RE: Is It Deteriorating Intellect or a Processing Problem?

May 18, 2001

What was the question ?? (giggles)

But seriously, I have some short term memory loss too.......

..............now where was I............?

Adam ajmurdey@...http://www.chariot.net.au/~ajmurdey

Is It Deteriorating Intellect or a Processing Problem?

My experience is that my short term memory is definitely not what it once was. In a speech reading lesson recently, I told the teacher how there seemed to be a delay, sometimes, between what she said and my comprehension. She had a phrase for it which partially escapes me now (short term memory : - ) there we go!) - something like "auditory processing" - the 2nd word is correct - not sure about the first. I had my acoustic removal when I was 57 and now I'm 62. So I don't know if age is part of this too - though overall, even with the NF2, I feel younger than my age..... Barbara B.

May 22, 2001

I say this without trying to sound arrogant. I have seen nothing but extremely

high intellilect in this group of 2er's. I have read NF1 has learning

disabilities asa possible symptom but have never seen it 1xt hand.

> Wrote:

>

> > While I'm on this subject, does anyone

> else know anything about " deteriorating intellect of

> those with NF2? " I read that this is the case, but I

> would certainly say that such a diagnosis is off the

> mark with this group! This particular " sign " really

> bothers me because it's not uncommon for doctors

> to treat the deaf as if they are low in IQ Sigh.

>

> Donna Responds:

> , I think you have hit on some of the issue here. Hearing loss

> causes confused responses sometimes because of misunderstanding questions or

> comments made by others. In addition, people who have facial paralysis

> and/or vocal cord involvement are sometimes more difficult to understand so

> rather than recognize that it is a speech problem, others-doctors

> included-sometimes think they're unintelligent.

> There is something that I have seen, though, that other (mostly hearing)

> people who socialize with NF2ers have mentioned as well. Some people with

> NF2 seem to develop what I call a processing problem after their brain

> surgery(ies). I have seen this in several people who I knew both before and

> after their surgery(ies). In some cases it comes and goes. In other cases

> it seems to be fairly constant. Two specific cases of friends with NF2 come

> quickly to mind. Both of these people knew sign language and used it well

> both signing and understanding sign language before surgery. After surgery

> their understanding of it was greatly reduced, no matter whether the signing

> was fast or slow. Often these folks will copy and repeat the signs to

> themselves now, and it helps them understand it. They still understand, but

> somewhere in their heads the processing is going haywire.

> There are also some folks who have more difficulty than they used to

> processing something that written to them. They have to read it more than

> once for it to " sink in " . These are people who are clearly as intelligent as

> they were before their surgeries, but somehow something in their brains seems

> to be misfiring from time to time.

> Maybe some of the Crew have recognized this in themselves or other friends

> with NF2. Have you? Let's not name names, but do you see this sometimes?

> I'm not talking about the basic communicating problems here, having trouble

> lip-reading or problems hearing someone if you're hard of hearing. I'm

> talking about not understanding something the first time around that is

> clearly signed or clearly written that you WOULD have understood before. If

> you have seen the problem in yourself, have you found a way to compensate for

> it or to retrain yourself and improve your comprehension again?

>

> ...Donna (not a doctor, but definitely interested in this subject since

> there are three NF2ers at my house)

>

May 22, 2001

I have not had AN surgery yet, but I have scents my mental capacity

diminishing. I was thinking it was because of my meds. I always thought I

was fairly sharp, especially with numbers, but now I have to check and

recheck everything. It's the same with having to read everything twice

now. Makes me wonder is it my NF2 or my meds?

Later,

JD in AZ

May 22, 2001

Hmm I seem to be contributing alot lately, too much time on my hands? (Maybe I

should get to work on that website instead of blathering no one listens to <g>)

Anyways..

I've noticed that sometimes I tend to skip words or switch mid thoughts more,

especially when I'm typing out messages. I haven't attributed this to the NF but

it does raise an interesting question.

To 's comment: My 3 brothers have what has been diagnosed as NF2 (but they

are still hearing) but 2 of the 3 are severely mentally disabled (for lack of a

better word, they are 17 and 18 and have the skills of an 5 or 6 year old) and

the 3rd brother is very slightly learning impaired. Because of their condition,

they haven't been put through as extensive testing either. They are afraid of

MRI's etc and there has really been no reason to turn them into human guinea

pigs.

