📢 Announcing My ALS Diagnosis 💔🕊️

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  • เผยแพร่เมื่อ 29 พ.ย. 2024

ความคิดเห็น • 537

  • @jacobbhuang
    @jacobbhuang 7 หลายเดือนก่อน +153

    Hi Mr. N!!! I’m not sure if you remember me (Jacob Huang) but I was your student in 4th grade !! Time really flies!!! I hope you’re doing well, I’m praying for you 🤍 I’m a student at UC Berkeley now but you were truly one of my most memorable and favorite teachers growing up. I hope you know how important and influential you were to some of your students and I wish you the best of luck with the rest of your career. Thank you for being such a great teacher and inspiration in my life 🤍🤍

    • @adamagnus
      @adamagnus 6 หลายเดือนก่อน +3

      How would he remember you from YEARS ago when you haven't even told him your name? 😂😂😂

    • @NiechZyjePolska48
      @NiechZyjePolska48 6 หลายเดือนก่อน +2

      His name is notJacobA

    • @Mariepresleyl
      @Mariepresleyl 6 หลายเดือนก่อน +12

      ​@@adamagnusIt doesn't matter if he remembers him/her specifically. This person is a former student and is letting him know that he is held in high regard. This poster is a college student and is letting him know how influential he was in his life. That is an honor for anyone that cares.

    • @jankasza5538
      @jankasza5538 6 หลายเดือนก่อน

      💕

    • @BeingNancy
      @BeingNancy 6 หลายเดือนก่อน +2

      ​@@adamagnusWhat a strange thing to write. I thought his comment was so encouraging, touching and pure.

  • @nicolefobes7083
    @nicolefobes7083 7 หลายเดือนก่อน +187

    I’m with you my brother, 3 years in symptoms started at 37 I’m now 40. Married to my best friend & we have 2 boys 11 & 6. I’ve had 3 opinions & I’m limb on set as well, get into a ALS clinic for regular treatment on symptoms. & start modifying your home, you want it done before you HAVE to need it. Surround yourself with love & a strong care team doctors & family. This disease does not just effect us buy our loved once as well. Buckle up because there’s no way around it this disease sucks & trying to stay positive is easier some days then others. I hope you’re slow progressing, but when you’re ready file for social Security and disability & get on Medicaid or Medicare depending on your age. This disease is ridiculously expensive & unfortunately we have little funding & grants available to us.
    I truly wish you & your family much luck & love on your journey. You are not alone, one day at a time 🩵💜

    • @providencephelps1497
      @providencephelps1497 7 หลายเดือนก่อน +11

      I wish you a lot luck. ❤❤❤❤

    • @antonygikonyo7914
      @antonygikonyo7914 7 หลายเดือนก่อน +6

      What do you mean by little funding,...I remember the millions raised across the world on the (I've bucket challenge) was for finding cure n tangible therapies for ALS,... you need to investigate how those funds were used or misused because talking about little funds is simply ridiculous to say the least..... eeiish...!!

    • @kbkb117
      @kbkb117 7 หลายเดือนก่อน +4

      This is advice I'll take with me, although hoping I'll never need it. Much love to you and your wife and boys. May we all be blessed to find comfort love and peace

    • @ajsbpelq
      @ajsbpelq 7 หลายเดือนก่อน

      ​@antonygikonyo7914 Are you thinking about Motor Neuron Disease (MND) The bucket challenge was fundraising for MND. I most certainly could be wrong.

    • @sch728
      @sch728 7 หลายเดือนก่อน

      😢😢😢😢

  • @joellenconway5464
    @joellenconway5464 7 หลายเดือนก่อน +73

    My husband was diagnosed 2014, Because of the progression of his disease it was diagnosed as PLS which is the lower spectrum of ALS… slower progression.. and there’s no way of telling if you fit that prognosis into your months into diagnosis….. now 10 years greater, he’s talks likes he has a few drinks and unsteady walking and some breathing issues, but holding his own …
    good lucky my friend….

