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MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,544
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
I have lost so much of the use of my hands arms, fingers that I cannot lift a fork to my mouth without help. Yet, I am still able to swallow regular food.
I have noticed a decrease in my appetite, but was wondering. Has anyone else had this type of progression?
My lung capacity is holding around 50%. Should I go ahead and get the feeding tube or wait until I have problems swallowing?
I would have thought by now my speech and ability to swallow would be gone too.
I did start with Limb onset, in the feet and it has been slow progression, but the loss of arm strength has speed things up, or at least seems to.
Any thoughts or ideas.
 
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I'm no expert, Capt. Al but my vote is: go for it now while your lung capacity is still pretty strong and your recovery will be easier. Having a PEG doesn't stop you from still enjoying your favourite foods by mouth. It's all about keeping up your strength and slowing the progression and it's been proven by many pALS here (including my dad) that the feeding tube is pretty successful with both those things.

All the best to you!
 
Go for the PEG anyways while you are able to heal quickly.

Glen
 
I agree with the other two posters. Having a feeding tube while still being able to swallow is the best of both worlds really, you can still enjoy the taste of food, but you can use the tube for convenience and to help you stay hydrated. If you can get a gravity feeder you could take feedings without much assistance.

Also, if you wait until you have probs swallowing, you may also have decreased respiratory function that could make peg placement complicated. It can't hurt anything to get it now, can only make things easier for you, I say go for it! And best of luck!
 
Go for the Peg tube! PLEASE!
 
Capt Al, I agree with everyone else, go for the PEG as soon as you can. I may take a while to arrange it anyway so you should talk to your doctor about it as soon as you can. Like Thelma and asantiago said, having a tube doesn't stop you from eating what you want, it can be used to augment your nutrition. That is how I started with my tube in February, it was started as a couple of boxes of formula to supplement my regular food to now where although I can still carefully and slowly choke down some food most of my nutrition comes through my tube. Go for it while your breathing is still good.
 
Yes, I am in total agreement. Get your PEG while you are still breathing fine and healthy. This way it will be there for when you need it. As others have said, just because it is there does not mean you have to use it, but the peace of mind you get from knowing it is there if you need to use it is worth a lot!
 
hi capt al.
i am so sad to hear about your progression and really hope things slow down soon.
is there anyone who can help you at mealtimes?
i am just thinking if you can swallow and chew and enjoy food you should still do it,this is just my opinion and we each have to make up our own minds on these matters.
is it possible just to have the peg when you need it but still eat normally as well?
i will keep you in my thoughts and prayers.
 
How do they put in PEG tube.

Thanks for all the wonderful comments.
Another question for you is how do they do the procedure?
Do they put you to sleep. I'm am chicken when it comes to pain.
All the gory details please. :shock::shock:
Is there a permanent tube that the feeding tube goes in? I have heard people talking about changing tubes and I was wondering how that was done? How do you unclog a clogged tube, draino? :smile: Roto rooter?
Help I'm lost.
help.jpg
 
Capt Al, I too am allergic to pain. For me it was lights out so I can't give you gory details but how it works is this. Once I was in LaLa land (I was completely out and don't remember a thing) they put the endoscope (the E in Peg) down my throat to my stomach and turned on the light on the end and used the light shining through my stomach and skin to show them where to cut. The tube that they put into me is supposed to last up to 18 months and so I don't know yet about changing tubes, I'll leave it to others to comment on that. As far a clogged tubes, I haven't had any and as long as you flush well with lots of water (and it's a good way to drink anyway) then clogs aren't a problem.
 
my thoughts and hopes are with you
 
If you read one of my blogs on this it will give you an idea of what I went through. It was incredibly easy. The first PEG they put in has a long tube permanently attached and I had it for 1.5 years. The doctor needs to remove this one and put the next one in. This one has a deflatable balloon so you can change it yourself. These are typically changed every 6 to 9 months.
 
How do you get back in the same hole? Do you just fish around until it goes in? Is it painful?
 
Capt. Al ... haven't had my first tube replaced yet, but it's kinda hard to miss where it goes. It's either the feeding tube hole or the belly button. There is just one tube involved, as far as I can tell.

No clog can stand up to the plunger, but I only have to use that a couple times a month, as I use the supplements and they flow in easily. If there is a slow-down or clog, Coke will dissolve it quickly. It is really a very patient-friendly device.
 
Hey Beth,

As far as I'm concerned you're the expert on this, but at our ALSA meeting last week, the dietician specifically said not to use Coke for unclogging any more. She said if you get a protein clog the Coke doesn't help and actually makes it worse.

I dunno, she also said not to put beer or wine in the tube, so she's obviously unqualified to say anything about PEG. :p

-Tom
 
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