and IRAs trying to survive the crises.