Surviving My ALS Journey One DAY at a Time!

[@EdwardNguyen-g1h]

Hi Darin! I am diagnosed with ALS, two years ago. I lost my voice and hard to swallow the food. I take advice from an ALS clinic in Michigan that I need to conserve my energy. My family basically takes care of everything around the house to minimize what I do. Three weeks ago, I couldn’t use my right hand to write/sign my name. It was hard for me to use my right leg as well. It was hard for me to do a short walk of 200 ft. I defined the odd to do the exercise where I lost my muscles (throat , my right arm, hand and leg). I start slowly like walk 0.25 miles,…. As of today, I can walk 3 miles with ease. I can use my right hand to open a jar of jam. I did not recover my voice yet, but I can swallow the food easier. I don’t know what the future will hold, but I will keep doing with what I do, and maybe I can slow down/stop the progress of the ALS. Each body is different, so I just tell what it is for me. I hope you could find a way to fight back the disease! By the way, I take the same supplements that you take and NAC, magnesium glycinate, lithium oratate, and papaya leave extract.

[@windowssaturn2007]

Stay Strong Man.

[@EdwardNguyen-g1h]

Thanks, I keep doing it!

[@windowssaturn2007]

@@EdwardNguyen-g1h np Brother!

[@bostonwhofan]

My brother-in-law was diagnosed with ALS at the end of March 2024. He is pretty much completely paralyzed already. He can still eat, but he has to be fed. He can still talk, but it is getting harder to talk each day. He is going for surgery on Dec 18 at Mass General Hospital in Boston to receive a feeding tube. Edward, would you describe some of your symptoms as recovering and getting better? Things don't look good for my brother-in-law, but we keep praying and hoping the progression of his symptoms slows and will hopefully reverse. Keep fighting Edward, it will be amazing if you continue to defy the odds!

[@EdwardNguyen-g1h]

@@bostonwhofan Hi, Everyday, I try to do again what I can’t do due to the ALS. I used to loose my balance, my right leg was weak, and couldn’t walk for 100ft - 200 ft. My right arm and hand couldn’t hold a pen to write or picked the phone. I couldn’t talk. It was hard to swallow. Every day I do against what I can’t do. Start slowly and increase the level of intensity. Now I can walk 3.1 miles (5k) in less than an hour everyday. I can use my right arm. The arm is still weak, but it is much better. I start to work more on my arm/hand, and feel the improvement. I can do yard works now. I can swallow easily now. I used to need a tube to drink liquids, and choked every time I drink sodas. Now I don’t need a tube to drink. My voice is still not there yet. Some days, I can say clearer than the other days. It is on and off. Working against the symptoms is very hard and tiredly … I start slowly and consistently, then slowly increase the intensity. Overall, it seems working for me. Hope he would fight hard against the disease!

[@patriciaflaherty]

Don't be embarrassed or ashamed. You are NOT a burden!!! Your family loves you and want to help. If you or your insurance can afford it, get the caretaker NOW. It's best to get to know that person before you really need them. Use the walker, the scooter, the wheelchair...whatever you need. Conserve your energy for joy finding activities only😊.

[@baksopluk]

Hey there! I’m a speech therapist. Have you looked into getting an eye gaze device? They are amazing!

[@michellebacon397]

As a wife, whos husband has ALS, we do what we do because we love you, because its the only thing we can do. Save your energy to spend time & make memories with your loved ones. We are praying for you & your family! Go find some joy ♥️

[@suestephan3255]

Darin, you are the sweetest kindest man. This is not a good prognosis BUT the upside is God uses you to bring the joy. Life is hard but you find the joy. You encourage us, you inspire us. We love you❣️

[@Mondo-jo8my]

I never been a real religious man but I've been following you since the beginning and your words of encouragement are awesome because when you think you're having a bad day there's always someone else out there my heart and my prayers go out to you Darin 🙏..such a terrible disease, the way you're tackling it is so admirable. Keep up the fight ! Now.......LETS GO FIND SOME JOY!

[@markvpinkham]

There are at least 16,000 of us following your life. As a Christian I know one day in the future I will meet you, rejoice with you and we will have Joy.

[@lattymom1]

This video is a good reminder of how we need to be thankful for each day that we have. Last night I was complaining about a situation in our home. I am 70 and life can be tough sometimes. But nothing like yours. You are handling this with grace and dignity. Bravo Darin. Bravo. Blessings from Northern Canada.

