Not dead yet... just busy

So, it's been a while... hasn't it?

It's ok, I've just been busy with other things... work, medical stuff... even just chilling out. I haven't forgotten about this blog... just took a break. So, let's catch up...

ALS - I had a checkup in San Antonio on January 06. For the most part, not much had changed over the last 4 months... or so I thought. Overall, strength and mobility didn't seem to be much worse than in August. But... my pulmonary numbers were... NOT great. The measurements of my exhalation and inhalation strength were significantly down from my previous August visit. That was a gut punch. I guess I suspected as much since coughing has been a bit more difficult... it means my diaphragm and torso muscles are weakening... like everything else. But, getting hard numbers like that... it's taking me a while to mentally adjust. But I did volunteer for a simple observational study... they just need records, interviews / questionaries down the road, blood samples... and my brain when I'm not using it anymore.

Recently, a clinical study opportunity presented itself... one that I was really excited about... but I have to turn down because it can only be administered in Boston over a 6-week period, with 3? more trips after that for follow up exams. Logistically and financially, that's a no-go for us. Rebecca can't possibly take that much time off, or work all that time remotely, or be away from the kids that long. Funding something like that, even while working, would be tough. And it would be during the possibly coldest time of the year in Boston. So many logistics for housing and transportation... ooof. Oh well. Here's hoping something else I CAN more easily participate in will come along soon... I am a willing guinea pig/lab rat/monkey/specimen.

Home - As I physically fade, it does put more burden on Rebecca and the kids to help me do so many stupid little things I took for granted in doing myself. I can shuffle around with my crutches most of the time, but that make doing anything else more challenging... I kinda need a trained service monkey... but I don't think Circe would like that at all. Maybe a service monkey robot? Oooooooo... now THAT's the kinda thing Boston Dynamics and others (but fuck Elon and his bullshit) should be working on. Every day... or week... we're finding new ways to simplify or make adjustments to make things easier... for me especially.

I'm also still working on decluttering and offloading things I don't need, or can't use, anymore. Still a lot of stuff to find better homes for.

Work - I was able to pick up a significant new contract through 2026 and I have a couple more to finish up from last year. I have a chance to stay as busy as I want... and am able to... which is a financial and intellectual relief. My workload is manageable and the new work is interesting. The new client is very pleasant to work with, as well. In light of my declining condition, I need to be better at managing how much time and energy I spend working. As I've said, you can't afford to die and can barely afford to live in this economy... especially in Austin, TX.

buildingSMART - I've been curtailing my volunteer involvement... this time, voluntarily... with the organization I've been involved with at different levels, roles, and intensities, for nearly 20 years. There's been a LOT of turmoil over the last 5 years due to the dumbfuckery of a few individuals which has caused a great deal of confusion and grief. I have to trust that the people I do still trust can sort it all out, soon, and get things moving in the right direction again. I still have things to say, but I'll need help in the doing part.

I'll work harder on being more productive with this blog, too. As one gesture for starting the new year, I'm going to make all my 2025 posts public... so anyone can read them. Maybe this will help direct more people to it and decide on being patrons. For all of you already here... thank you very much for your support.