Re: Voice

[Guest guest]

>Hi All:

>

>I have a few questions directed those of you who have " severe voice

>loss " , not slurring. My questions are:

>

>1. What were the first signs that there was starting to be a problem?

Difficulty making myself understood, especially under stress.

>2. Did it feel like you had strained your throat?

No. I didn't have any indication whatsoever.

>3. Was it gradual, and if so how long did it take to get to the point

>where it was difficult for people to understand you?

It was gradual, I noticed it before other folks. Plus, with me, sometimes

it's better than other times. Sometimes folks say I sound pretty normal,

but one day I remember having great difficulty telling a salesman at a

store what I wanted. Finally, I had to point.

>4. How was it detected or tested by your doctor?

It wasn't. I had to tell the first doctor about it. By the time I got

around to my current doctor it was pretty obvious.

>5. How was it determined it was part of the progression of PLS.

The same way much of the rest of PLS is diagnosed -- exclusion. There

weren't any other factors that would point to my difficulty speaking, so

might as well blame it on PLS. Besides, it kinda fits the profile.

>I am starting to have this problem, in fact I will be calling my

>neurologist tomorrow to discuss this further with him.

>

>I have this problem, when I raise my voice, or cry or laugh. It use to

>go away, but no more. People are having difficulty hearing me, because

>of my inability to talk normal.

It's a bummer, and I don't know a good work around. Maybe I should change

my signature file to advertise an 800 number for those who can't speak...

>Rita

>

>Luv & Hugs!

>

>

>

>

>*************************************

>Some people succeed in spite of their handicap. Others succeed because

>of them.

>

>

>Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

>

>

>

>

>

>

[Guest guest]

>Hi All:

>

>I have a few questions directed those of you who have " severe voice

>loss " , not slurring. My questions are:

>

>1. What were the first signs that there was starting to be a problem?

Difficulty making myself understood, especially under stress.

>2. Did it feel like you had strained your throat?

No. I didn't have any indication whatsoever.

>3. Was it gradual, and if so how long did it take to get to the point

>where it was difficult for people to understand you?

It was gradual, I noticed it before other folks. Plus, with me, sometimes

it's better than other times. Sometimes folks say I sound pretty normal,

but one day I remember having great difficulty telling a salesman at a

store what I wanted. Finally, I had to point.

>4. How was it detected or tested by your doctor?

It wasn't. I had to tell the first doctor about it. By the time I got

around to my current doctor it was pretty obvious.

>5. How was it determined it was part of the progression of PLS.

The same way much of the rest of PLS is diagnosed -- exclusion. There

weren't any other factors that would point to my difficulty speaking, so

might as well blame it on PLS. Besides, it kinda fits the profile.

>I am starting to have this problem, in fact I will be calling my

>neurologist tomorrow to discuss this further with him.

>

>I have this problem, when I raise my voice, or cry or laugh. It use to

>go away, but no more. People are having difficulty hearing me, because

>of my inability to talk normal.

It's a bummer, and I don't know a good work around. Maybe I should change

my signature file to advertise an 800 number for those who can't speak...

>Rita

>

>Luv & Hugs!

>

>

>

>

>*************************************

>Some people succeed in spite of their handicap. Others succeed because

>of them.

>

>

>Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

>

>

>

>

>

>

[Guest guest]

Rita,

Speech was the first think that effected me(1986).That was the only problem I

had for 7 years.I was dxed. in 92.My neuro.did a simple test. With a tongue

depressor he pressed against my soft palat and found that it was not

functioning. If the soft palat doesn't move then your speech becomes

impaired. The first sign was hoarseness and straining to get words out. It

was rather gradual. Took about three years before people began to ask me to

repeat what I was saying. It is part of the progresson of PLS.I think your

neuro. will tell you that.

As you know I wear a prosthesis to correct my speech. The prosthesis has

allowed me to regain about 70% of my speech. People can at least understand

what I am saying. My speech pathologist told my about the prosthesis. It was

made at Uconn Med.ctr. Medicare paid for it,$2500. Let me know if you need

more info.

.

