Need to vent

August 7, 2002

I can't answer all of your questions, but NO he should not be on the regular

school bus, he should be on a special bus that just picks up kids for the

same program. Here it is one of the smaller handicapped buses. There should

be an aide on the bus. I think as far as seatbelts go, it depends on your

county. I believe ours has seatbelts. When my son was approved, and I

completed all the enrollment paper work I was told that both the teacher and

the bus driver will call me at home to make arrangements.

Yes, I am terrified of the bus, but am sure he will probably do fine, and as

the school keeps telling me, my son will not be the first child that they

have dealt with that has the same issues. Both the teachers, and the bus

drivers/aides, are all used to dealing with these issues. But I will feel

better when I talk to them! I am sure I will be driving behind that bus the

first few days at least!

hahahhahaha

-Jenn

August 7, 2002

Yes they said they could provide trans. if we needed it... but put

that tone on it, like it would be a hassle.... and my not wanting to

send him on a BUS.... do they have seat belts/car seats? is there

someone watching them? He can open any window... I can just see him

climbing out...

And the bus that runs for my 2 girls comes by at 6:15-6:30am to get

them to school by 7:50.... if his preschool is the same hours... that

bus will have to get here, at 5am hahahah ... I will check into it

and thoroughly " grill " them when I talk with them.... They ( school

system) said " She KNOWS who you are, and who your son is, and she

knows his birthday is the 12th. She has 2 other children whose

birthdays are the 5th and 6th she is trying to get going.... She

will call you after that " well today is the 6th... if I dont get a

call by noon, I am going to on the phone again.... I was not rude, I

just asked if he had qualified since she had never contacted me again

after his evaluation! I dont think I deserved the attitude I received

when I called... I do have the therapist who just happened to know

the head of this program, calling to try to get some results...

When all else fails go over thier head LOL

> >I have to drive 35 minutes one way after dropping my girls

> off ( and it takes 20 min to get to their school!) I am just so<

>

> Aren't schools mandated to provide transportation to school? You

should probably call the Education Agency that oversees the school

and maybe they will contact the school about your son. Carlson

>

October 31, 2002

I didn't want to ake MTX either so I stayed on prednisone for about a year

and then went on Enbrel when it was available. It works pretty good. Peggy

B.

October 31, 2002

Bev,

Hi I haven't responded in a long time, due to job stress and the physical

reactions, etc. But I too am allergic to almost everything, there is only 1

antiobiotic that I can take in all the possibilities??? So I was very afraid

to take MTX, and at first it didn't seem to work at all, so they put me on a

10mg per day dose of prednisone until the Mtx took affect.

Well.........................it did, I take it by injection, and am down to

4mg of prednisone per day. I am able to work, and sleep at night in

reasonable comfort. It seems like it took forever to kick in, almost 2

months, but it has and I am very grateful. I am also one of the lucky ones

who does not react to plaquenil, and I take that and Celebrex 2 times per

day.

I would try the Mtx, it would be super if it could help you like it has for

me.

Write me direct if your would like

Gentle Hugs & Prayers,

Carol

Dandcmayer@...

November 1, 2002

Hi, Carol,

Thanks for your email and for letting me email you

personally. This list is wonderful, isn't it?

I decided to try another short course of Prednisone -

starting with 40mg for 2 days and working my way down

to none, all within 8 days. I think it's like shock

therapy for the PA. It worked the first time,

although I felt lousy for a few days. I didn't have

any nausea today, but feel like my entire body is on

fast-forward. Not too bad at work because I certainly

got a lot of work done, but we're going to a party

tonight and I'm afraid I'll talk nonstop. Oh well,

the joys of this disease.

If this doesn't work, I'll give MTX a try. My GP

doesn't want me to try it because of the toxicity and

side effects, but I'm sick and tired of being sick,

tired and in tremendous pain. I see my rheumy in

December and I'm going to ask her about Enbrel or

Remicade. We discussed this the last time and she

wanted me to go from Mobicox and Prednisone to MTX.

I'll let you know what she says.

Well, I'd better go for now and finish up what I'm in

the middle of doing before the weekend.

