Hello everyone!

[Crystal11]

Hello everyone, Crystal11 also on Epilepsy.com as Crystal11. Happy to be here and nice to meet everyone here. It is really nice to see some people from E.com on here as well. I am a college graduate with complex partial seizures, blindness and deafness. I am interested in finding people with similar situations and making good friends. Nice to meet you all!

[RobinN]

Welcome Crystal to CWE We are a friendly bunch here.
I hope you find what you are looking for here. Let us know if we can help in any way.

[brain]

Crystal!

Nice seeing you over here too! Just
kick right back and make yourself a
home, and feel free to browse around
and feet IS allowed on the coffee table
(but that beanbag chair over there is
MINE! - LOL!) ....



You will enjoy it over here!

[epileric]

I hope you're as comfortable here as I am. The people here are great, also you should check out Spebers auditorium. I was impressed by how many people here either play or are extremely musically oriented.

[skillefer]

Hi Crystal! Welcome to CWE. I'm hard of hearing as well as having grand mal seizures. Let's say that it makes life interesting.

[brain]

And oh, Crystal, I am profoundly deaf,
and I am loosing my vision quite rapidly;
but I do talk - Crazy Monkey will soon be
back home in UK and she will be able
to back that one up! LOL!

[ashmstng]

Hello Crystal~
Nice to meet you. Welcome to CWE Board. I hope you love and enjoy this board as much as I do. Take care.

[Crystal11]

Do you have Usher's Syndrom at all, if you don't mind me asking. I have Usher's Type 3 I believe. Anyways I am happy someone referred me to here- i have been at Epilepsy.com for two years or so and never heard about this place. Sounds great.
Do you know sign lauguage?
I used sign language (Tactile sign) unless my vision is good for the day then i will look at it. I use Braille also as my main medium and try to use large print but its harder to do that.
Anyways, please take care and nice to meet you.

[Crystal11]

Thank you, appreciate your welcome.
Hearing loss can be annoying sometimes mainly becuase it deals with communication sometimes. I use sign language, speech, total commuication and brailled communication books when necessary. I don't have much hearing left without my hearing aids. Sometimes it gets confusing with people who help during a seizure wheather I am not hearing them or I am loosing awareness- kinda tricky.
Anyways, nice to meet you and hope to get to know you more.
Take care, be safe.
-Crystal

[Crystal11]

Nice to meet you.
I am impressed by how many people have writen to me and I have just signed in to her- really nice. I don't let blindness or deafness stop me from composing music. I have 80% at worst hearing loss in both ears without my hearing aids. I'm sure it's better with hearing aids in- but I have been composing music for a long long time and have found adaptations for all of my equipment such as Braille labels, brailling out menus and forms to raised marking or stickers to help find certin things on the keyboard/synthesizers. I am not able to play bass anymore though sence i don't have low-end hearing or high end hearing frequencies.
Anyways, thanks for your warm welcome and hope to get to visit with you guys more.. take care, be safe.
Crystal

[brain]

If you looked at my profile it would be
self-explanatory, I was born this way
with a DNA/Genetic flaw, with having
a mitochondrial *ick* issues; which is
progressive. Neurological and Cardiology,
with neurological being the first and fore-
most the primary issue.

And yes, I do sign, but I am lazy at it!
*laughing*

Believe it or not, I know Braille, and I
used to have the very old Braille machine;
a blind man who used to live in the other
sub-division whom I used to rake up the
leaves in his yard when it needed it (he
had his own lawn service, and his son
took care of that issue). He taught me how
to use it, and of course, I was horrible with
it at first! *laughing hard* I can still hear
him groaning and scolding me for not paying
attention. (His son would be in the background
laughing)

His father lost his vision in a factory explosion
up North, that is all I can remember, but his
wife passed away from something. I was pretty
young, and my memory now is pretty much
half shot.

My hearing was progressive, as with everything
else alongside with it; so once I could hear like
everyone else; but now I am profoundly deaf
at 115-120 dB (decibels). I do have problems
sometimes lip reading, some people just do not
move their lips or I have problems with words
that looks alike, such as "bat, mat, pat" - (for
those who can see - try doing this in front of
a mirror without using your voice in a natural
manner; and you will see what I mean; even
use the words such as "optimize, compromise"
and I would be left with ???? as to what you
were saying ... for an illustrative example.)

I know the type of mitochondrials I have, but
I have been advised not to disclose it. I believe
they are waiting for my death before they make
the final confirmation and conclusion(s). But
most likely it is what they implied that it is,
because I fit right in the boat.

