Re: more questions

[Guest guest]

Hi Sara,

I am a totral deafie and still don't know total sign BUT I am alot

happier today. <----what's total sign?

Mark

______________________________________________________

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

[Guest guest]

Hi Josh,

Whew! You ask the tough questions. It's a little hard to remember what it

was like when I first became deaf (1983) when I was 19 years of age. One

story that will always stick in my mind is a few months after becoming

totally deaf, I was in the passenger seat of a car that my Aunt was driving.

She was moving her mouth and I assumed she was talking to me. Come to find

out, she was " yelling " at me assuming that I could hear her. Interesting

experience. She must have looked/sounded cute to drivers of passing cars!

It's been almost 20 years, now, that I've been deaf. No one in my family can

sign (neither the alphabet or basic signs). I have to try to read their

lips. It's very tiring! At least people in stores and some of the people in

my apartment building will write. My family doesn't. It's all lipreading.

Grrr!!!

I felt much more comfortable at Gallaudet when I was a student there and

worked there after graduation. My co-workers could sign, eventhough most of

them were hearing people. I was very happy there.

Right now, I'm trying to find a niche (my place) since moving back to my home

state. It's not easy. There arent many deaf people here. Or, if there

are...they're hiding! I belong to the state deaf association (though most of

the members have been deaf since birth) and the local alumni chapter for

Gallaudet. Still, I know there's more deaf people out there. I just have to

find them. )

As far as NF2 in Maine...I have not met another person from the whole state

that has NF2. I travel to Massachusetts for my checkups and followups. I

don't think that the doctors here even know what NF2 is!

I am very thankful to the ENT that I saw in 1983. He knew that there was

something wrong and sent me out of state to another doctor. He started the

ball rolling. When I moved back to Maine in 1996, I found that he was still

practicing and I continue to " go " to him for treatment. My surgeries for ANs

caused ear canal problems.

I see Dr. MacCollin at Mass General once a year for followup, I have an MRI

(spine and head) once a year, I have Eye Dr. appts several times a year, I

have an ENT appt several times a year, I use eye ointment every night at

bedtime, I use eye drops every waking hour. I have no other medication. And

I've probably forgotten something. So, if you have any more questions, fire

away!

I am totally deaf. I have bilateral acoustic neuromas (they're still in

there. The greater part was removed during my 7 (1 left, 6 right) surgeries

(the first 2 at Columbia Presbyterian in NYC, the rest were at Mass General

in MA and at town Hospital in WDC). But there's some still in there),

facial paralysis, problems with my eyes, tinnititus (sp), small body tumors

(more now than before), ear canal problems, balance problems, half of my

nose is " dead " , one of my eyes has an opacity and I'm legally blind in that

eye, my gums seem to be receding on one side. Yikes ) I never really

thought of all this stuff lumped together. Yikes

Hmm..did I answer any of your questions? I seem to have rambled quite a bit

(

June

ManelyCat@...

[Guest guest]

> HOW FAMILIES REACT TO ONE'S DEAFNESS?

Josh,

My family at first were as stunned as I was at my deafness. I was 21.

My mom was the only one that would write to me. Pete would a little. Finally

I lost it my nerves got really bad and I think I was close to a breakdown. I

havea dear friend Stan who started teaching us all sign way back when I was

15. We stopped cause I was sooooooooooo sure I would never go deaf. So I

forced the entire family in class. They wanted me to learn lip reading cause

it'd be easier for them but I made them see we were all in this together. We

all started but we have stopped. They know enough to talk lots more to me now

without a notepad. Pete my husband is really good and we are alot more

settled now.

See back when I was 14 1/2 my Dr said he refused to do any AN removals till I

fully knew sign. LOL!!!!! I still think that is funny cause rrrrungh never

happened. I am a totral deafie and still don't know total sign BUT I am alot

happier today. My family once again pulled out of the storm.

Sara

[Guest guest]

Hi Josh

Here are my answers to your latest questions.

When we finally found out it was Nf2 we were all in a state of shock, as it

was 7 years after my first operation and until then we had not been told of

the genetic implications.

I could never pick up lip reading, so life at home has become so strained

my wife and I now live as friends only, following almost divorcing. We now

communicate at home with a mixture of pen and paper, a little lip reading,

typing into my TTY phone so that I can read the screen, the girls make up

their own signs and that causes more anger because they know what they are

trying to indicate but I can't work it out as I have learned the proper

sign, so with those communication problems not a lot gets told to me.

Our daughter feels a lot of anger and frustration as she has developed

problems much earlier in life than me, our son actually phoned home after

being told and said on the phone " Thanks very much Dad, I have the same as

you "

So overall there is a great amount of depression in this house, with the

deafness being the main cause because of communication difficulties.

Anything further you would like to ask just come back.

As to you looking for a relationship, never give up, I have a friend who is

24 yrs old, and he has been chasing girls since I met him 4 yrs ago, he has

now got a young lady who is with him, she does not worry about Nf2 and his

deafness and is very positive about the treatment or cure to come in a few

years time.