Again, thanks for your thoughts and your prayers.

Blessings,

Sam

November 1, 2002

Sam,

My nick name is Sam, so maybe that is why we have so much in common. I am

down to 4mg of prednisone and my Doc wants me to stop for now. I went down

to 1 mg, but had a terrible time with my Asthma, so he increased it back up

gradually to see where I was comfortable. I agree with you about being

speeded up, by GM says it gives him 2 of me when I am on a higher dose.

My Rheumy and Internist will not allow me to try other therapy like Enbrel,

Remicade, Aarava, etc. because I have a high positive TB test, and they do

not want to treat me for this. I know others have taken the TB treatment and

then gone on to the " better " medications, but the group of Rheumy's at

Stanford University have discussed this among themselves, and are very

concerned about an infection they could not treat, due to allergic reactions

to antiobiotics, etc. So I am very blessed that the Mtx, Plaquenil and

Prednisone combo is working.

Take care and be good to yourself.

Gentle Hugs & Prayers,

Carol

November 4, 2002

Hi, " Sam " ,

Well, this was a very interesting weekend. I had a

very busy day yesterday - 3 church services, coffee

hour and confirmation class - WHEW!! I guess I should

explain that I am responsible for Christian Education

at our church and very involved in worship.

Fortunately, I don't have many Sunday's like yesterday

- it would kill me for sure!

The prednisone seems to be helping somewhat - aches

and pains aren't quite so bad, but I'm so hyper. I'll

be glad when Friday gets here and I can stop taking it

for awhile. I took Prequinal for some time, but now

have permanent eye damage, so can't take any meds in

that family. It didn't really help much, anyway, so

I'm not too disappointed. I'm tempted to fill the MTX

script, but I still quite get myself to do it. But I

am thinking about it much more, so I'll probably take

the step very soon. I'll see how long the Prednisone

works and then make the decision.

Well, I'd better get my work day started. It's going

to be a very long day because all I want to do is

sleep!

Take care, Carol.

Blessings,

Sam

--- Dandcmayer@... wrote:

<HR>

<tt>

Sam,

My nick name is Sam, so maybe that is why we have so

much in common. & nbsp; I am

down to 4mg of prednisone and my Doc wants me to stop

for now. & nbsp; I went down

to 1 mg, but had a terrible time with my Asthma, so he

increased it back up

gradually to see where I was comfortable. & nbsp; I

agree with you about being

speeded up, by GM says it gives him 2 of me when I am

on a higher dose.

My Rheumy and Internist will not allow me to try other

therapy like Enbrel,

Remicade, Aarava, etc. because I have a high positive

TB test, and they do

not want to treat me for this. & nbsp; I know others

have taken the TB treatment and

then gone on to the & quot;better & quot; medications,

but the group of Rheumy's at

Stanford University have discussed this among

themselves, and are very

concerned about an infection they could not treat, due

to allergic reactions

to antiobiotics, etc. & nbsp; So I am very blessed that

the Mtx, Plaquenil and

Prednisone combo is working. & nbsp;

Take care and be good to yourself.

Gentle Hugs & amp; Prayers,

Carol

[Non-text portions of this message have been

removed]

</tt>

<tt>

Please visit our Psoriatic Arthritis Group's

informational web page at:

<a

href= " http://www.wpunj.edu/pa/ " >http://www.wpunj.edu/pa/</a>

-- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack

aka(Cornishpro@...) began to conduct extensive

research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest

format. Many thanks to Jack. Back issues of the

newsletter are stored on our PA webpage.

Also remember that the list archives comprise a

tremendous amount of information (Over two years of

messages and answers).Feel free to browse them at your

convenience.

Let's hear from some of you lurkers out there! If you

have a comment or question chances are there is a

person who has been around a while who can help you

out with an educated guess for an answer. If not we

can at least steer you in the right direction with a

good website to go to for the answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & amp; List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

</tt>

<tt>

September 12, 2003

On Fri, Sep 12, 2003 at 04:45:49PM -0000, artzoe wrote:

>

> I'm sorry everyone, I just need to vent. My roommate told me

> yesterday that she thinks that my goals (visible abs) are

> unreasonable and that she is starting to worry about me. This is not

> the first time she said something like that to me – she once told me

> I was going too far when I turned down candy she was offering me.

