My ALS Progression May 2026

Añadido: 2026-05-09

[00:00:00]Oh, hello. Hello.

[00:00:03]So, it's been a minute since we posted anything. I I kind of made mention of that a couple months ago. As long as I have ideas to post, I am more than willing to post them.

[00:00:13]Um >> [snorts] >> if I don't, then we're going to wait till we have something to post about.

[00:00:22]Um also, a few months ago I did a progression kind of just update showing where I'm at. And I am very slow progressing, so I don't feel like doing that every month is beneficial. Uh I want to say it's been about 2 and 1/2 to 3 months since I've posted that, so I figured that like a once a quarter thing, I feel like that's a good Yeah.

[00:00:47]good thing.

[00:00:48]Um Not a lot has changed since the last video.

[00:00:52]But uh I have noticed some things.

[00:00:56]So, we'll get into that and go from there. So, yeah. Do you have anything?

[00:01:03]Nope.

[00:01:04]>> [laughter] >> So weird. Uh okay.

[00:01:08]I don't know. Where Where do we start? I guess we start from the head to tail.

[00:01:12]Mhm. Um face, anything with your face my face?

[00:01:19]We'll do you We'll do it from what you've seen and what I've seen or felt um and things like that. So, Feel like voice is the same? Voice is the same even though everyone doesn't agree.

[00:01:36]You thought that was funny?

[00:01:38]How do I what It like I don't know. Maybe I'm too close to it.

[00:01:42]>> As I'm speaking with everyone, I think it's really and I'm not trying to like not hide stuff or anything or you know, if I don't see it, it doesn't exist type thing. Mhm.

[00:01:59]But honestly, like listening in the videos, I do hear it at times.

[00:02:04]But I think for the most part, like here's uh speaking just face-to-face with people, family, friends, work, things like that.

[00:02:15]I don't hear it, but in the video I do.

[00:02:18]So, that's me. I don't.

[00:02:20]>> Um But [laughter] But I don't think that's really the ALS itself progressing. I think that's just I I have a very lazy way of speaking.

[00:02:36]But anyway, um for me, um I don't know if I've talked about this in the past, but like fasciculations, the muscle twitching or tremors or whatever you want to call it.

[00:02:49]Uh I'm feel like I've talked about it in my eye, like my eyelids and things like that.

[00:02:54]>> Mhm. I haven't felt those in a minute.

[00:02:57]Um I did a short on the fasciculations in my neck and I haven't felt those in a minute. So, I don't know if that's the medication kind of keeping things at bay or if it's just not progressing there anymore, I don't know. So, Do you notice a difference? Is it Radicava?

[00:03:19]The Radicava is the liquid expensive one.

[00:03:22]>> Do you notice a difference when you're on your like 2 weeks off?

[00:03:25]I did when we first started taking it.

[00:03:29]Like I felt it maybe it was just in my head again.

[00:03:33]Uh like while I'm So, the Radicava uh is one of the medications I'm on. It has a very weird weird schedule. scheduling um where it's you take it for 10 days So, you take it for 14 days, but it only lasts for 10 days, so you got to take it 10 of the 14 days. Yeah. And then you're off of it for 14 days and then you just keep rotating like that. Um I feel like and maybe I was just in my head a lot at the beginning of taking it. By the end of the 14 days not taking it, um which is really like 17 days not taking it because I just do the first 10 days and call it good. Mhm.

[00:04:20]Um I felt like those fasciculations would come back more and more.

[00:04:27]But I don't feel like that and it's been I guess it's been a week since I've taken my last dose of that.

[00:04:37]And I don't know. Nothing's progressed or anything from there. So, >> Yeah.

[00:04:44]But yeah, so the fasciculations in my neck that one video the little short that I posted was the last time I've had like that big of one in my neck.

[00:04:55]Um I felt how I have felt them in my cheek. I have felt them in my lip.

[00:05:00]But again, that's very few and far between that I don't know.

[00:05:07]But yeah.

[00:05:09]Um as for eating and drinking, I have not had a problem with.

[00:05:15]Um Able to do all that without any effort. So, yeah.

[00:05:25]Without any effort. I don't know. Like without I don't struggle. Yeah, no struggle.

[00:05:31]I guess the only thing that I've noticed that like struggle swallowing would be like if I'm eating like a gummy candy or something.

[00:05:42]>> Mhm. Like I feel like that gets stuck in my throat and I don't know if it's just because of what it is or if it's like the throat muscles weakening. Don't know.

[00:05:51]But yeah.

[00:05:53]>> Who's to know?

[00:05:54]Um Yeah, and then going down my body, we have my arms.

[00:06:02]Um Still able to I I'm obviously getting weaker in the fact that I'm not working out. I'm not uh overexerting myself when I don't have to. So, obviously there's going to be some weakness there, but as any abnormal weakness, I haven't noticed.

[00:06:28]Yeah. So, I was going to say it's hard to maybe judge it because you don't really lift things.

