Re: Breathing

[Guest guest]

Shirley, No I don't sleep with my mouth open but I have trouble breathing but

that is because I also have asthma. My husband says I snore sometimes! My

husband sleeps with his mouth open and he doesn't have PLS I do....Shirley

how long has your husband had PLS sorry but I have

forgotten.................Flora

[Guest guest]

Thank you Jo

[Guest guest]

Hello Flora,

He has had symptoms for almost 7 years now which I know is a long time for

ALS but I also know that this is not unheard of. He has now progressed to the

point that I cannot think of anything else that could not work. Speech,

swallow, legs, hands, arms, bladder, bowels, and now I am not so sure about

his breathing. Thanks for the information Flora. I snore also so maybe I

sleep with my mouth open not really sure is just something I have notice

about him in the last few months. Shirley

[Guest guest]

Hello Mike,

I want to thank you for being so honest as I told Flora I also snore so

maybe I have PLS and just don't know yet. Gosh I sure hope not as I have seen

what this monster has done to my husband in the last few years and I sure

don't like what I have seen. He is still in pain with this bladder. Seems the

Botox surgery did nothing for him. But he also thinks now that he may have an

infection. So pain for the bad surgery or pain from infection who knows will

have to wait to get him into the doctors to find out for sure. Was very sweet

of you to respond Mike and for this I thank you. Shirley

P. S. Mike please don't keep your mouth shut if some of you folks did that

this would be a very boring message board I would think so keep up the great

work.

[Guest guest]

Hi Shirley:

No, I don't think I have any of these breathing problems, at least no one

has drawn them to my attention.

Jo!

Breathing

> Hello Gang,

> It's me again. Just one quick question if I may. Do any of you have

> problems with your breathing? Like do you sleep with your mouths open?

Does

> anyone sit with there mouth open? Bonnie does Don do any of these things?

I

> guess that was more then one question. I am having a real hard time here

as I

> really think that my husband has ALS and not PLS but I cannot get anyone

to

> confirm it for me. So I guess we just wait and see. But I have noticed

that

> when he is sleeping that most times his mouth is open wide. And when he is

> just working on the computer it is also. Looks like a child that just has

a

> bad habit but not so sure why he is doing this. I am just wondering if any

of

> you have had this happen that you know of? You may have to ask your

sleeping

> partners some of you. But we won't get into that now. Thanks in advance

for

> anything you can tell me. Shirley (Michigan)

>

>

>

[Guest guest]

Shirley,

I sleep with my mouth open while I am on my back. At least that's what I

have been told. Snore rather loudly in that position, too. Several

people have told me that, some recently. (Just got out of the hospital,

remember?) And, yes, you will just have to wait and see. That is one of

the nasty things about this #@^$ & * disease. You have to have it at least

5 years without rapid progression to have a definite " no " for ALS. Even

if you progress rather rapidly, compared to other PLSers, you still may

only have PLS. A blessing from the left side, I guess. I have been told

the only test available that will currently and conclusively prove that

I have PLS is an autopsy. I guess I would just have to be dying to find

out what is wrong with me if I want to go that far. ;-) Until then, I'm

just going to be me - the me I am now - who hasn't changed that much,

but does have a much different perspective on life. Those of you who

have been around this group since 1999 when I joined have probably

figured that I certainly don't take life seriously. There isn't enough

time for that. I want to enjoy myself, even when I'm the joke. I have

learned to keep my mouth shut and be thought a fool and not open it and

remove all doubt, though. I just don't practice it enough.

Mike Gray

grammyflanagan@... wrote:

>Hello Gang,

> It's me again. Just one quick question if I may. Do any of you have

>problems with your breathing? Like do you sleep with your mouths open? Does

>anyone sit with there mouth open? Bonnie does Don do any of these things? I

>guess that was more then one question. I am having a real hard time here as I

>really think that my husband has ALS and not PLS but I cannot get anyone to

>confirm it for me. So I guess we just wait and see. But I have noticed that

>when he is sleeping that most times his mouth is open wide. And when he is

>just working on the computer it is also. Looks like a child that just has a

>bad habit but not so sure why he is doing this. I am just wondering if any of

>you have had this happen that you know of? You may have to ask your sleeping

>partners some of you. But we won't get into that now. Thanks in advance for

>anything you can tell me. Shirley (Michigan)

>

>

>

[Guest guest]

Hi Shirley,

Well I know I sleep with my mouth open, especially if I sleep on my back.

