Your ALS Questions Answered...Again

[00:00:00]Oh, hello.

[00:00:04]We are up doing the same puzzle we were doing the last time.

[00:00:09]>> It's a hard one.

[00:00:10]>> There's so many pieces.

[00:00:12]>> Yeah.

[00:00:13]>> Anyway.

[00:00:15]Yeah, so I guess we'll just dive into it.

[00:00:18]We put out the post about some more questions.

[00:00:24]I am going to go ahead and lead off with this. So, we have been doing every about 500 subscribers.

[00:00:32]I don't know if we're going to keep doing that just depending on when that 500 mark is hit because I don't want I don't know.

[00:00:41]>> too close together.

[00:00:42]>> close together. We may do every 3 months or whatever thing like that with these.

[00:00:49]Like I said, we enjoy them. At least I do.

[00:00:52]I think you do, but So, yeah. So, sorry. I'm a little tired. I'm sure you are, too.

[00:01:01]She woke up super early for work, and then I woke up not long after that. So, >> And it's like 10:30 at night. So, >> Like that.

[00:01:11]>> Well, 10:16 17.

[00:01:13]>> 10:17. So, we digress.

[00:01:19]Yeah, so we'll just dive into the questions and go from there.

[00:01:25]>> Yeah, with Hayden's um fasciculation video, we got a lot of questions on fasciculation. So, we're going to start with >> Not so much a video. It was a short.

[00:01:36]I asked well, I swear.

[00:01:40]I'm just trying to help.

[00:01:42]>> [laughter] >> Doing my best.

[00:01:44]>> With Hayden's short, >> But I'm not short.

[00:01:49]>> Anyways, so I made There's a We're going to put all those questions together, and we're going to answer them.

[00:01:55]So, question is are your fasciculations 24/7?

[00:02:01]>> No.

[00:02:02]They come and go.

[00:02:05]I think >> I feel like your arms are 24/7.

[00:02:08]>> Yeah. So, I don't >> Like >> I I don't notice it too much anymore.

[00:02:15]Uh that specific fasciculation video I posted, it was on my right thigh and they were very like prominent, big. Those ones I feel. Those ones Yeah, but they're not 24/7.

[00:02:31]>> Those big ones, yeah, they're big.

[00:02:33]>> Yeah.

[00:02:33]But I mean throughout I mean I will have like just sitting here I'll see them and feel them, but nothing like on that video.

[00:02:43]That was a very exaggerated example of it, but yeah.

[00:02:49]>> Sometimes they're fun to try to catch on film. Like the one on his neck, he'd be like, "It's doing it's doing it." and I'd hurry and go over and try to get it and then it would stop like, "Oh."

[00:02:58]So.

[00:02:59]Yeah.

[00:03:00]Uh do your fasciculations hurt?

[00:03:03]>> They hurt.

[00:03:05]No, I wouldn't say hurt. I don't think hurt's right. They're They're not painful.

[00:03:14]They hurt in another way of it's that constant reminder of yeah, you have this.

[00:03:20]And that's what sucks. That's that's probably the worst part of it is just that constant reminder.

[00:03:32]So, in that way it hurts, but as for like a physical thing, no, it it doesn't.

[00:03:40]>> I kind of agree.

[00:03:41]When I see your fasciculations, I'm always like, "Oh."

[00:03:44]>> Well, and then when >> sucks.

[00:03:46]>> when people point them out, I'm like, "Yeah, they" Like I don't want to talk about it like in person.

[00:03:53]Um sitting down doing these videos, that's different, right? Because I'm in the mindset of talking about it, and I don't have an issue with that.

[00:04:04]Um so, I'm ready to have that discussion, but when I'm, you know, going throughout my day and so, "Oh, what's going on with your arm?" I'm like, "Yeah."

[00:04:13]>> Does that happen often?

[00:04:15]>> Uh I wouldn't say often, but it has happened.

[00:04:18]>> Mhm. I wouldn't like that either. I'd be like, "Don't look at me."

[00:04:22]>> So, [snorts] again, it's just that reminder, and that's what I don't like about it.

[00:04:26]But yeah, no pain.

[00:04:28]>> Do fasciculations tire you out?

[00:04:33]>> Um >> I've wondered this, too.

[00:04:35]>> Mentally, yes. Again, going back to that, but it's not even that. It I wouldn't say they tire me out.

[00:04:43]I can see the muscle fatigue.

[00:04:46]Um but like those big ones that I've shown in the different shorts that I've posted of the fasciculations in my arms, and my legs, and my neck.

[00:04:57]Um Yeah, they're big. If those were constant, I'm sure I would get exhausted.

[00:05:06]But where those are very sporadic and um so, like my my leg one that I just posted, it was a good two 2 and 1/2 days of pretty much that every 5 10 minutes.

[00:05:23]Um but yeah, since then, I haven't had it, so it's been a few days since I've had them. So, it's not really tiresome to me at this point. I can see in the future that it could be, or would be, or will be, but as of now, no.

[00:05:42]>> So, I was wondering like >> This is their questions, not yours.

[00:05:47]>> They could wonder this, too.