[00:06:33]>> Yeah. Like if you had a job that required lifting Well, >> heavy things or something, like I think you'd notice where like, "Oh, I could lift 50 lb and now I can't." Or, you know, but like whatever. Yeah. You can still pick me up. I still pick you up. I can still chase people down and Yep.

[00:06:53]>> [laughter and snorts] >> Uh that was funny.

[00:06:56]It's not a joke.

[00:06:57]>> Did you do that recently? Yeah.

[00:06:59]Chased him down and I let him know that >> Oh, that's right. dying fat guy caught him.

[00:07:07]>> [gasps] >> You're so funny. I know. Uh that being said, so uh I know we've talked about it with the doctor and all that. I really am trying to get back to at least swimming doing that. Just aerobic, just get your heart rate up to kind of keep that healthy lifestyle, but not overexerting myself.

[00:07:26]I'm trying to do that. I don't want to go running because like it just that impact is hard on your body anyway. So, I figured swimming with a low impact is going to be nice.

[00:07:40]I just got to find the time to do it.

[00:07:42]Um But I have some changes coming up that I will have the time to do it. So, yeah.

[00:07:51]Um But yeah, arms still full range of motion.

[00:07:57]Um Mhm. Can lift everything.

[00:08:01]And yeah.

[00:08:02]Um the one thing that I have noticed progress and I've talked with my work about this and things like that is kind of weakness in my hand and not my entire hand, specifically my left pinky. I get that like that sounds like nothing and especially for such a crappy of a disease that people are losing like full function of major muscle groups and things like that very fast. I am not downplaying this at all.

[00:08:33]I am I am very aware of how fortunate I am um with how slow this progression is. And aside from being misdiagnosed or a cure coming out, slow progression is what we have been praying for and asking for.

[00:08:50]Uh and so I feel very blessed about that.

[00:08:54]Um So, my pinky, that's I I was scratching the back of my head one day and I noticed I don't know if we're going to be able to get kind of what this [snorts] does on camera is like if the nail didn't catch just right, it just started to drag.

[00:09:13]Okay. Um this is the best way we've figured out how to show it. Um so, it's this pinky.

[00:09:21]My right hand doesn't have a problem, so like it's still I don't know. Ooh, that's a good angle. Good angle. Um Just like you can keep your fingers curled.

[00:09:31]Yeah.

[00:09:32]But if you watch the pinky on my left hand, um if it you can see how that just starts to drag. Like even if I have to get that nail on perfectly, um Let me trade sides real quick.

[00:09:48]>> Okay.

[00:09:50]Does that So, you can just see how that pinky just starts to It doesn't have that strength to just kind of keep but once that friction starts it just kind of starts to drag. So that's one thing I've noticed.

[00:10:05]So yeah, so just that weakness in my left pinky.

[00:10:09]It just starts to drag is what I've noticed.

[00:10:15]But yeah, still able to move it, function it, still able to basically [snorts] all my everything I need to do for work, things like that isn't affected. It's just literally that weakness coming in.

[00:10:32]I know we showed the atrophy in my hands last time. We can show that again.

[00:10:38]We have Carissa here this time.

[00:10:40]Not that she's big and bulky or anything but she does have a little more padding and stuff on her hands compared.

[00:10:49]So. Padding. That's [laughter] what it's called. I know. I was like muscle and you're like padding and I'm like oh. So do we want to show it flat or do we want to just hold up hands? Just hold up hands?

[00:11:00]That's fine.

[00:11:00]>> how it looks.

[00:11:01]>> Okay.

[00:11:02]So.

[00:11:05]We're going to I don't know what we're doing. So um you can see just basically those muscles, tendons, whatever they are throughout your hand.

[00:11:17]You can see those ridges.

[00:11:20]Um How is yours? Oh, yours got it too.

[00:11:24]Maybe that's not the best.

[00:11:27]>> That's not the best. Dang it.

[00:11:29]>> Those are just my tendons though.

[00:11:30]>> Yeah.

[00:11:31]Um so the big one on my hands is like the muscle. Mhm. Uh through the webbing in between your thumb and your index finger. Um Yeah, I I don't know.

[00:11:47]You you can see that muscle on her hand.

[00:11:50]>> right there. But with mine it's Maybe I can get a shadow of it going that way.

[00:11:58]Exactly.

[00:11:58]>> see how it's just very deep. Uh same with the padding on my hand.

[00:12:04]Um Like over there. Right there.

[00:12:07]>> Like I always notice it's pretty deep like right here and then he has no padding.

[00:12:12]>> You can also see that knuckle on my thumb on the inside. So.

[00:12:19]Yeah. Right there. [snorts] Like there should be padding right here but there's not.

[00:12:26]Uh same for both hands.

[00:12:29]So.

[00:12:30]Um yeah, that atrophy kicks in. Kind of sucks.

[00:12:35]Um but we live with it.

[00:12:40]Um going down my body so breathing, breathing's fine.

[00:12:44]Nothing labored, nothing out of the ordinary and things like that. So.

[00:12:51]Super fun. Super.

[00:12:54]Um yeah.

