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?
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.
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.
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?
Feeding tube 
I thought that is the way to go just freaks me out! Can you go in hot tubs or pools with it?