[@AlanaHinton-v3u]

You were my brothers teacher and we have so much feeling for you! Keep going and keep being you because you are amazing and strong and brave!

[@jule3480]

Car sales guy😡🤷🏻‍♀️ Speechless! You know why people support you so much? ‘Cause you’re an incredibly amazing and nice man. Thank you for sharing your life and story , ( and it is refreshingly authentic, I think because that’s just who you are and it’s not like you have to force being that way for the camera ) ❤

[@Cwazy4heaven]

Darin, I wish so much that there was some thing I could do besides praying. I will never stop praying for you! I am so glad that you are doing the hyperbaric chamber. I’ve heard many good things about that and hopefully that will give you some relief. I’m also hopeful that your functional doctor finds something else that can be done about your symptoms to help your quality of life. If I’m being honest, I kind of hope they find that out that something else is causing all of your symptoms and it’s not ALS after all. I still greatly admire your positive outlook, despite all the challenges you’ve had to overcome in the last 11 months. Go find some joy!

[@shanansolomon8171]

I lost my mom to ALS in February and I wish she had had the capacity to find some joy like you are doing! My only regret is i feel like I didn't support her mental health like I supported her physical health. Even though I was there almost around the clock, the depression and isolation was so hard for her. Although you can't control what's happening to your body you can control your attitude and find some joy! It's so important to have a mental health professional in place because your mind needs to be cared for more than anything else! In hindsight that's what I regret the most. God bless you and thank you for your vulnerability and positive message!❤️🙏

[@carolelynch5218]

Darren, I am always watching your videos. I found you on KZbin after I was diagnosed with ALS in August of this year. It took at least a year and a half for several doctors finally passed me on to neurologist. I’ve had surgery on my right arm in order to quote fix my hand of course it was Als that was making my hand in arm week. And August 27, 2024 I was told I had Als. I don’t know why it is taking so many doctors a long time to recognize the signs of Als? Although I am Older than you at 78, I know that this is a struggle we are both experiencing. It seems every day a new adjustment because of changes I am experiencing . Now in Tennessee, through Vanderbilt hospital in Nashville. I have a great team to help me. They have ordered an eye gaze co communication device / It is controled simply by the way you look at something on the screen. Also, they have ordered a amazing power wheelchair for Als patients. Much of these costly equipment is paid for through the Als association. Please no that you are helping so many of us bye sharing your story in an authentic way. If you have an eye device, it should help you continue with these KZbin videos we need you. My faith is also strong.

[@joeygrey9878]

Hard to find some joy. My husband has Stage 4 non-smoking lung cancer. We are not religious, so we trust the science But am so happy you find comfort and joy in your beliefs. Will try my best to find some joy because of you.

[@teribabe58]

Darin- your videos inspire me and I don’t have ALS. I do have a chronic non curable, barely treatable, disease called lupus. I’ve came very close to death 3 times in the bast 20 years. I am an RN and have been since I was 18. I’m 66 now. I haven’t gotten to live the life I want. It’s taken so much away. Disabled from work since 2011. I have an empathy for ALS patients for some reason. Hang in there. So happy you have Denise. I’ve been single for 25 yrs and it’s tough being alone. The internet is my window to the world. Weird for others to understand. ❤️PS I bought a used car last month from a dealership. The salesman Sean has been the greatest guy in many ways. But I agree most are slimy.

[@sactopyrshep]

You deserve all the the support you get. You are a good man going through a very bad disease.

[@InHitchWeTrust]

Keep fighting. The cure/treatment are just around the corner. I truly believe this. And not just on wishful thinking, but there's a lot happening in science/ALS world, so many trails going on, they really are getting close. Warm thoughts and best wishes!

[@kathy68921]

Thanks for the update! I was diagnosed with ALS this past Feb. Took a year and a half before getting that diagnosis. I went from cane to walker to power chair. You want to conserve your energy. I use a bipap at night. I now have more energy since I can finally get a good nights sleep. I am not waking up with headaches or stomach aches. Not sure if you use one but I would highly recommend. Go find some joy! ❤️🙏

[@sueg7174]

I am so disappointed for you that you have had the progression. In preparation have you had your voice recorded for one of those computers that you can use in the future? You have a very interesting way of telling your story. Great to watch. Best wishes to you and your lovely family. Big shout out to Denise.

