How I stay relatively positive after recent dx

[Sppspp10]

This is to share my strategies for wellbeing after my October dx.

I find that searching the internet for all things ALS results in a million testaments like “this is the cruelest disease”, “It’s horrific”, “It’s the worst disease ever”, etc. and it gets really REALLY depressing. And I honestly don’t find it helpful. So, I tend to skim over content that carries that tone in favor of uplifting examples of PALS and CALS *LIVING* with ALS. (After all, we still have to live right? Why pre-die when ALS already accelerates the end!) Short youtube videos, for example—searching “living with als” yields good videos. Seeing people smile and go about their lives through the phases of ALS lets me think what about I CAN do.

I also try to set my intention for the day. Yes this sucks. Yes my body is reminding me constantly that it’s trying to DIE. Yes I grieve deeply for my children and husband. Nonetheless, how do I actually want this day to go? Sometimes I just need a few hours feeling sorry for my situation. But often I find that asking myself how I want my Tuesday to look lends itself to choosing something kind of productive (like making how-to videos for my kids, or prioritizing stretches/exercises), and often I realize I want to do something positive (like dragging my family to Home Goods to buy holiday decor…i love xmas!).
Sometimes my brain feels exhausted by all things ALS so I set the intention to take a break from reading about ALS that day. Intentions bring back my sense of control.

I also like to end my days listing things I am grateful for, but ALS version. Like I am most grateful if I was able to be a mom that day…i was able to help my kids get ready for school. I was able to drive them. Not such a bad day after all, despite having jelly thumbs!

I still have deep pits of despair of course. Spontaneous sobs. ALS took away a lot of control (over my hands and my destiny) but I like exerting control in these other ways. Anyway, I just wanted to share what has helped me. Wishing you all a happy moment or two.

 

[davemclaughlin]

Great attitude! I was also diagnosed in October 2024. I’m taking the route of being positive through this. I also found EverythingALS org and some great people there. The disease sucks but the people you meet and the changes in your perspective on life are priceless! Keep positive my friend and always remember there are others experiencing the same. You are not alone in this journey.
David

 

[Sea]

You have a great attitude. Thanks for sharing.

 

[Nikki J]

There is a lot of toxic negativity in some groups for sure. I left a lot of social media because of that. Worse there is a lot of conflict between PALS/CALS who disagree. I have seen shocking personal attacks as well as what I call the suffering Olympics where people tell someone else straight out their ALS experience is not as bad as theirs. It seems like this is a fairly new phenomenon and it makes me sad.

It is important as you say to find joy and to live your life. It is also really important to step away from ALS sometimes and find a completely unconnected to ALS place to be whether online or real life

 

[DMP]

Hi All, thanks for this thread it is just what I wanted/ needed. I am newly diagnosed and try to now as much as I can do what I enjoy, find joy in with people I love. I do find this forum so helpful as I did when I cared for my Dad several years ago. It's a frightening journey for sure and so wise to say we need space away from ALS too. The wisdom of people here though is priceless. Thank you.

 

[KimT]

I find that I need to have some purpose. I helped organize a Facebook Group called Santa's Elves Use Amazon. I went through over 600 applications for people who need help to give their children something for the holidays. Most of them are on food stamps and Medicaid. Some have lost everything in the hurricanes this year. We've had applications from all over the US. We get sponsors (Elves) and the families needing help post their children's wish lists (we actually post them after making sure none of the items are over $15.). Then Elves (sponsors) choose a tag or more than one tag from one of our trees and sponsor that child. Most elves spend about $50 per child. I've recruited many of my relatives and friends to be elves and they are thoroughly enjoying it.

Last year we sponsored around 300 children and the pictures of Christmas morning some of them posted are so joyful and uplifting.

This year I went all in and did the application processing, recruiting elves, and sponsoring children.

Another organization I'm active in is Operation Christmas Cheer. We send cards to people who are lonely. Many have no family and are in nursing homes. When my brother had advanced Alzheimers, I put his name on the list. He loved the cards and got so much attention from the staff (VA hospital). Every morning, when the mail came in, staff would flood his room and help him open the cards.

 

[Lori1970]

That’s so wonderful… the world needs more people like you

 

[santimo]

I actually do something similar as OP in the sense of listings things I did during the day. It does not always work but at least it's something. I know this might be less useful once I'm less autonomous, but for the moment I take each small task as a great victory.