MS Resources for patient/caretaker
- From: garysmailbox@xxxxxxxxxx
- Date: 29 May 2007 07:23:06 -0700
I'm new here so bear with me if you could. About 10 years ago I met a
woman with MS, and she had only been recently diagnosed. At first she
was still able to work but her condition was deteriorating fast. We
started seeing each other and have since wanted to get married, but
she could lose some of her benefits if we do (we think, anyway) if we
were to marry. She had lived in a small apartment with stairs and was
having great difficulty making the stairs daily, so I moved her in
with me after a while. At the time, I had my own house (a ranch with
no stairs!) and was living alone until then. It was so much easier for
us to pay bills that way, sharing one place instead of two seperate
After a while, she became so sick that she could not work anymore. She
had trouble walking at all, and had many other symptoms. Her doctor
had her on Avonex, which didn't seem to help a whole lot, if not
making it worse. I have a bad back myself, and had to quit my job
because of that and that Janine needed help most all of the time.
Later she was switched to Copaxone, and immediately started to get
better and stabilize a bit. Since then there have been very few
relapses, but still has trouble getting around and needs a wheelchair
or powered chair to go any distance or for a long period of time.
Eventually, she applied for and received disability and Medicaid, but
with me not able to work anymore, we lost the house. Fortunately, one
of Janine's good friends had just purchased an old mobile home which
was not in very good shape (and still isn't), and is getting worse all
of the time. Rain water has destroyed parts of the floor, walls and
other things. The owner used to help us out by having things fixed,
but even she is financially unstable and can't fix things for us
anymore. Not only that, but the trailer park we are in is mostly
minorities who do pretty much what they want and whenever they want,
and management has given up even trying to get the place into shape.
We literally fear for our lives sometimes, as there are drug dealers
and users driving in and out all day, often with those damned booming
stereos cranked to 250 decibels.
Anyway, Janine's neurologist declared that she needs around the clock
care, as she is prone to falling and could have a relapse at any time.
Because of that, we are at least able to get Food Stamps to help out,
but both of us (and 3 cats) are living off of her disability money and
those Food Stamps. Once in a while I can find a little work online (I
can program computers and quite a few other things, that helps a
little), but the competition for the work is pretty fierce, making it
difficult to find anything that I can do and still be here for her.
I wanted to give a little background on the situation, as we are
pretty much "stuck" here and need to get out before one or both of us
is hurt or killed, not to mention how much longer this trailer will be
liveable. To make matters worse we have no vehicle, and there is no
public transportation here, which makes it difficult and expensive for
her to make doctor's appointments, get to the store etc.
Long story short, I've searched around to try and find some additional
help, but can't seem to find anything, If anyone reading this knows of
any kind of programs, government or other, that can provide us
additional help, please let me know. Someone once told her that
caretakers can get assistance somehow, but I've yet to figure out how.
Surely there has to be something out there, maybe somebody who would
donate cars or places to live. We're scared to death living here and
are desperate to get out at the very least.
PLEASE let me know if you know of ANY kind of extra help we can get, I
worry about this more than anything.
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