> The thing that really bothers me is that her typical diet includes

> wonder bread, peanut butter, ice cream, chocolate, candy, pizza and

> gallons of diet Coke. Once in a while she'll have protein in the

> form of chicken nuggets. She walks for about 2 hrs a day but

> sometimes goes 6, 8 hours between meals.

There are those people out there who think that you should not have

to turn down things that are offered to you(sodas, candy, cake) for

you to lose weight and that if you do it means you are obsessed with

your weight and that you are not living a 'normal life'.

This has happened to me and usually comes from skinny people who have

never worked out(no kidding).

One of my friends who does work out went and visited someone we both

knew and this other person told him 'eve and you talk way too much

about working out. You need to stop thats s***'.

> I was absolutely furious but I calmly responded that I am well aware

> of the dietary sacrifices and exercise commitments that it will

> take, but that I am not afraid of a challenge and that I am positive

> that with time, I will reach my goals. I am just so irritated.

You should take her out for a huge hike one of these days and see

how well she does ;>

--

-eve

September 12, 2003

Visible abs are the holy grail of weight loss/exercise. They are

perfectly attainable once the fat covering them up is burned off. So

keep at it and if you are diligent it will happen. They will never

appear with poor eating habits. Only a few slipups and they will

submerge like an enemy submarine. So eat clean and work them hard,

and tell your friend it is not an impossible dream.

Stasia

September 12, 2003

Personally I think " misery loves company " and that's why your

roommate has issues with it. But you know what?....you're making

positive choices in your life and reaching your goals! Good for

you! Don't let her/him sabotage your progress...or anyone else for

that matter.

Marie

> Visible abs are the holy grail of weight loss/exercise. They are

> perfectly attainable once the fat covering them up is burned off.

So

> keep at it and if you are diligent it will happen. They will never

> appear with poor eating habits. Only a few slipups and they will

> submerge like an enemy submarine. So eat clean and work them hard,

> and tell your friend it is not an impossible dream.

>

> Stasia

March 22, 2004

I have been on Androgel for about 20 months and am experiencing the

same problem and can sympathize with your problem. My doctor will

only test total and free testosterone. Does anybody on this list

know any good doctors in the Tucson or Phoenix, AZ areas?

> I just came back from the endo.

>

> ARRRRGGGG. I 've been taking androgel for a few months and getting

> breast development, soreness and all that. I discovered here,

that's

> because of conversion to estrogen.

>

> I asked him to test. I'm outside the reference range. 56 on a

scale

> to 53. I've lost all energy, focus, libido and the rest that T

> initially brought back.

>

> I bring him an article on Arimidex. He doesn't even want to talk

> about estrogen. tells me my T levels are plenty high. Sort of

tries

> to convince me that maybe this is as good as it gets or my problems

> lie elsewhere.

>

> He says he can't prescribe Arimidex. Says you expect to take this

for

> the rest of your life? he doesn't understand that without

addressing

> the E, I've really got no life.

>

> I'm just marveling how an endocrinologist can not understand even

> rudimentally how profoundly mood and drive and ambition are

affected

> by T and E levels.

>

> I put up a fuss and got a short prescription essentially under

> protest.

>

> Anyone know a good hypogonadism Doc in Seattle-Tacoma area? He's

ready

> for me to go and I'm ready to leave. There's got to be good T

docs in

> this area with the UW here, Fred Hutchinson and the rest.

>

> ANybody got some good names?

March 22, 2004

Retrogrouch,

Do you have a good PCP that might refer you to another endo?

I think it was Phil that suggested going to a large pharmacy and asking a

pharmacist, could they tell you endo 's Rxing men Arimidex. Sounds like a

good idea to me don't know if it's worked for anyone or not, but certainly

worth the try.

OR eon

Need to vent

I just came back from the endo.

ARRRRGGGG. I 've been taking androgel for a few months and getting

breast development, soreness and all that. I discovered here, that's

because of conversion to estrogen.