    • @enterthebruce91
      @enterthebruce91 6 หลายเดือนก่อน +6

      I've known two people with ALS and one of them passed away within a year of diagnosis, while the other one has had it for about 15 years and is now severely disabled. I have mild cerebral palsy myself so I can kind of relate to the struggle (hoping for a surgery in the near future to restore some of the mobility loss in my right leg, I've never had a surgery on my right leg before so I'm assuming there is some sort of muscle lengthening surgery to help me out, and I've had three surgeries on my left side. The struggle is real and I really wish more than anything that these conditions never existed. I'm so tired of suffering and knowing others are suffering far worse than I am-It's a very evil world we live in.

  • @bobbiemoore3118
    @bobbiemoore3118 5 หลายเดือนก่อน +5

    I have a family member who has ALS and just celebrated her 10th anniversary.

  • @jaceek2030
    @jaceek2030 7 หลายเดือนก่อน +23

    Have you had an MRI? A Lumbar Puncture?
    I'm sure you have, but I have to share my hub's story. It is so much like yours, only it was his L leg. Neuro 99% sure he had ALS. However, he did an MRI and a Lumbar Puncture. 3 long weeks later we went for results. Nurse greeted us with, "It's good news, it's MS!". The LP was positive for O bands (Oligoclonal) and negative for protein.
    This was in 2010. Of course usually getting an MS diagnosis is NOT great news, but in our case, it was. 14 yrs later my guy has also survived a stroke.
    Today he walks with 2 trekking poles, and is independent with everything. He has to self cath his bladder 4 X/day, but he's faster in the rr than I am!
    Wishing you all the best.

  • @michelehetland436
    @michelehetland436 7 หลายเดือนก่อน +43

    Fellow teacher here. Sometimes there are just no words. I’m sorry you have to walk this path I’m sending you good thoughts.

  • @teach4him841
    @teach4him841 7 หลายเดือนก่อน +33

    I stumbled onto your video…..I believe in the power of prayer….I will be praying for you and for God’s healing to be so great you will be a living testimony to His mighty power…..May God bless you🙏🏻

  • @beam3819
    @beam3819 7 หลายเดือนก่อน +57

    Hi. Ret nurse here. We had an ALS patient, with a wife that fought like a tiger for her husband. He lived for over ten years. Its 30 yars ago so I hope you will fo better. God Be With You. ❤ Norway

    • @keithhutchins8803
      @keithhutchins8803 6 หลายเดือนก่อน +8

      I’m on my 8th year.

    • @Tayyab-hr1gp
      @Tayyab-hr1gp 6 หลายเดือนก่อน

      He has ALS since 30 years?

    • @RobdeKlerk-qg6lc
      @RobdeKlerk-qg6lc 3 หลายเดือนก่อน +1

      ​@keithhutchins8803 Hang on my friend...New treatment on the way they say....

  • @cherricorcoran9523
    @cherricorcoran9523 7 หลายเดือนก่อน +32

    I have always loved the quote “attitude is more important than circumstance “. As a retired nurse, I can tell you that attitude is everything. Praying for your healing and strength.

  • @carolwhite6979
    @carolwhite6979 6 หลายเดือนก่อน +4

    My dear Mom passed from ALS after 3 years, almost 16 years ago. She was 86.. Her mind was bright and clear, and her joy in life never wavered. Have courage, This is a harsh diagnosis. Keeping you and your family in my prayers. ❤️🙏🏻🕯🙏🏻❤️

  • @dragon7taekwondo
    @dragon7taekwondo 5 หลายเดือนก่อน +11

    Just had the diagnosis myself. I have to wait a month for confirmation. I will look out for what is happening in your world. I plan to stay positive whilst tidying up my life. Best wishes from me.

  • @karenjones4882
    @karenjones4882 7 หลายเดือนก่อน +61

    Hi Darin. This video just popped up on my feed, but I hadn’t seen any videos of yours before. I’m glad I clicked on it and listened to you. I am so sorry about your diagnosis. The way you talked about it all was very calmly, carefully and very bravely explained, but I could hear the shock and fear in your voice. How could you feel otherwise?! My heart breaks for you and your family, knowing how difficult it must be to try to comprehend what’s happened to you, and wondering about what’s yet to come. I am a pray-er, so i hope it gives you some small measure of comfort to know that I will be holding you and your family in the arms of my heart every day when I pray. Wishing you much love, strength and many years of the most optimal and beautiful life ever possible. I will continue to follow your videos as you navigate this challenging journey that has been placed before you. Yours, Karen from Amherstburg, Ontario, Canada. ❤

    • @knyyattah
      @knyyattah 7 หลายเดือนก่อน +4

      ❤❤❤

    • @sgray4995
      @sgray4995 7 หลายเดือนก่อน +8

      Same here, this just popped up, never seen you prior. We are all here for you as it can/could happen to any of us.

