Hello, Reader-land. I thought I would share with you how the medical side of things is, since I tend to not share that very much. Truth is, I don’t like to. SOUND ON!
Why? Because it’s selfish. But since I can’t get out much, and my previous post highlights how hard it is to communicate, here you go.
First, the Boston stem cell trial is over. Whatever I got didn’t do much of anything for me, so I hope I got the placebo. No more spinal taps, because I am a wimp.
The bad news is that since I did a stem cell trial, I’m now excluded from almost all other drug trials. So, if something new and lifesaving comes to trial, I can’t have it, unless I can invoke the right to try stuff. The good news is now I can try off the wall stuff that might help, like fecal transplant ( I’m just kidding, they already debunked that, plus, ew.) I encourage everyone to go to ALSUntangled, online, to look at what is being discussed and what doesn’t work.
Third, I’m less mobile. I can shuffle around the house, but I can’t hold my head up, or stand for too long, as I use my glutes and hamstrings to keep me upright, and these are what hurt like hell, all the time, even with painkillers. I also have way less strength in my arms. My left arm started it, but my right arm is getting there too. This means texting and typing on the phone are extremely difficult.
Fourth, I’ve put beer in the hose, and I am nourished. When the time comes when I can’t drink coffee or beer, in the ‘ose it goes! I am getting nourishment. I’m probably more tired because I don’t have coffee before mass.
Fifth, it’s very difficult to talk. Please talk to me, but realize I’m trying to respond and it takes a while. This will be equally frustrating for you and me, but I am still here and wish to dialogue, not be spoken around. And if I say never mind, it’s not your fault, I’m just tired.
Sixth, Mel is Wonder Woman. That sums it up.
Theventh, we are going to tell the kids soon about how serious it is. They all worry about me and take care of me.
Eighth, heck I don’t know! Did I miss anything? You don’t need to hear about my bowels or bladder, right? My head?
Oh, I know. Here is a snippet of my life. Mel made Delicious steak last night, at my request, and I gobbled up the little pieces. Save one. One got stuck in my throat, and I was trying to get it out. But I can’t hold my head up, so in the course of my efforts, my head fell. The steak came out of my throat… And right up my nose. You ever try to blow a chunk of steak out your nose? If yes, then you’ve experienced a little bit of ALS life.
So there you go, medical update. I go for my clinical visit on Tuesday where I will address my questions and concerns to the doctors. Things like pain or sleeping, etc.
I love you all, Reader-land, for sticking with me this past year. Tomorrow is a big day, and the whole reason I am updating today. Just remember, play the video with sound on!
PS, ain’t no way that steak was coming out my nose. That must be what childbirth is like!