Louise

[Guest guest]

Meriere's disease. Thank you for explaining it for me. I used to get that

all the time the dizzy spells and falling over and that loud ringing noise

in the ear. I must say I haven't had that for months now. Actually ever

since I have been on the diet. Sherry

>From: " " <pfs1958@...>

>Reply-egroups

><egroups>

>Subject: RE: Re:louise

>Date: Tue, 11 Apr 2000 21:40:58 +1200

>

>Its a disease that affects the cochlea. The main symptoms are a fullness in

>the ear, tinnitus and dizzy spells. Some people fall over with it ! There

>is no known cause but many say allergies play a big part. Some of the

>causes listed are allergies, metal toxicity, poor blood quality, adrenal

>problems, TMJ, chronic fatigue, problems with pineal gland and so on. Makes

>it very hard to pin point what the problem is. If you want any more

>information let me know.

>

>Regards

>.

>

> Re:louise

> > >Date: Sun, 9 Apr 2000 09:44:29 -0400

> > >

> > >I love Idaho. That is such a gorgeous state. I am an old truck driver

> > >here. Anyway, Pittsburg is about 2 hrs from me.

> > >

> > >Corn, I read all the ingredients in the box of rye crisps and nothing

> > >sounded abnormal. but since i have seen the additive sight and the

> > >hidden names, there might be something I missed. I will have to check

>at

> > >the store for curiosity sakes. Pam.

> >

> >______________________________________________________

> >Get Your Private, Free Email at http://www.hotmail.com

> >

> >

> >------------------------------------------------------------------------

> >Get a NextCard Visa, in 30 seconds!

> >1. Fill in the brief application

> >2. Receive approval decision within 30 seconds

> >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

> >Apply NOW!

> >1/2646/5/_/473523/_/955333870/

> >------------------------------------------------------------------------

> >

> >

[Guest guest]

Hi Kim and Louise,

I'm assuming when you talk about hearing implants in

the ear you are talking about cochlear implants. I

asked Larry's dr. if he was a candidiate for this type

of hearing aide and was told no. Although all of

Larry's hearing bones were dissolved, his cochlea is

intact, therefore he is not a candidate for the

implants. Hope this info is helpful.

TMJ! A group I can belong to cause I actually have

it. Doesn't bother me too much at all. Have a very

mild case but when I get stressed it acts up and is

very painful. Amazingly enough, throughout all the

stress I've been through in last 3 months (about) its

only acted up once. Better not press my luck.

Michele

--- Kim <kiekeboe4you@...> wrote:

> Hello Louise,

> Welcome, sorry as you may have noticed I'm a

> little behind in

> messages.

> So you have been dealing with this darn problem

> since you were

> about 18, maybe all your life. They say that even

> babies are born

> with this, can you believe that? Brank spanking new

> baby, having to

> go through everything we go through.

> My doctor found the c-toma Nov/2000 after many

> recurrent ear

> infections, fever, dizziness, and migraines.

> Apparently it's been

> there for quite some time, just my other family

> doctor was to stupid

> to really realize anything was wrong. Everytime I

> would ask him for a

> referral to go see a ENT, he said it was nothing

> and all the

> disgusting, smelly discharge was normal also. I

> could really give

> him a kick in the behind right now.

> I went for my surgery Apr. 2nd/2001 & I can gladly

> say (so far)

> it's been a success. It started to get infected once

> so he prescribed

> ear plugs. But since then it's been good. I was a

> little worried

> awhile ago, I had a headache the lasted for about

> 5-7 days on and

> off, and a low grade fever, plus also pressure in

> the ear. So he

> rushed me in to take a look, but says everything is

> healing perfectly

> and I have the advantage of being young I guess.

> I have a very good ENT , I think the world of him.

> He has done a

> super job the whole time & keeps me thinking

> positively. I told him

> about this group and he also thinks it's a great

> idea. He told me he

> might even check it out but he probably forgot the

> address :-)

> Been all over the place for your surgeries huh?