I asked him to test. I'm outside the reference range. 56 on a scale

to 53. I've lost all energy, focus, libido and the rest that T

initially brought back.

I bring him an article on Arimidex. He doesn't even want to talk

about estrogen. tells me my T levels are plenty high. Sort of tries

to convince me that maybe this is as good as it gets or my problems

lie elsewhere.

He says he can't prescribe Arimidex. Says you expect to take this for

the rest of your life? he doesn't understand that without addressing

the E, I've really got no life.

I'm just marveling how an endocrinologist can not understand even

rudimentally how profoundly mood and drive and ambition are affected

by T and E levels.

I put up a fuss and got a short prescription essentially under

protest.

Anyone know a good hypogonadism Doc in Seattle-Tacoma area? He's ready

for me to go and I'm ready to leave. There's got to be good T docs in

this area with the UW here, Fred Hutchinson and the rest.

ANybody got some good names?

March 22, 2004

Hi,

Wrong doctor!

There is an expert in endocrinology at a school in Tacoma I believe if

I remember the articles on T and maybe even pellets in my attempt to

find someone on GOOGLE. Find medical journals at a college library to

find out who is published in hormone therapy. Even then you will

sometimes find bias in this field. You need to read up on the subject

to know who is bad and good so you can get proper treatment.

Spurts of T such as gels, patches and injections will cause the body

to convert T to E according to my endo. That is why he likes pellets

which I renew every 4 months without and concern for daily or weekly

involvment and don't worry about getting it on my family.

Most info and education is from pharmaceutical reps that push their

own hormone products only. Doctors usually have no formal education on

this new therapy they wish to acquire with the reps help. It is not

good help. They do not have 10 years experience.

ernestnolan

> I just came back from the endo.

>

> ARRRRGGGG. I 've been taking androgel for a few months and getting

> breast development, soreness and all that. I discovered here, that's

> because of conversion to estrogen.

>

> I asked him to test. I'm outside the reference range. 56 on a scale

> to 53. I've lost all energy, focus, libido and the rest that T

> initially brought back.

>

> I bring him an article on Arimidex. He doesn't even want to talk

> about estrogen. tells me my T levels are plenty high. Sort of tries

> to convince me that maybe this is as good as it gets or my problems

> lie elsewhere.

>

> He says he can't prescribe Arimidex. Says you expect to take this for

> the rest of your life? he doesn't understand that without addressing

> the E, I've really got no life.

>

> I'm just marveling how an endocrinologist can not understand even

> rudimentally how profoundly mood and drive and ambition are affected

> by T and E levels.

>

> I put up a fuss and got a short prescription essentially under

> protest.

>

> Anyone know a good hypogonadism Doc in Seattle-Tacoma area? He's ready

> for me to go and I'm ready to leave. There's got to be good T docs in

> this area with the UW here, Fred Hutchinson and the rest.

>

> ANybody got some good names?

March 22, 2004

On Mon, 22 Mar 2004 22:35:21 -0600, you wrote:

>Retrogrouch,

>

>Do you have a good PCP that might refer you to another endo?

>

>I think it was Phil that suggested going to a large pharmacy and asking a

>pharmacist, could they tell you endo 's Rxing men Arimidex. Sounds like a

>good idea to me don't know if it's worked for anyone or not, but certainly

>worth the try.

Thanks.

March 22, 2004

I don't want to turn this board into anything too commercial, but I

am some other members use Swale aka Dr. Crisler at

allthingsmale.com. He is very knowledgable and on the cutting edge

of TRT treatment. He is an option for those folks who can't find

someone locally. He will also work with your local doctor if

necessary.

Good Luck

> > I just came back from the endo.

> >

> > ARRRRGGGG. I 've been taking androgel for a few months and

getting

> > breast development, soreness and all that. I discovered here,

> that's

> > because of conversion to estrogen.

> >

> > I asked him to test. I'm outside the reference range. 56 on a

> scale

> > to 53. I've lost all energy, focus, libido and the rest that T

> > initially brought back.

