Re: Ok, another swallowing question...

[Guest guest]

Lori,

I'm sorry this is happening. My swallowing has gotten weaker, and it

is VERY frustrating. I hope they figure out what's going on, and that

it can be treated.

On Dec 9, 2008, at 7:25 PM, Lori G wrote:

> For those of you who no longer have a functional swallow and had to

> get a feeding tube, how do you manage your oral saliva? My current

> problem is that the oral saliva goes down my trachea and not down my

> esophagus like it should and right into my left lung.

>

>

> Thank you for your patience with all my swallowing questions. I am

> sick of me and I don't blame you if you are growing tiresome with my

> questions. My swallow study is tomorrow and I hope to have a better

> understanding of what is going on.

>

> L

>

>

[Guest guest]

Thank you very much.  I let you all know how it goes. 

L

________________________________

From: Amy <blueyedaze@...>

Sent: Tuesday, December 9, 2008 6:56:10 PM

Subject: Re: Ok, another swallowing question...

Lori,

I'm sorry this is happening. My swallowing has gotten weaker, and it

is VERY frustrating. I hope they figure out what's going on, and that

it can be treated.

On Dec 9, 2008, at 7:25 PM, Lori G wrote:

> For those of you who no longer have a functional swallow and had to

> get a feeding tube, how do you manage your oral saliva? My current

> problem is that the oral saliva goes down my trachea and not down my

> esophagus like it should and right into my left lung.

>

>

> Thank you for your patience with all my swallowing questions. I am

> sick of me and I don't blame you if you are growing tiresome with my

> questions. My swallow study is tomorrow and I hope to have a better

> understanding of what is going on.

>

> L

>

>

[Guest guest]

Oh, Lori! Please don't think for a second that we are tired of your

questions--we love you! That's what we do here--ask for help and

supportive advice. For me, when I have excess " spit " I suction it out

(not in my throat but in the front of my mouth). I know you've

mentioned you can no longer suction independently. I still can when I'm

in my wheelchair but not in bed. I have to have the machine positioned

at an exact angle in order to turn it off/on. Some machine's buttons

are harder than others so I've gotten creative--let me know if you want

more detail. ~a

From: Lori G <lorig713@...>

Subject: Ok, another swallowing question...

" sma friends " < >

Date: Tuesday, December 9, 2008, 7:25 PM

For those of you who no longer have a functional swallow and had to

get a feeding tube, how do you manage your oral saliva? My current problem is

that the oral saliva goes down my trachea and not down my esophagus like it

should and right into my left lung.

 

 

Thank you for your patience with all my swallowing questions. I am sick of me

and I don't blame you if you are growing tiresome with my questions. My swallow

study is tomorrow and I hope to have a better understanding of what is going on.

 

L

[Guest guest]

I take Robinal so I have less saliva, but I still get oral suctioning

about every twenty minutes.

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500>

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of Lori G

Sent: Tuesday, December 09, 2008 4:25 PM

sma friends

Subject: Ok, another swallowing question...

For those of you who no longer have a functional swallow and had to get a

feeding tube, how do you manage your oral saliva? My current problem is that

the oral saliva goes down my trachea and not down my esophagus like it

should and right into my left lung.

Thank you for your patience with all my swallowing questions. I am sick of

me and I don't blame you if you are growing tiresome with my questions. My

swallow study is tomorrow and I hope to have a better understanding of what

is going on.

L

[Guest guest]

Lori don¹t be silly! We¹ve talked about WAY more boring things on this list

than swallowing! ;-) that¹s what we¹re here for girl!!

Love,

N

On 12/9/08 6:25 PM, " Lori G " <lorig713@...> wrote:

>

>

>

> For those of you who no longer have a functional swallow and had to get a

> feeding tube, how do you manage your oral saliva? My current problem is that

> the oral saliva goes down my trachea and not down my esophagus like it should

> and right into my left lung.

>  

>  

> Thank you for your patience with all my swallowing questions. I am sick of me

> and I don't blame you if you are growing tiresome with my questions. My

> swallow study is tomorrow and I hope to have a better understanding of what is

> going on.

