Greg,
I am a C2-3 quadriplegic that is not ventilator depended. I have managed
to live at home alone for the last year and a half, but this was something I
had to develop over a time. I also have an extensive support system, which
many other people are not able to get. There is no way I would have been
able to accomplish this earlier due to complications with catheters kinking,
needing additional water, and general anxiety. I have had frequent problems
with my catheter plugging and thus have had to call for help in the middle
of the night. What I typically do is assess each problem which I have and
then determine what course of action I will take to rectify this difficulty.
If it is something that I need to have done, but is not an absolute
emergency then I'll call a member of my family, depending on which one is
available. If it is an emergency I feel can be rectified easily and one of
my neighbors can handle it, I will call in a friend and have them handle the
situation for m! e. Obviously all emergencies which cannot be handle quickly
I need to call 911. The closest family members I have are approximately 20
minutes away, but my well-trained family members are about 20 to 25 minutes
away. Establishing a network of this type requires getting out and making
great friendships in addition to maintaining these friendships. Not all
people are able to do this due to an array of different reasons, i.e. they
live in a rural area, their neighbors are not very friendly, ect.
I got the idea to do this by reading an article about a quadriplegic that
is roughly the same functional level is me -- C4, but still does not have
any movement of the arms or legs -- who was living by himself in St.
Petersburg. I wrote to him and ask him questions, but didn't receive all the
answers I thought I needed. I did discover how to take medication, but a
requires access to an environmental control unit which can control your bed.
I gradually discovered how to handle most of the problems I run into and
vowed to try it for a little while. I figured if I was only able to handle
it most of the time, I could still get someone to move in with me and I
might be able to lessen their load and thereby find a more suitable live-in
companion. There are situations which can be absolutely petrifying, but I
have put some of these fears behind me. I did have one situation which arose
one time when my brother happened to be in the house. Lightning had struck
close by and had loc! ked up telephone. We only discovered this when we had
to call 911 due to excessive bleeding from the rectum. In all honesty I
would have died if my brother had not been present. Will the situation
recur, I sincerely hope not. If I do not feel well, I require a member of my
family to stay over with me to make sure nothing goes wrong. I am hopeful
that I will be able to maintain my health so that I am not forced to have my
family stay with me frequently. I am trying to find a voice-activated
cellphone which will give me the ability to call for help if I lose control
of my sip-n-puff or the telephone locks up. I have not been able to get
complete control of a cellphone yet and still have that problem, but I am
hopeful I will be of two rectify the situation in the near future.
I hope this answers a few questions, but remember nobody situation is
exactly the same. It took me over 8 1/2 years to develop the ability to do
this and there are many others on this list and around the world that
probably would not if given the choice. I am still hopeful my ex-wife will
decide to remain in the United States permanently thereby giving me a
live-in companion. FYI, we only divorced because my wife determined and
wanted to remain in Germany following my accident. It is a long story, but
we are still amicable and in fact she usually visits at least once a year,
if not more.
Billy
Please excuse any errors. I am using voice-activated software and it
occasionally makes mistakes which I do not always
catch.
I recall reading that some of you guys are
home alone at night while in bed. After last night, I know I could never
feel safe dioing that.
I started an antibotic and last night and it
made me sick. Plus all those nights I wakeup sweating cause my cath is
twisted shut or something.
I would go into a mini panic attack if these
happened and no one was here to help.
Greg