> >

> > I bring him an article on Arimidex. He doesn't even want to talk

> > about estrogen. tells me my T levels are plenty high. Sort of

> tries

> > to convince me that maybe this is as good as it gets or my

problems

> > lie elsewhere.

> >

> > He says he can't prescribe Arimidex. Says you expect to take this

> for

> > the rest of your life? he doesn't understand that without

> addressing

> > the E, I've really got no life.

> >

> > I'm just marveling how an endocrinologist can not understand even

> > rudimentally how profoundly mood and drive and ambition are

> affected

> > by T and E levels.

> >

> > I put up a fuss and got a short prescription essentially under

> > protest.

> >

> > Anyone know a good hypogonadism Doc in Seattle-Tacoma area? He's

> ready

> > for me to go and I'm ready to leave. There's got to be good T

> docs in

> > this area with the UW here, Fred Hutchinson and the rest.

> >

> > ANybody got some good names?

March 23, 2004

--- Hy. I was reading the book on male menopause, the testosterone

syndrome, I think is the name, recomended by some of you, excelent

book, and it tells about the problem w/ aromatizing T into

estrogen/estradiol.

It recomends 50MG of Zinc/day, also, eat soy protein, because the

kind of hormone like substance it has, very similar to estradiol,

but 1/500 times less potent(500times less), does nothing to attack

the male body like estrogen/like hormones do, but it competes at the

cellular level w. estrogen/estradiol for the receptors we have in the

celullar level, overcrowding and rendering obsolete a lot of

estradiol in the system.It also promotes estrogen/estradiol

elimination by the liver. Also recomends eating Broccoli/cauliflower,

and stay away from grapefruit.

Vitamin C also promotes hormonal buildup(t) and liver destruction

of estrogens. If your Dr. does not understand, or is soold fashion as

to not give importance to such an important factor in T replacement,

you have to go to another Dr. At the same time T is replaced,

estrogen/estradiol has to be attacked.Medicine and food together do

it. Alcohol is the enemy of good hormonal balance because it makes

the liver less effective in destroying estrogens. Avoid eating fat,

because fat becomes transformed into estrogen. You have to lower the

fat in your diet and in your body, exersice, sit ups are very

important, that belly is a estrogen factory, your enemy.

later_______________________________________

In , retrogrouch@c... wrote:

> I just came back from the endo.

>

> ARRRRGGGG. I 've been taking androgel for a few months and getting

> breast development, soreness and all that. I discovered here,

that's

> because of conversion to estrogen.

>

> I asked him to test. I'm outside the reference range. 56 on a

scale

> to 53. I've lost all energy, focus, libido and the rest that T

> initially brought back.

>

> I bring him an article on Arimidex. He doesn't even want to talk

> about estrogen. tells me my T levels are plenty high. Sort of tries

> to convince me that maybe this is as good as it gets or my problems

> lie elsewhere.

>

> He says he can't prescribe Arimidex. Says you expect to take this

for

> the rest of your life? he doesn't understand that without

addressing

> the E, I've really got no life.

>

> I'm just marveling how an endocrinologist can not understand even

> rudimentally how profoundly mood and drive and ambition are affected

> by T and E levels.

>

> I put up a fuss and got a short prescription essentially under

> protest.

>

> Anyone know a good hypogonadism Doc in Seattle-Tacoma area? He's

ready

> for me to go and I'm ready to leave. There's got to be good T docs

in

> this area with the UW here, Fred Hutchinson and the rest.

>

> ANybody got some good names?

March 23, 2004

On Tue, 23 Mar 2004 07:57:09 -0800 (PST), you wrote:

>This is what we have to go through. I started Arimidex one half a pill 3 days

a week and after one month my blood test came back higher. I was on Testim 10

grams and getting a shot 200 mg. every other week. I told him the shot was the

big problem converting into E2 but he was having a hard

> time keeping my levels up and would not stop giving me the shot. So he upped

the Arimidex to one half a pill everyday. After a month my levels came down to

24. I am now taking a half a pill once a week and no longer need the shot. My

Dr. treats over 60 men for this and now is a believer in high E2 and us feeling

like shit. He tested all of his men and over 3/4 of them were high. Now that

my E2 is down my T. levels are higher on less meds. My ED is gone and I can

have an orgasm with very little work. I went for years not being able to have

and orgasm in my wife. Also my prostrate went down and I am not up all night

going to the bathroom. Here is a link about E2 and T. that you should print out

and let your Dr. read and this post.

