I've been meaning to give an update and have some time, so here goes.
First, another grateful thanks to everybody here for being so supportive with words and $. One of the most amazing things about this illness is it's opened my eyes to the goodness and generosity of my various communities - internet, defense bar, law enforcement, people I grew up with, people in my town. It's been overwhelming, sometimes literally.
A lot has changed but a lot is still the same since my last update. Physically, I've continued to deteriorate slowly. I now need a cane to walk anywhere, and sometimes that's not enough. I'm thinking of moving to a "Rollator" which is a four-wheeled walker that also has a seat when you need one. Mentally I really don't want to move to that since in my mind those are strictly for old ladies. But it seems inevitable. I also walk MUCH more slowly. I now use flexible orthodic braces too - they have a plastic sole that goes under the foam insert in my shoes, and then firm plastic bars that run up my ankle and strap around my calves. I've only had them for a few days but they keep me more stable, keep my toes lifted so I don't trip as much, and even have a little bit of bounce to them so I use less energy walking. The downside of the braces is it takes even longer and is more tiring to get dressed in the morning. In fact, most things take longer.
The other physical difference is I feel my arms and hands weakening. I drop things frequently. Typing is becoming more difficult. I've made a few short attempts at using voice recognition software but haven't given it enough time yet, so I'm not sure how that'll work for me. I also plan on doing voice-recording soon so that my digital voice is still available when/if my real voice goes.
One awful thing I've been having to come to grips with is that certain things are just gone from my life. My hobbies and favorite pass-times are watching my kids sports, playing sports, working on my aquarium, playing guitar/drums, singing, hiking, and body surfing. Other than watching my kids' sports, I will never be able to do any of those the same way again. I can't hike. My legs won't kick in water and I won't be able to stand in waves, so I can't body surf. I can't hold chords or move my hands or feet quickly, so playing instruments is becoming more difficult. My voice can't reach or hold notes that used to be no problem. I can't carry water around to clean my aquarium the way I'd like.
Most of these things don't impact my daily activities. On a moment to moment basis I can accept all of them and not be upset. It is what it is.
But sometimes when I have time to reflect it creeps in that so many of the activities that make life great are just gone. The thought that I'll never run again is simple, but sad and deep. It sucks.
On a positive note I can say that my wife and kids continue to be amazing. I spent a lot of this morning thinking about my 15 year old (16 on Saturday) and looking at pictures of the two of us. I got myself pretty upset and ended up texting him a bunch of the pictures. From class he texted back "best 1-2 combination ever." I wrote back that I was thinking about him and how much I loved him and how proud I was. So then he writes back "Love you too dad, many more of those pictures to be taken."
Last week I had a bad fall in the kitchen when my dog walked under my feet. I fell hard, hit my back on a door frame, and had the wind knocked out of me. My 9 year old saw and was pretty upset. As I lay there before getting up my 15 year old laid down next to me and calmly started just joking around, making both me and the 9 year old feel instantly better. He's never seen me or my wife do anything like that - it's just instinctual, which is amazing.
I think that'll be all for now
-randall