9.26.17 Snot is the glue that holds us together

I’m learning that the ALS community is beautifully dynamic. Would we jump ship if given the opportunity? Without a doubt, but until then we are all here twitchin’ and droolin’ together.

Kenneth and I have had the opportunity to meet some of the absolute neatest people. Some we only know virtually but their love and understanding transcends the internet. Such a cool world we live in that people can support each other through a terminal disease and never have been in the same room together – wow!

On accident, I started following a woman named Meg who is living with familial ALS and writes a witty, honest blog called AlteringLifeSpectations. She too recently posted a blog about snot that I felt was too good not to share with y’all.

Trying to Reason with Allergy Season

Now with ALS, I can’t blow my nose or cough so I rely on my cough assist and suction machines and lots of Kleenex, which I use to catch my runny nose. But I am active too and it is not convenient to haul the machines around.

I don’t mean to complain and I am not looking for sympathy. I only want to show how difficult allergies and ALS can be.

You can read more about Meg, her incredible journey with familial ALS, and her troubles with snot by clicking the link above. We talk about how much ALS sucks, but when you have a machine specifically for snot, well, that’s a whole new level of suck.

2 thoughts on “9.26.17 Snot is the glue that holds us together

  1. Sunny, I love your “whole new level often suck”. yes ALS SUCKS – I have a t-shirt that says that. Are you connected with Young Faces of ALS which is connected with ALS TDI? ALS really sucks when it hits young people. You are strong, funny, and inspiring!

    Like

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