But I think I did that B4PLS. Don't have it open all day.

Jane D. in Gainesville

[Guest guest]

Thanks Donna,

Maybe it is maybe he is also thinking of women who knows lol. Maybe is why

he sleeps in his lift chair he has other women on the mind. But thanks for

the insight it was very helpful. Shirley

[Guest guest]

Shirley,

Maybe your husband has a nasal obstruction or a sinus condition. My sinuses

close up when I go to bed unless I turn towards the humidifier, then I can

breathe through my nose. I run a humidifier all through the winter because

the heat dries out the air so much. When I sit, I have more trouble talking

(the air doesn't flow as well) than when I'm standing. Since I'm not as

active physically, my body has shifted and I have too much in my middle, so I

guess it pushes things together making breathing a little harder.

Vivian

[Guest guest]

Hi Shirley:

I haven't had any of these breathing problems so far. Take care.

Jen L.

Breathing

> Hello Gang,

> It's me again. Just one quick question if I may. Do any of you have

> problems with your breathing? Like do you sleep with your mouths open?

Does

> anyone sit with there mouth open? Bonnie does Don do any of these things?

I

> guess that was more then one question. I am having a real hard time here

as I

> really think that my husband has ALS and not PLS but I cannot get anyone

to

> confirm it for me. So I guess we just wait and see. But I have noticed

that

> when he is sleeping that most times his mouth is open wide. And when he is

> just working on the computer it is also. Looks like a child that just has

a

> bad habit but not so sure why he is doing this. I am just wondering if any

of

> you have had this happen that you know of? You may have to ask your

sleeping

> partners some of you. But we won't get into that now. Thanks in advance

for

> anything you can tell me. Shirley (Michigan)

>

>

>

[Guest guest]

Hi Shirley, I don't sleep with my mouth open. I don't think I could

stand the dry feeling. I keep my mouth closed (when Im not busy

inserting my big foot). LOL However; my husband (who is completely

healthy) sleeps with his mouth open. Perhaps he is dreaming of

women. LOL In all seriousiness, I think it's a man thing.

Love,

Donna

> Hello Gang,

> It's me again. Just one quick question if I may. Do any of

you have

> problems with your breathing? Like do you sleep with your mouths

open? Does

> anyone sit with there mouth open? Bonnie does Don do any of these

things? I

> guess that was more then one question. I am having a real hard

time here as I

> really think that my husband has ALS and not PLS but I cannot get

anyone to

> confirm it for me. So I guess we just wait and see. But I have

noticed that

> when he is sleeping that most times his mouth is open wide. And

when he is

> just working on the computer it is also. Looks like a child that

just has a

> bad habit but not so sure why he is doing this. I am just

wondering if any of

> you have had this happen that you know of? You may have to ask

your sleeping

> partners some of you. But we won't get into that now. Thanks in

advance for

> anything you can tell me. Shirley (Michigan)

>

>

>

[Guest guest]

I've slept with my mouth open for as long as I can remember.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

Shirley,

I do sleep with my mouth open but not at any other time.

Jane Anne King

Breathing

Hello Gang,

It's me again. Just one quick question if I may. Do any of you have

problems with your breathing? Like do you sleep with your mouths open? Does

anyone sit with there mouth open? Bonnie does Don do any of these things? I

guess that was more then one question. I am having a real hard time here as I

really think that my husband has ALS and not PLS but I cannot get anyone to

confirm it for me. So I guess we just wait and see. But I have noticed that

when he is sleeping that most times his mouth is open wide. And when he is

just working on the computer it is also. Looks like a child that just has a

bad habit but not so sure why he is doing this. I am just wondering if any of

you have had this happen that you know of? You may have to ask your sleeping

partners some of you. But we won't get into that now. Thanks in advance for

anything you can tell me. Shirley (Michigan)

[Guest guest]

Thanks Sherry no I really have not we don't talk much. He has such a hard

time speaking. I don't want to bring undue stress to him if I don't have to.

Can you get into the MDA with PLS ? Thanks Shirley

[Guest guest]

Shirley,

Have you asked your husband if he is having problems breathing or and shortness

of Breath?? Also, Have you checked in with the nearest MDA clinic for an

appointment? They are great.. I just had an appointment this week and you will

not believe what they can do for you...