[Guest guest]

Rita,

Speech was the first think that effected me(1986).That was the only problem I

had for 7 years.I was dxed. in 92.My neuro.did a simple test. With a tongue

depressor he pressed against my soft palat and found that it was not

functioning. If the soft palat doesn't move then your speech becomes

impaired. The first sign was hoarseness and straining to get words out. It

was rather gradual. Took about three years before people began to ask me to

repeat what I was saying. It is part of the progresson of PLS.I think your

neuro. will tell you that.

As you know I wear a prosthesis to correct my speech. The prosthesis has

allowed me to regain about 70% of my speech. People can at least understand

what I am saying. My speech pathologist told my about the prosthesis. It was

made at Uconn Med.ctr. Medicare paid for it,$2500. Let me know if you need

more info.

.

[Guest guest]

Rita:

>1. What were the first signs that there was starting to be a problem?

I first noticed a problem at work when I was using the phone, I had a hard

time speaking loudly enough for people to hear me. Especially when I was

tired I also noticed the start of some slight slurring at times causing me

to repeat what I was saying.

>2. Did it feel like you had strained your throat?

Yes, it felt a bit like that, again especially when I was tired.

>3. Was it gradual, and if so how long did it take to get to the point

>where it was difficult for people to understand you?

>

For me it was quite gradual, I would say it took about a year before I

started having real problems on a regular basis with people understanding me

all the time.

>4. How was it detected or tested by your doctor?

It wasn't detected by any of my doctor's, it was a question all my

specialists had asked all along " do you ever have difficulty speaking " , so I

just knew it was finally happening.

>5. How was it determined it was part of the progression of PLS.

>

There was nothing else to attribute it to as I'd never had any difficulty

prior to being dx with PLS.

Hope all goes well at your doctor appt., take good care.

Jen

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[Guest guest]

Rita:

>1. What were the first signs that there was starting to be a problem?

I first noticed a problem at work when I was using the phone, I had a hard

time speaking loudly enough for people to hear me. Especially when I was

tired I also noticed the start of some slight slurring at times causing me

to repeat what I was saying.

>2. Did it feel like you had strained your throat?

Yes, it felt a bit like that, again especially when I was tired.

>3. Was it gradual, and if so how long did it take to get to the point

>where it was difficult for people to understand you?

>

For me it was quite gradual, I would say it took about a year before I

started having real problems on a regular basis with people understanding me

all the time.

>4. How was it detected or tested by your doctor?

It wasn't detected by any of my doctor's, it was a question all my

specialists had asked all along " do you ever have difficulty speaking " , so I

just knew it was finally happening.

>5. How was it determined it was part of the progression of PLS.

>

There was nothing else to attribute it to as I'd never had any difficulty

prior to being dx with PLS.

Hope all goes well at your doctor appt., take good care.

Jen

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Galen:

I don't remember you having a severe speech problem when we met in VT.

I will rest my throat and voice till we meet next weekend. Thanks for

you input.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

Galen:

I don't remember you having a severe speech problem when we met in VT.

I will rest my throat and voice till we meet next weekend. Thanks for

you input.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

>Galen:

>

>I don't remember you having a severe speech problem when we met in VT.

>I will rest my throat and voice till we meet next weekend. Thanks for

>you input.

Yeah, and it's only been what, two years? Like I say sometimes it's worse

than other times. Stress plays a big factor too. I'm much more likely to

speak better with other PLS folks than just your average joe. I'm at my

best when stopped by the police while driving. Most of the time I can't

talk very well (talk about a stressful situation) and I sure can't walk a

straight line. I never have a glass of wine or even a single beer if there

is any chance I'll be driving anytime soon. I figure I better be able to

blow a 0.0 or something...

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

Illiterate? Write for free help

[Guest guest]

>Galen:

>

>I don't remember you having a severe speech problem when we met in VT.

>I will rest my throat and voice till we meet next weekend. Thanks for

>you input.

Yeah, and it's only been what, two years? Like I say sometimes it's worse

than other times. Stress plays a big factor too. I'm much more likely to

speak better with other PLS folks than just your average joe. I'm at my

best when stopped by the police while driving. Most of the time I can't

talk very well (talk about a stressful situation) and I sure can't walk a

straight line. I never have a glass of wine or even a single beer if there

is any chance I'll be driving anytime soon. I figure I better be able to

blow a 0.0 or something...