Mia McCollin and NF Researchers in Sweden have been following my family for

about 15 years now trying to place if NF affected their mental skills or if it

was something else. They have told us we are a very rare case.

Pete

On Tue, May 22, 2001 at 04:51:31PM +0000, cinnyd@... wrote:

> I say this without trying to sound arrogant. I have seen nothing but extremely

> high intellilect in this group of 2er's. I have read NF1 has learning

> disabilities asa possible symptom but have never seen it 1xt hand.

>

> > Wrote:

> >

> > > While I'm on this subject, does anyone

> > else know anything about " deteriorating intellect of

> > those with NF2? " I read that this is the case, but I

> > would certainly say that such a diagnosis is off the

> > mark with this group! This particular " sign " really

> > bothers me because it's not uncommon for doctors

> > to treat the deaf as if they are low in IQ Sigh.

> >

> > Donna Responds:

> > , I think you have hit on some of the issue here. Hearing loss

> > causes confused responses sometimes because of misunderstanding questions or

> > comments made by others. In addition, people who have facial paralysis

> > and/or vocal cord involvement are sometimes more difficult to understand so

> > rather than recognize that it is a speech problem, others-doctors

> > included-sometimes think they're unintelligent.

> > There is something that I have seen, though, that other (mostly hearing)

> > people who socialize with NF2ers have mentioned as well. Some people with

> > NF2 seem to develop what I call a processing problem after their brain

> > surgery(ies). I have seen this in several people who I knew both before and

> > after their surgery(ies). In some cases it comes and goes. In other cases

> > it seems to be fairly constant. Two specific cases of friends with NF2 come

> > quickly to mind. Both of these people knew sign language and used it well

> > both signing and understanding sign language before surgery. After surgery

> > their understanding of it was greatly reduced, no matter whether the signing

> > was fast or slow. Often these folks will copy and repeat the signs to

> > themselves now, and it helps them understand it. They still understand, but

> > somewhere in their heads the processing is going haywire.

> > There are also some folks who have more difficulty than they used to

> > processing something that written to them. They have to read it more than

> > once for it to " sink in " . These are people who are clearly as intelligent

as

> > they were before their surgeries, but somehow something in their brains

seems

> > to be misfiring from time to time.

> > Maybe some of the Crew have recognized this in themselves or other

friends

> > with NF2. Have you? Let's not name names, but do you see this sometimes?

> > I'm not talking about the basic communicating problems here, having trouble

> > lip-reading or problems hearing someone if you're hard of hearing. I'm

> > talking about not understanding something the first time around that is

> > clearly signed or clearly written that you WOULD have understood before. If

> > you have seen the problem in yourself, have you found a way to compensate

for

> > it or to retrain yourself and improve your comprehension again?

> >

> > ...Donna (not a doctor, but definitely interested in this subject since

> > there are three NF2ers at my house)

> >

May 22, 2001

Dr. Dilys Parry told me that in her research on NF2 people, she had come to

the conclusion that people with NF2 IN GENERAL are above average

intelligence. Marie

Re: Is It Deteriorating Intellect or a Processing

Problem?

>I say this without trying to sound arrogant. I have seen nothing but

extremely

>high intellilect in this group of 2er's. I have read NF1 has learning

>disabilities asa possible symptom but have never seen it 1xt hand.

>

>> Wrote:

>>

>> > While I'm on this subject, does anyone

>> else know anything about " deteriorating intellect of

>> those with NF2? " I read that this is the case, but I

>> would certainly say that such a diagnosis is off the

>> mark with this group! This particular " sign " really

>> bothers me because it's not uncommon for doctors

>> to treat the deaf as if they are low in IQ Sigh.

>>

>> Donna Responds:

>> , I think you have hit on some of the issue here. Hearing loss

>> causes confused responses sometimes because of misunderstanding questions

or

>> comments made by others. In addition, people who have facial paralysis

>> and/or vocal cord involvement are sometimes more difficult to understand

so

>> rather than recognize that it is a speech problem, others-doctors

>> included-sometimes think they're unintelligent.

