Curious to know if any of you are suffering from a syrnix? I've had on
for over 2 years and very afraid to do anything about it. The reason
for this is that it is located in the C2 to C5 area and I'm deathly
afraid of ending up on a vent or with a trach. Other then increased
numbness and some nueropathic pain, I've been able to control it with
neurontin and darvacet.
Since I'm only 4'6 and probably weigh 150 and my wife who is only 4
foot tall and only weighs about 112 and she is really concerned that if
I get much worse she will not be able to handle me. The major problems
that we have is transfers into the bed, shower and commode. I do have
a ceiling lift which makes it a little easier, however rolling me from
on side to the other can wear my wife out as well hurt her back. I'm
able to stand up with the aid of a platform walker to get into my
commode but i cant get out or into my wheelchair on my own. The reason
for this is because during my last surgery, I had a mini stroke that
affected my left side and the syrnix also affects it. I've been trying
to find a way that i could get some p/t help to assist my weary wife
who works on an average of 35 hrs a week. With the income I make from
SSDI and the monies she makes we do not qualify for the Home Community
Wavier program or the IHSS program. So you see if I get much worse I
might have to go to a assisted living facility or nursing home which
would drive me nuts since I'm only 50.
It's really sad that when people become disabled at such a young age that
instead of giving assistance to all that need it they want you to become
disatute prior to giving you help. Knowing how much work my wife does for me
in a days time and then she goes and puts in another 8 hours at a local retail
store, I don't know how she keeps from going nuts or maybe she does and just
hides itt well. If I lost her I don't know how I'd carry on.
If any of you are going through living life with a Syrnix, please respond so
that we can compare notes.
David B.
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