  • @justinschrank4806
    @justinschrank4806 5 หลายเดือนก่อน +3

    YOU CAN BEAT THIS!! THEY ARE SO CLOSE TO A CURE

  • @debbiew4534
    @debbiew4534 7 หลายเดือนก่อน +52

    You are so loved Mr. N. It’s hard to know the right words to say. We are heartbroken for you. You have brightened and boosted up so many lives- I hope you’ll let us pay even a glimmer of that love and support back to you as you and your sweet family navigate this difficult journey.

  • @myteachersleepsinschool3652
    @myteachersleepsinschool3652 7 หลายเดือนก่อน +28

    Darin, fellow teacher and believer here. I am praying for you. May God's peace surround you as you walk through this journey. I wish the news was different. My prayers will be with you. I admire your positivity and willingness to share this to help others. Continued prayers for you!

    • @knyyattah
      @knyyattah 7 หลายเดือนก่อน +1

      🙏🙏🙏

  • @helloliteracy
    @helloliteracy 7 หลายเดือนก่อน +46

    Darin, I want you to know that I'm here with you, every step of the way. Discovering that you have ALS must be incredibly overwhelming, but I want you to remember that you're not alone in this journey. You are one of the strongest people I know, and I have no doubt that you have the resilience and courage to face this challenge head-on. While ALS may change certain aspects of your life, it doesn't change who you are at your core - an amazing individual with so much love, passion, faith, and strength within. Do not underestimate the healing power of a PMA (positive mental attitude) in your health journey. Hold onto hope, cherish the moments that bring you joy and I look forward to coming to see you in June! Love, Jen

  • @RebeccaAnderson-u4y
    @RebeccaAnderson-u4y 7 หลายเดือนก่อน +14

    I am a fairly new you tuber and feel like I was led to your site. Quickly, my husband was diagnosed with ALS when he was 70 and made it to 2 weeks before his 75th birthday. I think they give the 3-5 time line because generally the diagnosis comes to older people. I will be praying for you! I won’t lie - it is a terrible diagnosis. My husband has been gone for 5 years. He fought every day to find joy in each day! I will be following you and feel free to ask me any questions.

  • @lauraleigh5562
    @lauraleigh5562 7 หลายเดือนก่อน +10

    I took care of a lady that lived 18 years. I was with her 9. She had a great medical team and family. They had her care down to a science when I came on board. Her husband told me the part of her brain affected was the bulbar region. She was amazing.

  • @nyx4love
    @nyx4love 4 หลายเดือนก่อน +9

    My husband got this diagnosis 4 days before he passed away because even though he tried for the past 2 1/2 years to get an appointment with a neurologist it never happened until I could not move him anymore from the wheelchair to the recliner and bed. In the hospital he saw a neurologist for the first time and got the diagnosis, He was also due to have surgery on his spine like you did. He could have lived longer with more quality if he had gotten the diagnosis early on. My heart goes out to you ... I lost him on June 8th and I am still crying. I know what this means. Good, you are not alone and have support from family and hopefully friends. I send you a gigantic hug and lots lots lots of love!!!

    • @nancynalepinski8705
      @nancynalepinski8705 4 หลายเดือนก่อน +2

      Im so sorry for your loss.

    • @mmmmlllljohn
      @mmmmlllljohn 3 หลายเดือนก่อน +1

      I’m so sorry for the loss of your husband. It is so tough on loved ones left behind. ❤️🇨🇦

