ALS at 21? I Hope Not, My Story Pt.4

Added: 2026-05-06

[00:00:00]My undiagnosable 2 and 1/2 year medical journey.

[00:00:04]This is a picture of me 2 and 1/2 years ago and this is a picture of me now.

[00:00:11]All right, this is the final part to this little mini series that I made. Um I'm going to talk about kind of the most recent thing I've done medically and where I'm at with that and then I'm also going to talk about you know, where I am mentally and how this disease has, you know, really affected me and flipped my life upside down in so many ways.

[00:00:34]Um first I'll talk about this picture that I'm showing. Um this is a picture of me and my mom and this is before me getting a motor nerve biopsy.

[00:00:45]I got my obturator nerve biopsy to end the gracilis muscle that it innervates biopsy that as well.

[00:00:52]Um my neurologist wasn't the biggest fan of this due to him thinking it would just it may it might not show too much. Um but some medical consultants that I have been working with this spring to try to give us new ideas and stuff um due to my really strange presentation, they thought it would be very beneficial to get a motor nerve biopsy and I did get that biopsy done. It didn't show any damage to the myelin sheath. It didn't show red red ragged fibers or T-cell um or macrophage issues. It really just showed denervation on the nerves and it was able to confirm why a lot of these autoimmune treatments that I have tried recently and in the past have not been working for me and that is due to this disease being um at the axon level with the nerves.

[00:01:52]Recently, I have gotten a whole genome sequencing test done and I'm still waiting for the results to get back for that where they did a cheek swabs with both my parents so they took blood from me and it's apparently supposed to analyze about 98% of the body's DNA so it might give us some answers to maybe some very weird genetic mutations that could have potentially uh been a factor in causing this and I'm currently taking a lot of supplements and using a EMS unit to stimulate my muscles. Um like I said, I'm completely wheelchair-bound. I'm pretty much paralyzed below the neck but I'm still holding on to hope and hoping [clears throat] that maybe I will eventually get some answers for this disease process that I have.

[00:02:42]Lastly, I want to talk about where this disease has really left me physically and mentally and how I've been able to cope with everything that's been going on and also talk about, you know, certain things that I'm still grateful for even while going through this um frustrating disease.

[00:03:02]Um first off, in this video I explained how it's affected me physically which, you know, I went from being pretty strong, actively weightlifting in college, um to not being able to do anything for myself such as basic task. Um but I think what a lot of people don't quite think of sometimes is how much losing your physical aspect of your body affects you emotionally. And you know, just 2 years ago I had the dreams of being a aerospace engineer and you know, still being active in a gym, saving up for a house, having a family.

[00:03:42]Um you know, all the typical dreams someone has around that age.

[00:03:47]And it's been such a quick turnaround to where it has been hard for me to accept this as reality and I've been dealing with a lot throughout the process.

[00:04:00]Unfortunately, due to this disease I did lose more than just my body. Um I lost a girl that I loved more than anything and she was by my side through a lot of this disease process especially as it was getting really hard for me and I would just say the disease changed our relationship in a lot of ways. Um you know, there was the love was still there. It just wasn't um things were just so different and it was very it was very hard on her and it just ultimately you know, it wasn't a decision that wasn't in my hands to make but um I do know in, you know, any other life if I didn't get this one in a million disease like, you know, I would think that she would probably be my wife, you know, and so it's seeing how that's affected me, you know, emotionally and mentally not just physically and also my friends like I still have my close friends and I'm still very close to them but even our relationships are just different than they used to be. It's just I don't really know how to describe it.

[00:05:09]Luckily, I do have a van but and I can go out and do things but it's just not as easy as it used to be to just go out and, you know, go golfing or go play basketball or go to the gym, right? So there definitely are some aspects that have been taken from me.

[00:05:27]Now I want to talk about the things I am grateful for even in this trial that I'm dealing with. Um I still have a lot to be grateful for.

[00:05:36]Um you know, I'm grateful that my breathing and my lungs and hasn't been affected like a typical ALS case would do. It's more just lower motor neurons which I'm I'm grateful for that. Um it should definitely extend, you know, my lifespan whatever that may be.

[00:05:54]And I'm grateful that you know, we live in a time where I can have an electric wheelchair I can this wheelchair can stand so I can pee normal. Um I have a head tracking device on my computer which is how I made this video.

[00:06:09]Um and so as well as this mouth pad that I control my phone with a lot of the time. So there are a lot of things I can be grateful for and I know that God has a purpose in everything. And something this trial has also done especially in the past few months is draw me closer to the Lord and maybe God has a big plan for me even through all this.

[00:06:36]Also, besides all of the assistive technology I mentioned I'm also obviously very grateful for my family. I have a really good support system even through this disease with both my parents and my brother and as well as a lot of my friends that really have tried to be there for me and it's been very helpful and um it's also been, you know, in the word and knowing that sometimes the biggest battles of this earth are given to God's strongest soldiers, you know, I believe sometimes the enemy tries to attack, you know, some people harder than others and I think that's just part of us living in a fallen world and here are two Bible verses that I think have really helped me through this process.

[00:07:25]So these are two verses that really resonate with me. The first one is just mainly explaining that if you renew your strength in the Lord no matter what's happening in your life, um you will be content and you will mount up on wings like eagles and that's something that I feel like over the past few months I've focused a little less on myself and focused more on, you know, the bigger picture. And then the second one um is just pretty much mentioning that um God will restore to people that follow him the years um that the locusts have eaten which is essentially, you know, means like the trials and hardships, you know, we face on this earth will be restored as long as you are a follower of Christ.

[00:08:13]Ultimately, throughout this process I've noticed that if I choose to compare myself to other people or just complain and wonder why me, why is this happened, it's just going to make things worse and it's going to make me not content with my life currently and I think that's kind of a lie, you know, even though I'm going through all this I still have so much to be thankful for. Um yeah, this is the end of kind of my little series explaining what has been happening with me over the past few years and if anyone has any medical advice or any insight or can share this video with anyone, that would be awesome.

[00:08:51]And yeah, I mean I've kind of learned a little bit how to use this software to kind of make videos so maybe to entertain myself in the future I might make, I don't know, some fantasy football content or even some Christian content. Um just, you know, to keep myself busy and maybe share my story a little bit more and also, you know, just mess with things that I enjoy and have fun with but um if you made it this far, thank you for listening to my story.