[@drewcwsj]

It's amazing how similar our progression is. Also my voice is going fast. Currently in Quito at 10,000 feet and breathing is easier.

[@KerriLove-b5r]

Hang in there. Your videos bring light and comfort to both me and my partner, who has ALS. Sharing your experience helps us feel less alone in this journey. You shine a light so bright. ❤

[@danielqu1]

Hi Darin. After having lived this long I see the change from young to old. I see the end of this life, it’s hard for me to ignore. I saw this article in the paper and was interested in hearing what you had to say. Your position is hard. Hard for you and loved one to watch things progress and deteriorate. Just know that you are not alone. We all are headed to the same place and our journeys are all personal and different. I am with you in heart and wish you the best in what otherwise is a hard thing to experience after having lived a “normal ambulatory life”. I imagine too how hard it must be for your family to see things change, you changing from caretaker to someone in need of care. It is a sad story, but one that is real and hard to believe. May things be as good as they can be Darin and I for one will think of you and your family and the hardships you all are experiencing often. I will follow you on your journey.

[@youtubingwithyou]

It’s always a good day when we hear from you, Darin. Prayers up and #GoFindSomeJoy ❤️🙏🏻

[@echogl]

God Bless you Darin. My heart goes out to you fighting this disease. Prayers for you! 🙏🙏🙏❤❤❤

[@PeacefulTrailz]

Darin, your positivity is infectious. You have given so many of us encouragement to persevere through our own individual life challenges. Thank you for spreading joy to my life and others. ❤

[@RustyTinMan]

Darin, I too am living with ALS I began to feel symptoms in January 22, I was diagnosed in June of 23, and after a few falls and broken nose, I am now stable with little progression for more than year, but my progression was very quick to this point. My independence is almost all gone, I use a power chair and use an eye gaze device to communicate. Thank you for sharing your journey, and with it made me consider sharing mine. I hope and pray that your journey is long and enjoyable. Love you brother.

[@grandiii]

I have been battling ALS for 7 years and have dramatically slowed down the progression using Leap 2 B Fit and L-serine. I take it every day and highly recommend it!

[@teribabe58]

I feel sad for you. I’ve been following you from the beginning and I can see how fast it’s going for you. Can hear it in your speech as well. Have you recorded your voice to have it for one of those speaking apparatuses. Thinking of you and how hard this must be. Keep posting and finding joy. Damn they need a cure.

[@heidilenhardt5434]

Mr. N, you are such an inspiration. Your positive attitude despite your circumstances is simply amazing. I love how honestly you walk us through your journey. We will be praying for you.

[@stomas5640]

Go find some joy! My mom died from ALS 4 yrs ago. Sending prayers your way!

[@deannastahl9726]

I have been following you for quite sometime. I always look forward to your stories and I think of you often. Praying for you and your family as you navigate through this disease. Praying for everything to slow down and/or reverse for you! You are such a blessing to all. Go find some joy:)

[@robertshelleyduck3268]

Still love you, Darin! I pray for every time you come to mind, which is often. I pray for Denise, too. For strength, for hope, for courage, for resiliency. And for laughter and funny moments , and healthy, cleansing tears. You are still you, Darin. You are not just a body. You encourage me every time you post.

[@laurie8883]

I love it that you are out getting some sunshine! Beautiful yard that you have! Darin, thanks for the update. Wishing you a good feeling weekend for you and your family!😊

[@barbhelle5481]

My cousins husband had ALS. I have SLE and RA which has me disabled. You are in my prayers. Go find some joy. 😊

[@missiris1234]

My heart is breaking for you but please keep fighting. Hope you are having some good days sir❤️🙏❤️

[@jeffreypeters395]

We love you very much. You are full of joy and an inspiration, brother.

[@JaimeLopez-e6j]

Praying for you Mr. N and family!!

[@julieseattle]

Thank you for the video-please do not feel that you are burden, family wants to be there, just please allow loved ones to take care of you and the daily housekeeping.

[@bsuitt]

For everyday that you wake up, there is hope. Hope for a reversal or cessation of symptoms or a cure even. Hope you can continue to find some joy each day.

[@GlitterandJams]

Sending lots of ❤ and hugs to you and your family! Go find some joy!

