Bolus Feeding (independently)

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bjd1

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Good Afternoon,

First just a little background, I ended up having my PEG procedure on the 11th of February this last month. Currently I consume about a gallon of water a day and 3 cans of formula, I also drink 3 milkshakes made with ensure. With the exception of speech, my right hand and arm have been the first to take a hit from this disease.

I am right handed and no longer can grab or lift anything with that arm. This brings me to my question. Do any of you feed yourselves? My wife currently manages my feeding times and she works 2 jobs and is in a masters program. As you might suspect, I really dislike having to tackle her at 6 in the morning and when she walks in the door after a long day. I am guessing that she does not like it either.

I am unable to hold the syringe, unclasp my hose and definitely struggle with the injection using the plunger. Determined to figure this out and look forward to any suggestions.

Thank you
Brian - Once a VERY "In your face" kind of guy. Now humbled by ALS.
 

COlisa

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Feb 21, 2006
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120
Hi Brian,
My husband Dave got his PEG tube on Feb 23. He is left handed and cannot use that hand to do much of anything any more. He has gotten pretty handy with his right hand which is also affected but not as badly.

I did the PEG tube feedings the first couple of days, then he wanted to try. I did not think he would be able to do it, but he proved me wrong. I helped him a couple of times, now he manages everything himself.

He uses a gravity bag, which makes things a little easier I think. He does use a syringe to flush the tube before & after feedings, but does everything else through the bag. To fill the syringe, he braces it with his left hand in a tall measuring cup then uses his right to pull up/push down on the plunger (although if I or one of the kids is nearby, one of us will help him). He is able to use his right hand to open the clamps on the PEG & on the gravity bag (although the roller clamp on the bag seems harder for him).

He is a pretty determined guy and I think being left handed all his life, he was forced to do some things right handed sometimes. Anyway, it is such a relief for me that he does not have to wait for me to feed him (for now at least).

The net of this reply is: go ahead and trust yourself to use your non-dominate hand (it's good for your brain too ;). Or see if you can take on some of the preparations even if you can't manage it all. But if you cannot manage it by yourself DO NOT BEAT YOURSELF UP about it. I know that I would be happy to be doing Dave's feedings because I know he is much better off with the PEG tube than without it.

Take care & give your wife and extra hug tonight ;).
Lisa
 

BethU

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Brian ... that is rough. I manage to feed myself with the tube, but have lots of problems with the syringe "floating" away from the tube opening. I get an Ensure shower several times a week. And I'm using two hands, altho both are much weakened.

I don't use the plunger. When my niece helps me, she uses it but says it takes a lot of force, and I can see that she is really pushing hard. She is trying to figure out a hanger arrangement that would hold the tube end/syringe while I pour. I use gravity by lying down and holding the syringe up high. But this requires me to sit up to prepare the syringe, then lie down carefully holding the syringe aloft, then sit up again for the next batch. It's hard to sit up holding all this &*^%$ up high, but at least the Ensure goes down.

I undo the clamp on the tube by pressing it against my leg. If I can wedge a finger in, it will pop out If you had a holder for the syringe and tube end, all this might work one-handed. Maybe you could figure out a tube/syringe holder on the wall where you can prepare the "swallow" then lie down beneath it and unclamp the clamp and let it flow.

I'm going to start doing only small (very small) "swallows" at a time, to see if I can overcome the syringe-popping-out-out-of-the-tube issue.

My tube has clogged, also. My speech path told me to use Coke to unclog it, massaging the tube. This worked, but my niece said it took a lot of effort to dissolve the clog. I have no problem at all with water ... if I'm lying down, it runs right down the tube ... so maybe if you thin the Ensure with some of your hydration water and concoct a holder (I'm hoping my nephew will build me something), it might go down more easily by gravity and you can skip the plunger.

Good luck. We are humbled indeed by this stinker, but we all get Brownie points for managing as well as we do.
 

oleyfriends

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Help with tube feeding

Brian,

I saw your posting and wondered if you had heard of the Oley Foundation yet.

We offer free information and peer support for people on home tube or IV feeding. Check out our website at www.oley.org.
 
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BethU

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Brian ... there must be a better way.

I heard about a PALS who had a "nutrition pump," in which she received her supplement continuously from a hanging pouch, like an IV bag. She was bed-ridden, but if something like that could be set up with an easier way to connect the tube than with the syringe and a faster rate of flow, that should work for those with some mobility.

Vendors should realize that some of us are doing this on our own at least part of the time. What we're dealing with now is a real Rube Goldberg design.

Good luck.
 

Al

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Thanks Roslyn for posting all that information. I'm sure our PEG tube patients will find it useful.

AL.
 

danjay

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Lots of good info in this thread, thanks. I will describe what I do but I think it will be hard for those with
weak hands. My problem is in my upper arms, shoulders and neck, I cannot raise my arms at all from
my sides. My right bicep is gone but my left struggles on. What I do is similar to the syringe holder but
homemade. I use scotch tape to secure the syringe to the side of a heavy coffee mug. I put this on a
thick phone book. At this height the peg tube bends against the table top and this pressure keeps it
pretty much in place. In my office, where I really don't want to spill, I tape the tube down to the table.
Using both hands together and chair arms for support I can get an ensure can up to the syringe and
pour it. I used to flush with the syringe and plunger but now I just pour water.

To enhance my diet beyond ensure and jevity I now take a can of mixed vegetables, or lentil soup
or some such and blend them to death. I take half this, and a can of ensure and mix them. This goes
through the tube very slowly but makes for a more normal meal. If the syringe or tube get plugged I have
a little trick. The tube is running across maybe 3 inches of table top. I put one thumb on the tube,
squeezing it, then use the other to slide toward me from that thumb, pushing the tube flat and empty
for an inch or so. Then let go the first thumb. The surge will pull out the plug most times.

Not sure this will help anyone, we are each rather unique, but may give you some thoughts.
Best to all
Dan
 

jrumley

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My Father has Bulbar Onset ALS and has been on a feeding tube for some time now. He lost mobility of his left hand and in order to keep his independence I designed him a feeding tube holder that can be operated with one hand. I am in the works of having some fabricated right now.

I am not sure about the pricing just yet. But less than $100.00. It is made of aluminum so it is light weight and anodized to keep it easy to clean.

Regards,
Justin
 
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Al

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Justin. Are you familiar with the term "overkill" ? 3 posts about the same thing is overkill here. We do allow advertising for useful products but once is usually enough.

AL.
 

jrumley

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I appologize for the multiple posts. I found this post from another site and then became a member to start a thread. I did not realize that a moderator had to approve the thread so I posted again thinking I hit the wrong button. My intention is good. I do not want to advertise, honestly I wish that I never had to make the damn thing! I am passionate about making others lives with ALS better is all. I will ask them to take down one of the threads. I did not realize it double posted. Thanks for the heads up.

Kindly yours,
Justin Rumley
 

Al

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No problem. We do get some advertisers that post on all the forums multiple times and it gets annoying. Yours was not a big deal but links and email addresses have to be approved which could take minutes or hours depending on the hour of day or night. Thanks for coming back to check your post. Lots don't. Just dump the link and run.

AL.
 
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