>http://www.medibolics.com/ArimidexBoostsTestosterone.htm

Thanks. I actually gave him this article. He told me it was about

side effects and not efficacy. But it made him think a bit.

I'm wondering if maybe I can give him your doctors name to call as he

seems an understanding convert.

March 31, 2004

Hi,

These are WA doctors of all sorts that have purchased pellets from a

pellet source that supplied the numbers.

Chevelah Boone 509-935-8711

Federal Way Mike B. 253-838-1520

Federal Way Estelle Yamaki 253-838-8733

Fort Angeles Gorden Gardner 360-452-5591

Omak Brecht 509-826-1600

Pasco 509-547-5742

Port Angeles 360-457-6764

Richland g 509-943-0300

Seatttle 206-461-4503

Seattle Mc Intosh 206-215-3200

Spokane Gilbert 509-455-8866

Walla Walla Regina Karmy 509-522-0100

Walla Walla Betz 509-522-0100

Hope this gets to you OK.

ernestnolan

> I just came back from the endo.

>

> ARRRRGGGG. I 've been taking androgel for a few months and getting

> breast development, soreness and all that. I discovered here, that's

> because of conversion to estrogen.

>

> I asked him to test. I'm outside the reference range. 56 on a scale

> to 53. I've lost all energy, focus, libido and the rest that T

> initially brought back.

>

> I bring him an article on Arimidex. He doesn't even want to talk

> about estrogen. tells me my T levels are plenty high. Sort of tries

> to convince me that maybe this is as good as it gets or my problems

> lie elsewhere.

>

> He says he can't prescribe Arimidex. Says you expect to take this for

> the rest of your life? he doesn't understand that without addressing

> the E, I've really got no life.

>

> I'm just marveling how an endocrinologist can not understand even

> rudimentally how profoundly mood and drive and ambition are affected

> by T and E levels.

>

> I put up a fuss and got a short prescription essentially under

> protest.

>

> Anyone know a good hypogonadism Doc in Seattle-Tacoma area? He's ready

> for me to go and I'm ready to leave. There's got to be good T docs in

> this area with the UW here, Fred Hutchinson and the rest.

>

> ANybody got some good names?

March 31, 2004

On Wed, 31 Mar 2004 18:22:55 -0000, you wrote:

>

>Hi,

>

>These are WA doctors of all sorts that have purchased pellets from a

>pellet source that supplied the numbers.

You're my new hero!!

Thanks.

March 31, 2004

walla walla?

Nice name...

> > I just came back from the endo.

> >

> > ARRRRGGGG. I 've been taking androgel for a few months and

getting

> > breast development, soreness and all that. I discovered here,

that's

> > because of conversion to estrogen.

> >

> > I asked him to test. I'm outside the reference range. 56 on a

scale

> > to 53. I've lost all energy, focus, libido and the rest that T

> > initially brought back.

> >

> > I bring him an article on Arimidex. He doesn't even want to talk

> > about estrogen. tells me my T levels are plenty high. Sort of

tries

> > to convince me that maybe this is as good as it gets or my

problems

> > lie elsewhere.

> >

> > He says he can't prescribe Arimidex. Says you expect to take

this for

> > the rest of your life? he doesn't understand that without

addressing

> > the E, I've really got no life.

> >

> > I'm just marveling how an endocrinologist can not understand even

> > rudimentally how profoundly mood and drive and ambition are

affected

> > by T and E levels.

> >

> > I put up a fuss and got a short prescription essentially under

> > protest.

> >

> > Anyone know a good hypogonadism Doc in Seattle-Tacoma area? He's

ready

> > for me to go and I'm ready to leave. There's got to be good T

docs in

> > this area with the UW here, Fred Hutchinson and the rest.

