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Living with ALS: Feeding tubes and living with the dreams

Tuesday, April 2, 2019   (0 Comments)
Posted by: Andrea Guidi
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By Bob Taylor

commdiginews.com, 3/31/19

 

I am about to experience another milestone. I have decided to get a feeding tube as a preventive measure for the time when I am no longer able to swallow. The milestone is that I have never spent a single night in a hospital, and I am petrified. Too many people I know have gone in for routine procedures and come out at room temperature.

I understand that ALS has no cure, and I have accepted my fate, but there are still too many other things I want to accomplish before the Ferryman shows up at my door.

And so my “Benjamin Button saga continues.

When we are born one of the first things to happen is the cutting of the umbilical. In my case, I feel as though the feeding tube is nothing more than putting that cord back.As a result, as the surgery nears, I have been having strange dreams.

On the opening day of baseball season, for example, I dreamed that I had been invited to a game to “roll out the first pitch.” No matter, baseball or bowling, I still managed to get a strike.

I am still able to ambulate on my own, though not without considerable effort to keep myself from falling, I now awake in the morning with strains of You’ll Never Walk Alone echoing through my brain.

Earlier in the week I had appointments at the VA to see a dermatologist. The routine is always the same, “Name, date of birth, last four.”

“Last four” refers to the last four digits of your Social Security Number.

 

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Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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