5 months since diagnosis

[CJV]

My first post as a PALS.
5 months in, navigating the crap.
My son for Mother’s Day got us a mother/son Viking cruise to Vienna. I was a musician my whole life and I’m watching my voice go and my piano ability go as my arms go first with this insidious disease. He decided to check off a bucket list item for me. I just hope in a month I can still eat drink, and more importantly, dress myself so as not to ask for help from my 37 year old son.
Trying to maintain dignity as long as possible.

We know the drill, my first husband died of ALS at age 53. Hoping to have some good conversations with my kid as he navigates having two parents with ALS.

 

[AlDowns]

Your son certainly loves you and knows the journey ahead. Yes, maintaining our dignity as we see the disabilities grab our frame. Enjoy the moments as best you can. But I don’t need to say that. You know the drill.

 

[KimT]

I'm so sorry you were dx with ALS. A couple in my hometown both had ALS. Their children reached out to me when I was first diagnosed.

I can no longer play the piano. I wasn't a professional musician but it still makes me sad.

Make those memories with your family.

Regarding caregiving from family. I was a caregiver to both my parents when I was in my 20s and 30s. It was an honor. I've learned that children feel helpless unless they help.