[00:05:48]>> Oh, then they should have asked.

[00:05:51]That's on them.

[00:05:51]>> Like, when you get like a Charlie horse.

[00:05:54]>> Okay.

[00:05:54]>> And you feel that like Like, I feel it for a few days afterwards. Is it similar to that? Not at all?

[00:06:00]>> No.

[00:06:00]>> Okay.

[00:06:01]>> So, that's another thing that is really hard to show. I guess it wouldn't be hard to show if it completely cramps up, but I do feel like my muscles are a lot tighter than they have been, and that may be uh because I haven't been stretching them and working them um as I have in the past.

[00:06:25]Um but yeah, so like in the middle of the night I'll stretch my legs or something.

[00:06:30]I can feel how tight my muscles are.

[00:06:33]Um but yeah, it's it I would not equate it to a Charlie horse at all.

[00:06:42]At least that's my experience with them.

[00:06:46]>> Do fasciculations affect your sleep, and how do you manage that?

[00:06:51]>> No. Uh the sleep is super like I'm it may just be me, but I'm super heavy sleeper as it is, so I don't notice. Do you notice? I mean, >> No.

[00:07:10]>> when I'm like passed out in the bed?

[00:07:13]>> No.

[00:07:14]>> Um yeah, I >> I was like deciding how you're asking that. Do I >> Like >> Like, do I feel them when I'm sleeping?

[00:07:20]>> Yeah. Like, if we're like spooning or something.

[00:07:25]>> I feel them, yeah.

[00:07:26]>> Okay.

[00:07:27]Like, if I I don't know. We normally don't >> Or if I lay on your chest right here if we're watching a show, like I feel it in your arm all the time.

[00:07:34]>> Yeah, but that's not really sleeping.

[00:07:37]I'm wondering if they go to sleep when I go to sleep.

[00:07:38]>> No, I don't think so.

[00:07:40]>> They go to sleep when I go to sleep.

[00:07:42]>> No, cuz I watch I can see them moving.

[00:07:45]>> they go to sleep and I go to sleep.

[00:07:46]>> You believe what you want to believe.

[00:07:48][laughter] All right, I think that was all the fasciculation questions.

[00:07:54]>> Awesome.

[00:07:55]>> Um have you began any specific exercise routines, PT, or taking any supplements?

[00:08:03]>> Um exercise routines, not at this point. I really want to get back into the pool and start swimming again.

[00:08:11]Uh my schedule right now is just a little hectic and I can't It's hard to either leave the girls here and go out and do that uh on the day she works or the days I work, it's hard to go out to the pool and then go to work covered in chlorine and uh things like that and get ready. So, as of now, I have not started an exercise routine. I really want to and I know I should. Uh nothing strenuous, just some good cardio to keep that going.

[00:08:45]Uh it's just finding that time and yeah.

[00:08:52]And then, what was the other part?

[00:08:53]>> Supplements.

[00:08:54]>> Supplements.

[00:08:55]>> Or PT.

[00:08:56]>> Uh no physical therapy.

[00:08:59]I'm still good. Can wiggle all my fingers.

[00:09:02]Um and yes, I know it does more than just your fingers.

[00:09:07]Uh and then supplements, I was just um told about told about this supplement that uh has been pretty heavily researched for ALS and ALS symptoms. Um and I am in the works of doing a little more research on my own before I start anything. Uh it's called L-serine. It's just a supplement, a dietary supplement.

[00:09:41]And supposedly it has some good effects.

[00:09:46]Um on your nerves or something. I don't know.

[00:09:53]I don't know. I'm not a doctor. Yeah.

[00:09:55]>> and I'm like, "Uh-huh."

[00:09:57]>> Um but it comes in like a powder form or a pill form. The sounds like the powder form is a little more pure.

[00:10:06]So, we're waiting to get that. I do have a couple bottles of the pill form.

[00:10:11]Um but again, I want to do a little bit more research just on my own before I dive into something.

[00:10:18]Um but yeah, that's the supplement route we're taking at this point. Other than that, the medications I'm still on are the Radicava and the Riluzole.

[00:10:29]And I don't know if I'm even saying that one right, but yeah.

[00:10:34]Super fun.

[00:10:40]>> So, this one's like a big question.

[00:10:42]>> I love big questions.

[00:10:43]>> And I want to preface that we are not doctors and I have copied and pasted from Google.

[00:10:49]>> I had a Dr. Pepper though.

[00:10:51]>> Oh.

[00:10:52]I drink one every day.

[00:10:53]>> So, you're a doctor.

[00:10:54]>> So, I'm a doctor.

[00:10:56]Okay. So, this person asked, "In my Google searches about other things that can mimic ALS like MMN and CIDP, how did the neurologist rule these out?"

[00:11:12]So, I hadn't heard of these. I don't know if you had, but I hadn't heard of these.

[00:11:17]>> I see CIDP I have heard of. Uh, the MMN I had not MMN I have not heard of.

[00:11:27]>> So, MMN for those that don't know, is multifocal motor neuropathy.