>> There is something that I have seen, though, that other (mostly

hearing)

>> people who socialize with NF2ers have mentioned as well. Some people

with

>> NF2 seem to develop what I call a processing problem after their brain

>> surgery(ies). I have seen this in several people who I knew both before

and

>> after their surgery(ies). In some cases it comes and goes. In other

cases

>> it seems to be fairly constant. Two specific cases of friends with NF2

come

>> quickly to mind. Both of these people knew sign language and used it

well

>> both signing and understanding sign language before surgery. After

surgery

>> their understanding of it was greatly reduced, no matter whether the

signing

>> was fast or slow. Often these folks will copy and repeat the signs to

>> themselves now, and it helps them understand it. They still understand,

but

>> somewhere in their heads the processing is going haywire.

>> There are also some folks who have more difficulty than they used to

>> processing something that written to them. They have to read it more

than

>> once for it to " sink in " . These are people who are clearly as

intelligent as

>> they were before their surgeries, but somehow something in their brains

seems

>> to be misfiring from time to time.

>> Maybe some of the Crew have recognized this in themselves or other

friends

>> with NF2. Have you? Let's not name names, but do you see this

sometimes?

>> I'm not talking about the basic communicating problems here, having

trouble

>> lip-reading or problems hearing someone if you're hard of hearing. I'm

>> talking about not understanding something the first time around that is

>> clearly signed or clearly written that you WOULD have understood before.

If

>> you have seen the problem in yourself, have you found a way to compensate

for

>> it or to retrain yourself and improve your comprehension again?

>>

>> ...Donna (not a doctor, but definitely interested in this subject

since

>> there are three NF2ers at my house)

>>

May 22, 2001

Wow Pete, your Mom has a lot to deal with! Does she have NF2 herself?

Marie

To: NF2_Crew <NF2_Crew >

Date: Tuesday, May 22, 2001 5:55 PM

Subject: Re: Is It Deteriorating Intellect or a Processing

Problem?

>Hmm I seem to be contributing alot lately, too much time on my hands?

(Maybe I should get to work on that website instead of blathering no one

listens to <g>)

>

>Anyways..

>

> I've noticed that sometimes I tend to skip words or switch mid thoughts

more, especially when I'm typing out messages. I haven't attributed this to

the NF but it does raise an interesting question.

>

> To 's comment: My 3 brothers have what has been diagnosed as NF2 (but

they are still hearing) but 2 of the 3 are severely mentally disabled (for

lack of a better word, they are 17 and 18 and have the skills of an 5 or 6

year old) and the 3rd brother is very slightly learning impaired. Because of

their condition, they haven't been put through as extensive testing either.

They are afraid of MRI's etc and there has really been no reason to turn

them into human guinea pigs.

> Mia McCollin and NF Researchers in Sweden have been following my family

for about 15 years now trying to place if NF affected their mental skills or

if it was something else. They have told us we are a very rare case.

>

>Pete

>

>On Tue, May 22, 2001 at 04:51:31PM +0000, cinnyd@... wrote:

>> I say this without trying to sound arrogant. I have seen nothing but

extremely

>> high intellilect in this group of 2er's. I have read NF1 has learning

>> disabilities asa possible symptom but have never seen it 1xt hand.

>>

>> > Wrote:

>> >

>> > > While I'm on this subject, does anyone

>> > else know anything about " deteriorating intellect of

>> > those with NF2? " I read that this is the case, but I

>> > would certainly say that such a diagnosis is off the

>> > mark with this group! This particular " sign " really

>> > bothers me because it's not uncommon for doctors

>> > to treat the deaf as if they are low in IQ Sigh.

>> >

>> > Donna Responds:

>> > , I think you have hit on some of the issue here. Hearing

loss

>> > causes confused responses sometimes because of misunderstanding

questions or

>> > comments made by others. In addition, people who have facial paralysis

>> > and/or vocal cord involvement are sometimes more difficult to

understand so

>> > rather than recognize that it is a speech problem, others-doctors

>> > included-sometimes think they're unintelligent.

>> > There is something that I have seen, though, that other (mostly

hearing)

>> > people who socialize with NF2ers have mentioned as well. Some people

with

>> > NF2 seem to develop what I call a processing problem after their brain

>> > surgery(ies). I have seen this in several people who I knew both

before and

>> > after their surgery(ies). In some cases it comes and goes. In other

cases

>> > it seems to be fairly constant. Two specific cases of friends with NF2

come

>> > quickly to mind. Both of these people knew sign language and used it

well

>> > both signing and understanding sign language before surgery. After

surgery

>> > their understanding of it was greatly reduced, no matter whether the

signing

>> > was fast or slow. Often these folks will copy and repeat the signs to

>> > themselves now, and it helps them understand it. They still understand,

but

>> > somewhere in their heads the processing is going haywire.

