Re: My husband Charlie Gray

[Guest guest]

Hi, you may be right about me being so tense, but I have been trying real

hard not to act so nervous about not being able to understand him cause our

physical therapist told me that he was upset cause I was upset about his voice

so I

am trying not to even notice any difference in his talking - I just get

closer to hear what he is saying. Did your voice come back to you when you had

some time???? He also has an electric wheel chair and he scoots everywhere

toooooooooo which I am so happy he has one. He also has a " Super Pole " by his

bed

to pull up on to stretch his legs and also has rails in our hallway to walk

to stretch his legs and we have I know 3 walkers which the therapist makes him

use the heavy duty one to walk every visit she come which is 3 times a week.

The speech therapist is new and she is not worth a dime!!!! She has not

suggested anything that he and I can actually remember when she leaves, honestly

so

that is why I need to hear from Dr. Greer tomorrow. Thanks, June

[Guest guest]

June, I find that my voice is stressed when I am around people that I don't

know and some friends. I think I just get upset that I will not be understood

so it puts pressure on me to take special care in pronounce words clearly. I

would however take him to your doctor just to make sure it is not something

else. Does he slur his words or is it more like a strangled sound?

...........Flora /St. sburg, FL.

[Guest guest]

Hi this is June and yes he does slur his words some, but it is mainly such a

strain - if you don't mind try straining real hard and talking from your

stomach and saying some words and then you will know what I am talking about.

He

also smokes every day about 1 pack a day I think. He doesn't smoke them all

the way - just lites them and leaves them smoking etc....I hate that he smokes

too but we all have our habits...mine is sweets and a lot of things too, but he

has just gotten worse talking like this this week. He is doing it around all

his ole friends that he is not nervous with so I don't know. His Uliva in

the back of his throat is sooooo large - it is about the size of a vienna

sausage in the can. The throat dr. here in Tallahassee said it was one of the

largest he has seen, so we don't know what has enlarged that - it goes down his

throat so to speak. I know that would drive me crazzy, but he can swallow his

food and pills. I asked him tonite if he thought some of his medicine might be

making it larger, but we don't know. Thanks, june

[Guest guest]

My dear June,

Im responding to your post because I am very concerned about your

concernment for Charlie... I was at Gainsville 3 years ago and Dr. Greer

Dxed me after 2 more tests that added to the zillion I already had.

If it were me I'd talk to Dr Greer and then he may suggest a throat

spec. I saw a speech therapist and she helped me a lot'still using most

of the tips for eating, drinking and talking..

I am going to suggest something and I pray you will know it is heart

felt .. You being so concerned may be making him more tense than

usual.... and being tense shuts some of us PLSers down in several

different ways...I'm sure he senses your concern... when I get upset I

can't talk at all...otherwise I slur and even choke itout sometimes but

I make myself either heard or understood..

Please try to relax till you can get to a Dr. I feel so sorry for what

you are going through.

I have 3 sisters coming from up north next month for a 3 week visit...

i will need all your prayers at that time... i am already reacting from

the anticipation...2 of them I haven't seen for 5 years. we are in our

70's except the baby 65.... They are all active but I have my

elec.chair that can out run them so hopefully I can stay in a good

mental state to enjoy every day of their visit.

another Floridian,

Jeanette

from Tampa

[Guest guest]

Thanks for the e-mail. I am waiting for Dr. Greer to e-mail me back what to

do. June

[Guest guest]

That is a common symptom of PLS. While I can talk, I slur slightly and it

gets worse with fatigue. Yelling is out of the question and if I have to

try to talk louder my wife says it sounds like I'm really angry, but it's

the only way I can " shout " ...

I have gone to a PT that specializes in speech/swallowing. It was very

helpful.

dale

My husband Charlie Gray

> I would like to ask any of you that has PLS if ya'll have gone thru any

> problems talking or rather not being able to speak hardly. My husband for

the past

> week has been getting worse speaking or trying to talk loud enough for me

to

> hear him and he seems to be having spasms cause he is talking from his

abdomen

> instead of his throat. Does that make sense to any of ya'll. I am going

to

> try to get Dr. Greer in Gainesville (his Dr.) to tell me what he thinks or

I

> wonder if a Throat Specialist could help him to get him talking again from

his

> throat. Could it possibly be he has gotten use to talking and straining

from

> his stomach that now he does it from habit. I use to notice he would do

it

> when he would have visitors stop by to see him and he would be straining a

lot

> more when they are here visiting than before they stopped by and he would

be

> talking normal. Does it sound like he may have sorta wanted some

attention at

> that time from the visitors and maybe now he is use to talking with such

> strain that he can't help it now. I am so worried so please any of you

let me know

> if you have gone thru this and what do I do. Thanks, June

>

>

>

[Guest guest]

Hi June,

With me is that I get anxious to be understood, so my voice becomes strained.

What I do is relax and it helps a little. Hope this helps you.

God Bless

Yolanda

My husband Charlie Gray

I would like to ask any of you that has PLS if ya'll have gone thru any

problems talking or rather not being able to speak hardly. My husband for the

past

week has been getting worse speaking or trying to talk loud enough for me to

hear him and he seems to be having spasms cause he is talking from his abdomen

instead of his throat. Does that make sense to any of ya'll. I am going to

try to get Dr. Greer in Gainesville (his Dr.) to tell me what he thinks or I

wonder if a Throat Specialist could help him to get him talking again from his

throat. Could it possibly be he has gotten use to talking and straining from

his stomach that now he does it from habit. I use to notice he would do it

when he would have visitors stop by to see him and he would be straining a lot

more when they are here visiting than before they stopped by and he would be

talking normal. Does it sound like he may have sorta wanted some attention at

that time from the visitors and maybe now he is use to talking with such

strain that he can't help it now. I am so worried so please any of you let me

know

if you have gone thru this and what do I do. Thanks, June

[Guest guest]

Thank you, and you are soooooooo right about getting anxious, he gets worse

when he is anxious and I am trying really hard to keep that from happeninig but

if it does, I just don't say anything to him and let him calm down and smoke

his cigarettes and etc. I am so sorry about Dale's wife and I am so sorry

that he feels so badly. I know just how he feels, especially when my husband

falls in the bathroom and I am asleep and I jump up and I fall getting out of

bed

and we are both down on the floor and I think I have broken my leg and he is

hollering in the bathroom so we are in a mess so many times, but thank God I

crawled to the bathroom and was able to get up and know my leg was ok and got

him up also. June bug