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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.

Disability Issues

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.

Financial Hardship

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.

Earning Efforts

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.

Specific Needs

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.

Comments for Government Grant Needed To Avoid Being Disabled By Multiple Sclerosis

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Oct 11, 2012
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Training
by: Bob

I am starting training early for next September's M.S. Bike Ride. To Donate go to: http://main.nationalmssociety.org/site/TR?fr_id=4540&pg=pfind

Type 'Robert Sharp' and Georgia

That's all there is to it. I can't start early enough, although I was a bit afraid to get on my bike. After riding though, I was terrified of getting off. I didn't have a spotter.

Oct 01, 2012
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Recumbent Names
by: Bob

Here are a few sites/models:

Catrike

Terratrike

Tadpole

Greenspeed

Oct 01, 2012
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Recumbents
by: Bob

There are a lot out there. Reliability I am not too sure about. I usually go with companies that have good sales. They usually take care of their customers.

Oct 01, 2012
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Recumbent
by: Bob

Catrike has five kinds of bike that are very nice. The 700 is my favorite. ICE Trikes is another brand, although I don't know much about it. HP Velotechnik is another one. I haven't heard too much about them either. Sidewinder is a brand I haven't seen either. I do need a head rest or my neck will start hurting in a not so good way. Some recumbents have a head rest making it easy to adjust when your sitting. There are a lot of brands out there. Tadpole Recumbent Trikes are pretty nice also but no head rest.

http://www.catrike.com/

Bob

Sep 29, 2012
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Recumbent Names
by: Don from Accessible.org

Hi Bob,

I like Ken's idea. Could you provide a list of names of recumbent manufacturers here (with websites)?

You just never know if someone reading this page can make a contact for you.

Cheers!
Don from Accessible.org


Sep 28, 2012
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Support and Sponsorship
by: Ken

Hi Bob,

Please talk to the cycle manufacturer/distributor about sponsoring you. You are a great athlete and can get worldwide support for your work. You deserve it. Work on it. They will love it too.

Ken

Sep 28, 2012
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Recumbent Solution
by: Bob Sharp

My goal is to stay off of disability by staying fit. I love basketball and bike riding but basketball seems out of the question since I can't exercise enough to gain endurance to play. I found that I still have strength in my legs and riding is possible but getting off my bike causes me a lot of concern. I saw people riding recumbent trikes in my last MS bike ride and the nice thing about them is I don't have to get off the bike, unlike a 2-wheeler. It would help me ride in more MS bike rides. It would help me stay off disability and stay healthier. The thing is a recumbent costs from $1,700 to $4,000. With three in college there is no way that a recumbent is a possible idea. So finally I am asking for help. I cannot see that my kids can be successful if I go on disability and I will be disabled within 4-5 years as long as I don’t fall down in the hangar again. I am at wit's end.

Sep 21, 2012
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Keep it up! Robert!
by: Ken

Hello Robert,

I must say I am very proud of you for your tireless effort to keep on your feet. After what you have gone through, many would have given up and ended up in the hospital and on disability. Good for you! It seems that you are on the right track, keeping active and learning to deal with the setbacks as they come. That is fantastic, you could lead a group for MS. Sorry to hear about your wife. That is terrible. My wife has had seizures as well. Thank God she did not fall on something that hurt her. My wife now takes dilantin and has not had a seizure since. I found a site that may interest you:

http://www.msfocus.org/

It has quite a bit of information. I think you will find what you want on this site. They have many sections that I think you are looking for, including Health and Wellness. Keep up the good work Robert. I hope this helps.

Best wishes and God Bless,
Ken

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