Discussion on welcome
Robert Florio
was 18 years old and now 25. It would be great to get to know some of
you guys hear your stories and see what kind of issues you're having.
I contacted Kevin Kilgore to start this group and hopefully some of
you guys will join.
I was 18 and currently and still live in Glen Bernie Maryland. I am
an artist and game designer.
I can't tell you how many problems I've had with this since I first
got it.
The biggest problem is my fingers, I think the biggest issue as I was
misinformed by my doctor about the risks and afterward found out so
many things he could have told me to prevent that maybe I would not
have had the surgery. Like my finger tendons he thought it wouldn't
need to be tightened, but they were, I asked him after the surgery,
how many people with my hand conditioned to have the surgery ended up
having their fingers tightened and he told me about 80%. That's why I
was frustrated telling him he could have told me that I would have
been prepared before hand. Instead he told me he wasn't sure it until
he had ripped me open. So my fingers don't straighten either end I'm
missing an electrode to close my fingers were I opted for one on my
triceps. That wasn't great.
I have big black box and every other year it malfunctioned.
The coils are extremely expensive well now they are gone and no longer
supporting us which is really upsetting its humanely not right it
feels like.
Looks like Kevin go with the Ohio research in Cleveland is working on
an upgrade with some more electrodes, one implant in your chest or
something with no more wires probably hopefully.
So I'm at the point where my box turns on but shuts write off again so
I need to get the information stored back on to it but the rehab place
never gives me my own store information e-mail me keep it at their
rehab place in kurnan in Baltimore.
So how can we help each other at least support each other on our
frustrations hopefully we'll get us a little bit further. By the way
that Dr. eaglisider spelled something like that I don't have a good
relationship with because I'm so ticked off. So now I have a hard
time finding a surgeon to fix my fingers. I don't trust him that's
for sure.
This whole thing could become a big frustration rant each other about
their problems and if it feels good go ahead I welcome it because
there's not much else we can do there is no operating program to give
us replacements and you know, insurance doesn't come so there goes
that whole promise that, I'll always have support by the doctor
telling me that so I guess it's not true.
How can we help each other. That feels really good tell you guys.
Jay
a good resource for all of us. My name is Jay Liesener and I had my
surgery about 10 years ago. I've been extremely happy with the
results of my surgery and can't imagine going back to life without
it. The surgery helped me get through grad school and to teach for a
few years - I had to "retire" early because of health problems.
I use both the old computer and the new one, but am down to my last
set of wires for each. I'm hoping to keep them going until the work
that Kevin and his team is doing on inplanted controls and batteries
is available.
Has anyone tried getting wires fixed outside of NeuroControl? If so,
where did you go and what was the result?
I look forward to meeting others with the FreeHand and hearing your
stories and suggestions for keeping our equipment going.
On a side note - Robert, good to hear from you and it sounds like you
are doing well. I had visited you at the request of NeuroControl
before you had the surgery. Sorry to hear about all of the
dificulties you've had. Glad to read that you've stuck with your
art. You had showed me a couple of pieces you had done by mouthstick
and they were very impressive. Are you drawing by mouth, hand or both
now? Do you have a website with your work? I started teaching myself
to draw after I stopped teaching and work mostly in colored pencil and
with a tablet - I'll sometimes burn through 3 batteries in the small
computer a day. Anyway, I hope you are doing well.
Jay