>  

> L

>

>

[Guest guest]

We aren't sick of your questions, Lori. You are our friend, and we care about

you. And, we want to help. As for the challenges with swallowing saliva, we

all eventually get to that point. Aspiration and SMA go hand-in-hand. Since

I've been taking Zyrtec though, I have fewer secretions, so I suction less. My

doctor suggested Zyrtec because of it's drying effects and virtually no side

effects.

If, and when, you decide to get a feeding tube, let me know.

Take care!

Vicki

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. The NEW

AOL.com.(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom0\

0000019)

[Guest guest]

Vicki,

Thank you as well!  I am doing fairly well with my trusty Actifed (old

formula-still available here in the U.S.).  I think I built an immunity to the

side-effects but I may try Zyrtec at some point.

I had a peg tube/feedings (and was vented) for a couple of years after a serious

bout of pneumonia when I was 17 y/o.  If I am faced with that again, I guess

I'll make a decision at that point.  My quality of life was quite poor during

that time (bed bound, peg, vent, yada yada) so I may chose not to continue down

that road again.  My life is beyond anything I could have hoped for thanks to

the love and support of my dear so I have no regrets.

Thanks again to Vicki and my dear .

L

________________________________

From: " VickiLJurney@... " <VickiLJurney@...>

Sent: Wednesday, December 10, 2008 9:52:10 AM

Subject: Re: Ok, another swallowing question...

We aren't sick of your questions, Lori. You are our friend, and we care about

you. And, we want to help. As for the challenges with swallowing saliva, we

all eventually get to that point. Aspiration and SMA go hand-in-hand. Since

I've been taking Zyrtec though, I have fewer secretions, so I suction less. My

doctor suggested Zyrtec because of it's drying effects and virtually no side

effects.

If, and when, you decide to get a feeding tube, let me know.

Take care!

Vicki

************ **One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. The NEW

AOL.com.(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity &

ncid=emlcntaolco m00000019)

[Guest guest]

Yes, I tried Robinal and ended up in the E.R. (twice- second time I found out I

am allergic to the <temporary latex foley catheter> with urinary retention about

3 years ago.

Thank you for the feedback.

L

________________________________

From: <d-kemp@...>

Sent: Tuesday, December 9, 2008 10:54:12 PM

Subject: RE: Ok, another swallowing question...

I take Robinal so I have less saliva, but I still get oral suctioning

about every twenty minutes.

Kemp

Director, OurGV Rewards

<http://www.ourgvrew ards.com/> http://www.ourgvrew ards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kempsbcglobal (DOT) net

Email 2: dkempourgvrewards (DOT) com

<http://www.ourgvmal l.com/djk> banner021.jpg

<http://www.benefitb ar.com/benefitba r/subscribe/ toolbar.php? toolbarId= 1500>

000-toolbar- banner-1

From: @gro ups.com [mailto:@gro ups.com] On

Behalf Of Lori G

Sent: Tuesday, December 09, 2008 4:25 PM

sma friends

Subject: Ok, another swallowing question...

For those of you who no longer have a functional swallow and had to get a

feeding tube, how do you manage your oral saliva? My current problem is that

the oral saliva goes down my trachea and not down my esophagus like it

should and right into my left lung.

Thank you for your patience with all my swallowing questions. I am sick of

me and I don't blame you if you are growing tiresome with my questions. My

swallow study is tomorrow and I hope to have a better understanding of what

is going on.

L

[Guest guest]

Lori:

I must admit that I was probably the most reluctant peg tube candidate in the

world. The though of getting one totally freaked me out. Getting one, in my

mind, meant that a part of my life was over. I could not visualize myself with

another piece of equipment strapped to my chair pumping nutrition into me. It

seemed so unnatural.

Now as I look back, I wish that I had gotten my peg tube 10 years ago when

doctors first suggested it. If I had, I probably would not have gone into

pulmonary failure 4 years ago and be on I vent today. See, I only ate one meal a

day...dinner....like you. However now, since I've had my peg, I am unable to go

long periods without my vent, and I have regained some strength and stamina.

What is most exciting, though, is that my ability to function has stopped

declining!