> Wauw, I guess I was

> lucky first time around. Have you ever heard of Dr.

> Price- or

> Dr. Ballagh? They are two of the best in Canada I

> heard. Also very

> nice, straight and to the point.

> I have also had problems with my ears since I can

> remember. When I

> was 15 I had tubes put in my ears, my tonsils and

> adenoids out. The

> time that the tubes were in, things were okay but

> when they fell out,

> that's when all the programs began again & my doctor

> was constantly

> washing out my ears. Which I later found out is

> something that only

> triggers the c-toma more. " Water is your enemy "

> Re: Your question as trying to explain th is to a

> hearing impaired

> person. No I have a hard enough time just trying to

> explain it to my

> family and friends.

> I bet you were glad to find a support group for

> c-toma and I'm

> pretty sure this is the only one on . I

> searched and searched

> one night, couldn't find anything & that is why I

> decided to start

> the group.

> I'm also planning on starting another group called

> drum roll please

>

> TMJ:

> Temporomandibular joint disease - a painful

> condition affecting the

> area where the lower jaw connects to the sides of

> the skull which

> impairs function and sensation in the face and jaw,

> which may spread

> to the ears, neck, and shoulders.

>

> I found out I also had that when I was about

> 14-15. I was supposed

> to go for a pretty serious operation where they

> would've broken my

> top jaw & pulled it down, then waited 4-6 weeks,

> then break my bottom

> jaw and pull it out. Then I would have to wear

> braces for 2 years.

> Well needless to say after my mom, ran all over the

> place getting

> funding for this, I chickened out. The thoughts of

> the whole thing

> scared me away. I'm also pretty sure that having

> this has contributed

> to me having problems with my ears as well as

> headaches and so on.

>

> <snip>

> **Can anyone help with the hearing aid answers.

> BAHA hearing aid** doctor doesn't think I should

> get.Side affects to

> this type. I need no more infection and that is what

> one side affect

> is.Has anyone done any research on this yet.**

> <snip>

>

> To tell you the truth Louise, I've never heard

> about that. One of

> the side effects is that it causes infections. I

> wonder how that is

> possible. Have you heard of that hearing aid that is

> implantable in

> the ear ?

>

> Well sorry for the long post, but welcome again.

> Hope all is well with everyone :-)

>

> Kim

>

>

>

=====

Call 911, some sucker just stole our water!!!!!!

__________________________________________________

[Guest guest]

Louise thank you as always for being so kind to me and welcoming me back. I

have missed all of you so dearly. There was not a day that went by, when I

didn't miss this group. I hope that you are well and I know that we will be

talking soon. Hugs friend.

Love, Sue #2

-- Catching up/wishes/long sorry

Sue#2, It is good to hear from you again, we missed you. Glad you are

feeling better but praying for you feel your best!

, You will really like this group, so much help and knowledge,

welcome.

, how nice!! A house with such a big yard. I grew up in a very

small home, two bedrooms with four brothers and sisters. What I

remember most are loving memories of the wonderful yard, so big and

grassy, the fruit trees and a marvelous garden where we hid out in the

corn stalks and ate fresh green peas and carrots. Your kids will love

it. Congrats!!!

Tricia, you have had too much trouble with your feet and legs this

month, I wish I could give you some of MY Enbrel!! It made a lot of

difference for me. That horrible pain sure makes hash of your sleep

doesn't it? More prayers coming your way for sure!

, it has been a long time since we heard from you, sounds like

things are pilling up and like you do need a new doc. Where do you

live, for some reason I thought you were in Florida not washington, I

better break out of this fog, lol. My thoughts and prayers are always

with you and for your success on this job. Take care dear!

Patty, it was such good news to hear there is no blood clot, I hope you

are feeling much better now. If I won a jackpot somewhere, the first

thing I would do is open a free, reclusive bed and breakfast/retreat/spa

with caring, loving and healing folks to tend to us Stills folks and

friends. Wouldn't it be nice to check into for a nice healing week or

two once in a while? I really am in a dream world tonight aren't I,

LOL.

