Facing ALS Head-On: My Journey of Resilience and Hope 🌟 | Lou Gehrig’s Disease Awareness

Поделиться
HTML-код
  • Опубликовано: 22 дек 2024

Комментарии •

  • @georgeheym3125
    @georgeheym3125 15 часов назад +12

    This is difficult to write. My friend, you are immortal those who follow you will never forget your bravery. I first found your videos because I was facing a multi-level ACDF after testing for ALS. At the time, you had not yet been diagnosed. My surgery resulted in multiple side effects which I will have to deal with for a long time. When I later saw that you jad been diagnosed with ALS, it was like a kick in the gut. My medical issues seemed so insignificant. Your journey is so close to mine that I can only pray for you and count my blessings. Please know that so many of us are there for you and will always be there. You are a hero.

  • @lorib5341
    @lorib5341 14 часов назад +9

    So glad you went to Hawaii! it may have been different but you were there and soaked up some sunshine! I received my Go Find Some Joy sweatshirt and I LOVE it! Every time I wear it I will hear you say, go find some joy! Take good care of you!

  • @itzbridge
    @itzbridge 22 часа назад +15

    You are an ALS Warrior Darin, continue fighting every day. Your RUclips family is your community of Warriors and we are always standing beside you. Much love to you! 🤟

  • @lck21
    @lck21 13 часов назад +5

    Sending you lots of love and heartfelt prayers❤ AND much ALOHA from Hawaii.

  • @DerekDegroot-h7s
    @DerekDegroot-h7s 20 часов назад +5

    ALS warrior. Thank you for sharing. We are on the same path, you have been cutting some vines down to make my way easier. Go find some joy.

  • @robertshelleyduck3268
    @robertshelleyduck3268 13 часов назад +3

    Hello dear friend. I watch for your updates with great anticipation. It is so important to me to know how you're doing so I can pray effectively for you and your family. You're doing such a great job of showing us the real face of ALS, and your positive attitude is inspiring.🎉 love you, Darin.

  • @franiscoflores9511
    @franiscoflores9511 20 часов назад +5

    Been looking for an update from you for a while. I m so sorry about the recent progression you are experiencing. We love you. We are thinking of you.

  • @echogl
    @echogl 14 часов назад +5

    I can see the changes Darin from your last video and it makes me angry and sad. I pray there will be a cure for terrible disease. I know we need to find joy but this is hard, really hard. Sending hugs and prayers daily.❤🙏🙏🙏❤

    • @kerstintaugher1793
      @kerstintaugher1793 8 часов назад

      You inspire me so much! Thank you for using your energy to share your journey!

  • @jule3480
    @jule3480 8 часов назад +1

    That’s weird people being angry with you having a great airline experience.
    I’m so happy you have a great love and support network, but you’re such a fabulous person, I understand why you do❤

  • @patolal11
    @patolal11 12 часов назад +2

    Thanks for sharing your experiences so others can learn. Wishing you the best in what undoubtedly is a difficult journey.

  • @marjilaplante9579
    @marjilaplante9579 8 часов назад

    It's good to see you, dear man. I'm so sorry you have this dreadful disease. You are such an inspiration and such a beautiful soul. Sending love and comfort...

  • @jimmywarren6685
    @jimmywarren6685 14 часов назад +2

    Prayers for you, my friend!

  • @kateroro6024
    @kateroro6024 15 часов назад +2

    Good to see you and sad to see your disease progression. You are telling it like it is. Wishing you and your family a very Merry Christmas and lots of joy!

  • @ClaudiaSanchez-1991
    @ClaudiaSanchez-1991 14 часов назад +2

    You are such a strong person!! Go find some joy!! Happy Holidays!!

  • @lesliedelp3565
    @lesliedelp3565 15 часов назад +2

    Thank you for sharing and lifting the world with joy!

  • @MarthaGarrett
    @MarthaGarrett 10 часов назад

    S grateful you took that recent trip to Hawaii!! I appreciate you so much my friend.

  • @lindc1070
    @lindc1070 9 часов назад

    God bless you & your family this blessed season. Go find some Joy!❤

  • @laurie8883
    @laurie8883 7 часов назад

    You are loved! What a fantastic smile to end the video! You just gave everyone some Joy! Merry Christmas, to you and your family, from Minnesota!😊

  • @karenbutnotthatkaren5528
    @karenbutnotthatkaren5528 14 часов назад +1

    I'm torn between anger for you having to deal with this challenge, and admiration for the man you are. May your inner strength stay strong and continue to grow to help carry you through this journey. Love to you and your family. 💜☯️💜
    Karen

  • @stomas5640
    @stomas5640 21 час назад +5

    Sending prays and love to you. My Mom past away November 13, 2020 from ALS

    • @catlady6464
      @catlady6464 21 час назад +1

      I am so sorry, that's a hard loss losing our moms.💔

  • @margaretw3409
    @margaretw3409 12 часов назад +1

    We are all praying for you. Hugs

  • @LindaRobertson-io3zt
    @LindaRobertson-io3zt 20 часов назад +2

    Wow, I work in Houston for United Airlines as a gate agent and that makes me so happy to hear that you were treated well and with respect by United ! I follow you and I’m sending my love! You are so sweet! 😃💙

  • @paustinheaton
    @paustinheaton 20 часов назад +2

    So good to see & hear from you. I love that your joy still shining bright. Sending tons of love and hugs.

