Kennedys Disease Community
Feeding tube

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https://kennedysdisease.groupee.net/eve/forums/a/tpc/f/8581031121/m/1817078196

10-24-2019, 08:54 AM
Cam
Feeding tube
Pulmonologist is making noises about a feeding tube. Anyone have experience they care to share? (pm me if you wish).
10-24-2019, 10:15 AM
ToddAllen
My neurologist started asking me if I'd consider a tracheotomy or a feeding tube about 10 years ago. But his practice is mostly ALS patients and not KD and I think that affects his view. My issues were worse when I couldn't breath through my nose which was most of the time. Went to an ENT and learned I had a deviated septum got it fixed surgically and my swallowing and choking problems became manageable.

Since then I've completely reversed my approaches to diet and exercise. Went from a high carbohydrate low fat vegan/vegetarian diet to a very low carb keto diet eating mainly meat, eggs, fish and modest amounts of low carb vegetables. I went from doing higher volume low intensity exercise to mostly very brief workouts, just a few minutes of strength training at the highest intensity I can do.

And for the past 3 years I've been getting increasingly more healthy and fit, a lot leaner and a little stronger, and now other then when I get a nasty cold issues with swallowing, choking and breathing are rare, brief and not scary.

So in my case I'm glad I've resisted the majority of my doctors' suggestions. But on the other hand I'm glad they are there with options in case I find myself in a life threatening situation that I'm failing to manage such as my hernia of a couple years ago.