[00:12:57]Legs getting into my thighs.

[00:13:01]Uh The those the fasciculations are there.

[00:13:06]I again maybe I'm just getting used to it and I'm not feeling it. Do you feel them?

[00:13:11]Because I know In your legs?

[00:13:14]>> Yeah.

[00:13:15]Like have you felt them recently? I don't feel like I've been like Maybe you're getting getting it used to it too. I feel them in your arms all the time.

[00:13:25]Like anytime I'm close to you or cuddle they're always there. You're so weird.

[00:13:32]But I'm your weird.

[00:13:34]I'm like seeing if I feel them right now. But yeah, I don't notice them.

[00:13:38]They're not consistent like his arms are.

[00:13:41]I just feel like it depends on the day.

[00:13:43]Yeah, I I don't know. So maybe it's just that I am getting used to them that I don't feel it.

[00:13:51]Um as for the ones in the neck, those ones it's weird because some of them they come and you feel them big time. It's crazy. Like if I'm wearing a shirt you'll see it through my shirt and like we were with my siblings, my sister was like "Hayden, I can see that through your shirt." I'm like "Thanks Lindsay, I know. I'm aware."

[00:14:19]Goodness.

[00:14:21]Bless your heart.

[00:14:24]Yeah, I don't know. I don't like talking about it when I don't have to. Like I don't I'd rather not think about it but it is what it is.

[00:14:32]I guess that's my hesitancy with it.

[00:14:35]Um but yeah, the fasciculations in my leg I again probably just used to it. Don't feel them as much as I used to.

[00:14:46]Um It's like just sitting here with my hand on your thigh I felt very faint ones but they're not big. Your hand is freezing.

[00:14:55]>> Uh-huh. Um so let me put this Oh, no, down. Down.

[00:15:06]Okay.

[00:15:08]So yeah, um I don't think we're going to get any thigh ones. I when I do get it I see it right here and I can feel it kind of on the top of my thigh.

[00:15:20]Um I have felt them in my shins. I have not felt them in a minute.

[00:15:24]Um as for feet again no feet finder pictures please.

[00:15:32]Uh Unless we're getting paid.

[00:15:35]>> [laughter] >> That's funny.

[00:15:39]Um we're going to do all the movement with my left foot.

[00:15:44]So I'm still full range of motion on my left foot. Right foot's a little tender right now.

[00:15:51]Um I I'm sure you can't really see but that right toe big toe does not want to lift up too much. It is very tender.

[00:16:00]Um we were at work and we were going around so the canyons get closed when it starts to snow and they don't open up until late spring early summer and we were going around one of the winter gates >> [snorts] >> uh cuz we have a key to it and as we were doing that as I was opening up the gate they have it's a big steel cylinder that they put into the ground uh to lock it in the place so vehicles don't go through it or around it and as we were opening that um that steel pipe moved and landed right on my foot.

[00:16:47]I'll put it some of my bruising pictures in. It hurt so freaking bad and the worst part is like what you want to do is just like you want to cuss or yell or do something but we had some lady walking up "Oh, are you guys opening the gates?"

[00:17:05]and I'm just walking off just pissed just mhm.

[00:17:10]And then it was fine and I felt like it was getting better and then I went to my mother's house and I stubbed my toe on the end table and it has been very angry with me ever since and ended up going to urgent care to get x-rays. He said it wasn't broken. I don't think he knows how to read an x-ray. So.

[00:17:30]But I digress. It still feels broken. It definitely felt broken. It it's now just very tender to touch.

[00:17:39]So I just kind of pat it up and put socks on but other than that we're good.

[00:17:45]>> [laughter] >> But yeah. Um that's kind of the progression we're at now. Again, I I get other people that are going through this or progressing a lot differently than I am and most are progressing a lot faster than I am.

[00:17:59]I'm sorry that that is happening to people. It sucks. This disease sucks all in all.

[00:18:08]Uh no matter how fast you're progressing.

[00:18:12]And one of the things that was told to me and I don't think I made mention of it to you. Maybe it was. I don't remember.

[00:18:25]But someone had said the thing about ALS is you're either going to die quickly and painfully or die slowly and painfully. I'm like that is a great outlook. Thank you for that.

[00:18:37]>> horrible. Um so it sucks regardless of how no matter how fast you're progressing but I am going to count my blessings as the slow progression. I'm very grateful for that and it's weird to say um but again something that I've looked at through every uh ever since getting this is finding the best in the situation and focusing on the good and not the negative.

[00:19:08]So and that's why I'm able to sit here, smile, laugh about it and make jokes and um things like that. So that's my suggestion to all y'all is just find the best in your bad situation, focus on the good and you know >> [snorts] >> believe in good things to come.

[00:19:32]You have anything else you'd like to add?

[00:19:34]No. Okay, thanks for being here with me this time.

[00:19:37]>> Just your sidekick. Um okay.

[00:19:41]Thank you. Y'all have a wonderful day.

[00:19:44]Bye.

[00:19:45]>> Bye.