>> > There are also some folks who have more difficulty than they used to

>> > processing something that written to them. They have to read it more

than

>> > once for it to " sink in " . These are people who are clearly as

intelligent as

>> > they were before their surgeries, but somehow something in their brains

seems

>> > to be misfiring from time to time.

>> > Maybe some of the Crew have recognized this in themselves or other

friends

>> > with NF2. Have you? Let's not name names, but do you see this

sometimes?

>> > I'm not talking about the basic communicating problems here, having

trouble

>> > lip-reading or problems hearing someone if you're hard of hearing. I'm

>> > talking about not understanding something the first time around that is

>> > clearly signed or clearly written that you WOULD have understood

before. If

>> > you have seen the problem in yourself, have you found a way to

compensate for

>> > it or to retrain yourself and improve your comprehension again?

>> >

>> > ...Donna (not a doctor, but definitely interested in this subject

since

>> > there are three NF2ers at my house)

>> >

May 22, 2001

My goodness Pete....my prayers are with your family.

Carol

To 's comment: My 3 brothers have what has been diagnosed

as NF2 (but they are still hearing) but 2 of the 3 are severely mentally

disabled (for lack of a better word, they are 17 and 18 and have the skills

of an 5 or 6 year old) and the 3rd brother is very slightly learning impaired.

May 22, 2001

So glad someone had the nerve to ask this,my mother and I discuss this

often.But I would never say it to anyone else dont want them to think,well I

guess its embarrassing and depressing.But my mind doesnt not process well at

all I have to really consetrate on everything.

Carolyn

I have not had AN surgery yet, but I have scents my mental capacity

diminishing. I was thinking it was because of my meds. I always thought I

was fairly sharp, especially with numbers, but now I have to check and

recheck everything. It's the same with having to read everything twice

now. Makes me wonder is it my NF2 or my meds?

Later,

JD in AZ

May 23, 2001

I tend to think it must be the meds - the reason is becuase after my AN

surgery and my Mengianoma (sp?) surgery I attended the University and

graduated with honors. No meds here - so I tend to think it is that. :-)

hairball77@... wrote:

> I have not had AN surgery yet, but I have scents my mental capacity

> diminishing. I was thinking it was because of my meds. I always thought I

> was fairly sharp, especially with numbers, but now I have to check and

> recheck everything. It's the same with having to read everything twice

> now. Makes me wonder is it my NF2 or my meds?

> Later,

> JD in AZ

>

May 24, 2001

I think that is a sharp diagnosis; I think there's a loose wire in the auditory processing in my head! Marie

Is It Deteriorating Intellect or a Processing Problem? My experience is that my short term memory is definitely not what it once was. In a speech reading lesson recently, I told the teacher how there seemed to be a delay, sometimes, between what she said and my comprehension. She had a phrase for it which partially escapes me now (short term memory : - ) there we go!) - something like "auditory processing" - the 2nd word is correct - not sure about the first. I had my acoustic removal when I was 57 and now I'm 62. So I don't know if age is part of this too - though overall, even with the NF2, I feel younger than my age..... Barbara B.

May 24, 2001

I AGREE MARIE I FEEL THE SAME WAY SOMETHING SURE IS DIFFERENT IN MY HEAD

CATHERINE

Is It Deteriorating Intellect or a Processing Problem? My experience is that my short term memory is definitely not what it once was. In a speech reading lesson recently, I told the teacher how there seemed to be a delay, sometimes, between what she said and my comprehension. She had a phrase for it which partially escapes me now (short term memory : - ) there we go!) - something like " auditory processing " - the 2nd word is correct - not sure about the first. I had my acoustic removal when I was 57 and now I'm 62. So I don't know if age is part of this too - though overall, even with the NF2, I feel younger than my age..... Barbara B.