[00:11:35]So it's a rare slowly progressive autoimmune disorder where your immune system attacks motor nerves causing asymmetrical muscle weakness typically starting in the hands, wrists, or forearms. And the hallmark of MMN is a motor conduction block.

[00:11:54]So this test measures how electrical signals travel through a nerve. In MMN, the signal is impeded or blocked at a specific point along the nerve while sensory nerves remain completely normal.

[00:12:07]So ALS shows widespread What is that word?

[00:12:13]denervation?

[00:12:16]Sure. Without these localized conduction blocks. So like this one was never mentioned to us per se that they like ruled it out, but I'm sure they did in the background.

[00:12:28]Because >> So the way you get diagnosed with ALS is they There's no nothing that shows you have ALS. Uh there are things that will show that you not a carrier, but you're susceptible to it unless you have the uh hereditary form >> form >> uh of ALS. That can show that you'll have it.

[00:12:54]Um again, not doctors, not scientists.

[00:12:56]We don't know. This is just what we understand of what we've been told. Um So the way they determine ALS is they rule everything else out uh because there's nothing that's going to for sure tell you you have ALS.

[00:13:14]Uh so that's why we've done uh nerve conduction studies uh both upper and lower extremities.

[00:13:20]We've done MRI CT scans. We've done um other things.

[00:13:28]>> work.

[00:13:29]>> Blood >> work will show different things. So, like for Lyme's disease, that will mimic it as well. So, it has a bunch of Yeah, there's a bunch of different tests that I've already done that we continue to do.

[00:13:46]So, they continue to rule everything out. And what my main doctor, who's no longer my main doctor, uh said when we first started going to the ALS clinic was her job is to find anything else that it can be.

[00:14:04]Um and so, I know that they've looked into all the different options and we've gone from there.

[00:14:14]>> Yeah.

[00:14:15]Like an ALS diagnosis isn't given lightly or easily. Like it everything else is ruled out that mimics it.

[00:14:23]So, I know I see a lot of comments of people saying like, "Are you sure you have it?"

[00:14:30]And it's like, well, everything else has been ruled out that it can be, so.

[00:14:34]Yes.

[00:14:35]>> And that's the other thing that sucks with ALS is it's so different for everybody. I know we've said this in other videos is how different it is. So, the way I'm progressing is yes, an anomaly in its own, and I'm super grateful for that. Um but you can't just because I'm progressing one way and someone else is progressing another, um doesn't mean I don't have it or they don't have it or they it just it sucks.

[00:15:07]It sucks how just sporadic it is and there's nothing to pin it down.

[00:15:11]>> Yeah.

[00:15:12]So, the CIDP part of that question is chronic inflammatory demyelination polyneuropathy.

[00:15:23]And it's a rare autoimmune disorder where your immune system attacks the myelin sheaths that protect your nerves in your peripheral nervous system. It causes progressive muscle weakness, numbness, and loss lost reflexes primarily in the arms and legs.

[00:15:39]So, and this is also ruled out by symptoms like one of the examples was reflexes like patients with ALS exhibit the hyperreflexia so really dramatic reflexes.

[00:15:54]>> Brisk reflexes.

[00:15:56]>> Yes.

[00:15:56]And in CIDP, it says almost always causes hyporeflexia which is more weak reflexes. So, Hayden has very like if you hit it, it's like woo. Then I'm assuming in theirs it's more slow so it's going to be little.

[00:16:12]So, and then there's different things.

[00:16:14]I'm not going to read it all, you can Google it, but yeah, I'm assuming those were ruled out by our neurologist for those facts.

[00:16:23]>> Yeah.

[00:16:24]>> Assuming.

[00:16:26]Um have you given thought about having a Bible-based video about your favorite scriptures that you turn into turn to in moments of despair?

[00:16:40]>> Uh I have. I I've My main goal with those types of videos um religion and God and everything is such a hot topic and everyone's so deeply rooted in their own beliefs and um So, the reason I somewhat avoid it, I know I posted one that was strictly about my faith and the reason I have an outlook that I have.

[00:17:23]Um I I led off with that. Like I I didn't want any theological debates or anything. Those were my beliefs. I'm very set in my beliefs.

[00:17:36]Uh I feel like I have a great relationship with my savior.

[00:17:42]Um but I want to avoid the backbiting, the Bible bashing, the arguing. And that's why I've tended to stay away from that type of video.

[00:18:01]Uh or at least doing another one.

[00:18:05]But I would I'd be fine with doing it. I just It can create tension where tension is not necessary.

[00:18:15]Um but I do know who commented that and I will send you out uh some I'll just send you a personal message or something if I can >> Yeah.

[00:18:30]>> get that way.

[00:18:32]Um but yeah, I I I understand uh your struggle that you're going through and I am more than happy to help any way I can.

[00:18:43]Um This life's tough. This trial's tough. I don't I know what you're going through sucks, too.

[00:18:51]Um but it's easier with friends and family and it's even easier with belief in um God or savior and what they have done for us. So, yeah.

[00:19:08]That's where we're at with that.

[00:19:10]>> And even that person, if they don't know you have an Instagram.

[00:19:13]>> I don't know. I have an Instagram.