Tatjana and , while I am day dreaming, I would see to it that

you both had babies by July first next year!!

Well Brent I sure hope your doc was wrong about the total number of

cortisone shots to a joint! I started counting those to my knees in the

last five or six years and i just gave up. I think I need a knee

replacement now and I am just terrified to even make an appointment to

carry through with it. I just bought a wheel chair for the really bad

days, maybe that will give them a break.

Cat your sense of humor is showing and it is great to read, is there any

lucky chance you will be coming to the Vegas conference??

Lots of prayers and love to you all, Louise.

[Guest guest]

Hi, Louise. I noticed you said you had fewer problems with the injections of

MTX than with the pills. How soon did you start having problems with the

pills? I'm asking because I just started the pills over the weekend. MY

doctor said I may prefer the injections but she didn't want me to have to

come to her office 2 times a week.

Thanks,

P.s. Sorry if your message to Sue was personal. I hadn't seen it was

addressed to her when I started reading it.

[Guest guest]

Hi ,

I can not remember exactly how long after I started MTX pills that I had

trouble, it was fairly early on, but what I do remember is mostly

stomach cramps & pain and digestive upset. That all went away as soon

as I started the shots. BTW I only take one shot a week, 1cc, same day

each week. At first I took my medicine to the health department in this

small rural town where they gave me the shots for a very small fee, I

think just $2.

It got to be a hassle going out for the shots and since my doctor had

given me written instructions for self injecting I tried that. It was

amazingly easy and not much pain at all. The needle is only the size of

one used for insulin injections, smaller even than the one I use for

Enbrel! Most times I feel NO PAIN at all injecting, and once in a while

when I do feel a pinch, it is very minor. It was mostly a " head " thing

for me, getting ready and giving the shot. For a year before I started,

my husband had given himself two shots a day for diabetes and he was/is

really really afraid of needles. After a week or two when he started,

there were no problems at all for him either, although in the beginning

he would go all " hyperventally " as my mother used to say, LOL. Of

course I could not let myself be the coward in the family so I tried

very hard to be quick and easy and not " hyperventally " and it was easier

than one would expect!!

Good luck to all those who are doing it or trying it, the whole thing

will be a minor memory for you after a month or so, Louise.

zev@... wrote:

>

> Hi, Louise. I noticed you said you had fewer problems with the

> injections of

> MTX than with the pills. How soon did you start having problems with

> the

> pills? I'm asking because I just started the pills over the weekend.

> MY

> doctor said I may prefer the injections but she didn't want me to have

> to

> come to her office 2 times a week.

>

> Thanks,

>

> P.s. Sorry if your message to Sue was personal. I hadn't seen it was

> addressed to her when I started reading it.

>

>

[Guest guest]

Dearest Louise,

I just had to thank you friend, for that beautiful phone call. After

meeting you Louise, it was just wonderful to picture you in my mind with

that incredible " positive " love for life and beautiful spirit that you have.

You can make a room light up. I long to be more like you friend, honestly.

Thank you for your support and just being there for me. You are truly an

incredible woman, and thank you for blessing me with your friendship.

Love,Sue #2

-- Re: I am so sorry for letting you down

Sue I am so shocked, you could knock me over with a feather. For a

friend to do such a nasty thing to you and your parents. After meeting

you and your mother, there is no question in my mind that if this woman

had needed help you all would have given her everything you could. What

a terrible betrayal, Sue. I have to tell you what I have told others I

love about being hurt like this: " The worst thing would have been to

know that my child or relative had done something like that!! Put your

sweet arms around those precious boys of yours and tell them you love

them and you are glad they would not do such a thing!

Sue after meeting you I can guess at how hard this has been for you.