    • @louern123
      @louern123 3 หลายเดือนก่อน +1

      omgosh i am so sorry 💔💔

  • @geraldineduzick7474
    @geraldineduzick7474 4 หลายเดือนก่อน +6

    This just popped up on my feed. Darin so sorry to hear about this. I lost my husband Jim to ALS on January 22, 2023. He died 13 months after his diagnosis. The first problem we had was getting the diagnosis. It took years. There doctors who refused to give us the diagnosis because "it was so devastating." So there were months before that we weren't seeking treatment nor VA benefits and we should have. Jim was accepted into UCI but died within hours of that acceptance. I continue to research ALS because after he died, I learned he had a great grandfather die of "paralysis and old age" so that means it might be genetic and my children or grandchildren could be victims of this horrible disease. I am still teaching in a Southern California high school but I have considered researching ALS after I retire. There are a few things I am starting to believe about ALS and I will share those opinions. Like we have cancers all over the body, we have neuron disease all over the body. I think Parkinson, Alzheimer's, Frontal Dementia, Stiff persons syndrome, Huntington disease and ALS are examples. The problem with ALS, it kills faster as it paralyzes the diaphragm. But I think a cure for one would definitely be a stepping stone care for the others. So support research for all. I think we may discover that motor neuron disease is an autoimmune disease triggered by genetics which is triggered by toxins which is triggered by microbes in the diet. We really need to get on top of this. It is 80 years since Lou Gehrig died and we have nothing.

    • @DarinNakakihara
      @DarinNakakihara  4 หลายเดือนก่อน

      Wow! Thank you for taking the time to write this post. I'm so sorry about your husband. I appreciate your insight.

    • @RobdeKlerk-qg6lc
      @RobdeKlerk-qg6lc 3 หลายเดือนก่อน +1

      They say that new treatment is closer than ever....some good stuff on the way...

  • @michelesmall3858
    @michelesmall3858 7 หลายเดือนก่อน +11

    This just showed up on my feed, I don’t know u, but my heart ❤️ and love is w u and ur family. I’m a follower of Jesus and he is our only hope. Plz lean on Him for strength bc He does love ❤️ u more than you’ll ever know. ❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

  • @AKlakefront
    @AKlakefront 7 หลายเดือนก่อน +30

    I’m your age, recently diagnosed with Multiple Myeloma. Like ALS, online, the statistics look terrible, but Like Fred Hutch Center told me, you are a statistic of one. Keep going; I’m pulling for you.

  • @JoyLNg
    @JoyLNg 4 หลายเดือนก่อน +2

    My husband died of ALS September 20 of 2022, I’m sorry you have to deal with this dreadful disease. God Bless you and your family.

  • @utkphilobio
    @utkphilobio 5 หลายเดือนก่อน +4

    I don't know you, but I am so sorry. My mother was just diagnosed so I am just now dipping my toes into this community. Thank you for sharing your story. It means a lot to me.

  • @lisab4829
    @lisab4829 7 หลายเดือนก่อน +37

    Look up Jason Becker, guitarist. He’s had ALS for 35 years now.

    • @UFOJaneKyle
      @UFOJaneKyle 7 หลายเดือนก่อน +4

      More comments like these !!!! This is 2024; I feel like we have all the data and people to find all the cures. Let’s do it 🔥

    • @starlight7830
      @starlight7830 7 หลายเดือนก่อน

      Jason won the ALS lottery of 35 years !!!! Most people get 2- 5 years which is still better than nothing !

    • @mysterycomment1553
      @mysterycomment1553 7 หลายเดือนก่อน +5

      Sure he’s lived 35 years but it depends on what you consider “living” is.

    • @73cidalia
      @73cidalia 6 หลายเดือนก่อน +3

      Look into a whole foods ketogenic diet and curcumin supplements with high absorption. There are studies showing promising results in slowing down the progression of ALS.

    • @lsaraswati957
      @lsaraswati957 4 หลายเดือนก่อน

      @@mysterycomment1553Cathy Jordan lived fairly well with ALS for 38 years using cannabis.

  • @madelinehstn
    @madelinehstn 3 หลายเดือนก่อน +4

    You are in my prayers.

  • @SarahLimongelli
    @SarahLimongelli 7 หลายเดือนก่อน +21

    Fellow teacher subscriber from Costa Mesa. Sending all of the love to you and your family. You are such a ray of sunshine in our community. I’ll be cheering you on.

  • @drewcwsj
    @drewcwsj 4 หลายเดือนก่อน +3

    Last July I started having speech issues. Six months ago my right calf lost 80% of strength, a speech therapist noted diaphragm and tongue weakness. Now my neurologist thinks it is possibly ALS. I go to an ALS clinic on Wednesday to confirm. I'm in Portland OR.