[00:19:15]>> on Instagram.

[00:19:16]>> Yeah.

[00:19:19]Yeah, do that.

[00:19:23]>> What is your thing at?

[00:19:25]HaydenALS, I don't know, something like that.

[00:19:28]>> It's >> It's there.

[00:19:29]>> It's linked to my channel.

[00:19:32]>> Did you ever travel outside the US? If not, would you like to travel I didn't write this very well.

[00:19:40]Would you like to travel like such as Europe?

[00:19:43]>> Uh we have tra- So, we went on a honeymoon to Cancun in Mexico, and then we've been on a couple cruises to the Caribbean.

[00:19:57]So, that's kind of the extent of our actual travels outside of the US.

[00:20:01]Um That being said, >> That's like the only Is that really all we've been outside?

[00:20:10]>> Yeah.

[00:20:10]Where else have you been?

[00:20:12]>> I don't know.

[00:20:13]I guess I thought >> A dog.

[00:20:18]>> A dog.

[00:20:19]>> Um Yeah.

[00:20:21]>> Yeah, I guess that's it.

[00:20:23]>> No, we So, there was a few things we talked about always wanting to do.

[00:20:28]Um she wants to go to Ireland and or Scotland.

[00:20:33]>> Yeah, like over there.

[00:20:34]>> Um some- I've always wanted to go to Germany. Um I I'm not a major history buff, but I do love uh like World War II history, and I've read a lot of books on different battles in Germany and things like that, and I always thought that would be really cool to go see and kind of I'll be a part of that history, but kind of be able to see where all that took place.

[00:21:07]Um so yeah, those are wants and wishes that we've had.

[00:21:11]Um I doubt at this point it's ever going to happen for me.

[00:21:17]>> [snorts] [laughter] >> Don't doubt yourself, babe.

[00:21:21]>> Uh but yeah, no, it's definitely a want, but I don't foresee it happening.

[00:21:32]>> You're a party pooper.

[00:21:34]>> So sorry.

[00:21:36]Um >> Let's see. What are some things on your bucket list?

[00:21:42]>> Some things on my bucket list.

[00:21:45]Um I don't know. We had the our one Make-A-Wish. That was super fun. That that hunt.

[00:21:52]>> was really cool.

[00:21:52]>> I really enjoy hunting.

[00:21:55]Um >> It's not for everybody.

[00:21:58]>> It's not for everybody. I get it.

[00:22:03]But I again, I'm not going out there just to kill things. I'm going out there for the experience. I love being out in nature uh and just having that kind of silence and uh being able to connect with the earth and with God and all we're given. So that's one of the main reasons I really enjoy hunting.

[00:22:28]Um and then the food that it supplies.

[00:22:31]Um but yeah, just the total experience is awesome.

[00:22:37]So I've told Carissa my my goal is to kind of make enough money to go back out to that the hunting ranch we were down to just to have that other experience and hopefully take my girls this time uh just cuz I know how much they would love to see the animals and be a part of all that. So, that's the goal right now.

[00:23:04]We're we're I'm working towards that.

[00:23:09]But yeah, it's >> Is there anything else?

[00:23:13]>> What else?

[00:23:15]Bucket list wise.

[00:23:17]We What else do I want to do?

[00:23:23]>> You wanted to go on another Disney cruise and we're doing that.

[00:23:25]>> Another Disney cruise. Really just making memories with our girls. So, like that's that's the biggest bucket list I could ask for is anything that I can do to give them some more experiences in life is would be well worth it for me.

[00:23:43]Um but yeah.

[00:23:47]>> No, I can't think of anything else.

[00:23:49]>> I don't know.

[00:23:50]All I can think of right now is like hunting trips. Hunting I mean even like fish like a fishing trip like up to Alaska or something would be sweet.

[00:23:59]Um go catch some salmon up there or halibut.

[00:24:03]>> That would taste good.

[00:24:04]>> That'd be nice.

[00:24:06]Um but yeah. I mean again, traveling outside and going to whether it be Ireland or Germany.

[00:24:18]I mean there's a few other places I'd love to go and look at, but those I think those are the big ones that come to my mind immediately.

[00:24:28]So.

[00:24:29]Yeah.

[00:24:31]We're going to find a jet.

[00:24:32]>> Find a jet?

[00:24:33]>> Yeah.

[00:24:34]>> Yeah.

[00:24:36]>> Add that to the list.

[00:24:37]>> Okay.

[00:24:39]>> [laughter] >> But like a real jet, not like some Cessna.

[00:24:44]Like a What's a real jet? Like a fighter jet.

[00:24:46]>> Oh, a fighter jet.

[00:24:47]>> Like with the Thunderbirds or Blue Angels so I could cry a little and be like, "I don't want to do this anymore."

[00:24:56]>> You can pass out in the back. Yeah.

[00:24:58]Okay.

[00:25:01]This one's for me.

[00:25:04]It just says, "Carissa, given your background in nursing, do you feel prepared?" And I would say yes and no.

[00:25:13]>> Carissa does not like this question. She said it's a sad question.