Medical Doctors cannot do anything about this
at all; however - there was a time, that surgery
(brain) "may or may not" have slowed down this
progression when I had the opportunity for this
in 80s and early 90s, but it's far too late now.
For all they can do is add meds to the feedbag,
surgery is completely out of the question.

With this type of progression, everything is on
the decline at an accelerated pace, but for some
reason, the past 3 or 4 months, it had somewhat
"stalled" ... but it did this before in mid-2007,
where it "stalled" for I think 2 or 3 months, then
it went forward onwards to the declination. It
is asinine!

Moreover, I did head down to Cleveland Clinic Florida
and they added Lamictal, in which it had helped
greatly on the seizures; which was nice for a change
but the flip side of the coin is ... "how long will it
last?" remains unknown. For this type of progressive
issue is on its destructive path.

Now in regards to my vision; just as the Doctors
decades ago had implied, once my hearing goes,
my vision will quickly follow - and astonishingly;
they were absolutely bulls-eye on that! Due to my
insurance, I am limited on the glasses, and while
I just had a brand new pair, I was already "out of
focus" within a few months of getting them. I often
wear them upside down (I wear bifocals) so I can
see better. Even on the computer - I have to have
the font DPI set large so I can see; something that
was unheard of until *bang* after a major seizure
in 2006, my vision just went and declined since. It
is now almost like I need a new pair of glasses
every 3 or 4 months!

*sigh*

Watch for the next post....

[brain]

Now - when I was a young one and growing
up - I always had vision problems in a weird
way; but it was neurological.

I had sudden moments of (you may or may
not imply that they could have been seizures)

• No depth of field
• Everything becomes flat (no 3-D or 3-dimensional)
• Things of color now becomes shades of gray (grey)
• Colors would become hues (like washed down watercolor painting - a blur)
• Distance (unlike depth of field) is disorientated
• Ultra-light sensitivity

While this only lasted but a brief moment, I
would end up with a major headache and an
urge to nap (sleep). I would not feel so good.

The only exception was the "No depth of field",
this one was a very frustrating event - I had a
therapist who worked with me, training me early
on (and this took years) to overcome this "handi-
cap". So I wasn't running into walls, or misjudging
the distance from here to there, or whatever it
might be. I learned to "count" in my head the
distance from here to there (Schools back then
had stairs) and remembered how it all went. I
was known to keep alongside to the walls rather
than in middle of halls because people would
be confusing to me as if they are close or far.

This also affected my handwriting as well, as
often the Teachers scolded me for writing so large
even after having my vision tested; I was fine.
No one understood it, but I couldn't explain it
either for it just comes and goes.

Then like I posted in the EFA Forums, a thread
I started in regards to "White Lights". I experienced
and still do experience those. I also experienced
kaleidoscopic lights especially during the nights
when I am sound asleep, while it was quite common
when I was younger and gradually faded away to
a point where it was so isolated. Unfortunately,
it made a comeback in the mid-90s (or early 90s,
I cannot remember which) - and it's picked up
the pace; and that I cannot explain.

Now that my vision is going - I have not experienced
anymore of that kaleidoscopic lights yet, to me, it
seemed like it vanished after my occipital lobe is
now being on its destructive path.

All parts of my brain are affected and effected all
over, and like Cleveland Clinic Florida (CCF) said,
"We cannot remove this and that and that" (TRUE).

<really being sarcastic>
Ironically, man can shrink heads - they have done
that since "Ice Ages" - but we cannot do "head
transplants"?
</end of being really sarcastic>

[brain]

I don't let blindness or deafness stop me from composing music.

Crystal ---> AWESOME!



You will find a photo of me, an old one,
in my album - in Senior High School Band.
I love music, and in spite of my status
and condition; yet, I can still play!

Keep on playing!

[Crystal11]

Sorry I didn't know- I have no way to see your picture in order to tell. Also I am new to this site and my screen reader (program that reads what is on the screen) is having trouble with certin parts of the site. So i am still learning it. My friend Rachel who is also on here is helping with it as well. I use large print sometimes but my eyes are not used to it anymore. I have tunnel vision and nystagmus, ambliopia, strabismus and have had surgery x 3. My hearing is stable right now but it does cause trouble in school and now that I'm graduated from college it will cause troubles in work- you have to have decent hearing for communication and it can get hard and frustrating sometimes.
That is great you know Braille- sign language would be good thing to have a good concept of as well cause you can learn to see if by feeling it like i do- tactile signing. In college I had four interpreters who signed all my classes which was a work-out having to hang on to their right hand for hours- but I was able to understand the teacher better i guess you could say. I got the material hehe.
The machine you were using was the Perkin's Brailler typewritter which is always a good thing to have around. Coolness.
I wish you well with everything Brian and I am having a great time getting to meet people here at the site- awesome!
Take care-