    • @nancynalepinski8705
      @nancynalepinski8705 4 หลายเดือนก่อน

      🤍

    • @RiteshKulkarni-ps7ug
      @RiteshKulkarni-ps7ug 3 หลายเดือนก่อน

      How r u now

    • @brbfitness9346
      @brbfitness9346 19 วันที่ผ่านมา

      How are you doing what was the diagnosis?

    • @drewcwsj
      @drewcwsj 19 วันที่ผ่านมา

      @@brbfitness9346 ALS has been confirmed

  • @marjilaplante9579
    @marjilaplante9579 7 หลายเดือนก่อน +17

    Very rough diagnosis... I will be sending healing and loving energy to you♥️🙏 we all meet for a reason and miles and space mean nothing to spirit🔥

  • @beverly9885
    @beverly9885 7 หลายเดือนก่อน +7

    The ALS society is incredible. They will help you every step of the way and even pay t for renovations to your home. I don’t know you, but I have a rare neurological condition and my heart goes out to you. I am also a retired (by disability) teacher in Southern California. I will pray for you and follow your Journey. Best wishes.

    • @mariannasharp3662
      @mariannasharp3662 4 หลายเดือนก่อน

      Can i ask, do you have CIDP?

  • @debbieanne7962
    @debbieanne7962 6 หลายเดือนก่อน +5

    Very sad, I don’t know your channel, this video just popped up in my feed. My story. I was diagnosed with Severe Heart Failure last September. The hospital staff were of the opinion I’d be dead in 6 months. I didn’t dwell in this. Went home with a ton of medication, changed my lifestyle, no alcohol or processed foods and plenty of exercise. I’ve never missed a minute of sleep worrying even if the survival rate is 5 years. I saw my cardiologist in December who gave me the good news that my heart is back to normal. See her again next month. I feel really good and luckily I live in Australia where we have universal healthcare. Try not to stress, it will make your condition worse, live for the day. People have survived dire prognosis for many years. I don’t pray but I wish you the best. I’m 63 years old and hope to live at least another ten years

  • @terrificintk
    @terrificintk 7 หลายเดือนก่อน +12

    Darin- I consider you a friend and a brother in Christ. I have watched you on TH-cam for many years and I am just crying right now. I am sitting here, working on lesson plans for the week, and I saw your video pop up. I’m always so happy to hear from you, but, I gotta say, not so much today. 😌 I will be praying for you, your wife, your beautiful girls, and your family. Keep holding on to your Joy!! 🙏🏻

  • @ibhomer1017
    @ibhomer1017 7 หลายเดือนก่อน +12

    I have a friend whose husband has been dealing with ALS for approximately 11 years now, and painting is one of his favorite hobbies! Wishing you only the best in your journey!

    • @Tayyab-hr1gp
      @Tayyab-hr1gp 6 หลายเดือนก่อน

      Is his daily life is still normal. Or only static position

  • @dawnbaker7861
    @dawnbaker7861 7 หลายเดือนก่อน +7

    My heart goes out to you and your family. I took care of my sister who was diagnosed with ALS when she was 58. It was a really rough time for her, she wasn't a fighter thus passing within a year and a half. I became her guardian of her care on the day she passed. What I took away from the experience. Get involved with the Lou Gherig foundation, so many resources for both patients and families. Be a fighter, which you seem to be. I went to ALS walks and met people who were thriving and fighting. There is hope. I wish you all the best in your journey. God bless you 🙏.

  • @Seethe-j2c
    @Seethe-j2c 2 หลายเดือนก่อน +2

    I feel for you. You’ve faced more trauma in your life than anyone should have to go through. You’ve got my best wishes and support going forward and I hope that your disease progresses slowly.

  • @jaynav7938
    @jaynav7938 4 หลายเดือนก่อน +5

    I feel for you brother. My wife was diagnosed with ALS about the same time and she also had back surgery to fix stenosis issue. Her symptoms are progressing fast that also started with left arm weakness. I wonder if having back surgery contributed in triggering als. I anyone knows please comment. God bless brother. I’m at Lourdes France right now and praying for you and my wife.

    • @DarinNakakihara
      @DarinNakakihara  4 หลายเดือนก่อน +2

      Oh wow! I'm so sorry to hear about your wife. God bless you both. I have wondered about the whole next surgery correlation. But I tried to focus on what's in front of me because there's nothing I could do about what happened behind me.