May 24, 2001

Barbara, Marie and : It definitely isn't deteriorating intellect! It was like night and day for me after surgeries started at age 45. I'm 56 now, so perhaps age has something to do with it, but definitely has to do with NF-related surgeries -- perhaps just in an older age group? It is frustrating when other people say the old "Oh, that happens to me anymore, too." And you know you weren't having these problems before surgery!

Charlotte

Is It Deteriorating Intellect or a Processing Problem? My experience is that my short term memory is definitely not what it once was. In a speech reading lesson recently, I told the teacher how there seemed to be a delay, sometimes, between what she said and my comprehension. She had a phrase for it which partially escapes me now (short term memory : - ) there we go!) - something like "auditory processing" - the 2nd word is correct - not sure about the first. I had my acoustic removal when I was 57 and now I'm 62. So I don't know if age is part of this too - though overall, even with the NF2, I feel younger than my age..... Barbara B.

May 24, 2001

Mom wrote: (Oh, to most of you)

----- Original Message -----

From: catherine

I AGREE WITH YOU ON THAT STATEMENT CHARLOTTE I MOST OF THE TIME THINK PEOPLE JUST SAY THAT EITHER TO M AKE US FEEL BETTER(THEY THINK) OR THEY DON'T KNOW WHAT ELSE TO SAY

(daughter # 4 responds):

As I posted before, I have experienced brain mumble jumble since surgery. My friends don't say it's age, yet. They just say " well, all that you have been through........" I'm sure stress plays apart. But not to this extent.

May 24, 2001

----- Original Message -----

From:

(daughter # 4 responds):

As I posted before, I have experienced brain mumble jumble since surgery.

____________________________________________________

Have any of you ladies considered it might just be "duh,I'm such a blond syndrome"?

SOTR ,Jimmy

May 24, 2001

I AGREE WITH YOU ON THAT STATEMENT CHARLOTTE I MOST OF THE TIME THINK PEOPLE JUST SAY THAT EITHER TO M AKE US FEEL BETTER(THEY THINK) OR THEY DON'T KNOW WHAT ELSE TO SAY.

BUT LIKE YOU I KNOW IT WASN'T THIS WAY BEFORE THE LAST SURGERY... AND YES SOME COULD BE DUE TO AGING I AM OLDER THAN YOU

IN JULY I WILL BE 64 BUT I DON'T THINK IT WOULD HAVE HAPPENED AS SUDDENLY IF NOT FOR NF AND THE SURGERY. SCARY TO THINK HOW MANY TIMES THE DOCTORS HAVE BEEN IN MY HEAD.

CATHERINE

-----Original Message-----From: fetter Sent: Thursday, May 24, 2001 11:38 AMTo: NF2_Crew Subject: Re: Is It Deteriorating Intellect or a Processing Problem?

Barbara, Marie and : It definitely isn't deteriorating intellect! It was like night and day for me after surgeries started at age 45. I'm 56 now, so perhaps age has something to do with it, but definitely has to do with NF-related surgeries -- perhaps just in an older age group? It is frustrating when other people say the old " Oh, that happens to me anymore, too. " And you know you weren't having these problems before surgery!

Charlotte

Is It Deteriorating Intellect or a Processing Problem? My experience is that my short term memory is definitely not what it once was. In a speech reading lesson recently, I told the teacher how there seemed to be a delay, sometimes, between what she said and my comprehension. She had a phrase for it which partially escapes me now (short term memory : - ) there we go!) - something like " auditory processing " - the 2nd word is correct - not sure about the first. I had my acoustic removal when I was 57 and now I'm 62. So I don't know if age is part of this too - though overall, even with the NF2, I feel younger than my age..... Barbara B.

May 24, 2001

In a message dated 5/24/01 5:17:31 PM Eastern Daylight Time,

HandsomeJimmy@... writes:

<< Have any of you ladies considered it might just be " duh,I'm such a

blond syndrome " ?

SOTR ,Jimmy

>>

Sorry, Jimmy. My heritage is from land, Ireland and Germany.... we do

grey hair. :0)))

Faith, Hope, & Love,

Anne

May 24, 2001

Jimmy: I'm not a blonde, but one of my daughters is, and I had gotten her a license plate holder for her car that said: There's no such thing as a dumb Blonde! The problem came in when we put it on her little fiero -- If you weren't eye-level to the plate, (and who lays in the road?), all you could see was the bottom part, which read: "a dumb Blonde!"