Re: OT Re: Re: Opting not to go bilateral

December 29, 2006

,

Thank you for clarifying. How do you know where Mc's is in the first

place? Do you ask a sighted friend to " walk " you there with the dog, or do

you ask for detailed instructions (assuming you have a text to speech

software program?) from your sighted friend as in a text message from your

friend:

" leave your house, turn left, at the corner intersection, press the button

for the signals, turn left into the street onto the street when you hear the

traffic stop, walk up the curb cuts onto the sidewalk, keep going to the

next intersection.... " et cetera. Then do you have these instructions

memorized in your head or kept handy in a file folder for future reference?

I ask because I have several friends with Usher's Syndrome (mostly type II)

and I'm not sure how to approach this subject with them since all of us are

not sure of how to proceed. Remember they can't comprehend speech so I need

to plan ahead and have to fingerspell or sign it into their hand, or walk

them by the elbow to the nearest Mc's. Or a better restaurant without

any trans fats!

Thanks,

Chris

N24C in R ear, activated 12/04

born profoundly deaf, aged 45

On 12/28/06, Kozlik <lisak70@...> wrote:

>

> Just to avoid any misconceptions, I'd like to clarify that it's the

> handler's job to know how to get from point A to point B and to direct

> their

> guide dog accordingly. Some sighted people think a blind person holds onto

> the harness handle for dear life while their dog takes them wherever they

> want to go. Some people also think blind people can tell their dogs to go

> to

> Mc's and they will do that without any further direction. While it

> is

> true that Tigger can tell where I want to go based on the route I take,

> it's

> up to me to be in control and to know where I'm going. I just thought I'd

> mention that since I can't count the number of times a sighted person has

> asked me, " Will your dog take you to Mc's if you ask him to? "

> <smile>

>

> Left ear - Nucleus 24 Contour Advance with Freedom BTE

> Implanted: 12/22/04 Activated: 1/18/05

>

> Right ear - Nucleus Freedom

> Implanted: 2/1/06 Activated: 3/1/06

>

> Deafblind/Postlingual

>

--

-- Chris

December 29, 2006

Let me jump in to this since I too have Ushers. There really is not all

that much difference in how the blind approach locating destinations. You

ask directions. Main difference is we ask for more specifics like distance,

location in reference to a given point, etc. " Over there that way " does not

cut it. When it comes to our guide dogs, some not all will pattern to a

route and know where you are going after walking it once or twice. Probelm

wiht these dogs is when they think you are going to the same place when you

actually want to go past. LOL

A suggestion when you are acting as sighted guide. Let them take your

elbow. Its safer. When you take their elbow you are pushing an unruly

shopping cart that will go everywhere but in the direction you want. When

they take your elbow, they follow your lead and its much easier on both.

*---* *---* *---* *---* *---*

Ever consider what our dogs must think of us? I mean, here we come back from

a grocery store with the most amazing haul -- chicken, pork, half a cow.

They must think we're the greatest hunters on earth!

-- Anne Tyler

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

December 29, 2006

Also, Ushers Type II has mild hearing loss so if your friends

dont use speech, more likely they are Type I. Type I is usually profoundly

deaf. I am Type II and did fine most of my life with hearing aids.

*---* *---* *---* *---* *---*

I got a new shadow. I had to get rid of the other one -- it wasn't doing

what I was doing.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

December 29, 2006

, thank you. I am hereby corrected and enlightened. (Grins.)

Chris

On 12/29/06, <rclark0276@...> wrote:

>

> Also, Ushers Type II has mild hearing loss so if your friends

> dont use speech, more likely they are Type I. Type I is usually profoundly

>

> deaf. I am Type II and did fine most of my life with hearing aids.

>

> *---* *---* *---* *---* *---*

> I got a new shadow. I had to get rid of the other one -- it wasn't doing

> what I was doing.

> & Dreamer Doll (Guide Dawggie)

> Newport, Oregon

> N24C 3G 8/2000 Hookup

> rclark0276@... <rclark0276%40charter.net>

> http://webpages.charter.net/dog_guide/

>

--

-- Chris

December 29, 2006

There is also Ushers Type III which consists of progressive hearing and

vision loss (only makes up 2% of all Ushers cases). Infants with Usher's

Type III are born with normal hearing, but become profoundly deaf by their

30's. Vision loss (retinitis pigmentosa) occurs during the teens and 20's.