[Crystal11]

I have a guide dog named Umbro who is also trained as a seizure-responce dog. I got him from Guiding Eyes for the Blind In NY- i love him to death and he is always on duty i guess you could say. Either guiding me while out and about or watching out for seizures. He notices behavior changes and chemical changes and he gets adgitated and comes to check on me and will stay with me till the seizure is over. Anyways, he gives you a big bark hello. He is sleeping next to me on the couch just resting with me while I'm online hehe-
One time i had a seizure and ended up sitting on the edge of my bed, and Umbro knew something was wrong and jumped on me and knocked me off the bed and I hit my head on the door and the floor- even though it was a complex partial seizure, i hurt after it. my little boy was trying to help me though the best he could. I will try to put a picture of us together if i can find it hehehe.

[brain]

I have only gone through tactile fingerspelling
only when I had major seizures which resulted
temporary blindness (whether total or partial)
and deafness was involved --- it was the only
way to communicate with me after the seizure
was over. This was a rare event that only happens
once in a blue moon.

Moreover, I also had Hearing Guide Dogs, I will
upload those two in my album. The first one,
he became old; is a imported German Longhair
Shepherd; a reject due to defect - and became
disqualified because of hip problems and other
health problems. (Which are known for this
breed)

And the other one, the White Samoyed Husky,
also an AKC reject, due to flaws - her life span
was very, very short, she died young; had cancer
and she was taken away from us and we wanted
her to stay with us until she passed away.

But I never could qualify for another Guide Dog
again, I've put in applications for over a decade
and half, and have been repetitiously turned down
because I had 2 Guide Dogs previously. *sigh*

However, the Samoyed - she almost became
"disqualified", because she somehow became a
"epileptic dog" too; she just knew even when she
was in another room and how in the world would
she know was over everyone's heads! But if I had
a seizure, she would push me down to the couch
or floor, or if I am on the floor she would nudge
me over and stay with me ... this is where the problem
nearly got her in trouble when the paramedics
were attempting to treat me because of the
Tonic Clonic seizure and she was growling and
snapping at them. She wouldn't permit anyone
near me. (Only family members)

At first this was not understood, since she was
a certified hearing guide dog - however, they
began to review everything and it was determined
that she was able to discern seizures, so they
made a special exception and worked with her
so that she can permit people to help me.

But Seizure Response Dogs were unheard of
back then but she was not a "Service Dog"
as she could not be both a Hearing Guide dog
and a Service Guide dog - it had to be one or
the other. One of the things she was so wonder-
ful was to the fact when I would be coming out
of it, like getting up off the floor, she would be
there to help - being the work dog she was.

She would even lead me to the bedroom, and
even sleep with me on the bed, all curled up in
a snowball! My family missed her dearly.

She was totally different from the 1st Guide Dog,
but the 1st Guide Dog I had, he was also a
watch dog as well, so if I was home alone, do
not even "think" about trying to break into my
house or do anything funny because he would
come charging after you! He did just that with
one person and crashed through the window!
(Yup, go figure, he busted the window) and
kept the intruder at bay until the Police came to
arrest him!

He was even more protective especially at nights
when my son and I were alone (as my (ex) husband
was a truck driver and would be on the road) and
if there were anything odd, he would be there on
the spot! Only after waking up my little son first
and pulling him to me, and I would hide him in
the closet with his teddy bear and have the gun
out and the dog would lead me where it's coming
from and I would check it out. Sometimes it would
be just drunks wandering around, lost and confused,
or sometimes it would be some other reasons. But
once it was a fight outside, a stranger trying to
beat up the neighbor across the street's husband,
and I released the dog and he went off charging
after the fellow who was attacking him, unfortunately,
he got away, while my dog stayed put with them.
While the Police arrived, they had to call for the
ambulance, and they didn't know who the person
was but if I remembered correctly, the person
was trying to break into their car or cars (stealing
radios, sound system, vehicles - were hot back
then) and he heard it and went out after the
fellow with a night stick and it ended up in a
fight. The neighbors were ever so grateful for
my dog that they gave him a thick T-Bone steak
which he enjoyed every bit of it. He knew the
neighbors very well and was that protective of
"the street"....

I was the one who trained him further into K-9,
he responded to not only verbal commands, but
also leash, and hand signals as well. He looked
very mean and nasty, not the type of dog you
would want to mess around with, but he was
an exceptional Hearing Guide Dog ... he was at
an "old age" when he was trained, which was
very unusual; but he qualified. I had him for
nearly 5 or 6 years.

