Government Grant Needed To Avoid Being Disabled By Multiple Sclerosis
by Robert Sharp
(Warner Robins, GA, USA)
I graduated from Purdue University in 1980. I went to work for Douglas Aircraft Company in California designing airplanes.
I was 25 at the time and really excited to do what I always wanted to do.
I transferred to McDonnell Douglas Helicopter Company and worked in Mesa AZ where I met my wife.
I transferred back to California while we planned our wedding. After our marriage we moved to St. Louis and had our first child. Soon I needed to return to California where we had two more kids.
After that I took a position in Huntsville Alabama working on rockets. That lasted four years.
Wanting to get back into aircraft design I transferred to Wichita, Kansas just in time for the 9/11 debacle. I was laid off but managed to transfer to Altus AFB repairing C-17s.
After four years I moved closer to home and worked on helicopters again but wanted to return to aircraft. I finally did get back to my roots and now work for the Air Force fixing aircraft.
I have three kids in high school and one in college.
I'd like to think that's odd. In 1989 I had optic neuritis but didn't see a doctor and the effects went away in about seven days.
In 1990 a friend at work and I participated in the MS bike ride "The Best Dam Bike Get Together" in AZ. I went the following year also but died going up the last three miles of up hill to the Dam.
Then I moved to Long Beach CA and in 1993 while working on the F-18E/F at Northrop my toes were tingling. By Friday I could not feel anything below my waist.
After about five months, the feelings returned to normal except the balls of my feet felt like they were swollen and hurt to walk on.
Naturally I still did what I loved doing playing basketball but now I stumbled and my legs felt like lead weight strapped to them. They got heavier and heavier the more I played.
Soon I realized that playing eight or nine games was out. I would be lucky if I could stand after four games. Finally in 1997 I got optic neuritis again and went to a doctor this time.
He sent me to a neurologist and the discovered I had MS. Thank God I thought; now I know.
But I was wrong, now I realize what a curse. I am screwed. No more basketball, I'm fortunate if I can even play one game and worst of all I now suck at it.
I can't work up a sweat in anything I do because I can't run and do it. I hit a wall and I am spent.
I am going on my 11th MS bike ride this year. I rode last year and made an all time low of 67 miles.
I found out before leaving Oklahoma that my riding made volunteers and other riders want to participate; I was so pathetic I guess. I figured if that's what it takes to get MS noticed then so be it.
I have a walking stick attached to my bike so when I get off my bike I have help holding myself up at the rest stops.
One thing is good about bike riding when one foot goes around the other follows. That helps since one foot goes dead before the other. I just never know which one is first.
I just returned from my 11th MS bike ride and totaled 43 miles. I had to stop at the top of every hill and rest. My son helped me off my bike at every stop.
I am working diligently at not being disabled but without a good way to exercise I feel disability is not far away. I had a bad day last week and needed to go home from work.
Upon arriving at home I could not stand or walk. I could not even move in my bed. I have never been so frustrated.
I signed up for my 12th MS Bike ride but if I don't get help I won't be able to do it.
I met riders last week that pushed themselves because I was riding with MS and they could see it destroying me by the minute as I rode.
I want to go on and not be dependent and yet without help that may not be possible.
We are struggling to get everyone what is needed. My wife can't work since she started having seizures.
She was a teacher but stopped to have a family and now that she's ready to work she can't because of the seizures.
She can't go on disability since she hasn't been employed since 1996.
With our oldest in college we have been taking out loans and repaying them just in time for the next semester.
Next year both girls are going to college so my 401K is doomed. My wife recently was pulling a pot roast out of the oven while I was TDY and had a seizure and fell in it.
So far our medical bills after insurance has been over $12,000 for her 3rd degree burns.
I am currently employed by the Air Force. I am not interested in being disabled and am working hard to keep healthy.
Six month ago we had an emergency and some of us needed to come to work at 5:00 AM and look at every airplane out here. By 9:00 I was tired from all the walking and standing.
I somehow managed to trip and fell into the hand railing on the stairs in one of the hangers. Not only was it embarrassing it showed management that I probably shouldn't be out in the hangers. So far nothing more has been said.
I would like a grant to help me stay healthy by providing me the ability to work longer and stay off of disability insurance and social security.
The FDA's involvement in health care devices has made it impossible for me to acquire anything if I don't need it at home.
I have a chair at home to sit in if I am tired but in the middle of Walmart I am stuck sitting on a shelf until I feel like continuing.
I would like to have something that can help me exercise to stay healthy and help the cause of Multiple Sclerosis.