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

December 29, 2006

,

When my former CI audi reviewed my CI application, she told me she thought I

had Ushers. Her and I learned alot through my evaluation including the fact

that some cases of deafblindness can be caused by other factors such as low

birth weight, retinopathy of prematurity, ototoxic drugs, antibiotics, ear

infections and untreated allergies (all of which were causes of my hearing

loss). For many years I never knew the cause of my hearing loss. It wasn't

until I saw my CI surgeon (and did some research about low birth weight and

retinopathy of prematurity) that I discovered the causes of my hearing loss.

In fact, after doing some research online, I came to find three other

deafblind people who lost their hearing the same way I did. Due to my

premature birth history, my audi ruled out auditory neuropathy (ABR was

negative) because of the symptoms and conditions I had while in the NICU.

Sometimes I find it hard to believe I functioned as well as I did. Even my

former CI audi said that a mild hearing loss can have an impact on speech

development. I didn't start to talk until I was 3 and interestingly enough,

it was at that time that hearing aids and ear surgery were recommended.

Unfortunately, my parents' health insurance refused to cover the cost. From

what I was told, many insurance companies back in the late 60's and early

70's refused to cover hearing aids unless a child's loss was severe or

profound (and even then sometimes it was a struggle!). It feels good no

longer having to wonder about the cause of my hearing loss!

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

December 29, 2006

summed it up perfectly. If I want to know where a restaurant is, I

ask for directions. It's usually helpful when a person can be as clear as

possible. As stated, pointing and saying " it's over there " doesn't

work too well. It's best to give directions such as " walk 3 blocks north to

Street and turn right. Continue walking to the next intersection which

will be Elm and Pine Street. Cross Elm Street and Mc's will be on

your left. " It's also very helpful if you can point out landmarks that a

person can see or identify by touch. For example, you could indicate that

there is a mailbox in front of the bookstore. Some blind people aren't good

with cardinal directions, so it might be easier to use directions such as

left and right. Most importantly, before offering a blind person assistance,

ask if it is needed. One of the most frightening things a sighted person can

do to a blind person (which I know you wouldn't do, but I still thought I'd

mention it) is to grab their arm or their guide dog's harness handle. A

well-meaning cab driver did this to me (grabbing Tigger's harness) once and

I ended up running into a brick wall because of it. Also, when you use

sighted guide, it's helpful if you can pause momentarily just before you

ascend or descend stairs and curbs. I've tripped over curbs because the

person I was with didn't pause long enough for me to feel the curb with my

foot and cane (or to feel the movement of his arm) to know that I was

approaching an up or down curb. If you'd like to learn more about various

sighted guide techniques, visit:

http://members.dslextreme.com/users/kathyz/sighted2.htm

or do a Google search for " sighted guide technique. "

Hope this helps!

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

December 29, 2006

,

I never knew that there was another type of Usher's Syndrome.

I attended oral boarding schools for the deaf in the United Kingdom where I

would have classmates who would " bump " into things in the dark, or were

thought to be " naturally clumsy " in the classrooms, and we would watch out

for them in advance.

I, II and II?! I had no idea. Medical advances are wonderful these days.

No one had an idea in that day that deafness and blindness would be closely

associated with each other.

I think there were perhaps 6 people with Usher's among 55 deaf students in

my classes, so that would account for an unusually high 11% incidence. My

grammar school would admit the top 2 students from each county in the United

Kingdom who were profoundly deaf, aged 11, from results from their taking

the '11+' examination. You're right, we would have to be profoundly deaf

first.

Chris

On 12/29/06, Kozlik <lisak70@...> wrote:

>

> ,

>

> When my former CI audi reviewed my CI application, she told me she thought

> I

> had Ushers. Her and I learned alot through my evaluation including the

> fact

> that some cases of deafblindness can be caused by other factors such as

> low

> birth weight, retinopathy of prematurity, ototoxic drugs, antibiotics, ear

> infections and untreated allergies (all of which were causes of my hearing

> loss). For many years I never knew the cause of my hearing loss. It wasn't

> until I saw my CI surgeon (and did some research about low birth weight

> and

> retinopathy of prematurity) that I discovered the causes of my hearing

> loss.

