At the end of ALS awareness month I did a little social media Q&A and thought I would share it on here as well. Feel free to ask additional questions in the comments.
Looking back, were there signs that you wish you’d known about sooner? I feel like you guys caught things pretty early.
His first symptom was slurred speech. We definitely caught it early to the point that even in September 2022 (symptoms started January 2022 but only noticed it fully around March 2022) his doctor said he wasn’t far enough along to fully say it was ALS but he believed his symptoms progressing would be the ultimate determination in his diagnosis. By October his fasciculation (muscle twitches) and jumpiness of his muscle reactions on top of all the tests coming back negative were enough for him to diagnose ALS.
How am I doing?
How am I doing? You know, thats a hard one to answer. As well as I can? It’s a constant mental struggle to stay present for me and not see him missing in our future. It’s constant mourning while wanting to enjoy life with him at the same time. The workload side of it is starting to creep up but isn’t exhausting yet as I’m sure it will be in the future. Work is actually a great distraction for me and helps me feel accomplished. Little things like vitamins and skincare are my go to for self care at the moment. Once we are living with my parents in our new house I think it will be easier for me to take rest days.
Is Dirk still working FT or PT?
He is still working full time at the moment and just planned for his last day to be sometime mid-July. His company has been AMAZING in all of this and very supportive. They’ve gone above and beyond to make sure we are cared for (he got a promotion & raise a few months ago and they’re going to help with medical costs even after he stops working). His work is all remote so he works from home and has very few meetings – if any mostly with his direct boss. He can type most of what he needs to communicate. It’s his hands slowing down and getting stiff that is what is making him stop working. We’ll transition to disability here soon. With the way disability/medical insurance works he can’t go down to part time otherwise he would probably have done that already. It’s kind of an all or nothing thing.
How are his spirits?
He’s surprisingly more upbeat than I think he’s ever been! Haha We always joked he was the downer and I was the uplifter in the relationship. But he’s finding ways to find joy and laugh at it all. He’s very patient and doesn’t get frustrated when his body won’t let him do things. We try to keep something constant to look forward to. The new house is a big one. We are currently in Hawaii and trying to keep little trips on the horizon.
How much do the girls understand?
Elizabeth being only 19 months doesn’t know anything. The only thing we have noticed is she doesn’t respond when Dirk uses his phone to talk. She doesn’t recognize that its him talking and just ignores it.
We haven’t had a conversation with Adeline yet besides to be more careful around Daddy and that he takes some medicine and uses his phone to talk sometimes. She loves when he uses his phone to talk and knows its him. But she’s smart and she’s said things about daddy being sick and even had a dream about it that we talked about. We will sit down and talk with her soon about what’s coming and have been given some good resources by the ALS association on age appropriate conversations..etc.
How can your online community support your family?
Lots of prayers for a slow progression and that his lungs wouldn’t be affected and he wouldn’t get sick or injured. Everyone has been so encouraging.
How can someone support a friend who has someone close to them diagnosed with ALS?
Let them know you’re there for them if they need it and give specific ways you would be willing to help. It’s hard to ask for help. But if you’ve offered to make a meal, play date with the kids, drive to an appointment, mow the lawn…etc it makes it easier to call on people for those specific things since they’ve offered. In early stages of ALS there isn’t much need but the need will continue to grow and physical support will become greater and greater. And keep offering. One day it might not be applicable but it might the next.
But for someone farther removed like someone like my mother or a sister of Dirk I’d say give them an outlet to talk. But could still go through them to offer things like meals to the family with ALS to help lighten their load as they are likely the one immediately helping them too.
Are the girls (or will they be) in any sort of kids’ therapy to help them process what is coming?
To be honest, talking about the girls is one of the hardest parts of this and so we haven’t fully talked through what our plan is with them because we both get so emotional. But once we have moved into the new house and are settled I imagine this will be one of the next steps.