Sherry

Breathing

[Guest guest]

Shirley,

Have you asked your husband if he is having problems breathing or and shortness

of Breath?? Also, Have you checked in with the nearest MDA clinic for an

appointment? They are great.. I just had an appointment this week and you will

not believe what they can do for you...

Sherry

Breathing

[Guest guest]

-- Re: Breathing

Hi, shirley.

my husband dorian sleeps with his mouth open, he also has his mouth

open when he is watching tv, it is when he is deeply engrossed with the

movie. he is completly unaware off this, untill he starts to drool,than

he is aware he has napkins always beside him from because he chokes a

lot,he will dab his mouth shut it and with in a few minutes his mouth

is open again. we both just thought it was part off the disease

laura

> Hello Gang,

> It's me again. Just one quick question if I may. Do any of

you have

> problems with your breathing? Like do you sleep with your mouths

open? Does

> anyone sit with there mouth open? Bonnie does Don do any of these

things? I

> guess that was more then one question. I am having a real hard

time here as I

> really think that my husband has ALS and not PLS but I cannot get

anyone to

> confirm it for me. So I guess we just wait and see. But I have

noticed that

> when he is sleeping that most times his mouth is open wide. And

when he is

> just working on the computer it is also. Looks like a child that

just has a

> bad habit but not so sure why he is doing this. I am just

wondering if any of

> you have had this happen that you know of? You may have to ask

your sleeping

> partners some of you. But we won't get into that now. Thanks in

advance for

> anything you can tell me. Shirley (Michigan)

>

>

>

[Guest guest]

Shirley,

Look up on the web site where your nearest office is. http://als.mdausa.org/

THen call them and tell them where you are with this. They have their own

neurologist, MD, Physical Therapist, Occupational Therapist ,

Psychologist...and they will set up an appt. for the clinic. You will see them

all in one setting. They do a to tal exam..order what tests they feel is

necessary, order whatever equipment you might need. They are wonderful.

They will send you the necessary papers to fill out before hand to send.

They were really wonderful. You would not believe what they set up in one

visit for me compared to the clinic at Henry Ford.

Sherry

Re: Breathing

[Guest guest]

Shirley,

Look up on the web site where your nearest office is. http://als.mdausa.org/

THen call them and tell them where you are with this. They have their own

neurologist, MD, Physical Therapist, Occupational Therapist ,

Psychologist...and they will set up an appt. for the clinic. You will see them

all in one setting. They do a to tal exam..order what tests they feel is

necessary, order whatever equipment you might need. They are wonderful.

They will send you the necessary papers to fill out before hand to send.

They were really wonderful. You would not believe what they set up in one

visit for me compared to the clinic at Henry Ford.

Sherry

Re: Breathing

[Guest guest]

Hello Bonnie,

Thanks so much for the insight. Yes, sees Dr. Fink and every time I

ask him if he thinks that could have ALS he tells me that it does not

matter what you call it that it is progression of the illness. I have

requested that they do another EMG. But to no avail yet we are due to see him

again the first of next month and I will ask again. I thought that maybe the

reason for the delay was the fact that if he finds has ALS then he would

not longer be in his research group but this does not seem to be the case

with Don so I really just don't know what to think. All that you have said

sounds so much like that it scares me but till I know different I guess

we will stay with the PLS. will also get food on his mouth and not know

it is there. He also seems to be a little droopy on one side of his mouth

witch reminds me of a person who has had a stroke. They have talked so much

about doing some things for but he does not seem to want to give in to

this illness. They want to put in a feeding tube and he said no. They did

talk about the baclofan pump the last time we where in there but I asked

Joanie about it the other day and seemed nothing had been done about that.

The bladder surgery has not seemed to have made a difference in the spasms in

the bladder they if anything seem to have gotten worse. Just seems like this

is a losing battle that I am really tired of fighting. Seems like there are

so many questions and not any real answers from anyone. Thanks so much for

your responds. Seems and Don are much at the same place in this mess.

You take care of you as I so much have to do is so easy to forget ourselves

when you are caring for someone else who is so ill. I would love to meet with

you folks sometime. Let me know for sure when you will be out this way again

to see the doctor or whatever. I will see what we can work out I have

mentioned you and Don to my daughter and she to would like to meet you folks.