Please, please do as everyone is suggesting and take extra good care of

your self right now. You know of course that our prayers and thoughts

are with you, please call night or day if you need us! 1-435-789-6441

We love you, Louise.

"

[Guest guest]

HI, Louise! You sound very brave! I guess I could be brave too, huh? i

can't hurt more than labor! From what evryone is saying it sounds like I

really should think about switching to the injections. Thanks for the

advice. Did you start the shots yet?

[Guest guest]

HI, Louise! You sound very brave! I guess I could be brave too, huh? i

can't hurt more than labor! From what evryone is saying it sounds like I

really should think about switching to the injections. Thanks for the

advice. Did you start the shots yet?

[Guest guest]

Dearest Louise,

I love you dearly friend and I cannot wait to see that beautiful smile again

when I see you in Las Vegas. I need a hug from you desparately. You are

truly wonderful, and thank you for the message that you left on my answering

machine the other night. I am truly sorry that I was not home just to talk

to you. You melted my heart as always. I love you friend, and thank you

so much for letting me know how much you care.

Love.Sue #2

-- Re: hello friends/Connie Hart info

Sue, thank you so much for letting us know what is going on! Heidi and

Barb sent beautiful supportive messages that express how we all feel.

Please get into the doctor Sue as soon as you can. We are here for you,

praying for you and loving you! Call me if you would like to talk, I

would love to hear your voice, Louise.

Matera wrote:

> Dearest and true Stilligan friends,

>

> thank you, all of you for just asking about me. I am home from Vegas, but

> just made it through. I really had a hard time and I have been struggling

> since Wednesday. I have been riddled with pain and in bed. It seems

> since

> I have had the shingles since July, I have not been right and I seem to be

> caving. Falling into depression very badly. I have been in SEVERE pain

> and at this point would do something about it if I could. I swear, if I

> didn't have kids...I wouldn't be talking to you right now...and that is a

> lot coming from me. I usually try to remain so up-beat and positive,

> but at

> this point, I am at a low and falling, but plan to do something about

> it and

> call my rheumy tomorrow before I slump any further. I cannot do it

> anymore

> The pain in my legs is very severe and I have remained in bed for days

> and nights...complete insomnia, crying with pain and of course, with this

> comes depression, but none of us, not none of us, should suffer like

> this.

> It's just horrible and I get angry and frustrated...depressed and want to

> quit trying. Want to throw in the towel...but want to live for my

> precious

> two boys, my family, friends and loved ones here. I sincerely want

> to quit

> work. I cannot do it anymore, but cannot afford to keep my house and

> pay my

> bills if I quit. So what to do? I

[Guest guest]

In a message dated 8/28/2003 12:30:09 PM Pacific Daylight Time,

nucleus24@... writes:

> One thing to consider is the Neural Response Telemetry (NRT)

> that is exclusive to Nucleus implants. It allows the audiologist to map

> without Shy having to talk or help her out.

Hi Louise,

Congrats on Shy's upcoming implant! Just wanted to clarify something

said......the Nucleus device is NOT the only one with Neural Response

capability......the new Clarion CII 90K also has this enhanced capability and it

is

called NRI.....this is a very quick and non-invasive diagnostic tool that

audiologists can use to confirm that the hearing nerves are responding to

electrical stimulation. This may assist audiologists in programming infants or

young

children who otherwise provide little behavorial response. I have personally

been tested with NRI and it is awesome! : )

Deb H

Clarion CII surgery 6/18/02-hook up 7/18/02

HiRes,1/2003, Auria, 2/2003

Post lingual/Previous failed implant in 1985

BEA volunteer

[Guest guest]

Thanks Louise,

That conference sounds awesome all combined. H. & Carol K.are

wonderful speakers I've been fortunate to hear them and of course

have their books and handouts. They're materials that I've read have

taught me to understand when my son is acting out or just having

some bizarre behavior. Thanks to hearing Temple Grandin when she was

here with H. this was an added touch to the toilet issues of

understanding why he would not learn with every trials approached

until I heard her. My son now is toilet trained and doing great,

still needs to be told when to go or he'll retain his urine until

somebody tells him to go use the restroom or there would be a major

flood city. Excellent year. Knock on wood.