    • @RobdeKlerk-qg6lc
      @RobdeKlerk-qg6lc 3 หลายเดือนก่อน

      How about new treatment on the way my friend ??

  • @dafni10565
    @dafni10565 6 หลายเดือนก่อน +3

    Hi Darin, I'm new here. I've been struggling alot over the past year. I went from firefighter, to pharmacy assistant, to not being able to work at all. I have severe chronic pain, muscle stiffness, cramps, weakness and muscle atrophy. Been waiting to see a neurologist for over a year. Ive had 4 turn me down. Multiple mri, blood tests , xrays, emg& ncs. I have nerve Damage but still no diagnosis. Its so hard, so i can relate to what yourr going through. I hope and pray to see a neurologist soon & get the help I need. Im parent too. Makes it much harder for us & for them. God be with you on your journey. 🙏💜

  • @_DrDrakeRamoray
    @_DrDrakeRamoray 4 หลายเดือนก่อน +1

    I have been to UCI for ALS testing years ago and have had two EMG.s. Both years apart from each other. Both referrals were by other doctors at UCI. It was negative but did have weakness in my left side as well along with numbness so that's why they ordered it.. The doctors there are good but if you don't have ALS they don't really care if you tell them your symptoms. They just go by if you have weakness or if the EMG or nerve conduction shows anything. They become rude if you return even if you they ask you to come back for a recheck like you are wasting there time. I thought it was bizarre. They were like why are you here? I said because you told me too. The last visit I had they said well you don't have ALS but you might have something else. I asked do I need to come back? They said only if you something happens. I was like what?...I didn't say anything and just left because that place is scary AF. Still have symptoms but don't plan on going back. That was 4 years ago. UCI also well known for just sending you a specialist who then send you to another especially if you have PPO. I basically stop going to any doctor and just deal with the weakness, cramping sore legs and arms.

  • @maritzamarchetti31
    @maritzamarchetti31 7 หลายเดือนก่อน +9

    Praying for you Mr Darin. Blessings!

  • @IntoTheSleep92
    @IntoTheSleep92 7 หลายเดือนก่อน +18

    My heart, truly and sincerely hurts for you and your loved ones as well as goes out to you all throughout all of this... I too have been afflicted with ALS, sometime in my late 20's although I don't know when my symptoms first started. I just had my 32nd birthday on February 15th and I was diagnosed last year on February 20th, I too hope that I am one of those individuals that lasts for a while for so many reasons. I will include you and your loved ones in my daily prayer that I have with my Dad, may God bless you and continue to give you strength throughout all of this.

    • @jorykevinberger7047
      @jorykevinberger7047 6 หลายเดือนก่อน

      My birthday is also February 15. I was meant to see you and give you some love. You are not alone, you’ll be in my birthday heart.

    • @IntoTheSleep92
      @IntoTheSleep92 6 หลายเดือนก่อน

      @@jorykevinberger7047 Thank you so much for your kindness, I Greatly appreciate it I really do. I meant to respond right after I saw your comment and I sincerely apologize for not doing so until now. I have been dealing with a lot, here very soon I will be undergoing surgery to have a feeding tube placed which has had me Extremely stressed out and every time I turn around I wind up going to the hospital for excruciating kidney stone.

    • @IntoTheSleep92
      @IntoTheSleep92 2 หลายเดือนก่อน +1

      @@jorykevinberger7047 Thank you for your kindness, I feel bad for taking this long to reply. I have been an emotional wreck ever since I received my diagnosis, I knew I had ALS during fall time the year before and I was hoping I wouldn't hear that I was right... I still feel like I'm in the Twilight Zone and I Highly doubt that will ever go away.

  • @kathyfreeman9596
    @kathyfreeman9596 7 หลายเดือนก่อน +7

    Many prayers n hugs sent Darin 🙏🙏🙏❤️💜🇨🇦

  • @LAlberding
    @LAlberding 4 หลายเดือนก่อน +2

    Oh my gosh. My husband also had ACDF surgery. He also had unexplained hand/arm weakness. He also went to his EMG appt alone because it seemed so routine, and he also got the diagnosis of ALS and had to come home and tell me. It has been 6 months. Hang in there. I’m thinking of you.