So keep us in mind and we can see what we can work out. Thanks again. Shirley

[Guest guest]

Hello Bonnie,

I am so sorry to hear about your foot. That is sure a fear of mine if

something happens to me then what? I need to have a hysterectomy but cannot

even think about having it done due to the fact I will have to be in bed for

2 weeks I have been told. I do still have my daughter here she is 15 I think

when school is done for the summer I can then have this taken care of. I

don't have anyone come in and help with but this is sure something I

will be looking into right away. He is getting very careless about his

personal care. How has Don been doing? I think of him often wonder what stage

he is at. I love to hear about your granddaughter aren't they just the best.

I have 4 grandkids. The oldest is a boy he is 5 then 2 girls 3 and 2 years

old and then the newest one he is just 6 months. They are the joy of my life

if not for them I sure don't know what I would do. Most times I have one here

all night. That also makes things hard as then I feel as if I have 2 babies

to care for and which ever grandchild is here. Take care and hope to

meet you soon. Shirley

[Guest guest]

HI SHIRLEY.

TO ANSWER YOUR QUESTION WHEN HE IS SITTING AND WATCHING TV HE OFTEN HAS HIS

MOUTH OPEN OR IF HE SLEEPS IN HIS RECLINER. WHEN HE IS IN BED HE SLEEPS WITH

HIS MOUTH SHUT. HE USES A NOSE MASK FOR HIS BI-PAP MACHINE WHEN HE DECIDES HE IS

GOING TO USE IT. SOME TIME HE SEEMS TO HAVE MORE PROBLEMS BREATHING THAN

OTHERS. SOMETIMES I HAVE PUT THE BIPAP ON HIM WHEN HE IS IN HIS CHAIR. I HAVE

NOTICED THAT HIS BOTTOM LIP HANGS MUCH MORE THAN IT USE TO. THE MUSCLES SEEM TO

BE GOING WITH THAT AND WHEN HE EATS HE GETS FOOD ALL OVER HIS MOUTH AND DOES NOT

KNOW IT. HE LOVES HIS CHOCOLATE JUST LIKE ME. SO I MAKE THINGS CHOCOLATE AND

WHEN HE EATS IT HIS FACE LOOKS LIKE A 2 YEAR OLD. HE LAUGHS ABOUT IT ESPECIALLY

IF WE COMPARE HIS AND ADELLE'S FACE TO SEE WHOSE IS WORST.

THE BABY WILL TAKE A WASH CLOTH, CLIMB ON HIS LAP AND CLEAN HIS FACE FOR HIM BUT

BOY SHE SCREAMS WHEN WE CLEAN HERS. WHEN DON EATS I NOTICE THAT HIS LIPS ROLL

IN. THAT IS WHY HE GETS SO DIRTY.

SHIRLEY DOESN'T JOHN SEE DR. FINK???? HE WAS THE ONE THAT CHANGED DON'S DX TO

ALS.

THEY RAN ANOTHER EMG AND THAT SHOWED THE CHANGES. HAVE YOU ASKED DR. FINK ABOUT

IT. HE IS SO EASY TO TALK TO AND HE CAN EXPLAIN MORE TO YOU. WHEN THE WEATHER

GETS NICE AND I GET MY CAR FIXED WE WILL HAVE TO GET TOGETHER. I'LL BRING ONE

OF THE KIDS ALONG TO HELP GET DON IN & OUT OF THE CAR.

HANG IN THERE GIRL, ONE DAY AT A TIME

LOVE

BONNIE

[Guest guest]

HI SHIRLEY.

TO ANSWER YOUR QUESTION WHEN HE IS SITTING AND WATCHING TV HE OFTEN HAS HIS

MOUTH OPEN OR IF HE SLEEPS IN HIS RECLINER. WHEN HE IS IN BED HE SLEEPS WITH

HIS MOUTH SHUT. HE USES A NOSE MASK FOR HIS BI-PAP MACHINE WHEN HE DECIDES HE IS

GOING TO USE IT. SOME TIME HE SEEMS TO HAVE MORE PROBLEMS BREATHING THAN

OTHERS. SOMETIMES I HAVE PUT THE BIPAP ON HIM WHEN HE IS IN HIS CHAIR. I HAVE

NOTICED THAT HIS BOTTOM LIP HANGS MUCH MORE THAN IT USE TO. THE MUSCLES SEEM TO

BE GOING WITH THAT AND WHEN HE EATS HE GETS FOOD ALL OVER HIS MOUTH AND DOES NOT

KNOW IT. HE LOVES HIS CHOCOLATE JUST LIKE ME. SO I MAKE THINGS CHOCOLATE AND

WHEN HE EATS IT HIS FACE LOOKS LIKE A 2 YEAR OLD. HE LAUGHS ABOUT IT ESPECIALLY

IF WE COMPARE HIS AND ADELLE'S FACE TO SEE WHOSE IS WORST.