[00:25:18]>> It's a sad question.

[00:25:19]>> you if you have questions for Carissa, make them happy questions.

[00:25:24]>> It's all part Like I'll answer them, but I was like, "Oh."

[00:25:28]But, um So, yes, I do feel prepared in the fact that it's like anything that he's going to be going through, I've taken care of someone similar in I haven't taken care of anyone with ALS, but I've taken care of like quadriplegics and So, it's like I kind of know the realm of things.

[00:25:50]And I feel comfortable in taking care of him. Like that part doesn't scare me.

[00:25:54]That part is fine. It's the like the part that I don't feel prepared for is like >> You've never had to deal with someone >> emotional. Yeah, I'm I'm worried about emotional, cuz as a nurse, you can kind of like What's that word? Like separate yourself. Like just kind of like put yourself out of and take care of the patient, you know, that's what your focus is. But, when it's someone you love, it's just like completely different.

[00:26:24]I feel like >> Yeah. No, I get that.

[00:26:27]>> something to maybe get used to.

[00:26:29]>> It's weird. Like if you if we go back and talk about God, God prepares us for our trials. And this obviously isn't a trial just for me.

[00:26:39]It's a trial for Carissa. It's a trial for our girls. It's a trial for our extended family. Um but he prepares us for our trials. And I feel like Carissa's been prepared for this as weird as it sounds.

[00:26:54]>> I've told Hayden, I was like, I was made for this.

[00:26:57]>> Uh >> I can do this.

[00:26:59]>> Yeah, her entire professional career has been like long-term care, uh dealing with um the elderly, old old folks, lockdown units, things like that, things that I mean, aren't the easiest things to deal with.

[00:27:17]Uh but I think it's prepared is It's going to have helped prepared you >> Yeah.

[00:27:23]>> for what's to come. Not saying it's going to be easy, not it's going to not saying that you're going to be set 100%.

[00:27:31]There's going to be things that pop up that's going to suck. I get that. I'm sorry about it. Um but yeah, I I think you're going to be better prepared than most, which is a blessing somewhat in itself.

[00:27:47]>> Yeah.

[00:27:47]>> So.

[00:27:48]Yeah.

[00:27:50]>> I was made for this.

[00:27:53]Uh let's see. You two have such a good relationship. Do you ever fight?

[00:28:01]>> No, because I'm always right.

[00:28:04]>> I want to know what people's like definition of fight is.

[00:28:08]Cuz to me, fighting is like full-on yelling, swearing at each other.

[00:28:17]Like that kind of stuff. Like we don't do that.

[00:28:20]>> not into domestic violence and hitting.

[00:28:22]>> I don't know. Like do I say hitting?

[00:28:23]Like that to me, that's fighting and no, absolutely not. We don't do that.

[00:28:28]>> Um no. So, that that was something I've always wanted is a relationship that we can talk things out. Uh if there's ever disagreements that we're not going to go to bed angry, that we are going to hash whatever out.

[00:28:43]And there's been times where I've almost made it to sleep angry and I'll roll over and I'm like, "K, what is the matter?" And it pisses me off.

[00:28:53]>> [laughter] >> I can go to bed.

[00:28:56]>> I won't let you.

[00:28:58]>> I'm over there like >> But yeah, I know to me, my relationship with Alyssa is the most important thing on this planet.

[00:29:07]Um I wouldn't want it any other way. I'm going to do everything I can to make her happy. Uh if I have to have to humble myself to do that, I will. And I get it, I'm wrong 90% of the time.

[00:29:22]Uh but as for arguing, like we'll argue, but our arguments >> me sometimes? Yes. Yes, he does.

[00:29:30]>> That's rude.

[00:29:31]>> Just like anyone. You get annoyed with anybody.

[00:29:33]>> You don't bug me.

[00:29:35]>> Bull.

[00:29:36]>> You don't.

[00:29:38]I love you.

[00:29:40]>> [laughter] >> But no.

[00:29:43]>> But yeah, no, like our arguments are very tame and >> Yes.

[00:29:49]We just can talk it out.

[00:29:50]>> Yeah.

[00:29:51]Um I would say I'm going to throw this in. Just I know this isn't part of the question, but probably one of the times I've seen you the most angry with me.

[00:30:05]>> Oh, when was that?

[00:30:07]>> It's when we went to go do one of my blood draws for testing the medication.

[00:30:15]And it just had a urgent care type place down here.

[00:30:21]>> Yeah.

[00:30:22]>> Do you know where I Okay.

[00:30:25]>> So keep going.

[00:30:26]>> went in by myself to go get it done. She was not ready for the day at all. Like >> No.

[00:30:36]>> She was rough.

[00:30:38]>> Rough. [snorts] >> [laughter] >> Like rolled out of bed.

[00:30:43]I don't what I was wearing. I don't even know if I matched.

[00:30:46]>> You [snorts] You [laughter] didn't.

[00:30:49]Oh, it was >> And you took forever.

[00:30:53]>> You were adorable.

[00:30:55]>> And our youngest, who was barely potty trained, needed to go to the bathroom.

