[Blind-rollers] hello.

[Carrie Ann Lucas]

Hello all,

Right now, about half the time, and when it is light, I have enough vision
to navigate without my cane in familiar territory.  I use my cane in
unfamiliar territory, and in the dark.  At times my vision is little more
than light and movement perception, and I have a much harder time in
unfamiliar territory during those times.  The rest of the time I can see
some in good light.   

I use a 21st Century Scientific Bounder chair, which is rear wheel drive and
built like a tank.  I used to have my chair set VERY fast, 11 mph or so.
Now I run at 6 - 6.5 mph top speed.  I use a telescoping cane with a metal
tip.  I stabbed myself in the stomach too many times with a folding cane.
If the cane catches and I can't stop in time, this one just telescopes onto
itself, rather than stabbing me or breaking.  My problem is that a lot of
times I then drop my cane, and I can't always find it.

As for how I navigate, I just use my cane.  I do rely a great deal on my
residual vision, especially for crossing streets, except in those areas
where I am lucky enough to have vibrotactle pedestrian signals.  

I have a progressive neuromuscular disease, and don't have the arm function
to use a manual chair.  My vision, hearing and mobility issues are all
unrelated, I just hit some weird genetic jackpot, but all my kids were
adopted, so their disabilities are also unrelated (the oldest has a genetic
syndrome, one was a micro-preemie and now has cerebral palsy, and the
other's disabilities are the result of abuse and neglect).  

Carrie

-----Original Message-----
Hi Carrie --
Wow, you do have the load of challenges!  I am not deaf but do need hearing
aids as my hearing is 50% without them, but my vision is down to light and
color perception nowadays.  I ask you the same question I asked Dan -- how
on earth do you use a power chair to navigate, especially in unfamiliar
territory? Or do you avoid unfamiliar terrain without a travel companion?
Great that you're working.  Sorry to hear your children have to battle some
of the same challenges.  That is one reason I never had kids -- not that I
judge anyone who does have them, but I was afraid of passing along those
annoying little genes that have caused me so much trouble...
But I'm a very proud and doting aunt...
I should probably introduce myself -- I am a computer programmer -- degrees
in math and computer science -- who worked 12 years after grad school and
then had to go on disability due to a "perfect storm" of setbacks.
I have been home now for about 10 years but keeping busy with various things
and trying to find useful ways of spending my time.
My employer's disability insurance made it possible to get by without
working for a while -- I live with Mom. We are a team.  She takes care of
the house, and when I was working I paid all the bills, but now she and I
share the finances.  She is 83. I will be 50 this year.
I keep my ear to the job opportunities out there, but have been spending my
time in volunteer activities and projects for the time being.
Well, hope to hear more from you as it sounds like you'd have a lot of
interesting things to share.
Take care.
--le