Jean.Prophet@f33.n371.z1.fidonet.org (Jean Prophet) (02/01/91)
Index Number: 13288
[This is from the Spinal Injury Conference]
To all of those of you who have cervical/spinal injuries and are
still ambulatory (sort of):
Question: Do you feel times of numbness (greater than other
times) ?? Buddy is expierencing numbness (especially in the right
side) that will completely keep him from walking at all - in fact, he
fell the other night because his right leg simply would not hold him
up.
He had been sitting at the computer playing a card game - he'd
not sat there very long really (maybe 1/2 hour). When we attempted to
get up from the chair, his right leg went out from under him and he
fell to the floor - he said his leg was numb.
The other morning (after a nights sleep) he attempted to get out
of bed - he told me his entire body was numb. He TRIED to get up and
get dressed but could not raise his legs to put his pants on. I ended
up lifting his legs and putting his pants and socks on him. He layed
there for a while, then rolled over so he could sit up - after sitting
for a time, he was finally able to motivate by himself (sort of -
shaky, but he did do it by himself).
Question: Do you all have problems (on and off) with your bowl
movements ??? Loss of feelings so bad that 'problems' occur once in a
while (I don't know how else to put this delicately).
Twice this month, Buddy had an 'accident' ... he never felt it
happening - he feels the 'gas' but that's all - when the 'accident'
happens he knows it --- this sounds strange to me but I know he's
telling the truth -he doesn't understand it either.
The doctors told us his condition would get worse as he got
older ..... I know it's very frustrating to him.
I'm sorry this got so long and drawn out but we would appreciate
knowing how others felt about these 'happenings'.
Jean & Buddy
PS. Yes, we've made another appointment to the doctors - we just went
back in November so we aren't ignoring his problems, but Buddy is
becoming very 'disalousened' (sp) with doctors as they don't ever seem
to help much.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!371!33!Jean.Prophet
Internet: Jean.Prophet@f33.n371.z1.fidonet.orgFrank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (02/01/91)
Index Number: 13291 [This is from the Spinal Injury Conference] > To all of those of you who have cervical/spinal injuries and are still >ambulatory (sort of): I don't really fit this category but I thought that I would post something for you to think about. > The other morning (after a nights sleep) he attempted to get out of >bed - he told me his entire body was numb. He TRIED to get up and get >dressed but could not raise his legs to put his pants on. I ended up >lifting his legs and putting his pants and socks on him. He layed there for >a while, then rolled over so he could sit up - after sitting for a time, he >was finally able to motivate by himself (sort of - shaky, but he did do it >by himself). My wife has MS and when she first wakes up in the morning she has more difficulty in moving then later in the day. We know that Buddy tried to get dressed but when you get to a certain stage the nerves just don't function properly. I know from watching my wife over the last few years that she tries to raise her leg but it just won't move. Buddy might be getting to the point where he is experiencing the same type of problem. It might not be what you want to hear but you might want to have Buddy get a reassessment as to what his capabilities are right now and what they might be in the future. The way that I look at it is that it's better to be prepared for the worst and if it doesn't come then you're that much better off. > Question: Do you all have problems (on and off) with your bowl >movements ??? Loss of feelings so bad that 'problems' occur once in a while >(I don't know how else to put this delicately). > > Twice this month, Buddy had an 'accident' ... he never felt it >happening - he feels the 'gas' but that's all - when the 'accident' happens >he knows it --- this sounds strange to me but I know he's telling the truth >-he doesn't understand it either. It sounds like Buddy might want to put himself on a bowel program. That's where he has himself go to the bathroom at the same time every day. He might want to watch what he eats because some foods can cause more problems with regulating the bowels then others. It's a pain in the neck to have to do these things but it is better then the alternative. It also sounds like there might be a change in the pressure on part of his nerves which would be causing these things to happen. > > The doctors told us his condition would get worse as he got older >..... I know it's very frustrating to him. Most degenerative type of conditions are very frustrating to all who have to deal with them. I know that is the case with my wife's MS. It is hard to know that she is getting worse in front of our eyes. > I'm sorry this got so long and drawn out but we would appreciate >knowing how others felt about these 'happenings'. That's okay that is what this conference is all about. Trying to help each other with their problems can sometimes help us better cope with ours. > >PS. Yes, we've made another appointment to the doctors - we just went back >in November so we aren't ignoring his problems, but Buddy is becoming very >'disalousened' (sp) with doctors as they don't ever seem to help much. Unfortunately, that is generally the case with any degenerative type disease. Even though Buddy is disillusioned with the medical types it's still best to keep in contact just in case there is something new going on. Sorry that I couldn't give you more encouraging information but its the best I can do. The best of luck from both Jeanne and I to you and Buddy. -- Via Opus Msg Kit v1.11 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney Internet: Frank.Whitney@f1000.n261.z1.fidonet.org
Orville.Bullitt@f36.n135.z1.fidonet.org (Orville Bullitt) (02/01/91)
Index Number: 13294
[This is from the Spinal Injury Conference]
JP> To all of those of you who have cervical/spinal injuries
JP> and are still ambulatory (sort of):
JP> Question: Do you feel times of numbness (greater than
JP> other times) ?? Buddy is expierencing numbness (especially in
JP> the right side) that will completely keep him from walking at
JP> all - in fact, he fell the other night because his right leg
JP> simply would not hold him up.
Jean,
Friday afternoon/evening we went to see the movie "Aawakenings." It is just
over 2 hours long. About one-and-a-half hours through the movie, my left leg felt like it was experiencing "Icy-Hot" - for lack of a better term.
JP> He had been sitting at the computer playing a card game -
JP> he'd not sat there very long really (maybe 1/2 hour). When we
JP> attempted to get up from the chair, his right leg went out
JP> from under him and he fell to the floor - he said his leg was
JP> numb.