> In fact, after doing some research online, I came to find three other

> deafblind people who lost their hearing the same way I did. Due to my

> premature birth history, my audi ruled out auditory neuropathy (ABR was

> negative) because of the symptoms and conditions I had while in the NICU.

> Sometimes I find it hard to believe I functioned as well as I did. Even my

> former CI audi said that a mild hearing loss can have an impact on speech

> development. I didn't start to talk until I was 3 and interestingly

> enough,

> it was at that time that hearing aids and ear surgery were recommended.

> Unfortunately, my parents' health insurance refused to cover the cost.

> From

> what I was told, many insurance companies back in the late 60's and early

> 70's refused to cover hearing aids unless a child's loss was severe or

> profound (and even then sometimes it was a struggle!). It feels good no

> longer having to wonder about the cause of my hearing loss!

>

> Left ear - Nucleus 24 Contour Advance with Freedom BTE

> Implanted: 12/22/04 Activated: 1/18/05

>

> Right ear - Nucleus Freedom

> Implanted: 2/1/06 Activated: 3/1/06

>

> Deafblind/Postlingual

>

--

-- Chris

December 29, 2006

Correction: In my last post I meant to type: " Also, as a sighted guide, it's

helpful if you can pause momentarily just before you ascend or descend

stairs and curbs. "

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

December 29, 2006

,

The most common theme on lists for HOH/deaf is that many do not know the

cause of their hearing loss. So once you started talking, it was nonstop,

huh? (ducks and runs to Dreamer) LOL

*---* *---* *---* *---* *---*

I used to have super powers but my therapist took them away.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

December 29, 2006

,

That's true. A study I read said that 95% of people who are hard of hearing

or deaf do not know the cause of their hearing loss/deafness.

My mother always said she could never shut me up as a child. LOL! When I was

in school, I always got in trouble for talking when I shouldn't have been.

Sometimes I just don't know when to keep my mouth shut -- even today. LOL!

Just a word of warning for when we meet...You may not be able to get a word

in edgewise (NO funny jokes about women please! Hehehehe).

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

December 29, 2006

No funny jokes about women talking? No worry, I will be ready....roll

of duct tape in hand. LOL

*---* *---* *---* *---* *---*

If you're not part of the solution, you're part of the precipitate.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

December 29, 2006

Also, there are Orientation and Mobility (O & M) instructors who are

specifically trained to show blind people how to orient themselves in their

home community and how to walk safely. These O & M instructors teach the

specific routes the blind need to know, such as going from home to the

grocery store, from home to the drug store, from home to the bank and back

home. If I want to go to the drug store, I think, " walk to end of the block

going north, cross street facing north, walk 1 block east, cross street

facing east, walk 1 block north, walk 1 block east, cross street facing

east, cross another street going north, walk a few steps till we reach drug

store door " .

December 29, 2006

and ,

: Speaking of O & M instructors, one I worked with 10 years ago created a

Braille/tactile map of my neighborhood which I still have. It's interesting

to compare the businesses that were around back then to those that are here

now (using my BrailleNote GPS). There are times I've thought about throwing

the Braille map away, but I'm glad I didn't. My neighborhood has alot of

winding roads which means you can start off on one road and end up on

another without even realizing it. In comparing the data from my BrailleNote

GPS to my Braille map, only the businesses have changed. Major streets and

roads have not.

: Thanks to my BrailleNote GPS, I've been to Newport. I have CDs with

all 50 states that can be loaded onto the BrailleNote. I can type in the

address or name of any business and explore the neighborhood to find out

what is in the area. It's a pretty cool feature -- especially if you are

traveling out of state and want to familiarize yourself with a new city.

Better yet, I know where all of the mocha shops are! (Now I know you're

*really* impressed! LOL!)

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

December 29, 2006

,

Not only am I impressed, I am speechless! You have been to Newport and

where was I? LOL Say, how is the speech output of your Braille Note? I

need to try speech with my 2 braille note takers. So tell me about all the

mocha shops, please? LOL And which one is closest to me.

*---* *---* *---* *---* *---*

Don't walk ahead of me, I might not follow.

--Don't walk behind me, I might not lead.

--Just walk beside me, and be my friend.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

December 31, 2006

A blind person is unable to use a compass.

There is a better way use right or left turn.

Happy New Year to ALL