Re: residual effects

Johnnie DeGrand (jdegrand(AT)up.net)
Fri, 13 Mar 1998 13:52:17 -0500

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autonomic dysreflexia, which jake had had two episodes, is where because of
some outside source his blood pressure shot up real high, his face became
beet red, and a feeling of faintness came over him. The outside source has
to be removed. Things Such as impacted bowels, too tight clothing, a broken
bone or cut or even an in-grown toenail can cause this. In his case once
it was impacted bowels and once it was being over-zealous in a volley-ball
game, his clothing got twisted and was cutting him off in the middle
without his realizing it, because of course he can't feel. It can cause a
stroke.

----------
> From: JHarper33 <JHarper33(AT)aol.com>
> To: jdegrand(AT)up.net tmic-list(AT)eskimo.com
> Subject: Re: residual effects
> Date: Friday, March 13, 1998 11:01 AM
>
> In a message dated 98-03-13 08:03:12 EST, jdegrand(AT)up.net writes:
>
> > When we left the hospital we knew that Jake was paralyzed and knew that
he
> > needed alot of PT to build his upper body, we knew to watch for skin
breaks
> > and autonomic dysreflexia....We didn't know alot of the other stuff
that
> > comes along with TM. Now from reading all your lists we know so much
more.
> > Also we find that other people think that he should just beable to
learn
> > to live in his wheelchair and from his chest up he is fine. They
don't
> > understand the fatigue, etc. Is this list of symptoms complete or are
there
> > more.
> > Paralysis or weakness of limbs(including numbness or tingling)
> > Chronic Fatigue
> > Chronic Pain
> > Girdle feeling around abdomen
> > Headaches
> > Dizziness
> > Loss of balance
> > Bowel and Bladder control problems
> > How does everyone get work, school, etc to understand that an asprin
> > doesn't take these things away?
> >
>
> A good list. I would add, for some of us, anyway, muscle spasms and
> "'fasciculations' which is a fancy word for involuntary contraction or
> twitching of muscle fibers under the skin." I took the latter as a quote
from
> a previous note on the list.
>
> What is autonomic dysreflexia?
>
> I think we can help to educate others, not only for ourselves, but for
others
> with illnesses or disabilities, by trying to explain some of these things
when
> we have the opportunity. It's hard when people ask how you're doing...you
> don't know if they really want to hear it all. :-) But certainly at times
when
> people expect you to do things you just can't, you can explain why.
Sometimes
> I worry about being thought a hypochondriac, since for the most part I
"look"
> normal, so I don't often elaborate on how I feel. But sometimes people
need to
> know.
>
> Barbara
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autonomic dysreflexia, which jake = had had two episodes, is where because of some outside source his blood = pressure shot up real high, his face became beet red, and a feeling of = faintness came over him.  The outside source has to be removed. = Things Such as impacted bowels, too tight clothing, a broken bone or cut = or even an in-grown toenail can cause this.  In his case once it = was impacted bowels and once it was being over-zealous in a volley-ball = game, his clothing got twisted and was cutting him off in the middle = without his realizing it, because of course he can't feel.  It can = cause a stroke.

----------
> From: JHarper33 <JHarper33(AT)aol.com>
> To: jdegrand(AT)up.net; tmic-list(AT)eskimo.com
> Subject: Re: residual effects
> Date: = Friday, March 13, 1998 11:01 AM
>
> In a message dated = 98-03-13 08:03:12 EST, jdegrand(AT)up.net = writes:
>
> > When we left the hospital we knew that = Jake was paralyzed and knew that he
> >  needed alot of PT = to build his upper body, we knew to watch for skin breaks
> > =  and autonomic dysreflexia....We didn't know alot of the other = stuff that
> >  comes along with TM.  Now from = reading all your lists we know so much more.
> > =   Also we find that other people think that he should just = beable to learn
> >  to live in his wheelchair and from = his chest up he is fine.  They don't
> >  understand = the fatigue, etc. Is this list of symptoms complete or are there
> = >  more.
> >  Paralysis or weakness of = limbs(including numbness or tingling)
> >  Chronic = Fatigue
> >  Chronic Pain
> >  Girdle = feeling around abdomen
> >  Headaches
> > =  Dizziness
> >  Loss of balance
> > =  Bowel and Bladder control problems
> >  How does = everyone get work, school, etc to understand that an asprin
> > =  doesn't take these things away?
> >  
> =
> A good list. I would add, for some of us, anyway, muscle spasms = and
> "'fasciculations' which is a fancy word for involuntary = contraction or
> twitching of muscle fibers under the skin." = I took the latter as a quote from
> a previous note on the = list.
>
> What is autonomic dysreflexia?
>
> I = think we can help to educate others, not only for ourselves, but for = others
> with illnesses or disabilities, by trying to explain some = of these things when
> we have the opportunity. It's hard when = people ask how you're doing...you
> don't know if they really want = to hear it all. :-) But certainly at times when
> people expect = you to do things you just can't, you can explain why. Sometimes
> = I worry about being thought a hypochondriac, since for the most part I = "look"
> normal, so I don't often elaborate on how I = feel. But sometimes people need to
> know.
>
> = Barbara

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