What I sis was to make sure I was flexing the muscles in my leg to get teh
circulation and feeling back to normal.
JP> The other morning (after a nights sleep) he attempted to
JP> get out of bed - he told me his entire body was numb. He
JP> TRIED to get up and get dressed but could not raise his legs
JP> to put his pants on. I ended up lifting his legs and putting
JP> his pants and socks on him. He layed there for a while, then
JP> rolled over so he could sit up - after sitting for a time, he
JP> was finally able to motivate by himself (sort of - shaky, but
JP> he did do it by himself).
JP> Question: Do you all have problems (on and off) with
JP> your bowl movements ??? Loss of feelings so bad that
JP> 'problems' occur once in a while (I don't know how else to put
JP> this delicately).
JP> Twice this month, Buddy had an 'accident' ... he never
JP> felt it happening - he feels the 'gas' but that's all - when
JP> the 'accident' happens he knows it --- this sounds strange to
JP> me but I know he's telling the truth -he doesn't understand it
JP> either.
JP> The doctors told us his condition would get worse as he
JP> got older ..... I know it's very frustrating to him.
JP> I'm sorry this got so long and drawn out but we would
JP> appreciate knowing how others felt about these 'happenings'.
It isn't long at all. Sorry that I have no comment on this problem.
JP> Yes, we've made another appointment to the doctors - we
JP> just went back in November so we aren't ignoring his problems,
JP> but Buddy is becoming very 'disalousened' (sp) with doctors as
JP> they don't ever seem to help much.
I know his feeling! My NeuroSurgeon said that there is abesolutely NOTHING he
can do about my L5-S1 pinched nerve until I experience loss of motor control!
As soon as the '91 insurance cards arrive, I'm going to see my GP and ask for
help dealing with the pain. If I don't get it from him, I'm going to be changing doctors FER SURE!
Keepin' The Faith,
Orville
... Praying for Peace in the Gulf..............
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!135!36!Orville.Bullitt
Internet: Orville.Bullitt@f36.n135.z1.fidonet.orgJoe.Chamberlain@f140.n150.z1.fidonet.org (Joe Chamberlain) (02/05/91)
Index Number: 13510 [This is from the Spinal Injury Conference] > The other morning (after a nights sleep) he attempted to get out of >bed - he told me his entire body was numb. He TRIED to get up and get >dressed but could not raise his legs to put his pants on. I ended up >lifting his legs and putting his pants and socks on him. He layed there I know you have always expected things to slowly get worse but this sounds like you are describing a sudden onset and maybe you should get an further input from your doctor. There are a wide range of things that could cause Buddy's problem from further nerve damage to drug reaction. >> Twice this month, Buddy had an 'accident' ... he never felt it >>happening - he feels the 'gas' but that's all - when the 'accident' >>happens he knows it --- this sounds strange to me but I...... A lose spincture muscle is normal for a quad, but I think your saying this is a change in sensation and that before he could tell when he needed to 'go' and now he doesn't. Again, this can have several causes from nerve involvement to drug reaction. >>PS. Yes, we've made another appointment to the doctors - we just went You and Buddy know the situation best. The doctor can give advice and check to see if there are unseen physical changes, but all three of you need to pool your knowledge for an answer. Some things to consider is recent falls, changes in diet, and medicines being used. With the bowel accidents check back over the past three days for foods that may have caused the problem. I wish I could be more of a help. I missed the original post but hope I covered everything. -=joe=- -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Joe.Chamberlain Internet: Joe.Chamberlain@f140.n150.z1.fidonet.org
Douglas.Zachary@p0.f10.n137.z1.fidonet.org (Douglas Zachary) (02/05/91)
Index Number: 13511
[This is from the Spinal Injury Conference]
I am not ambulatory but am a "lucky quad", meaning that I have some use
of my hands and feeling on the thumb half. Some days I can feel and use
my hands better. Usually, they are worse when there is something that
would be painful in an unfeeling area, i.e hangnail, pressure sore,
artritis flair up, etc. Buddy should get checked for pressure on the
cord though, specially if it is high. The way the "accidents" feel to
Buddy is exactly the same with me. Frank gave good advice on the bowel
training, all of us quads have to have regular routines to lessen the
accidents but they happen from time to time. If I were Buddy, I would
start using a walker, falling like that sure doesn't help anything and
can rob him of his confidence. I think he should go back to rehab for a
few weeks. I feel that all spinal cord injured should go back to rehab
2 years post accident. You need help too Jean, your emotional stress
and trying to take Buddy,s pain and frustration on yourself will not do
either of you any good. You are a very sensitive and caring person and
I pray for strength for both of you. If you ever feel the need you can
call me at 813-377-9026. Maybe I can get down there once I get some
repairs done on my van.
Take care 'cause I care.
Zack
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!137!10.0!Douglas.Zachary
Internet: Douglas.Zachary@p0.f10.n137.z1.fidonet.orgEd.Dobie@f175.n120.z1.fidonet.org (Ed Dobie) (02/05/91)
Index Number: 13513
[This is from the Spinal Injury Conference]
Jean, we're not ambulatory at all; but, possibly more ROM will help. My
daughter has been having a very high increase of spasms, everyones answer to
it was "increase the bacofin." Jill told me (she's nine) that she thought
that it was because she hasn't been getting the ranging that she used too.
Just a thought, since I've noted Buddy's flexible use of Baclofin, it seems
that his very incomplete injury would lean to a multiple/flexible attack on
this problem.
Ed
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!120!175!Ed.Dobie
Internet: Ed.Dobie@f175.n120.z1.fidonet.org