Traveling and ALS: Share Your Challenging (and Humorous) Moments

[Dagmar Munn]

If you are traveling during the holiday season, I’m sure you’ll agree that traveling with ALS is challenging… and can be either stressful or laughable situations. Although taking a trip is something I haven’t been able to do yet in these post-pandemic days. I think you’ll enjoy these memories I shared in one of my columns about a few pre-pandemic trips that challenged me to find humor in every mile:

“Laugh on Down the Road”

Tell us about the trips you are planning and how you are arranging for accessible accommodations. Do you have any stories to share about your challenging travel moments… and advice for our members?

[Eric Jensen]

Visited a Georgia State park to see a waterfall. They said it is handicap assessable. Joke 1. Started up the incline in my PWC and was quickly going sideways and into a fence(luckily it was there). Joke 2. Back down the handicap assessable decline. Sideways. Joke 3. Pretty view where I was able to access lol.

[Dagmar Munn]

Eric – – those certainly were laugh-cry moments! It’s so frustrating that “accessible” is widely interpreted by those who are able-bodied. Why don’t they recruit a disabled person to test run and give feedback? Who knows. Until then, we have to be careful — yet try to continue to enjoy the great outdoors.

So glad you survived the experience 😉 😉 😉

[Lisa Brown]

As my journeys are at lease 4 hour trips (rare now), I quickly found out that disability toilets are:

1. Not always solely wheelchair accessible

2. Are not the nicest place to visit even when in need

3. When the legs are useless and the arms aren’t strong a carer is need to get me back off the toilet to my chair.

I am planning a short term catheter for Xmas as even relatives toilets are too low to get off.

I have even been stuck sat on a hospital toilet, crying as I didn’t have help.

[Dagmar Munn]

Lisa, I can relate – – although I haven’t been stuck (yet) I’ve had some close calls.

My trips are planned by first mentally reviewing nearby accessible restrooms. Then calculating my fluid intake and the timing of my potential need to use a restroom. And by all means, “go” right before leaving. It’s a lot… but living with ALS means no more spontaneous “let’s go to…” anymore.

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