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

Illiterate? Write for free help

[Guest guest]

:

Would you be able to provide me with more information on the prothesis you

wear to help your speech? Thanks.

Jen

>From: C828@...

>Reply-To: PLS-FRIENDS

>To: PLS-FRIENDS

>Subject: Re: Voice

>Date: Thu, 13 Jun 2002 23:52:09 EDT

>

>Rita,

>Speech was the first think that effected me(1986).That was the only problem

>I

>had for 7 years.I was dxed. in 92.My neuro.did a simple test. With a tongue

>depressor he pressed against my soft palat and found that it was not

>functioning. If the soft palat doesn't move then your speech becomes

>impaired. The first sign was hoarseness and straining to get words out. It

>was rather gradual. Took about three years before people began to ask me to

>repeat what I was saying. It is part of the progresson of PLS.I think your

>neuro. will tell you that.

> As you know I wear a prosthesis to correct my speech. The prosthesis has

>allowed me to regain about 70% of my speech. People can at least understand

>what I am saying. My speech pathologist told my about the prosthesis. It

>was

>made at Uconn Med.ctr. Medicare paid for it,$2500. Let me know if you need

>more info.

>.

>

>

>

[Guest guest]

Hi Rita,

While I no longer have " severe voice loss " I did experience two occasions that I

did. The first was when I had a bad case of the flu and took an anti-viral.

The second (as most of you are probably sick of hearing about but I repeat it

for the newcomers) was when I took Interferon for a liver condition. My speech

worsened rapidly, over a two week period, to where I had no volume and every

syllable was like I was trying to push the sound out. That coupled with my

inability to enunciate made my speech impossible to understand. It lasted for 6

months and only improved once I got my baclofen pump installed. I still have

spells that my speech is horrible, but mainly when I'm tired or have been

speaking too much or trying to speak over other noises (like in a crowded

restaurant). During those times my throat gets very hoarse and I have to clear

my throat quite often. Eventually I lose my voice completely. A good rest

almost always puts me back to fairly normal but some days I wake up with bad

speech. Some days I wake up with great speech but it worsens as the day goes

on. Kind of like my walking. I never know what the day will be like. hope

this is just a bad spell for you and it will soon be gone....and stay gone.

My neuro said I had a lazy tongue.

From: ritadfromhollis@...

To: PLS-FRIENDS

Sent: Thursday, June 13, 2002 4:09 PM

Subject: Voice

Hi All:

I have a few questions directed those of you who have " severe voice

loss " , not slurring. My questions are:

1. What were the first signs that there was starting to be a problem?

2. Did it feel like you had strained your throat?

3. Was it gradual, and if so how long did it take to get to the point

where it was difficult for people to understand you?

4. How was it detected or tested by your doctor?

5. How was it determined it was part of the progression of PLS.

I am starting to have this problem, in fact I will be calling my

neurologist tomorrow to discuss this further with him.

I have this problem, when I raise my voice, or cry or laugh. It use to

go away, but no more. People are having difficulty hearing me, because

of my inability to talk normal.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

Vaugh,wtah further info.would you like?

.

[Guest guest]

:

Ditto on the speech prosthesis info.

Vaughn

Re: Voice

> >Date: Thu, 13 Jun 2002 23:52:09 EDT

> >

> >Rita,

> >Speech was the first think that effected me(1986).That was the only

problem

> >I

> >had for 7 years.I was dxed. in 92.My neuro.did a simple test. With a

tongue

> >depressor he pressed against my soft palat and found that it was not

> >functioning. If the soft palat doesn't move then your speech becomes

> >impaired. The first sign was hoarseness and straining to get words out.

It

> >was rather gradual. Took about three years before people began to ask me

to

> >repeat what I was saying. It is part of the progresson of PLS.I think

your

> >neuro. will tell you that.