  • @ninjanana102
    @ninjanana102 13 часов назад +1

    Merry Christmas & Happy New Year!
    Thx for this update. ❤❤❤

  • @MrScrapman77
    @MrScrapman77 11 часов назад +1

    😢 I'm sorry brother you are amazing please keep going

  • @lc2363
    @lc2363 14 часов назад +2

    You are amazing! TY for sharing your journey. May you feel Jesus close to your heart daily!

  • @dilopez4791
    @dilopez4791 20 часов назад +1

    I just found you today as I opened the Orange County Register. So glad that you're recording so that your friends will always have your voice that your girls will be able to see your smile and hear your voice as well. It's been 5 years since I lost my mom from this ugly disease and her ability to speak was one of the first things to go. You're talking about your tongue thing today. Always praying for those with ALS. You're in my prayers.

  • @Gosia9585
    @Gosia9585 22 часа назад +3

    You are an inspiration - dont give up ! Thinking about you ❤

  • @LucaC2626
    @LucaC2626 13 часов назад +1

    Praying for you Darin.

  • @ConnorMcIntosh-z1u
    @ConnorMcIntosh-z1u 18 часов назад +1

    So glad to see you! I see you’re wearing Erin’s shirt… yayyy! Always praying for you sir. You make me think differently… making the effort to find joy.

  • @dl7281
    @dl7281 15 часов назад

    Glad for this update. Had a close friend long ago who journeyed through this. On the day he was dx he managed to save the life of another by literally talking him off a ledge. Your words are powerful. They’re never lost. People tell stories of stories and lives continue well beyond when bodies don’t. From someone with an end stage disease - on a similar, if different - path, I wish you peace day by day.

  • @cindyhorst8316
    @cindyhorst8316 17 часов назад +2

    Enjoy your trip to New York, Merry Christmas ⛄🎁🎄

  • @alyssawssinging4039
    @alyssawssinging4039 2 часа назад

    I’m a new follower you are so strong I deal with gastroparesis a chronic illness ur not alone

  • @kathyzager9426
    @kathyzager9426 13 часов назад +2

    You are amazing.

  • @ggc7318
    @ggc7318 13 часов назад +1

    Praying 🙏 ❤ for you

  • @RJin3D
    @RJin3D 22 часа назад +1

    Was looking forward to the update, my heart goes out to you.
    "Joy is not in things; it is in us." - Richard Wagner

  • @WildSmile70
    @WildSmile70 20 часов назад +1

    Your courage made my day!! Go find some joy ❤

  • @singleplayergamerr
    @singleplayergamerr 16 часов назад +1

    thanks for uploading. i do hope youll get well soon

  • @wheniamhome
    @wheniamhome 21 час назад +1

    i wonder? could your positive experience with the airline be due to your wonderful energy you put out? you are awesome!!! sending love to you and your family.

  • @bsuitt
    @bsuitt 15 часов назад +1

    Darin, is there a headrest you can get to attach to your power chair to support your head and use a pillow when sitting in a recliner to support your head, etc. A head weighs a lot and it takes a lot of strength to hold your head upright. Get you something to help support your head! You are such a smart and witty guy. Let’s hope for some fast new treatments to change the lives of all dealing with ALS! Now go find some JOY!

  • @holliethomson6147
    @holliethomson6147 18 часов назад

    Bless your heart ❤ Iam sending you so much love, strength, peace and comfort always xxx🙏🩷🫂

  • @mmmmlllljohn
    @mmmmlllljohn 15 часов назад +2

    Do you think United Airlines was so good to you because you’re so damn cute, Darin?!😘 I do! I have prayed that your disease would at least slow but you have had some major changes in the last year. I’m sure the Hawaii trip was bittersweet but I know you found some joy each day. I am also terminal and I believe we are going to a better place. Keep the faith and go find some joy! ❤️🇨🇦🙏

  • @nati6910
    @nati6910 21 час назад

    I enjoy your videos - you are very strong and upbeat! Have a Merry Christmas🎅🏼🎄

  • @drewcwsj
    @drewcwsj 12 часов назад +1

    Hi Darin, I'm bulbar onset so the voice has been fading for two years. Still able to be understood.
    Legs are a little better than yours for now.