[00:31:01]>> Uh and she did not want to get out and >> No, I tried to push it so hard, but I'm like, this girl's going to pee in the car. Like, I have to run in.

[00:31:10]So, I go in.

[00:31:12]And what did you do, you sweetheart?

[00:31:15]>> [laughter] >> I Like, I'm getting done as she's walking in.

[00:31:20]And she I don't think you saw me or something.

[00:31:23]>> I was just like, don't make eye contact with anybody. Get in and get out.

[00:31:27]>> And I I was an a-hole. And I >> Yeah, what did you say?

[00:31:33]>> What did I say?

[00:31:34]>> I don't remember.

[00:31:35]>> was something along the lines of, "Oh my goodness, you came out of the house looking like that."

[00:31:40]>> And he's yelling it in the parking lot.

[00:31:42]>> It was No, we were still in the building.

[00:31:43]>> We were in the building?

[00:31:44]>> in the building.

[00:31:46]Yeah, you Because you were walking her, too.

[00:31:48]>> I was >> She was so mad. And I felt like such an a-hole. Rightfully so, [laughter] though.

[00:31:58]>> He totally called me out in front [snorts] of all these people.

[00:32:04]>> I'm so sorry.

[00:32:05]>> [laughter] >> It's forgiven.

[00:32:08]>> It was funny, though.

[00:32:10]>> That was a pretty rough day.

[00:32:11]>> Yeah, she was She was not happy with me.

[00:32:15]>> So embarrassed.

[00:32:18]>> Sorry. Sorry to bring it up again.

[00:32:20]>> No, it's funny. It's all in good fun.

[00:32:24]>> Lot of time.

[00:32:26]>> Do you have gut issues?

[00:32:28]>> Gut issues?

[00:32:29]>> know how that connects.

[00:32:31]I don't know I don't know where that question >> Um as of now, no.

[00:32:38]>> Oh my >> like talking about stuff like that.

[00:32:40]>> Oh my god, you're good.

[00:32:43]>> Even to me?

[00:32:45]>> You may move on.

[00:32:46]>> Nope, let's keep on this.

[00:32:48]>> You're so >> [laughter] >> dumb.

[00:32:50]>> Let's get some payback.

[00:32:53]Uh what were your first three symptoms in order?

[00:33:00]>> In order?

[00:33:04]I wasn't born.

[00:33:09]>> You weren't born.

[00:33:10]>> Yeah.

[00:33:11]>> That's sad.

[00:33:12]>> I feel like that was a symptom.

[00:33:14]You can't have it if you weren't born.

[00:33:18]Am I right?

[00:33:19]>> No, but go on.

[00:33:21]>> Um no. My first That joke missed.

[00:33:25]>> Aw.

[00:33:27]>> Did it go over your head? It just missed. Apparently, it wasn't funny. I thought it was. Anyway, I digress. Um three symptoms in order. Uh the first thing was uh the weakness in my hands.

[00:33:43]Um Yeah, noticing that the and I know I've said this in dang near every video, loading magazines for my gun became increasingly uh difficult. And then um the thing that kind of there was that.

[00:34:09]And then what wasn't really a symptom and I haven't had one since was an uh ocular migraine where like my vision started going blurry and fading away.

[00:34:24]I again, haven't had one since uh that time, but that was like concerning uh because I was at work and all of a sudden I'm like uh-oh.

[00:34:36]So I remember driving and like I was losing my vision. Luckily I was close to um um one of our patrol offices and I went in there and I just told one of the sergeants like I got to go sit in a dark room for a second and that kind of solved it but that with the weakness in my hands and then that that sent me to the doctor. Well, she did because she made me >> I forced him.

[00:35:03]>> Um So the weakness in my hands when I was reviewing body cam that's when I first started noticing fasciculations in my left uh bicep.

[00:35:14]And so I brought that up to the doctor.

[00:35:17]Um And then the other thing that was pointed out to me was the atrophy in my hands.

[00:35:25]So I I understand that atrophy and weakness obviously coincide with one another but seeing the atrophy in your hands and that and then feeling the weakness I'm going to count as two different things.

[00:35:40]Yeah.

[00:35:41]>> I think so.

[00:35:42]>> Yeah.

[00:35:44]>> Okay.

[00:35:49]Explain the hunt drawings in Utah and how they work.

[00:35:53]>> Um so I think this goes back to one of our other videos we were talking about the hunts and I talked about the drawing. If you're not into hunting or you don't know, so in order to draw for uh certain tags here in Utah you have to put in to a lottery system which is weird. So the lottery is illegal in Utah. So in order to complete the lottery they have to send it to out of state to draw but anyway, I digress. So there's there's different hunts you can go on, but the three main ones I'm going to talk about are the the general season deer, the limited entry, and the once-in-a-lifetime hunts.

[00:36:39]And so, the state is divided up into several different units.

[00:36:43]Uh and by several, I mean there's a bunch of them.

[00:36:48]Uh so, for general season uh deer, you can apply for uh muzzleloader, archery, or any legal weapon.

[00:36:58]And so, you just kind of select your hunt, and then you have to pay $10 to put in for that hunt.

