Do all ALS people have to get a PEG?

[Kim C]

Mom is two weeks post diagnosis and we've not been to the ALS clinic yet so I have questions. Do all ALS patients eventually require a PEG?
Also, what causes the nasal speech? Mom's speech is getting worse and has a more nasal sound.

Kim

 

[Annie's Phil]

No, all ALS patients do not need to get a peg. Those that develop swallowing difficulty are the ones that benefit from it, but not all ALS patients develop bulbar involvement, which includes difficulty swallowing and chewing. Prevention of food aspiration is one of the principle benefits of a peg for a pals who has difficulty swallowing. Of course it also allows them to get nutrition that they couldn't otherwise get. Annie never developed bulbar symptoms and never got a peg. Even if one develops bulbar effects, getting a peg is an individual choice. Most pals who develop difficulty eating choose to get one, but not all.

Bulbar involvement affects the ability to use the muscles in the mouth and throat, and will definitely affect the sound and clarity of a pals speech.

 

[BrianD]

I agree with everything Phil said. But also be aware that if someone decides to get a PEG they have to get it inserted before their breathing gets too bad as well, so the procedure can be done safely. They can't always wait until eating or drinking becomes a problem, as doctors won't do the procedure if breathing is too poor. So just be in sync with your doctor.

 

[adozi]

The ALS clinic will have a pulmonary function test. The Doctor will make a recommendation based on your mom's wishes and lung capacity.

 

[Atsugi]

On the flip side, remember that ALS's most consistent tragedy is the loss of control over every aspect of your life. So caretakers, I think, do well to help our loved ones keep as much control over their lives as possible. A big, scary part of the disease is the dying part. I suggest letting your mom determine her own future in that regard. Some persons with ALS choose not to live a life with tubes of any kind. It's a perfectly acceptable option to live (and die) without artificial feeding.

 

[TGB1]

Even though my mom is 86 there was no question that she would get the peg. She is bulbar and eating was just becoming a huge stressful ordeal. She was also losing a lot of weight. The peg has really been great for us - no problems whatsoever. I do not regret this decision at all. Trina

 

[Kim C]

Thanks for the info everyone. I really appreciate it. Today mom was able to feed herself supper and is in a pretty good frame of mind. I am so terrified of what is to come, but must not be so fearful of the future to miss out on what we have now. It's not much, but today she was my "mom" again, and for that I am thankful.

 

[affected]

Hi Kim,
my PALS started with what he felt was slurring, but the early doctors kept calling it a hypernasal speech.

I could press my hand to one side of my cheek/nose and get the same tone of speech and at that point we were looking at other causes. But all the muscles weaken - nasal, cheeks, lips, palate as well as the tongue.

So the early bulbar involvement does often at first give a nasal tone to the voice as you are noticing.

We haven't got to the PEG stage yet, but it is likely to be the next step we take.

I know your fears, believe me, we all do, but this place is really great for support, so do ask all your questions

 

[bowser]

My wife was diagnosed in March 2011 after experiencing SLIGHT slurred speech. We were told the options and my wife Margaret opted for a feeding peg but did not want a ventilator in the future.

She was told to get the feeding peg before you NEED it.
She had hers installed in Sept of 2011 and went on half and half. ( half nutrients by eating....half nutrients via feeding tube )

After a choking incident in February of 2012, she went on 3/4 feeding tube and 1/4 eating.
In November of 2012 she went 100% feeding tube ,

If Margaret ( age 68) had opted for no feeding tube, she would have starved to death last November( 8 months ago )

She is nearing death, but the feeding peg " bought" her 8 more months of seeing her grandchildren and I think it was a wise decision for her. I ( husband )am her care giver and using the feeding peg is a " breeze '

 

[bowser]

sorry.......................(68) is what I meant

 

[bowser]

I don't know why keep getting a smiley instead of the number eight ?/

 

[CuriousGirl]

so if you don't get tubes or any kind of life support, then what happens?

i was looking into oregon's "dying with dignity." i recently watched a documentary on taking your own life legally with a doctor assisting.

 

[Annie's Phil]

I don't know why keep getting a smiley instead of the number eight ?/

You need to check the "Disable smilies in text" box under the "Additional Options" heading. Smilies are the default.

 

[affected]

bowser, thank you for your clear description of your experience with the PEG.

I so agree, get it before you need it if you are going to use it. My PALS has agreed to have it, but won't agree to have it put in (confusing huh?). He says he will 'know' when he needs it, but the fact is his breathing may disqualify him from getting it if he leaves it til he needs it just for swallowing.

We are attending a PEG clinic at our hospital soon so we will see how he feels after that.

With the smiley with sunglasses - that one is create by typing an 8 immediately followed by a closing bracket ) that's why it was messing with ya, so as was suggested you can choose to turn the smileys off.

CuriousGirl - if no support at all is taken, then it is my understanding that the PALS will have more and more problems eating and will therefore either 1) aspirate and develop pneumonia which could end up fatal or 2) slowly begin to starve and dehydrate due to not being able to take enough by mouth. That's for the bulbar problems, the other life threatening problem is the muscles for breathing. If no support is used then usually in fact it is more a matter of build up of CO2 that causes increased drowsiness until breathing ceases. But if it is oxygen deprivation this tends to be frightening and may require morphine to assist the person to the end.

Others can probably give better descriptions than I can as my PALS is still eating, and we have just purchased a food processor to help modify his foods for him a little.

 

[bowser]

bowser, thank you for your clear description of your experience with the PEG.

I so agree, get it before you need it if you are going to use it. My PALS has agreed to have it, but won't agree to have it put in (confusing huh?). He says he will 'know' when he needs it, but the fact is his breathing may disqualify him from getting it if he leaves it til he needs it just for swallowing.

We are attending a PEG clinic at our hospital soon so we will see how he feels after that.

With the smiley with sunglasses - that one is create by typing an 8 immediately followed by a closing bracket ) that's why it was messing with ya, so as was suggested you can choose to turn the smileys off.

CuriousGirl - if no support at all is taken, then it is my understanding that the PALS will have more and more problems eating and will therefore either 1) aspirate and develop pneumonia which could end up fatal or 2) slowly begin to starve and dehydrate due to not being able to take enough by mouth. That's for the bulbar problems, the other life threatening problem is the muscles for breathing. If no support is used then usually in fact it is more a matter of build up of CO2 that causes increased drowsiness until breathing ceases. But if it is oxygen deprivation this tends to be frightening and may require morphine to assist the person to the end.

Others can probably give better descriptions than I can as my PALS is still eating, and we have just purchased a food processor to help modify his foods for him a little.

your last sentence of 2nd paragraph nails it.
Waiting until you need it might very well mean you are no longer able to with stand the simple procedure.

The reason I am such a big supporter of a feeding peg is it is terrible for the caregiver to watch the ALS patent gasping for air choking because they have difficulty eating.

Another side affect of ALS is you lose your gag reflexes and w/o gag reflexes the procedure to have someone come from behind and squeeze you ( I forgot the name of it ) is usually ineffective.