    • @DarinNakakihara
      @DarinNakakihara  4 หลายเดือนก่อน +4

      No way! That is an incredibly unfortunate coincidence. Please tell your husband that I am very sorry. I hope he is doing OK

  • @repunzalrepunzal6063
    @repunzalrepunzal6063 7 หลายเดือนก่อน +7

    I am so sorry that you received this diagnosis. I was suffering from weakness and thankfully my EMG showed Myasthenia Gravis. Every day I’m thankful. One thing I’ve seen is recording your voice/words for future use. I hope that progression is so very slow. I’ll be following your positivity!!! Prayers from Florida.

    • @annabellamarston448
      @annabellamarston448 6 หลายเดือนก่อน

      I too have weakness and MG, I feel so bad some days but took heart when my neurologist told me it is a good day for him when he can tell a patient they have MG and not some more severe disease. Stay well , none of these illnesses are easy to live with.but you have lots
      Of people cheering for you.

  • @ClaudiaSanchez-1991
    @ClaudiaSanchez-1991 7 หลายเดือนก่อน +10

    I’m a Middle School teacher in Southern CA too (Montebello). Prayers to you and your family!!! Thank you for sharing such private news!

  • @anniecrowther8423
    @anniecrowther8423 7 หลายเดือนก่อน +5

    Our stories are so similar. Neck surgery with left arm that never recovered completely. The nerve twitches a lot. They tested me for ALS but it didn’t seem to show that tendency. They now think it’s vaccine injury from the Covid vaccine. It’s been a hard and scary road. I don’t know my diagnosis yet. But I’ll be cheering you on and admire you attitude with such a struggle. You’re amazing!🙏🏻❤️‍🩹🙏🏻

  • @dellahicks7231
    @dellahicks7231 6 หลายเดือนก่อน +3

    I don't know you sir, however due to how amazing our sons teachers were from K-12, but mostly the high school years, he decided to become a teacher.
    I know the love and care those students and parents will rally around you.
    May you be Blessed with as many years as you are hoping for.
    Thank You for sharing your life with us.
    Blessings & Love from Canada. 🇨🇦

  • @juliaannepark
    @juliaannepark 7 หลายเดือนก่อน +7

    I watched your video and my heart is broken 😢😢😢. I’ll say prayers for you and your family. With best love to you.

  • @BarbaraC02
    @BarbaraC02 7 หลายเดือนก่อน +10

    I'm putting you in my prayer circle... sending you loving support and healing prayers. I am so sorry for this unexpected and unwanted prognosis.

  • @BeckyPierce-w6z
    @BeckyPierce-w6z 7 หลายเดือนก่อน +5

    Prayers coming your way

  • @jcorcoran4946
    @jcorcoran4946 7 หลายเดือนก่อน +8

    ❤ from Australia 🇦🇺 Hang in there brother. praying for you and your family!!!

    • @knyyattah
      @knyyattah 7 หลายเดือนก่อน

      ❤️

  • @krissydmckenzie
    @krissydmckenzie 5 หลายเดือนก่อน +4

    I am so deeply sorry to hear this news. Thank you for your vulnerability and bravery in sharing. I am sending you and your wife so much love. ❤

  • @tarajones1206
    @tarajones1206 7 หลายเดือนก่อน +7

    Fellow teacher from Alabama. Sending prayers for you , your family, and school family! We love and support you! ❤

  • @LIVEINPEACE2023
    @LIVEINPEACE2023 7 หลายเดือนก่อน +3

    I am a believer. I prayed and will continue to pray for you & your family. 🙏✝️

  • @DrGerick
    @DrGerick 7 หลายเดือนก่อน +7

    I will pray for you. My grandma had ALS and she too had a fighting spirit. You’ve got this! You sharing your journey will bless many. I have followed you for a while and we need your voice.

  • @splash6427
    @splash6427 7 หลายเดือนก่อน +5

    🙏 ❤️ 🙏
    For You
    Always & Forever

  • @rojdee1
    @rojdee1 7 หลายเดือนก่อน +3

    Darin - I’ll pray for you and your family.

  • @diamondsibley9039
    @diamondsibley9039 7 หลายเดือนก่อน +5

    Praying for you 🙏🙏🙏

  • @beherenow7724
    @beherenow7724 5 วันที่ผ่านมา

    Watched your surgery vids.
    So sorry to hear of your ALS diagnosis.
    I will be praying for your health.
    Live and be as well as you can for as long as you can and me and many others hope for the speedy arrival of breakthroughs for you and other ALS sufferers.
    You matter to many.people.