Are you aware sometime this month there is some type of a mini-

conference via Greenspan being held at the main library out there? I

know this would also be a good one, too. Then the main Greenspan

conference in Nov. but anything pertaining to behavior treatment is

always worth to hear.

I believe the ABA/VB therapy is helping my son tremendously these

days. Lately on communication notes from his teacher like today

which is a new brag my way. I'll just repeat what was written today.

" focused real well on his job/academic tasks. He gets so

focused in his work, once he gets started he doesn't want to stop " !

I can not believe what I just read! I've been waiting for this and

it has begun. could never focus, socialize, make eye contact

and always throws the " no " word, hit, kick, etc.

My mouth just dropped and my eyes popping and a big smile that he is

starting to focus. The Lovass method along with Carbone, Sundberg,

Greenspan floor method and the speakers mentioned above have done

its trick for my son on what I have learned and what is being

applied. Shock and happy!

On what you've mentioned on the not on the school mode but in

reality it helps me when you write about 's agency which you

confront, as this gives me ideas of what to look forward to when I

cross this bridge.

I was invited this week by the ARC for a tour to visit several

places but I do not think I'll be able to attend as I have a dental

appt. and sometimes I have to squeeze in the " me time " but you gave

me something to look forward to on what to observe.

Questions though. How did manage to communicate back when he

was younger? How is he communicating now? What other delays did he

have back when he was younger and what does enjoy? Do you see

therapy/treatment like the sensory activities would of helped

back when he was younger? Was he mainstreamed or was he in a self-

contained class? I have lots of questions, so sorry for asking my

mind spins on thinking all the time. One of those " inquiry mind

wants to know? "

Louise thanks for responding when you post as I had mentioned on the

past it gives me some comfort to know that I'm on the right track to

help my son for now and I know its not over but some relief and

still great to hear how well my son is progressing. This list has

been a Godsend, there are many on this list who are too valuable to

me with lots of knowledge. Tears are not daily anymore like back

when he was 12 y/o because that was too heartbreaking when I thought

I had failed my son especially due to the daily complains and

the " bad parent " label. When I heard those words, this gave me some

power to search for answers and I was not going to let anyone bring

me down.

A bigger and better brighter door has been opened in our lives.

Especially when our prayers have been answered. : )

Thanks for listening.

Irma,15,DS/ASD

[Guest guest]

In a message dated 9/20/2003 11:52:18 AM Eastern Daylight Time,

LOUANDY@... writes:

> I don't

> remember any of the parents back then talking about their child learning to

> read.

Hi Louise,

Teaching reading to children with intellectual disabilities is considered

still fairly new. Years ago it was thought that these children could not learn

to

do much. You are fortunate that was taught at all.

Charlyne

Mom to Zeb DS/OCD ?

[Guest guest]

In a message dated 9/23/2003 9:08:49 AM Eastern Daylight Time,

LOUANDY@... writes:

> It sure takes a lot of creative

> thinking to come up with ideas to work with these children. We are still

> doing it

> with at 41.

Hi Louise,

Tell me it gets easier as they get older. I bought candy apples at the fair

for the entire class. Zeb couldn't wait to get to school to hand them out. It

worked but we have many more days.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

In a message dated 9/23/2003 9:35:04 AM Eastern Daylight Time,

LOUANDY@... writes:

> Tomorrows his big day, his

> 41st birthday.

Happy Birthday . I hope he has a great day.

Charlyne & Zeb

[Guest guest]

In a message dated 9/23/2003 10:43:36 PM Pacific Standard Time,

charlyne1121@... writes:

> Tell me it gets easier as they get older.