  • @MrsSherrymcm
    @MrsSherrymcm 12 часов назад

    God bless you ❤

  • @donnalocke5713
    @donnalocke5713 18 часов назад +2

    ❤❤❤Hello again I comment on other video about medication that you tried but had to stop.Because you didn’t like side effect. My husband just started today Sunday 22, 2024 can’t remember name. Rilozole “will see how it goes. My husband is 64 had to retire this past July. We’re heart broken.we haven’t told our family yet with Christmas next week . We have one son 41 yrs. Daughter n law 2 Grandson 6 yrs. & 2 yrs. It’s so hard . I ‘m great full for you to listen too. ❤️❤️🙏🏻🙏🏻🙏🏻 Happy Holidays God Bless you and your Family

    • @DarinNakakihara
      @DarinNakakihara  14 часов назад +1

      Hi @donnalocke5713,
      Thank you so much for sharing your story with me. My heart goes out to you and your husband during this incredibly difficult time. Starting Riluzole can feel overwhelming, but I hope it brings him some comfort and benefits.
      It’s so hard to carry this kind of news, especially with the holidays approaching. Please know you’re not alone in this-leaning on your loved ones, even when it’s hard, can bring moments of strength and connection.
      I’m so grateful to have you here, and I’ll be keeping your family in my thoughts and prayers. Wishing you peace, love, and small joys this holiday season. God bless you all. ❤️🙏

    • @donnalocke5713
      @donnalocke5713 13 часов назад

      @ thank you so much for your words of encouragement..

  • @joanbeach644
    @joanbeach644 21 час назад +1

    I have been thinking about you. God Bless You. I now follow you on Instagram. 🙏🏻🙏🏻🙏🏻❤️

  • @kathyiwahiro
    @kathyiwahiro 18 часов назад +2

    I just read your inspiring story in the Orange County Register… I too have a terminal stage 4 cancer diagnosis so, I look forward to reading and being uplifted by your stories. Prayers, thank you and sending Joy 🎄

  • @jasonwhelan12
    @jasonwhelan12 21 час назад +2

    Were you exposed to pesticides/insecticide before this happened. I’m currently going through a diagnosis after being exposed to an insecticide called Tempo Dust after having a company treat for wasps and ants

    • @patriciaflaherty
      @patriciaflaherty 20 часов назад

      That is interesting. How long ago were you exposed to that chemical? When my mom was diagnosed with ALS in 2006 scientists were studying higher instances of ALS in airplane pilots and people who traveled by airplane extensively, but I never heard any outcome of those studies.

    • @jasonwhelan12
      @jasonwhelan12 14 часов назад +1

      @ several times when abating it. Got it my face/eyes, on my skin and even inadvertently inhaled it not knowing it was treated in another corner of my u shape entry way and I was blowing leaves. It hadn’t rained in over 60 days in my area so the dust was not clumpy and easily displaced into the air.
      Interesting about the airline pilots bc that means radiation. Which means people who get a lot of CT (like athletes) have a greater risk as well. They say X-rays contrast is heavy in metals containment. But you will never hear the medical industry admit that. 🤷‍♂️🤷‍♂️🤷‍♂️

  • @MrsBeasleys1111
    @MrsBeasleys1111 12 часов назад

    ❤❤❤

  • @laurievillotta7935
    @laurievillotta7935 12 часов назад

    You may want to try a soft neck collar to help stabilize your neck more and feel a little more supported. Praying for you.

  • @veneitawillis7897
    @veneitawillis7897 14 часов назад

    Terrible condition, quite a fight ahead for you. stay strong

  • @bastian6173
    @bastian6173 19 часов назад +2

    NY is not going to be your last airplane trip. Steven Hawking did a zero g flight at 65 years of age. Dream big

  • @kevinb.jonesphotography4571
    @kevinb.jonesphotography4571 21 час назад +1

    God Bless

  • @Ljosi
    @Ljosi 22 часа назад +2

    On 1.5 playback speed you sound like before ALS, so ALS basically slowed your voice down by roughly 1/3 in a year. Anyway, the most important thing is that you are pain-free, all else is less important
    Go find some joy

    • @finestnostalgia
      @finestnostalgia 10 часов назад

      1.25 is more close to his original voice but still very interesting observation

  • @tnabna8999
    @tnabna8999 8 часов назад

    ❤🙏🏽

  • @MadamGazell
    @MadamGazell 20 часов назад

  • @fufurabumbacka
    @fufurabumbacka 22 часа назад +2

    No worries. We all do following you and falling apart. Not that quickly, but following you, anyway. We all die sooner or layer.

  • @youtubingwithyou
    @youtubingwithyou 22 часа назад +1

    Keep up the fight, Darin! Praying for you always. 🙏🏻

    • @fufurabumbacka
      @fufurabumbacka 22 часа назад

      You Americans know only one song for all circumstances lol 😂😂😂

    • @sananselmospacescienceodys7308
      @sananselmospacescienceodys7308 22 часа назад +1

      @@fufurabumbacka You Americans? What nationality are you?

    • @fufurabumbacka
      @fufurabumbacka 22 часа назад

      ​You are asking wrong questions. Im not suprised​@@sananselmospacescienceodys7308

    • @youtubingwithyou
      @youtubingwithyou 20 часов назад

      @@fufurabumbackaGo play elsewhere. Your disrespect for religious beliefs and for a man who is fighting a terminal illness has no place here.

  • @catlady6464
    @catlady6464 21 час назад

    It's good to see this update. You are staying strong and fighting and it shows. May God bless you and give you comfort through this difficult journey.🩷

  • @DirlingSwervish
    @DirlingSwervish 18 часов назад

  • @celestefitzgerald4399
    @celestefitzgerald4399 9 часов назад