Now, unlike most peg users, I refuse to use a pump. Instead, I prefer bolus

feedings...where I just pour the liquid into the tube. In takes me all of 5

minutes to eat! When I'm not eating, my peg hides beneath my shirt where no one

can see it. My diet consists of the following: Breakfast--one can Ensure,

probiotics, vitamins, potassium, and my meds; Lunch--4 scoops of ProSource (a

plant

based protein powder) dissolved in water and followed by 8 ounces of 100%

pure cranberry juice; and Dinner--my night time meds, 3 scoops of ProSource

mixed

with water, and one can of Ensure. I tried Tolorex, but I felt nauseous

constantly. It's nasty stuff. My calorie intake per day is about

900-1,000....depending on what I eat by mouth during the day. And, my protein

intake is about

60-70 grams. And I can still eat by mouth. It's a good thing too, because I love

beer and guacamole!

As for my quality of life, well Lori, you know me....I run Pet Pals AND have

another 20 hr./week job. Yes, I work 50-60 hrs./week outside of my home. Plus,

I travel, shop, go to movies & concerts, frequent Starbucks, train dogs, pay

my mortgage, get my van's oil changed, have terrific sex with .....you

know, live the life of an average 50 year old. Nothing has changed now that I

am " tubed & vented " , except that now I never get tired until bedtime.

I know that you will make the best decision for you, Lori, as you are a

highly intelligent and reasonable lady. Just remember this....we Texas women are

very strong, determined, and resilient. And, we take care of our own. So,

remember that I'm here if you ever need a kindred soul to whom to vent!

Take care,

Vicki

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. The NEW

AOL.com.(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom0\

0000019)

[Guest guest]

If I eat a starburst candy it helps get stuck pills down.

Swallowing issues are so agravating. Sometimes I have to get out of

my chair, roll on my left side and get a whack to free stuck food.

I don't choke thank gawd but having a bit of cheese omlette, a mc

nugget etc stuck in a corner of my throat {scoliosis} no matter how

much fluids I drink is a pain.

Don't forget there are some meds that make swallowing harder for us

on top of the sma causes.

Prozac type meds and bladder control ditropan are big culprits for

swallowing probs.

>

> > For those of you who no longer have a functional swallow and had

to

> > get a feeding tube, how do you manage your oral saliva? My

current

> > problem is that the oral saliva goes down my trachea and not down

my

> > esophagus like it should and right into my left lung.

> >

> >

> > Thank you for your patience with all my swallowing questions. I

am

> > sick of me and I don't blame you if you are growing tiresome with

my

> > questions. My swallow study is tomorrow and I hope to have a

better

> > understanding of what is going on.

> >

> > L

> >

> >

[Guest guest]

I know what you mean!

L

________________________________

From: Amy <charmedcripchic@...>

Sent: Thursday, December 11, 2008 6:50:56 PM

Subject: Re: Ok, another swallowing question...

If I eat a starburst candy it helps get stuck pills down.

Swallowing issues are so agravating. Sometimes I have to get out of

my chair, roll on my left side and get a whack to free stuck food.

I don't choke thank gawd but having a bit of cheese omlette, a mc

nugget etc stuck in a corner of my throat {scoliosis} no matter how

much fluids I drink is a pain.

Don't forget there are some meds that make swallowing harder for us

on top of the sma causes.

Prozac type meds and bladder control ditropan are big culprits for

swallowing probs.

>

> > For those of you who no longer have a functional swallow and had

to

> > get a feeding tube, how do you manage your oral saliva? My

current

> > problem is that the oral saliva goes down my trachea and not down

my

> > esophagus like it should and right into my left lung.

> >

> >

> > Thank you for your patience with all my swallowing questions. I

am

> > sick of me and I don't blame you if you are growing tiresome with

my

> > questions. My swallow study is tomorrow and I hope to have a

better

> > understanding of what is going on.

> >

> > L

> >

> >

[Guest guest]

I can relate also.   I had a barium swallow performed a few months back.    I

believe I posted on the message board.   In any event,  my results showed that

my upper esophageal sphincter  does not fully relax, hence not allowing the

bolus (food) to smoothly go down.   Resulting in having to swallow more than

once to get things.   I assume the muscle is tight but my neurologist couldn't

say whether a tight UES is sma related.    Anybody experience this?