Oh Charlyne I wish I could tell you that but we still have to constantly

advocate for what we think needs. Louise

[Guest guest]

Hi Louise,

Considering the issues you have with the group home would you bring back

to your home? Could he have services on a daily basis? I hear so many stories

about group homes that I have ruled that out for Zeb's future and have opted

to build him a separate apartment is he chooses.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

In a message dated 9/30/2003 12:09:18 PM Central Daylight Time,

charlyne1121@... writes:

> Considering the issues you have with the group home would you bring

> back

> to your home? Could he have services on a daily basis? I hear so many

> stories

> about group homes that I have ruled that out for Zeb's future and have opted

>

> to build him a separate apartment is he chooses.

> Charlyne

>

One thing with our kids was to, as the saying goes, to give them roots and

wings. We never seriously considered bringing back home. There have been

a few times in past years when he would pack his bag and have it at the door

and staff told us. We would bring him home that night and then he was happy to

go back. It was times when there were a number of staff changes and he

seemed to want the comfort and stability of being with us. If he lived here we

could take him to the workshop. For 10 years he lived in a house closer to us,

then the agency said they were selling the house, we tried to get another

agency to buy the house and program for the men. It was going well and then

9/11

came and no one wanted to do that. So he moved to a townhouse where he is now.

Some people in IL have Home Base Support, have their family member at home

and get funds that way. I respect each ones decision for what they think best

for them but for us we wanted to have settled in residence for our other

children's sake. Our two daughters will be 's guardians some day and they

are busy with their families. They take turns attending staffings. About a

year ago I attended a meeting where a woman began a program in an apartment

building for her daughter. If interested I could see if I can find the info on

it.

Since I am friends with staff at another agency I have asked them if they

would be willing to program for and they would be. But how can we take him

away from the people he has associated with in one way or another for 20 years?

Wow I just realized how long it has been. The agency he is with has always

been there to support us in the past so we will see how this goes. I may have

to go up higher in the agency to be heard.

Funding in Illinois is getting worse. Some agencies have had to close and

most are really hurting financially. Every year we are writing or lobbying our

representatives, senator and governor to not cut this funding. Funding for

the schools is pretty good but once the individual graduates to find a workshop,

residence or services is hard to come by. was on a waiting list for 10

years before he got settled in a residence.

We just keep working away at things as they come up. Charlyne as you can see

it is not a simple answer to such a complex but great question.

Louise

[Guest guest]

Hi ,

Sorry for getting back to you so late,

Thank you for explaining the mappings to me.. I was not aware of this

before..there is so much to learn about a CI

Louise

Louise

Hi Louise,

While most of your mapping will be done after the implant, and for a

couple months after, any time you feel your hearing has dropped, you can

go back for another mapping. Or tune up. I only go if I notice a change

in my hearing. I last went about 18 months ago because I was having

difficulty understanding young children's voice. The fact that I'm not

usually around them probably meant that I really didn't ever hear them

well, just didn't realize it. When I did start hanging around youngsters

again, I realized that I had to ask them to repeat. Their voices are

softer and much higher pitched, and that's what needed to be mapped in.

So, after you get mapped to where you hear most things well, then you

only need to go back if you feel you're missing things.

And presbycusis (old age hearing loss) doesn't happen to us, because

we can always get remapped and hear like new!!

You know that old wives tale that " hearing is the last thing to go " .

My answer is, " Not in MY case!! "

Nucleus Volunteer

Hello ,

Thank you for the explanation. I was not aware you still went for

programming though all the years of being a CI implantee.

I assumed you only went several times at the beginning..This was never

told to me before..

Louise

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Louise, Wonderful post...........you are wise and nice....Joanne

Jj Cathcart

jjcathcart@...

[Guest guest]

Hi Louise - you need to go to groups, and pull yourself off the list, the opposite of when you subscribed

Send an e-mail to -unsubscribe

I'm always anxious when people leave, and curious to know what we're doing wrong. Could you let me know? Thanks, See what's free at AOL.com.