[@JustBethTrying]

When your videos post, I find some joy. Thank you!

[@jenniferdowns322]

My heart goes out to u and yr family. I’m praying for u.

[@wendymichiko]

Thank you for filling our hearts with JOY brother! God bless you and this sweet community you've created.

[@kateroro6024]

Praying for you to be surrounded by peace, love and joy daily. I am disabled as well and as time goes by I think more about Heaven. I’m a Christ follower and I know one day we will be made whole again!

[@blciffa]

I don’t know anyone with ALS, but followed you for years and you’re so positive and do so much for us fellow teachers. Praying for you!! Glad to be part of many joy ambassadors. Go find some joy. 🙏🏼🙏🏼🙏🏼🙏🏼

[@MarthaGarrett]

You are strong and joyful and grateful! I know you are helping people. You are helping me

[@carinverdugo602]

Continued prayers for you Darin. You inspire all of us to "go find some joy".

[@kaylynm4193]

Thanks for being honest about your experience with ALS. In doing so, you are still teaching and touching lives. Your students over the years are so lucky to have you. I’m not great with words, so I won’t try to come up with any profound encouragement, but I do recommend you go find some joy. 😀 (I always watch your videos to the end. 😉)

[@juliastevenson304]

Thank you for being you and sharing this journey with us. Go Find Some Joy! And remember, YOU are AMAZING!! ❤❤❤❤

[@nyx4love]

My husband tried to work out almost until it didn't work anymore and it zapped all his energy for other things. Maybe you can preserve the power for more joyful things every day? My husband didn't know he had ALS until 4 days before he passed. I wish I had known to help him save his strengths for things he enjoyed. I send you a huge and gentle hug. Denise shows her love for you by helping wherever she can. I did the same and my husband was never a burden for me. It was hard but weirdly it helped me to walk the journey together with the man I loved and still love. We became super close and it created a bond stronger than anything I ever experienced. So don't feel bad ... I am sure she has similar feelings.

[@itzbridge]

You are so inspiring Darin! I love when you give us an update. I am thinking of you and your family and am holding you in my prayers. 🙏 Go Find Some Joy!

[@mmmmlllljohn]

You are such a sweet soul, Darin. I so wish you could have been spared this tough journey. I know when we get to the other side that our bodies will be whole and we will experience much joy. I am praying for you and all those who have this devastating disease. I do find my joy every day and hope you do too. Love from Ontario, Canada ❤️🇨🇦🙏

[@chriscarson1903]

You are the joy Darin!

[@kathyarnusch7614]

❤❤❤❤❤ I have known of three people with ALS in Regina. One I knew personally. I stayed to the end of your message. Have no words, just hugs to send to you and your family. First time I heard you speak I thought “what a hip guy!”

[@mumzee7680]

God Bless you and your lovely family, will be keeping you lifted in prayer ,sending love and hugs to you and family xx

[@shannonweber6253]

I stayed until the end! You are an inspiration to me and I'm praying for you ❤

[@christyowen9354]

Thanks for the update. Continuing to follow the journey from IN and I keep praying for you and your family. I went through this journey with a close coworker at my school a few years back and it’s so sad how quickly things can change. I love your positive attitude and authenticity. Thanks for bringing joy and causing others to go find some joy! ❤️

[@camillekortis2117]

My grandfather had ALS and died in 1945 . I am so sorry who have this disease,I will keep you in my prayers. ❤️

[@mattsitzman2152]

“Go find some joy”? When I watch you I find it. Sounds odd, I know. But you give the human spirit a new meaning. Your honesty and optimism is unparalleled. Heal. Please.

[@cindykindel4717]

U r such a wonderful man. Always spreading joy to everyone. I will keep in touch always as I subscribed to u.🎉❤😅

[@Slowliving748]

We are with you. Sending love. Go find some joy.💕

[@ADS-cg1sp]

Thank you for taking us on this journey with you!! We are all behind you!

[@elizabethforrest9258]

Go find some joy. Yes! Stay strong Darin!