> >

> > ANybody got some good names?

April 1, 2004

Hi

Her speech reception was in October but she had recent aided and unaided

audiograms. Her aided SRT obtained again by picture pointing in January were in

the 35 dB range. But again if you give her the picture and she hears only

parts of the word she is smart enough to point to the appropriate picture. I'm

talking about a soon to be 5 yo who reads and counts to 125.... So picture

pointing is easy for her even if she only gets part of the sounds.

I don't know about going higher up at JH I really don't want to make anybody

mad just concerned that maybe I should leave well enough alone? Or, should I

continue with the CI idea. I know she doesn't hear birds chirp, or me from

the other room unless I have on the FM and it is hard for her to hear

conversation aided with another person unless she is looking at the person or

very

close to them.... After reading about all the CI experiences I'm jealous that

she is not able to do these things yet grateful she does have the hearing that

she has.... I'm just not sure if I'm being selfish...

a

April 1, 2004

In a message dated 04/01/2004 1:56:17 PM Eastern Standard Time,

waynekraft@... writes:

> they show pictures of all the words and the child has to pick the

> picture that matches the word?

Hi Wayne

Yes, they have a chart of pictures in front of the child and the audi will

cover her mouth (or the child sets with their back to the audi) and the audi

will say toothbrush (this test is done in a soundbooth). The child in one room

and the audi in the other. I'm not sure what volume she has it set at or dB

level though. Good questions and I will ask tomorrow. Brittany is a willful

child and hard to test up until now and she is starting to act very mature

about testing. At least she did the last two times! But, this audi prefers I'm

not around when they test her so the teacher is taking her for the test and I

am meeting them there after they're finished to go over the results... I will

ask then..

Thanks

a

April 1, 2004

>

April 1, 2004

I am far, far, far from being an expert on this, but here's some

information that may be useful:

1. Hearing ability in some people does flucuate. I have good days and

I have bad days. Overall my hearing is degenerating. I was evaluated

in June, 2003 for a CI and, although my db loss was well within the

area where you would expect very little word recognition, I got close

to 100% and was told I was not a candidate. The word recognition

tests I took were either words from a recorded CD or words pronounced

by an audi in another room. Both were piped into me via an amp and

loudspeaker so that the db level of the speech was controlled. I was

tested in February, 2004 on a bad day and after what I perceived to

be a fairly dramatic interim degeneration in my hearing and my word

recognition was down to about 12%. Moral: keep checking back.

2. The audi at the implant center told me that when I took the test

in June, 2003 the implant center was amplifying the speech in their

tests to 60-70 db (I forget exactly). In the interim period they

made a policy decision to reduce that to 50-55db, which is closer to

the volume of normal speech. I was told that the reason for the

change was that they felt they might be eliminating candidates that

might actually qualify and benefit from the CI. Interestingly, my

own word recognition scores do not necessarily increase as the volume

of the speech increases. On one test I got 0% at 75db because the

volume distorted the sound. Moral: you might ask your evaluator

about the level of the speech sounds being used and if they are sure

they are using the correct level.

3. I don't know anything about the use of pictures with the word

recognition test. What's up with that? Any of my kids would, at 5

years old, have said " toothbrush " upon seeing a picture of one

without hearing the word at all. Do they actually do it that way or

do they show pictures of all the words and the child has to pick the

picture that matches the word? I think any reasonably bright kid

would pick out the tooth brush if they heard the low frequency " oo "

followed by " uh " unless there was another object with a similar sound

sequence. Personally, I have heard " baseball, hotdog, ice cream " so

many times I hardly need any audible cues to get those right. Last

time I just told the audi right off that it is " baseball, hotdog,

beer " not " ice cream. " You might check on the validity of this

picture deal, though as I said I am just a schmuck and don't know

anything about it.

Wayne Kraft

April 1, 2004

wayne'

congratulations on your surgery date! i hope it goes well for you. as you may

know already you may experince dizziness a few days or very tired or you may be

feeling pretty good after a couple of days. everyone has different reactions to

surgery . i was just there two and half weeks ago and waiting for hook up next

week.

good luck!

joni

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