5 months since diagnosis

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CJV

Member
Joined
Sep 22, 2021
Messages
15
Reason
PALS
Diagnosis
01/2022
Country
US
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

Member
Joined
Nov 10, 2021
Messages
20
Reason
PALS
Diagnosis
12/2021
Country
US
State
MN
City
Lakeville
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

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,365
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
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.
 
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