CALs Intro

[nkrohan]

I joined this forum awhile ago but am just seeing the CALs thread so thought I would reintroduce myself here. I'm another Nikki. I'm 37. Two kids - 9 and 11. My husband was diagnosed with ALS in March 2018. He is what I would call slow progressing, but then again, I have met people on an even slower trajectory so its hard to know how to define his path. He is still fully mobile and independent, he is just very weak in his arms and hands, so buttoning his pants, starting the car, and opening things is hard. He also has some slight slurring and weakening in his mouth and face. We have seen multiple people in our local ALS community who were diagnosed around the same time as him pass away, so we feel blessed that we have had this chunk of time to do some traveling and living. Honestly, I thought we would be where we are today a year ago - and thankful for the amazing support we get from our community.

All that being said its still an emotional roller coaster and I am dreading how he/we are going to cope with the loss of his independence. I feel like these forums give me a place to help prepare for our future (he's not a planner and is somewhat in denial) and know what types of things we might be up against.

 

[lgelb]

Welcome, Nikki. Feel free to chime in any time.

Denial of the losses to come is the only way to cope, for some. Where you see opportunities to gather ye rosebuds in anticipation of those losses, just find ways to take them, together, as you already are.

Best,
Laurie

 

[MarieLaure]

From personal experience and that of people on the forum, one thing I found most disturbing is the discrepancy between the way some pals see the evolution and the way pals do. Both are right. Yes you need to plan ahead ( cals) and yes you need to ignore reality at times (pals). For instance yesterday I bought my dad one of those old fashioned bells for bikes for his wheelchair. He liked it very much. Yet he said let me do it. He can’t move any part of his body except his head. It is thanks to the forum and love that I still put it in his hand knowing he could not action it. My worry was : what would make him sadder : my telling him he couldn’t or his realizing he couldn’t ? As usual, gather rosebuds, he sang his way out of the problem. This forum is great because here everyone understands.
Good vibes

 

[KateEmerson]

Welcome Nikki. My husband had a strong denial system which I think helped him cope with his losses . It definitely put more on me in terms of planning but I was willing to take that on for him. Something that helped me emotionally was to try to intellectually look at the future in order to plan. At the same time try to stay in the day/ moment emotionally, try to focus on what he could do and how we could make it the best it could be. Kate

 

[vltsra]

Hi Nikki, welcome. My PALS is also a slow progressor. He is often in denial and says things like he wants to go surfing again. I do think it helps him to cope with what must be terrifying from the PALS point of view. It frightens me terribly to see what's happening to him from the outside, so I can only imagine how he must feel.

My PALS did have a bit of progression starting in March; before that he was on a plateau and then suddenly it seemed to speed up. I had to very quickly get things that he needed. I had a parade of people coming through our house telling me what I needed to do and it was overwhelming. So I had to prioritize things and determine what he needed most in order of urgency. I think it's hard to determine what those things are going to be for your PALS, but you know the sorts of support he will need and I've gotten a lot of help from other forum members. Right now I can say that the things I am doing for him (range of motion, bipap, cough assist, help with bathing and dressing) are not as difficult as I had feared. Laurie's advice is lovely. We all dread the future if we think about it too much so be prepared but try not to spend too much time looking ahead.

V