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serenade

Distinguished member
Joined
May 3, 2009
Messages
285
Reason
PALS
Diagnosis
04/2009
Country
US
State
pa
City
Zelienople
Went to the ALS clinic on wed the doctor feels I have good strength everywhere but my left ankle and toes. He thinks that I should have a feeing tube inserted now while I am still strong. Then it is ialready in place already for when I can't swallow food any more, I currently can still speak some what. Any opinions on this?
 
Do it now, don't wait. It is easier to have it and keep your weight on than to do it later and try to regain lost weight. Believe me, I know.
 
Thanks :) I thought that is the way to go just freaks me out! Can you go in hot tubs or pools with it?
 
Sorry, I haven't, I asked the nurse at the hospital about it and she said no but I haven't asked anyone else about it as we don't have a hot tub and I haven't been swimming in a long time anyway. Ask your doctor as I would like to know what he/she says. And I know what you mean about it freaking you out, that was my first response too but you get used to it pretty quick.
 
I do have a hot tub :) It is purified with hydrogen peroxide type chemical. Since using it 2X a day and doing stretches while in it and taking some herbal supplements. My night time leg cramps and legs spasms have almost disappeared I would hate to not have it I am positive my symptoms would worsen. I go back to the clinic July 1st I will let you know.
 
You could always just go in the tub up to just before the level of the tube. I only went to waiste level when breathing got bad and water pressure on diaphram made breathing difficult.

Al
 
I used our hot tub when we were still living in our last house. I had my PEG for 1 year before we moved. I had to quit the HT because of breathing issues, the water pressure was too much and I could not breathe.
 
Thanks for the info.
 
I got my peg put in yesterday and feeling pretty good today! Doctor is going to give me a different type of peg in 6 week sort of like a button. It will allow me to use the hot tub or swim until I need to use the peg. Does anyone have this type of peg?

Thanks Judy
 
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