THE BABY WILL TAKE A WASH CLOTH, CLIMB ON HIS LAP AND CLEAN HIS FACE FOR HIM BUT

BOY SHE SCREAMS WHEN WE CLEAN HERS. WHEN DON EATS I NOTICE THAT HIS LIPS ROLL

IN. THAT IS WHY HE GETS SO DIRTY.

SHIRLEY DOESN'T JOHN SEE DR. FINK???? HE WAS THE ONE THAT CHANGED DON'S DX TO

ALS.

THEY RAN ANOTHER EMG AND THAT SHOWED THE CHANGES. HAVE YOU ASKED DR. FINK ABOUT

IT. HE IS SO EASY TO TALK TO AND HE CAN EXPLAIN MORE TO YOU. WHEN THE WEATHER

GETS NICE AND I GET MY CAR FIXED WE WILL HAVE TO GET TOGETHER. I'LL BRING ONE

OF THE KIDS ALONG TO HELP GET DON IN & OUT OF THE CAR.

HANG IN THERE GIRL, ONE DAY AT A TIME

LOVE

BONNIE

[Guest guest]

HI AGAIN SHIRLEY,

WHAT A FAST RESPONSE.

DON IS NOT IN DR. FINKS STUDY. HE CAN NOT BE BECAUSE OF THE ALS DX. HE HAS

SENT US OTHER TEST GROUPS TO LOOK AT THAT ARE RELATED TO ALS.

I CAN'T GET ANYONE TO EVEN TALK ABOUT THE PUMP FOR DON. I DON'T HEAR ANYONE ON

THE ALS NETWORK SPEAK OF THE PUMP SO I DON'T KNOW IF THEY USE IT FOR ALS. MAYBE

WE SHOULD ASK.

YOU SHOULD SEE THE TWO OF US RIGHT NOW. I HAVE A FOOT THAT I SWORE I BROKE. IT

HURTS SO BAD THAT I HAD MY DAUGHTER TAKE ME TO THE ER YESTERDAY WHILD DON'S AID

WAS HERE. THEY TWISTED AND TURNED IT ALL OVER AND TORTURED ME AND THEN CAME UP

WITH THERE WAS NO FRACTURE OR DISLOCATION. THEY SEE ARTHRITIS AND A BONE SPUR.

THEY HAVE ME WRAPPED UP AND ON PAIN PILLS. I HAVE TO GO SEE OUR FAMILY DR. NEXT

WEEK AND THEY FIGURE HE WILL SEND ME TO A SPECIALIST. SO I HAVE BEEN OW OW OOO

OW ALL OVER THE PLACE AROUND HERE.I KEEP TAKING DON'T WALKER AWAY FORM HIM FOR

ME TO USE. IT HELPS.SO TODAY CINDI COMES TO HELP OUT AND THE BABY WANTS ON THE

OTHER SIDE OF MY CHAIR. GUESS HOW SHE GOT THERE? YEP RIGHT OVER THE TOP OF MY

FOOT. SURE COULDN'T TELL I HAD ANY PAIN PILLS IN ME THEN. CINDI GOES TO RE

WRAP IT AND ADELLE THINKS SHE HAS TO DO IT.THAT LITTLE GIRL HAS TO GROW UP TO BE

A DR. OR NURSE. AT 18 MOs ALL SHE THINKS ABOUT IS HELPING OTHERS. TO BAD SHE

GETS MORE IN THE WAY THAN HELP. LOL ;-0

WELL I'M GOING TO TAKE MY PILL AND HOBBLE INTO BED. WITH THE STORM GOING

THROUGH I DOUBT THAT THE AID WILL SHOW UP TOMORROW MORNING AN IF THAT IS THE

CASE DON IS GOING TO SPEND THE DAY IN BED. THERE IS NO WAY THAT I CAN DO HIM

ALONE. INFACT I CAN'T EVEN HELP RIGHT NOW.

HAVE A GOOD NIGHT AND STAY WARM. I HOPE THE ELECTRIC DOESN'T GO OUT TONIGHT

WITH ALL THE FREEZING RAIN.

LOVE

BONNIE