> > As you know I wear a prosthesis to correct my speech. The prosthesis

has

> >allowed me to regain about 70% of my speech. People can at least

understand

> >what I am saying. My speech pathologist told my about the prosthesis. It

> >was

> >made at Uconn Med.ctr. Medicare paid for it,$2500. Let me know if you

need

> >more info.

> >.

[Guest guest]

:

If you could describe what it looks like and how it works. I've never heard

of such a device other than the one people use who have had their larynx

removed.

Vaughn

> Vaugh,wtah further info.would you like?

> .

[Guest guest]

Hi:

Thanks for all your input relative to your voice problems. Today I am

sounding pretty good for the first time in a while. If I think about

it, I have been under a great deal of stress since March, with not much

let up. Along with the stress a lot of crying, which strains the

throat, a lot of talking, So I have decided to cool it, and only talk

when necessary ( is thrilled) LOL!!

I got to save my voice for next week when Galen pays us his visit. I am

saving your letters and will bring them to my urologist when I feel it

necessary. Thanks again!

Have a good weekend! And a special " HAPPY FATHERS DAY " to all you dads

out there.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

OH my goodness, I mean neurologist, not urologist! As if he would be

looking down my throat LOL! Sorry for the goof.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

hI Vaughn & Jen

The palatal lift is very similar to an upper partial plate the only

difference is that it has,what looks like a beaver tail at the back end of

it,this tail presses against the soft palat which allows your speech to be

more autable.

Fitting must be perfect or your not able to wear it for long periods of

time. What they do first is give you a gag test if you are able to get

through the gag test then they proceed with the fitting. It took about 3

months to get mine to the point were it fit perfect.

This procedure was done at the U. of Connecticut,School of Dental

Medicine,Dept. of Prosthodontics. I wear mine all day with no problem,take it

out at bed time. I never leave home without it! As I said in my response to

Rita,I've regained about 70% of my speech. Cost about $2500.00,which Medicare

paid for. Let me know if you or Jen need anymore info.

.

p.s. I've wearing it since 1995

[Guest guest]

Rita,

You are saving our letters and will bring to my urologist when I feel it

necessary. I think there's a hint here about why you're having speech

problems. What do you speak with?

Mike

At 11:37 PM 6/14/02 -0400, you wrote:

>Hi:

>

>Thanks for all your input relative to your voice problems. Today I am

>sounding pretty good for the first time in a while. If I think about

>it, I have been under a great deal of stress since March, with not much

>let up. Along with the stress a lot of crying, which strains the

>throat, a lot of talking, So I have decided to cool it, and only talk

>when necessary ( is thrilled) LOL!!

>I got to save my voice for next week when Galen pays us his visit. I am

>saving your letters and will bring them to my urologist when I feel it

>necessary. Thanks again!

>

>Have a good weekend! And a special " HAPPY FATHERS DAY " to all you dads

>out there.

>

>Rita

>

>Luv & Hugs!

>

>

>

>

>*************************************

>Some people succeed in spite of their handicap. Others succeed because

>of them.

>

>

>Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

>

>

>

[Guest guest]

,

Thanks very much for the info on the palatal lift. One of my problems is my

palate doesn't move. For instance, I can't whistle any more and it's

difficult for me to blow out candles due to air leakage through my nose.

Consequently my speech is very nasal at times, making it difficult for me to

enunciate clearly. I used to have quite a repertory of " hare lip " jokes.

They don't seem to be as funny as I thought they were. The jokes are still

funny without the " mimicking " voice.

I believe it's worth checking out. Thanks again.

Vaughn

Pain is inevitable. Misery is optional.

[Guest guest]

Mike:

II have many different ways to communicate with out to much difficulty.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

Vaughn,those were the same exact problems that I had,I believe you are a

candidate for the palatal lift. I can now blowup a bloon,blow out

candles,etc. Good luck.

.

[Guest guest]

Jen,If the problem is the palat and,not the tongue I think you will be a

candidate. Good luck.

.

[Guest guest]

Jen,If the problem is the palat and,not the tongue I think you will be a

candidate. Good luck.

.

[Guest guest]

:

Thanks for sending the info. on the palatial lift. It sounds like it's done

wonders for your speech, I'm checking with my speech therapist on whether it

could possibly help me. Thanks again.

Jen

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