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Date Posted: 13:30:12 03/03/02 Sun
Author: gb
Subject: Hello up there, Tall one. LOL.
In reply to: Tall Texan's wife 's message, "Re: Glad you found us. Just how tall" on 04:41:55 03/03/02 Sun

Yes. The idea is to be independent. Many of us do this with support services, equipment, devices and assistive technology. An example is tv remote control and your automatic transmission. You may have seen the Lift Chairs that help you get up.

We are not concerned about who's worse off. Our goal is to work together to get that support and those devices that will enable us to remain independent. Are there any services available in you area? Most areas are lacking. Check phone book for Centers for Independent Living or other disability agencies.

Our CIL here in Tennessee works with people with all diasbilities and we work with other agencies too. Our greatest need is attendant care in the home. Most of our staff are people with disabilities. People come to our office needing wheelchair ramps, transportation, a job, everything. You name it.

It's funny you mentioning automatic transmission - I have to use automatics too. I once tried to drive a Fiat sports car with manual. I ran off the street, over a curb and through someone's yard before getting it stopped. WOW! Let's do that again! I have a a spinal cord injury from a broken neck. I use a chair sometime but most of the time I run around on a power scooter - Scooter Cowboy, they call me. Yeah, I can rope a steer if the steer doesn't run over 5 mph. haha.

Talk to ya later,
gb


>My Texan is 6'7" tall. Yes, thanks to the National
>Marfan's Foundation, we were able to dig up enough
>material for that Social Security law judge.
>
>Until the mid-1980's, no one knew much about Marfan's,
>other than it caused a heart defect that could kill
>you, was genetic in origin, and if the heart defect
>didn't kill you, would eventually cripple you.
>
>My hubby was diagnosed nearly 40 years ago, and they
>didn't even tell him that much; only warned him about
>activities he "shouldn't do". Back then, they didn't
>explain much. The philosphy was "why scare the
>patient when there wasn't a thing he could do about
>it?"
>
>Fortunately, the heart defect remained subordinate for
>him, and he lived the same life as his other buddies
>in East Texas, Cowboying, Building, Beer Drinking,
>etc. He had a lot of "joint pain", but just figured it
>was from all the "hard living" he had done. In the
>early 90's, his back got so bad he got medical
>treatment, which included two herniated discs. He had
>surgery, and felt better for about six months. Then
>the REAL pain began. Doctors, not knowing about the
>Marfan's diagnosis (he didn't know to tell them)
>informed him that Osteoarthritis was tearing up his
>frame, and it was just a "matter of time" before he
>would no longer be able to work. He took his NSAID's,
>and just kept on trying, getting worse by the year.
>
>When I got a computer, and we were talking about
>family health history, I stumbled on NMF. After we
>read all their info, we told the doctor, who
>instigated a whole battery of tests. THAT's when we
>knew what was wrong with him, and his whole life
>started to "make sense".
>
>I'm glad I found you folks, because now he is fighting
>valiantly to stay independent. There are days he can
>barely get out of bed, regardless of medications.
>Getting the RIGHT medications is always a major
>battle; I'm sure many of you know how hard it is to
>get "proper pain management". Driving has become a
>problem; he must now have an automatic tranny and
>power steering, and even then, he can't sit longer
>than 45 minutes. Maintaining a "normal schedule" is
>also tough; it's hard to stay awake when you're
>supposed to if pain keeps you from sleeping when
>you're supposed to.
>
>Getting medical care within his "driving radius" is
>also hard. Finding "comfortable" furniture is
>difficult. Managing to get up and make a meal and
>take meds is sometimes very difficult, and I am at
>work in the daytime.
>
>I'm sure many of you are much worse off, but at least
>I have found a place where you understand the
>difficulties of staying independent when your body
>doesn't want you to. I'll be reading with interest
>some of the things you folks have discovered.
>
>BTW, his ONE advantage is the "jury duty" thing. He
>has a "permanent exemption", as the doctors wrote him
>a letter stating he could not sit in one place longer
>than 30 minutes. We enclosed it with his last
>summons, and they gave him the exemption. Good luck
>to you folks, too.
>
>>How are you and the tall Texan doing? It can be
>>difficlt getting the Social Security going. It seems
>>they turn everybody dowm. I'm glad he got it. It's his
>>money because he paid for the insurance when he was
>>working. I found a link to rel=nofollow target=_blank >>href="http://www.marfan.org/"> National Marfan
>>Foundation and wondered if you had any dealings
>>with them? Come back soon and tell us more about
>>Marfan's syndrom

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