 

I am seeing a speech therapist and a ENT doctor to work on prophylactic methods

and some stuff definitely helps.   The ENT also says caffeine is not good for

the UES and swallowing.  

From: Lori G <lorig713@...>

Subject: Re: Re: Ok, another swallowing question...

Date: Thursday, December 11, 2008, 8:05 PM

I know what you mean!

L

____________ _________ _________ __

From: Amy <charmedcripchic>

@gro ups.com

Sent: Thursday, December 11, 2008 6:50:56 PM

Subject: Re: Ok, another swallowing question...

If I eat a starburst candy it helps get stuck pills down.

Swallowing issues are so agravating. Sometimes I have to get out of

my chair, roll on my left side and get a whack to free stuck food.

I don't choke thank gawd but having a bit of cheese omlette, a mc

nugget etc stuck in a corner of my throat {scoliosis} no matter how

much fluids I drink is a pain.

Don't forget there are some meds that make swallowing harder for us

on top of the sma causes.

Prozac type meds and bladder control ditropan are big culprits for

swallowing probs.

>

> > For those of you who no longer have a functional swallow and had

to

> > get a feeding tube, how do you manage your oral saliva? My

current

> > problem is that the oral saliva goes down my trachea and not down

my

> > esophagus like it should and right into my left lung.

> >

> >

> > Thank you for your patience with all my swallowing questions. I

am

> > sick of me and I don't blame you if you are growing tiresome with

my

> > questions. My swallow study is tomorrow and I hope to have a

better

> > understanding of what is going on.

> >

> > L

> >

> >

[Guest guest]

Vickie,

Thank you for your support and encouragement.

L

________________________________

From: " VickiLJurney@... " <VickiLJurney@...>

Sent: Thursday, December 11, 2008 10:36:47 AM

Subject: Re: Ok, another swallowing question...

Lori:

I must admit that I was probably the most reluctant peg tube candidate in the

world. The though of getting one totally freaked me out. Getting one, in my

mind, meant that a part of my life was over. I could not visualize myself with

another piece of equipment strapped to my chair pumping nutrition into me. It

seemed so unnatural.

Now as I look back, I wish that I had gotten my peg tube 10 years ago when

doctors first suggested it. If I had, I probably would not have gone into

pulmonary failure 4 years ago and be on I vent today. See, I only ate one meal a

day...dinner. ...like you. However now, since I've had my peg, I am unable to go

long periods without my vent, and I have regained some strength and stamina.

What is most exciting, though, is that my ability to function has stopped

declining!

Now, unlike most peg users, I refuse to use a pump. Instead, I prefer bolus

feedings...where I just pour the liquid into the tube. In takes me all of 5

minutes to eat! When I'm not eating, my peg hides beneath my shirt where no one

can see it. My diet consists of the following: Breakfast--one can Ensure,

probiotics, vitamins, potassium, and my meds; Lunch--4 scoops of ProSource (a

plant

based protein powder) dissolved in water and followed by 8 ounces of 100%

pure cranberry juice; and Dinner--my night time meds, 3 scoops of ProSource

mixed

with water, and one can of Ensure. I tried Tolorex, but I felt nauseous

constantly. It's nasty stuff. My calorie intake per day is about

900-1,000... .depending on what I eat by mouth during the day. And, my protein

intake is about

60-70 grams. And I can still eat by mouth. It's a good thing too, because I love

beer and guacamole!

As for my quality of life, well Lori, you know me....I run Pet Pals AND have

another 20 hr./week job. Yes, I work 50-60 hrs./week outside of my home. Plus,

I travel, shop, go to movies & concerts, frequent Starbucks, train dogs, pay

my mortgage, get my van's oil changed, have terrific sex with ..... you

know, live the life of an average 50 year old. Nothing has changed now that I

am " tubed & vented " , except that now I never get tired until bedtime.

I know that you will make the best decision for you, Lori, as you are a

highly intelligent and reasonable lady. Just remember this....we Texas women are

very strong, determined, and resilient. And, we take care of our own. So,

remember that I'm here if you ever need a kindred soul to whom to vent!

Take care,

Vicki

************ **One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. The NEW

AOL.com.(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity &

ncid=emlcntaolco m00000019)