[NFB-DB] Welcome to the List

Fri Jun 9 20:06:15 UTC 2023

Hi Ineko & Sara, Stuart here.

Big welcome to you both to this list! And Gary, no worries with
relating: we all have differences as to the reason for being DeafBlind
and whether we lost sight and hearing spontaneously or slowly or at
different times or ever had one of the other at all. What's important
is we can all come together and support each other and figure out how
to communicate with whatever capabilities we have to do so.

I had typical sight/hearing until 23, when I had some vision and
hearing problems after a car accident where I was T-boned by a
red-light-runner on my way to work in the morning, then I started
having recurrent infections and several bad ones leading up to
meningitis with worse tinnitus and vision problems. They eventually
stabilized except the tinnitus, but recurrent infections continued
until I got shingles in the cranial nerves and what's called
Ramsey-Hunt Syndrome Type II with herpes zoster oticus, herpes zoster
ophthalmicus, herpes zoster paresis and viral encephalitis that led to
long-term postherpetic geniculate ganglionitis, postherpetic
trigeminal neuralgia, postherpetic polyneuropathy and postherpetic
neuralgia.

Anyway, these days I still have a wide variety of recurrent infections
and I'm DeafBlind. I didn't know that the less than 40% word
recognition was considered Deaf as no one told me at first, but I
learned how to use captioning and speech reading to compensate
starting in 2014, and my first and second service dogs were both
trained for hearing and mobility assistance. My current service dog's
name is Obie (short for Oberon) and he's all white and fluffy with a
super-soft curly tail that wraps around and pets you also while you
pet his back. He is very expressive with soft, white and pointy ears
that he uses to help me figure out what directions sounds are coming
from tactilely, too!

I also didn't know that my sight being only 20/200 in the better eye
and seeing blurred shapes due to nystagmus/oscillopsia/vertigo
post-shingles was considered Blind due to being uncorrectable; but,
once I finally was told that by Missouri Rehabilitation Services for
the Blind (MO RSB), it helped me move on from just waiting out my
periods of more severe vision loss and start living my life all the
time with my service dog and by learning Braille which has helped me
survive better now in my current condition.

My case manager with MO RSB always says, "The Blind are the last to
know," as she also didn't know she was Blind for years and her doctors
also didn't tell her that when vision had crossed that threshold the
same as me. I didn't even know I had been Blind for so long until my
case manager told me the medical records went back so many years on
that. Apparently everyone in her office had a similar experience! I
didn't come to understand I was really DeafBlind until 2019 after I
had stopped driving entirely because it had become never safe for me
anymore whereas before I would only not drive when it wasn't safe
periodically during periods of greater vision loss. These days I'm
homebound anyway due to other complications, but I try to make the
most of life nevertheless!

Welcome again!
EOM

On Fri, Jun 9, 2023 at 1:09 PM Ineko Gary via NFB-DB <nfb-db at nfbnet.org> wrote:
>
> Hi Robert
>
> Thank you for sharing your story. Yes I am a lifetime. Member of the National Federation Of The Blind going on 26 years and now I am proud to say I am happy to be a member of the NFB Deaf Blind. Yes without hearing aids I cannot hear my family or nothing totally deaf. With hearing aids I may catch a few words, but not enough to go without a tactile sign language interpreter to all my doctors. And I wear to hearing aids one for each ear. And they are Bluetooth. Vocational rehab provided them for me back in the end of 2017. And they are going to help me to see why my left hearing aid keeps coming apart. Either that comes apart behind the ears while I’m wearing them or it’ll come apart from the tube while I’m wearing them.  I’m very gentle with my hearing aids. It’s just I don’t know the lift hearing aid is just keeps coming apart, but I don’t have any problems with the right hearing aid coming apart. But I cannot wear one without the other, so I just choose not to wear them . Because I trust my guide dog. And if the noise is overwhelming to me like outside, I could just take them off and everything is quiet again. My sister is like I wish we can take our ears off and everything. Be quiet again I start laughing. I said yeah y’all can’t turn off the noise . I said, but I can I just take out my hearing aid and I say I am so lucky.
>
>
> But you know, even though I don’t have usher syndrome. I still can relate to all the Deaf Blind members here. Because we are Deaf Blind in different ways. I know a lot of us don’t have usher syndrome, but we are still deaf blind. And we all can relate
>
> My light perception only in my right eye does not help me to navigate outside or help me to navigate in the mall or stores. That’s why I love having a guide dog. I know some blind people they have light perception and they say they’re like perception can help him help them to navigate out of a store or a mall. But my light perception does not. It is not useful.
>
> I also have non-24 with my body does not know they from night. I was wanting to do anybody here have that same problem? And how do you handle it without medication?
>
> Lots of love always
> Ineko &🦮 Frisco ❤️w
>
>
>
> Sent from my iPhone
>
> > On Jun 9, 2023, at 1:57 PM, Robert Stigile via NFB-DB <nfb-db at nfbnet.org> wrote:
> >
> > Robert
>
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