exchanging experiences with bulbar onset ALS

[rmt]

@GXTrex we are using St. John's Wort. Be sure to check for any drug interactions with the medications you are taking. There are a bunch of things it isn't good to take with. But it has improved both of our moods considerably. I couldn't convince my husband to try a prescribed antidepressant, so I'm happy he was well to try this, and that it is helping!

 

[ari3027]

Thanks so much for the swift replies! So helpful to know that you felt the PEG was the right decision!

Luckily the surgery went well and my dad didn't have much pain so far.

I read that it's possible to put homemade blended food through the feeding tube as well, but the doctor said that that would not be hygienic. Do you have any experiences with home made food through the PEG?

Do you have any experiences with a tracheostomy? I doubt that my dad would want one, but I want to make sure he has all the information he needs to make this decision. My dad's doctor made it out to be something my dad would be able to live with "just fine". I would love to hear from someone who has experienced a tracheostomy themselves.

Thanks again for all your help!

 

[lgelb]

The doctor is incorrect -- perhaps out of date or unfamiliar with real food tube feeding. Many blend their own food. With a modern high-power blender like a Ninja, Vitamix, or Blendtec, and thinned with liquid, virtually any cooked food, including meat, that you eat, can be put through the tube. Considering that most people prepare their food with clean hands, and you would do the same, there is no hygiene argument to be made so long as you do standard tube care. You can find groups on Facebook, search threads here, and there is good information on the Oley Foundation site, among others.

I'm sure you will hear trach experiences as well, but not everyone with that experience is still with us, so also use the Search button up top.

 

[ari3027]

Thanks so much - I found some great resources for home made PEG food.

How long does the PEG feeding usually take once it's fully healed and one is used it? The doctors schedule seems to suggest that a 'regular' feeding will take around 4 hours once my dad is fully used to it. Is that true in your experience? I was very surprised about that...

Thanks again!

 

[affected]

We gravity fed and a meal usually took 10 -15 minutes.
I would often eat my meal while doing his feed.
If it is done slow drip by a pump it can take hours and can be done while relaxing (you won't have to be there or hold anything).
That would be a larger volume being given over that period of time too.

 

[rnewton60]

He can reach out to me. I am 61 years old and have had bulbar onset ALS since 11/01/19.

 

[Robert122]

Iam 78 and have ALS bulbar for two years now. I cannot speak well now. I could six months ago. My name is Bob and will answer your questions . Let me know.

 

[Miss]

My late husband had the same issue with the PEG. He agreed to it when he realized that a PEG can be removed. It never was, but just knowing that it could be removed tipped him over the indecisiveness.

 

[GXTrex]

How often do you typically have to do a gravity feed?

 

[Wilson2009]

I gravity feed three times a day. Two 8 oz containers of Jevity each time. It takes around 15 minutes each time.

 

[GXTrex]

You Don't get too bloated doing two at a time? The dietician wants my dad two be fed 5 times a day which is a lot.

How much water do you get?

 

[Wilson2009]

No, I have never felt bloated as long as I keep at least 4 hours between each feeding. I have 16 oz of water in the morning, 8 oz at noon, and 4-8 oz at dinner. I also thin the Jevity with extra water as Jevity runs like molasses through a mic-key. I would say about 4 oz during each feeding.

 

[GXTrex]

Are you starting each feed and ending with water, in addition to thining the jevity? I am trying to see how much water Pals usually need. Thanks for your help

 

[Wilson2009]

I do start each feeding with water to make sure the feeding tube has not developed a clog.

My nutritionist told me at least 1000 ml (33 OZ) of free water per day.

 

[rnewton60]

I have bulbar onset ALS for two years. Happy to chat with your father though I can no longer speak