u/OldDirtyMoney

I'm curious to know how you informed people of the ALS diagnosis. Outside of family & close friends (who you speak to regularly).

With permission (of course!)...

I am debating on whether I should share my mom's diagnosis on social media, what to say and how to say it. Most of my friends know her (and are also fb friends with her). Reaching out to old family friends & acquaintances individually feels awkward.

I don't want to wait for her to pass away before our friends know that she's sick. We're facing the hardest year imaginable. She and I could both use some extra prayers, love & support. 🥺

Thoughts?

Did you share this online?

What did you say?

If possible, copy & paste your message.

How was it received?

How did it make you feel?

Sorry, lots of questions. We've never known anyone with ALS.

As always, Fuck ALS.

Did you or your loved one live long enough (without a trach) to need a wheelchair?

My mom has Bulbar Onset ALS. Her speech is extremely difficult to understand, just got a feeding tube (still tries to eat & chokes) and respiratory is <40%. She's still mobile so she hasn't really mastered eye gaze on her tobi.

She has some weakness in her limbs and is exhausted but can still walk, drive & text.

I've been reading ALS forums to learn as much as possible from what people ask & share. It seems like some people wake up and can no longer walk, some pass away before ever losing their ability to walk. It also seems like it can take months to get a custom wheelchair.

I don't know if I should be working to get her house accomodated or if she may never make it that far.

She's knows that she has ALS but has been in denial about the reality of the situation. I know it's upsetting so I tread lightly and avoid unnecessarily upsetting her.

I'm her person, her only person. It's my job to think about and prepare for the realistic, not-so-distant future.