All the best to you

[Guest guest]

, I am very sorry to read that this disease has been so hard on you and

the family. I often think that we should ask those trying to communicate

weith us to wear ear plugs for a week, of course this isn't the same, but I

think they would get the general idea. I'd like to say I understand but I am

still hearing on one side, with 15 % of my hearing left. The hearing aid of

course increases this. Clarity is getting worse and I hear very little

without the aid, BUT i do hear some, and I get so upset when I think so it

will be some day, I have the biggest knot inside my chest and I want to just

scream as loud as possible, which isn't loud because another tumor is

determined to take my voice among other things. I see the damage caused by

what I miss hearing now. Its too bad we are at the dependance of others to

join society. My family is very soft spoken and does not face me when

talking and insists on having a tv or stereo on. At christmas my sister said

we're doing the best we can. As if I could do better. They do not want to

know if they have NF2, not likely they hear great. They refuse to discuss it

in any way or call. I must call them if I wish to talk to them and I better

not have more than a few words to. There is no attempt at conversation. I

sit in a corner at family functions, like my grandmother used to do. I

watch. Not included. I don't think It hurts so much I'm questionning this

whole picture. But the young children try to talk to me, unfortunately their

voices I can't distingush or tell what they are saying, they try so hard and

do this on their own. Being part of this is why I return. We need more

awareness and I think its coming.......slowly

Hugs Sheryn

--- Original Message -----

To: <NF2_Crewonelist>

Sent: February 15, 2000 1:25 PM

Subject: Re: more questions

>

>

> Hi Josh

>

> Here are my answers to your latest questions.

>

> When we finally found out it was Nf2 we were all in a state of shock, as

it

> was 7 years after my first operation and until then we had not been told

of

> the genetic implications.

>

> I could never pick up lip reading, so life at home has become so strained

> my wife and I now live as friends only, following almost divorcing. We

now

> communicate at home with a mixture of pen and paper, a little lip

reading,

> typing into my TTY phone so that I can read the screen, the girls make up

> their own signs and that causes more anger because they know what they are

> trying to indicate but I can't work it out as I have learned the proper

> sign, so with those communication problems not a lot gets told to me.

>

> Our daughter feels a lot of anger and frustration as she has developed

> problems much earlier in life than me, our son actually phoned home after

> being told and said on the phone " Thanks very much Dad, I have the same

as

> you "

>

> So overall there is a great amount of depression in this house, with the

> deafness being the main cause because of communication difficulties.

>

> Anything further you would like to ask just come back.

>

> As to you looking for a relationship, never give up, I have a friend who

is

> 24 yrs old, and he has been chasing girls since I met him 4 yrs ago, he

has

> now got a young lady who is with him, she does not worry about Nf2 and

his

> deafness and is very positive about the treatment or cure to come in a few

> years time.

>

> All the best to you

>

>

> See what's happening for NF2Con 2000!

> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

[Guest guest]

Hey Josh, this is a 2-way street ... I'll answer your qustions if you send me a

copy of the finished paper. I just finished participating in a friend's

doctorate dissertation on young adults and their experiences with hearing loss.

I made her promise she'd get me a copy of the final product ... and with that

said, on with the show ....

Last stuff first ... I find it difficult to believe that NF2 is the leading

cause of late deafness in adults, could you tell me where you found this? (i'm

a skeptic at heart) I mean, I think of ALDA, and I'm sure that ALDA is not a

conglomerate of NF2bies.

As for other causes of deafness among adults ... my Shrink is HH, and going

deaf, slowly, and that was caused by meningitis. And I know another guy about

my age who lost his hearing due to meningitis. So, I think that would be a

major cause ... others? I'm not sure ... check in with ALDA. Sometimes

inner-ear infections can cause deafness. (Maybe meniere's disease too??)

How did you're family

> take your diagonisis. Were they helpful?

They were mostly more distraught than I was. But all of them were very helpful,

and supportive about deafness and NF2. Is you paper about deafness or diseases

that cause deafness? Anyway, my family's great. I know they are all having a

hard time dealing with things, but they are doing the best they can. None have

ever refused to write for me. The funny thing was, was that I had suspected

that my grandfather was illiterate because I had never received a letter from

him in his handwriting, or seen him write. When I visited this past Xmas, boy,

was I glad I didn't say anything about my suspiscions! Everyone wrote to me at

Xmas when necessary, and most usually made the usual vocal adjustments (speaking

louder, slower, and clearer)

I'm closest to my brother, and then my sister. My brother does the best he can,

and is willing to learn sign (he currently has neither the time, nor the money).

My sister knows basic fingerspelling, and that helps. They both have no

problems using relay, and are not afraid to call me that way. My sister hated

it at first, but now when I call her (long distance), I can't get her off the

bloody thing, even when I have to go (OK, I admit, I'm a scrooge, and it's the

bill I'm worried about =). My brother seems not overly fond of relay, and

spends as little time on the phone as necessary with me, but he knows it's good

for me.

