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Oct 16, 2006
San Diego
Hi, I'm new to the forum. I was diagnosed in Oct. 2006 with bulbar and life went smoothly except for my slurred speech. I had to retire from teaching in June 2007 as the speech was really bad. I started walking with a cane last Sept. but life still seemed fairly normal. Started losing lots of weight and by mid-Dec was feeling extremely weak and light-headed. I had the PEG inserted a week ago thinking from everything I had read that it would be a fairly simple operation. I fainted in the elevator heading to the parking lot afterwards and was taken to the emergency room. Stayed there four hours, but fainted again when trying to get into the car. Spent the night in the hospital. I hate the PEG! I can use it OK but trying to find a comfortable sleeping position is impossible with the clamp and long tube taped to my abdomen. Also I seem to feel nauseated if I take more than one can at a time. Trying to work in 5 cans and take Rilutek twice a day on an empty stomach is a challenge. I always felt somewhat optimistic about my life until this week. Now I feel so depressed with this PEG, the wheelchair that has just been delivered and above all that my speech is so so bad since the hospital stay that even my family can barely understand me. I would love to hear some advice about adjusting to this big change in my life--- particularly the PEG. Thanks!
Hi Awrangsburg,

Reading your post reminded me of how Linda (my PALS) felt after getting her peg.

It took longer than she hoped for the site to heal and she too felt nausisated a lot of the time at first. Sleeping comfortably was not a problem because she slept on her back and, by the time she had the peg put in, could not move on her own.

We found that one can four or five times a day worked best and we found that eliminating as much air getting into the tubing as possible helped too. Some days
we would need to do 1/2 a can, wait an hour or so and finish it.

We found that giving the meds with the formula caused upset stomach much more than waiting an hour after feeding.

Hang in there my friend - I know I speak for many of the PALS & CALS here when I say
"we're all pulling for you" and praying for you too.

Warmly, Jeanne
Trying to work in 5 cans and take Rilutek twice a day on an empty stomach is a challenge.

I don't know about PEG, but did they give you instruction regarding Rilutek with PEG or are you working from your original, pre-PEG, Rilutek-on-empty stomach instructions? I've read that the reason for the "empty stomach" instruction is that absorption of Rilutek isn't as good when you're digesting fat. I don't know whats in those PEG cans...if they are not high in fats, maybe they won't interfere with Rilutek absorption? Ask your doctor.
When my wife got her PEG it took her awhile to get used to the food...upset stomach etc, but once that went away, she gained weight and it did not bother her anymore. The site took so long to heal, it was bleeding almost every day and that took close to 1.5 months to heal properly. Now she is extremely happy with the peg. ( under the circumstances) She does not tape it to her skin but places it inside her bra. Stick with it, its like anything else, it will take a bit of time to get used to it.
Hi Awransburg -

My friend was very discouraged when she got her PEG. Also stayed overnight and had very hard time for 2 weeks - took vycodin with no relief. Dr. seemed surprised at her pain. But then her support group said they experienced the same thing, especially the women - more pain than most of the men, longer healing time.

Now she barely knows it's there. Never tapes it unless going out. Feedings took 2-3 days to get right. We were told that if you have problems start with half can of water and half of formula. We never had to do that.

Seems like most people do a gravity feed from a bag. She did not tolerate that too well -so we clamped the tube and slowed down the flow to about 45 minutes per can - worked just fine. Later I read that bolus feeding (just using gravity) stresses the breathing of ALS patients, and that they need a slower feed.

Regarding your wife taking a turn for the worse - same happened to Pat (my friend with ALS). In fact I thought she would die within the month. In one month she rebounded to her old self, but with a significantly higher energy level, stamina and wakefulness.

We had no eating problems - just significant weight loss. After 3 months her appetite rebounded and we have not used the tube in 15 months.

We went from total discouragement and losts of pain - to finding it helpful - to almost forgetting it is there.

Keep in touch with your doctors until they get it right. Currently no one in our group of about 20 people is having any problems. Problems with diarrhea, etc. are a matter of adjusting formula. She was never constipated with formula - initial short period of diarrhea.

We really understand the discouragement - we were underprepared for the adjustment - but everything finally settled into place.

Good luck and let us know how you progress. Beth
Hi Awransburg,

I myself do not have a PEG yet but do suffer bulbar.. I will pray for you and your family as you adjust to this new challenge. Hang in there and give it some time. I wish the best of luck - keep us posted.
thanks for all the good advice about the PEG. I was back in the emergency room today due to trembling limbs, locked jaw and nausea. They think I am experiencing anxiety over all the changes in the last week. Reading all your advice about the PEG getting better makes it so much less intimidating. How do you put medications into the tube---- crush them up and put them in the nutritional formula? I don't want to clog up the tube. Any tips you can offer about putting medication in the tube? thanks
We got a pill crusher (make sure it's ok to crush, some are not) and mixed the crushed pills with water and I'd pour it in the same way I did the formula. Linda's PEG was never hooked up to the gravity feed we just used a funnel on the end of the tubing.
Always make sure to rinse with water afterwards.
Worked well for almost six months.

Hope this helps.
Sorry to hear about your problems with the peg. My husband, Mike has ALS and he has a peg. He can still eat and I supplement with the Resource 2.0. I understand about taking the Rilutek on an empty stomach and trying to work in 5 cans of milk. Have you considered doing your feedings at night? That would give you more time during the day. Mike quit taking Rilutek after about a month. He saw no changes, other than he was having more troule breathing. He was diagnosed in December 2007 and it is only in his respiratory. His CO2 levels are really high and he uses the Bi-pap as much as possible. As for the peg tube, we removed the tape(caused a skin rash) and he just lets is dangle. We call it his TAIL! I will be praying for you and take one day at a time.

God Bless,
Zina Akin Perry
Rusk, Texas
Thank you for the advice about eliminating the tape. I had the neurologist cut the tube shorter, too. I think that day by day I will be more adjusted to the PEG. Lots of things have been happening and I think it just snuck up on me and knocked me cold. I am lucky to have my family to help me with this. I know I can turn to other Pals for support, too.
My mother had many medications and we used a mortar and pestle to crush them, and then we scraped them in a medicine cup and mixed them with water. We then flushed them through the peg, some water, medication, more water. It worked very well, you just need to make sure you stir well so it doesn't clog. If it does clog, warm water and massaging the tube between your fingers gets them going down. It's just important not to panic, they will go down. As Jeanne said, you need to make sure you can crush them, mum had two a day which were "modified release drugs" and she had to swallow those ones but at least she didn't have to worry about swallowing the others. Also, Paw Paw ointment worked well for mum when she got any irritation around her PEG.
My grandmother has had her PEG for about a month. I can honestly say that the nurses at the ALS clinic explain the PEG like it is the most wonderful thing ever. After my grandmother got hers, we realized it was more complicated than they explained. Cutting the tube shorter helped and also you can put a rubber band around it instead of a big clamp.

My grandmothers symptoms are the same as yours, bulbar and loss of speech clarity. We can give her 2 cans of milk at a time as she can tolerate it.

She had lost over 75 pounds in about a 6 month period. Even though it seems to be a pain, she has gained 6 pounds back in a month. Don' let yourself loose much weight as her doctors say the key is to stay a healthy weight.

Next decision for us is the ventilator. My grandmother wants to get more facts on it before jumping the gun as she felt she did with the PEG.
My mom got her PEG last week. We weren't given good instructions at the hospital, other than make sure you flush it with 30 CCs of water before and after you use it. One of her nurses, the only helpful one, did tell us if you do get a clog of medicine in the tubing, just pour in a small amount of Coke-a-cola.
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