[@sonjabryant2567]

God bless you Darin I was a caregiver for my husband and I don’t regret 1 min of it because we love you and that is what a spouse is for I wish I had him back so I could take care of him I miss him so bad he had Parkinson’s disease I lost him in 2011. Go find some joy I stayed to the end Darin God bless you once again

[@temamarshall92]

Praying for you, my friend….❤

[@veronicaamaya8290]

I want to encourage you as you’ve been an inspiration to me for many years on Instagram. I dont know you personally but know that myself and many many others keep you and your family in prayer ❤️🙏🏼

[@sherimandalari5647]

You are such an inspiration! I have been watching you for years and continue to be amazed by your positivity, attitude of gratitude and giving heart. I wish you joy, hope and strength 💕

[@ASpectacular3777]

You are an absolutely lovely beautiful person. Your soul is golden.

[@kimberlyfake9127]

Praying for you! Go Find Some Joy! ❤

[@patriciatrostmannperez8215]

Go find some joy! You are such an inspiration.

[@holliethomson6147]

Bless your heart Darin ❤ keep fighting this cruel disease, you’re amazing. A truly beautiful soul inside and out ❤ Go find some joy xxx😊❤

[@kristie33777]

We Love you too & so appreciate your updates and inspiration. I'm going to go find some joy today because of you! ❤

[@Orangestanley64]

You are such an inspiration. I continue to keep you in my prayers

[@MARGARETSMITH863]

YOU are LOVED

[@carollynnstjohn9567]

You are inspiring.

[@jimmywarren6685]

Prayers for you, my friend! I enjoy your authenticity in your updates!

[@ConnorMcIntosh-z1u]

You sir are one inspiring human. You make me a better person. Ty. Always in my prayers.

[@juliekelderman4041]

Praying for you always and let's all go find some joy!

[@pattylegg9479]

You are an amazing person doing all you can to help someone else while fighting your battle. You are our joy!

[@kerstintaugher1793]

I find you to be so inspirational! It is so brave of you to share your life and take us this personal journey of yours! You inspire so many people with your videos! Go find some joy with your wonderful wife and daughters!

[@cristinarobles513]

I have been following you since the COVID shut down and Zoom was the way to teach. You are an amazing person and continue to stay positive! Go find some joy!!! ❤️

[@lnewbury1]

You are amazing! I love your spirit. I got my tshirt and love it. God bless you.

[@Trumanthewestie]

Your a true inspiration of how you keep positive. Find some joy is such a wonderful saying. As you have hard days know all of us are cheering for you to fight the good flight and the good lord is always by your side god bless my friend and don’t forget find some joy!

[@teresadavis128]

A joy warrior- keep up the fight and I am on the lookout for JOY💖

[@marionmurphy4281]

I know how you feel, I’m going through the same process myself. I’m glad you’re feeling strong mentally. You’re such a nice guy.

[@phyllisshocket7663]

Thank you for your updates. Hugs and prayers ❤️

[@normalove8116]

The joy of the Lord is our strength. I'm praying for you and your family. ❤ thank you Darin

[@webg03]

You are an inspiration Darin, one day at a time is the way, thanks for the reminder to go find some joy!

[@susanveligor364]

❤Go find some joy! ❤ Daryl you inspire so many people with your words and actions. My thoughts are with you and your family as you all adjust to the constant changes of ALS.

[@lorib5341]

I love seeing your updates. I appreciate your honesty about how things are going. Praying for you to maintain your strength and joyful attitude! Pffft to the dealership. How rude of him to not even come out to meet with you. Go find some joy and thank you for the reminder!

[@dianeliggett9575]

Love you, love you, LOVE YOU

[@bethkelly9206]

You bring such a smile and a laugh to my face......LOVE THE END! You're an inspiration and thank you for allowing us to love you without ever meeting you.

[@djbacon4995]

I'm with you . Stay strong we need to beat this crap. Find some joy . Team Darin !! I worry about my wife also they do so much. Keep up the fight.

[@margaretw3409]

Go Find some Joy!! Love your videos.

[@RDitrich]

Go find some Joy brother!!! We love you and are amazed by your bravery and courage!! You humble me! Love you

[@chuckles1357]

Hang in there!! GO FIND SOME JOY!! There is still much to live for and be happy about.

[@michelephillips1927]

Sending you much love and support, Darin!❤

[@carolynhamilton3316]

Bless you!❤ you are incredible

[@SCTrojanRommel]

Thank you for sharing your journey. 🙏

[@graceadams9779]

Go find some joy Bless you Mr N I recommend listening to the hymn "l surrender all" God has given you a gift of teaching and here you are still teaching all of us❤