The Samoyed, we did not have her for very long,
and it really hurts ... as she was an adorable
ball of fluff who did her duty and beyond.

You will see them both in the photos in the
album when I upload it later on today...

[Bernard]

Hi Crystal11, welcome to the forum.

Glad you found us here. Make yourself at home.

[Crystal11]

That is a neat. I have never heard of a hearing guide dog though- in American they only have hearing dogs, or guide dogs, or seizure responce dogs, or service dogs. HOwever Umbro was trained at GEB as a guide dog of course but was given training while I was at the center because I had several seizures while there. You can have a guide dog but no school right now trains for hearing work and guide work at the same time. I have noticed that I use Umbro's ability to hear to kinda check in with enviromental sounds and I also pay attention to his harness and leash since I can feel what he is doing through those-
What guide dog school did you go to?
What hearing /service dog did you go to?
The breeds your talking about don't sound like breeds that are used by school here- but that is awesome that you had those doggies with you, I'm sure you miss them and that they helped you a lot.
While at GEB I was at breakfast and I just finished eating when I got an aura, but instead of my getting Umbro up to leave, he got up and was getting agitated and I thought I did something wrong- so I quickly told my instructor that I was not feeling well and they found a chair in the lobby again the wall that I could rest, wait or whatever till the seizure was over. They said that I was moving some but nothing like a grand mal since mine are Complex partials. Umbro's leash had been wrapped around my hand just in case he wanted to go for the instructor (since he knew his instructor more than me and still had a bond). They said that during my seizure they worked with Umbro on how he should act and what he should do and the rest was what Umbro naturally did. It surprized me because I barely knew Umbro back then and in the begining of training you don't usualy get such a response out of a new guide dog. Umbro was there with me and settled down after the seizure and my instructors told me what they did with him, training etc. I love him a lot- he is my little boy.
Take care and be safe-
bark barks from Umbro

[brain]

This is Sprite, the 1st Certified Hearing
Guide Dog ...



And this is Star, the 2nd Certified Hearing
Guide Dog ... who also was able to discern
seizures.



This is America - back in those days, they only
had Seeing-Eye Dogs, Hearing Guide Dogs,
and Handicapped Dogs (for those who were
in wheelchair bound only). The names have
changed over the decades, as you can see
they are old photos.

Hearing Guide Dogs have ORANGE COLLARS
and are marked with Hearing Guide Dogs,
including on the leash; the Owner has the
ID card with BOTH the photo of the Dog and
the Owner.

Back in my days, it was very troublesome,
as "only Seeing Eye Dogs" were allowed in
Public Places - when the Law implied that
all specialty trained Guide Dogs have full
access. I had Police/Sheriff summoned
because I demanded to enter into the build-
ing and the Managers refused to comply
with the Federal Law.

Times now sure have changed; gone are
the "OLD SEEING EYE DOGS ONLY" signs
and now up are the "SERVICE DOGS ONLY".

Discrimination was very harsh and cruel back
in my days when I had both of these dogs,
however, it did not imply to "all places", for
some of the Stores and Businesses were very
excited about them (they are NOT supposed
to spoil them but they were so well behaved
and perfect examples for the Public knowledge
and awareness that there are other Guide dogs
besides Seeing Eye Dogs)... so trust me; in spite
of my displeasure --> I did cave in, they had
"doggie bags" for those 2 Guide Dogs.

But I will tell you this, one Store had a Mega-
Size Christmas Stocking full of Doggie Goodies
for Star, my favorite Grocery Store, and she
just went absolutely NUTS! She insisted on
carrying that, well, dragging that huge thing
to the car! *laughing* It was a sight to see!
(And the employees all pitched in to buy it
for her and many of them watched her drag
that huge stocking into the car!)

And mind you, she would NOT let me put it
in the trunk, and insisted that it be in the back
seat ... she was already chewing on the rawhide
bone on the way home (she loved those!)...

*sigh*

But they're in my Album too.


PS: My Guide Dogs both were trained at the same
place which is now defunct.

[Crystal11]

Very interesting stories- thanks for sharing. That is strange a school would not longer be working but i guess it happens. The seeying eye, guiding eyes for the blind, guide dogs for the blind and others are really popular guide dog schools, but service dogs go to another school for training. Just last year my school GEB trained a guide dog first and then sent it to service dog school to learn seizure work with it's master- that is the first time for one school to train a dog in both types of work. Really neat story. Your doggies are pretty and i'm sure they did excellent work for you.
Umbro is a white lab about 60lbs and is 5 years old now. I hope he will be with me for a long long time. I love him to death and he loves to work. I can just say "Umbro works?" and he goes for the harness on the door. Sweetness.
Take care and be safe..