[00:37:05]Uh same with your limited entry. So, your limited entry is bull elk, certain deer units, and antelope. And then your once-in-your-li- once-in-a-lifetime hunts. So, bull moose, uh mountain goat, Rocky Mountain bighorn sheep, and desert bighorn sheep.

[00:37:26]And maybe bison.

[00:37:29]I can't remember if bison's in the once-in-a-lifetime. But, technically, so there's odds of drawing.

[00:37:37]So, you put in your $10 for the general season, your limited entry, and your once-in-a-lifetime.

[00:37:44]Um and you just kind of select the hunts you want. Uh for general season, you can select up to four. So, that's different areas, different weapons, whatever it may be.

[00:37:58]Um limited entry, there's two that you can put in for.

[00:38:03]Again, it's the same species, but different areas.

[00:38:07]And then once-in-a-lifetime, you can only put in for one.

[00:38:11]And so, general season, you draw out roughly every year. Uh with the amount of people that are coming into Utah, it's now up to two to 3 years.

[00:38:23]Um depending on what you're hunting and what you're hunting with.

[00:38:28]For your limited, you can draw out like I drew out an antelope tag, but it was a muzzleloader antelope and I drew out in 6 years. And then uh your elk I mean you have people putting in for 20 plus years and still haven't drawn out.

[00:38:46]Um and then you got your once-in-a-lifetime, you're up to 20 to 30 years of putting in those basically $10 draws.

[00:38:54]And eventually you'll draw out for it, hopefully, maybe.

[00:38:58]So.

[00:39:00]Yep, that's it.

[00:39:01]>> Wow.

[00:39:02]>> Sorry, that went on long.

[00:39:03]>> Sure did.

[00:39:05]>> But it was fun.

[00:39:06]Right?

[00:39:07]>> For those who are interested >> Everybody's interested in me. I'm kind of a big deal.

[00:39:14]No, okay, cool.

[00:39:17]I'm with you heavy on >> So, one thing you didn't explain very well with your sibling video is like your siblings in birth order and like and just whole family. They want to know your sibling order.

[00:39:30]>> They're so dumb, though.

[00:39:34]It's about me.

[00:39:36]>> Aw, poor baby.

[00:39:38]>> Um yeah, no not a problem. So, my oldest sister uh she was not in that video.

[00:39:45]Uh she is 5 years older than me.

[00:39:48]And her name's Whitney.

[00:39:50]Hopefully they don't mind me giving out their names. If they do, uh >> Too late now.

[00:39:55]>> Piss on them.

[00:39:57]They'll get over it.

[00:39:59]They can't hold it against me forever.

[00:40:01]Um so yeah, Whitney, she wasn't in the video.

[00:40:05]Uh and then you had have my older brother and sister, they're twins. So, my brother that's in the video, Kyle, and then his twin is in the video.

[00:40:15]And she's the one in the pink shirt. Uh that's Kylie.

[00:40:20]And they are 3 years older than me.

[00:40:23]And then Lindsay, who was the other sister in that video, is um she is also a twin, but her twin passed away from SIDS when they were a couple months old.

[00:40:40]>> That's so sad.

[00:40:41]>> Uh so sad.

[00:40:45]But yeah. And then I have a younger sister, Krista, who's 5 years younger.

[00:40:49]So, if you're following along with the math, my parents had five kids under the age Yeah, five kids under the age of 3 and 1/2 because they had two sets of twins a year apart.

[00:41:03]>> Yeah. I don't know how she did it.

[00:41:05]>> Um >> It's a lot.

[00:41:07]>> So, 14 months apart is how far apart they are.

[00:41:11]And yeah, so and then technically six kids under the age of five Well, I guess not six kids under the age of five because he passed away before I was born.

[00:41:23]Um and then yeah, my little sister 5 years younger. So, between me and the oldest, there's 5 years, and everyone else in between, and then between me and the youngest is another 5 years with no one in between. Uh she's a spoiled little brat. That's why she wasn't in the video cuz she thought she was too good for it.

[00:41:44]>> Oh, she's >> [laughter] >> He's just lying. My goodness.

[00:41:47]>> I know, but if she ever watches it, it's going to be funny.

[00:41:50]>> Gosh.

[00:41:51]>> So, yeah. Um that's kind of our birth order.

[00:41:57]And yeah.

[00:42:01]I think that question was directed to you as well.

[00:42:04]>> Well, the first one was sibling order, and then the next one was both of your birth orders and how we fit in our family.

[00:42:12]So, I'm the oldest of five.

[00:42:15]I have one brother and three sisters.

[00:42:18]>> Just in time.

[00:42:21]>> And um Um I don't know.

[00:42:27]Do I just go in order?

[00:42:28]>> You do whatever you want.

[00:42:30]>> That's me, and then my sister Kelly, then Kenzie, then Justin, my brother, and then Kendra.

[00:42:37]>> Yeah.

[00:42:37]>> Yeah. That's my family.

[00:42:39]>> Yeah.

[00:42:40]>> We're all really close, and it's it's awesome.

[00:42:43]>> It's so fun.