I guess that's about the rest of it.

Take care, and remember to send me those references, and a copy of your paper

(MS Word, or wordperfect, or staroffice are fine). my email is

jchartra@...

> I want to add a section to my paper about how families react and how helpful

> they are to the deaf and hard of hearing person. So please send me your

> expierences, good or bad

[Guest guest]

Josh,

I was lucky because my employer hired a therapist to help me get back to

work. She visted me at my workplace and showed people how best to interact

with me. She did this with my family too. She was absolutely wonderful. So

everyone knows to be paient, speak slower than normal and face me directly.

In general, she was very accurate in what she said. In areas where she was

off a bit, we adjusted.

Since I am the only deaf person in the family, large gatherings are

sometimes a problem. I tend to find a person or a small group and go off on

our own. I don't get everything that went on at the gathering. That would be

impossible but I try to get something. In general, we have a good time and

catch up on a lot of things.

>

>

>Hi,

>I want to thank everyone who took the time to fill out my survey, I really

>appreciate it. I have a couple more questions though. How did you're family

>take your diagonisis. Were they helpful? For example, my sister refuses to

>repeat things more than once, and gets mad when I do not hear her the first

>time. My Dad, instead of repaeting something slow and clearly, raises the

>volume of his voice which does not help at all.

>I want to add a section to my paper about how families react and how helpful

>they are to the deaf and hard of hearing person. So please send me your

>expierences, good or bad

>Also, I would like to showcase another disorder which causes adult deafness,

>does anyone know one that does? In my search I have found many things that

>say NF2 is the leading cause, but what is number two? I have looked all over

>and can not find much.

> Thanks,

> Josh

[Guest guest]

Dear ,

My heart aches for you. Your family and you must understand you did not

choose to have NF. From reading your post, it sounds like you had no idea of

the NF until long after you had been married and had children. IT IS NOT

YOUR FAULT ! You did nothing to bring this on yourself or your family ! This

sounds simplistic but you need to believe it in your heart of hearts. I know

this is a hard time for you. There are many, many adjustments to NF2, its

complications, and being deaf.

I was diagnosed with NF 22 years ago. Back then nothing really was

known about it . I met my husband 2 years after the diagnosis. I was already

deaf in one ear and paralyzed on one side of my face. I told him as much as

I knew about the NF which wasn't much. We didn't know I would have at least

one more tumor on my other hearing nerve. We didn't know this is hereditary.

We had no idea of the complications. We've just had to face and deal with

everything as it happens.

I know the frustration of being late-deafened. I know the frustrations

of NF2 complications. You and evryone else in your family are hurting right

now. Because you are close to each other it is easier for you to lash out

and hurt each other. I believe there is often a thin line between anger and

hurt. I think hurt often expresses itself as anger. I think this is much

more true with people who have to deal with NF2. We can't hurt the NF2 like

it's hurting us so we hurt those closest to us. We can play the blame game

but it just makes for more hurt. Have you and your family given any thought

to talking with a counsellor or a minister or someone else who can help you

to deal with this ?

I don't have all the answers. All I know is you can live with NF.

Please, don't let NF defeat you. You are stronger than it is. You are bigger

than it it. I'm glad to see you on Crew. Knowledge is one of our greatest

weapons in dealing with NF2. Faith is anohter.

I will be praying for you and your family. If you have questions or

just want to vent, I'm here. Everyone on the NF2 Crew is here for you too.

We've been through much of what you are going through. God bless you.

K.

Re: more questions

>

>

>Hi Josh

>

>Here are my answers to your latest questions.

>

>When we finally found out it was Nf2 we were all in a state of shock, as

it

>was 7 years after my first operation and until then we had not been told of

>the genetic implications.

>

>I could never pick up lip reading, so life at home has become so strained

>my wife and I now live as friends only, following almost divorcing. We

now

>communicate at home with a mixture of pen and paper, a little lip reading,

>typing into my TTY phone so that I can read the screen, the girls make up

>their own signs and that causes more anger because they know what they are

>trying to indicate but I can't work it out as I have learned the proper

>sign, so with those communication problems not a lot gets told to me.

>

>Our daughter feels a lot of anger and frustration as she has developed

>problems much earlier in life than me, our son actually phoned home after

>being told and said on the phone " Thanks very much Dad, I have the same as

>you "

>

>So overall there is a great amount of depression in this house, with the

>deafness being the main cause because of communication difficulties.

>

>Anything further you would like to ask just come back.

>

>As to you looking for a relationship, never give up, I have a friend who

is

>24 yrs old, and he has been chasing girls since I met him 4 yrs ago, he

has

>now got a young lady who is with him, she does not worry about Nf2 and his

>deafness and is very positive about the treatment or cure to come in a few

>years time.

>

>All the best to you

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>