[00:42:44]>> It's so fun.

[00:42:50]What?

[00:42:51]>> I love you. You're my favorite.

[00:42:53]>> I know I'm weird. I'm sorry.

[00:42:57]Uh I think this is the last question.

[00:43:00]>> The last >> The last question.

[00:43:02]>> The last Melanie.

[00:43:04]>> How long from when you noticed things were you diagnosed?

[00:43:10]>> Um Mine was pretty quick, and I know other people go through >> years >> years of testing and things like that.

[00:43:22]But I feel like I mean, I was sent to uh nerve conduction studies, so two different No, three different nerve conduction studies in a matter of like a month and a half.

[00:43:36]Um CT scans, MRIs, um So, when I first started going to the doctor, which was like May, and then I got the official diagnosis in August of 24.

[00:43:54]So, I mean, >> Yeah.

[00:43:57]>> 4 months tops, which is super quick, uh especially for an ALS diagnosis, um which makes it seem a little surreal, especially reading other people's stories and other people that have reached out to me here and talking about how they've had a hard time even getting into to their specialty ALS clinics. And I don't know why I get I'm going to say lucky. I don't know why I'm lucky enough to have been uh, diagnosed super quick and then get into our ALS clinic so fast and get on the drugs and whatever else.

[00:44:38]Um, I know lucky's a weird word to say in that situation.

[00:44:44]But um yeah. It's It's weird.

[00:44:56]>> Yep.

[00:44:58]>> Someone's crying?

[00:44:59]>> I don't know.

[00:45:00]>> There's always something weird.

[00:45:01]>> so we got distracted.

[00:45:03]>> something weird.

[00:45:04]Um, but yeah.

[00:45:06]I don't know. I I say lucky because it's given us a lot of time to prepare for things to come.

[00:45:16]Um >> Yeah.

[00:45:19]>> I mean given a disease that the vast majority So, the way it was explained to me is 25% of the people that are diagnosed will die before that 2-year mark.

[00:45:36]Uh, 25% who are diagnosed will die after that 5-year mark and then 50% will die within that 2 to 5-year mark. That's why it's given that 2 to 5-year life expectancy uh, cuz that's where the majority are going to end. As of now, I am extremely lucky to be where I am and progressing where how slow I am.

[00:45:59]Um yeah, I it's weird to have that two to five years in your mind and realize you're probably going to beat that. I mean, obviously nothing's 100% certain.

[00:46:16]But it's leaning that way and I'm super grateful for it. I do believe in the power of prayer and it's had a major influence on that. Um again, if you don't believe in God, you don't believe in God and that's fine.

[00:46:34]But for me, I do and uh there's a lot of peace in that. So yeah, if no other questions >> I know that was the last one.

[00:46:46]>> Okay.

[00:46:47]So >> How many do you enjoy?

[00:46:50]>> not even going to debate this time because apparently I was wrong and we'll just put up the whole video once and don't split split it into two parts.

[00:46:59]Um but yeah.

[00:47:02]I appreciate >> right.

[00:47:04]>> You normally are. Uh I appreciate you guys reaching out with the questions. Uh it does make these a lot more enjoyable when we sit up here and do these. I think I got like two pieces in the puzzle. I did like five while you were trying to set it up, but oh well. We'll get this puzzle done by the next time.

[00:47:22]Um >> Maybe.

[00:47:24]>> [snorts] >> But yeah, I assure everyone that's been watching it's and we talked about this. It's crazy how much this channel has grown.

[00:47:35]>> Yeah.

[00:47:36]>> For whatever reason, um >> I'm so shocked.

[00:47:39]>> [laughter] >> Like I've I think I've told maybe my family and one other person that I started this and the fact that, you know, there's however many people now is kind of crazy to me.

[00:47:57]>> Yeah.

[00:47:57]>> Um so my goal Yeah, thank you. Thanks for watching.

[00:48:03]It's It's kind of therapeutic for us to just sit here and have these conversations. And like I said from the get-go is the goal for this channel is just more memories for my girls so they can look back and kind of see the decisions we've made, how we handle adversity, how we handle these trials, and that you know, even though we're here and having a terrible time and um I shouldn't say having a terrible time, but like we're in a we're in a a difficult time, but even though we're in a difficult time, we can still laugh, we can still have fun, and I think that goes for all of us. And hopefully everyone can find the joy in their trials. It's there. You got to find it. You got to be willing to be smiling and laughing through it. I know it's not for everybody, but it is for me.

[00:49:00]And hopefully it is for you, but I love you. And >> you.

[00:49:03]>> Um yeah, thank you. And I have We have one more video planned >> Maybe.

[00:49:15]>> for Well, not that one.

[00:49:17]>> Oh, okay.

[00:49:17]>> Uh I'm going to basically have do the kind of interview thing.

[00:49:25]This one will be with my mother and her husband. Um So, if you have any questions that you would like to ask uh my mother and kind of from her perspective about all this, leave them below or message me on Instagram or whatever it is. But, I'll leave it at that. So, thank you.

[00:49:46]Y'all enjoy. Bye.

[00:49:48]>> Bye.