  • @Pavlova4534
    @Pavlova4534 6 หลายเดือนก่อน +3

    Hi Darin you just popped up in my feed and I’m glad that I clicked on your page. I lost my brother in January of this disease. He had just retired and was ready to enjoy his life with his wife. He never ever lost his zest for life or sense of humour. He was given 7 years to spend with his wife and family until he left us. The only thing he ever complained about was the fact that he hated watching his wife doing everything for him. She was by his side through everything. Keep up your positive attitude,Sending prayers from Sydney Australia 🇦🇺 ❤

  • @veronicaamaya8290
    @veronicaamaya8290 7 หลายเดือนก่อน +5

    Praying for you and your family ❤ 🙏🏼

  • @beverly9885
    @beverly9885 7 หลายเดือนก่อน +4

    You need a really good physical therapist. It’s incredible how much they can help, even if you are progressing. BTW, having to stop teaching at the age of 54 was the most difficult thing I ever did. I volunteered for as long as I could! Love the positive attitude. It does make a difference!

    • @happycook6737
      @happycook6737 6 หลายเดือนก่อน

      Hey, you can still volunteer by Zoom or phone if it's your passion. Elementary schools are always looking for people to listen to kids read

  • @patept3709
    @patept3709 7 หลายเดือนก่อน +4

    Darin
    You are in my prayers
    GOD be with you

  • @schuylerjones2213
    @schuylerjones2213 4 หลายเดือนก่อน +1

    I was tested for this 6 years ago due to extreme weakness. I ended up not having ALS but my heart goes out to you. Keep up the positivity! You have a new subscriber! 😊

  • @blucky1250
    @blucky1250 7 หลายเดือนก่อน +3

    Holding you in my heart and prayers ❤

  • @charmayneworrell5647
    @charmayneworrell5647 3 หลายเดือนก่อน +1

    Thank you for the video. I just found out yesterday that a friend has ALS. So i was searching to see what it relly is and came across the video. Thank you. Keep the faith.

  • @restorativelisteningproject
    @restorativelisteningproject 7 หลายเดือนก่อน +6

    Dear Mr. K, I am so very moved by you. You exude kindness and courage in equal measure. It is wonderful to see how loved and supported you are by your students, friends, and colleagues. It is inspiring to hear how you are sharing what you are going through with als in the service of others. I will hold you in prayer light and grace. You are not ever alone with this. Sending you much love.

  • @rhoyalt_time8992
    @rhoyalt_time8992 7 หลายเดือนก่อน +5

    May God be with you as you walk this journey. Praying for you and your family.

  • @susankahlow1646
    @susankahlow1646 7 หลายเดือนก่อน +3

    Prayers for you. Im so sorry you are dealing with this horrible illness.

  • @reginahall9217
    @reginahall9217 7 หลายเดือนก่อน +4

    Fellow teacher from Brea. I am praying for you and your family with my whole heart. ❤️

  • @amyt6254
    @amyt6254 2 หลายเดือนก่อน +1

    I just discovered your channel today. My heart goes out to you! I will pray for you! I subscribed.

  • @jeffmccormic8640
    @jeffmccormic8640 4 หลายเดือนก่อน +1

    So sorry it’s not a diagnosis anybody wants. I’m almost 3 years in now and just had to sign up with hospice. You have to accept the fact that 100% die from this but they don’t know how fast your progression will be. Get everything in order get on some owf the facebook ALS pages. Your faith and attitude will mean everything all the best brother

  • @Anne051357
    @Anne051357 7 หลายเดือนก่อน +4

    Hello from NH Darin. You just popped on my feed - I did not know of you previously. I am so sorry for your unfortunate diagnosis- that is certainly a shock to the system - especially as you were already recovering from prior issue. I am a praying person and I will certainly say some for you and your family. I had GBS in 2016 and was paralyzed for awhile but was fortunate enough to recover - it gives me some sense of your life altering experience and how quickly things can change for us. My wishes for you are to keep a positive mindset and surround yourself with love. God has a plan for you my friend. I will be sending prayers your way.

  • @suestephan3255
    @suestephan3255 6 หลายเดือนก่อน +1

    Hi, I too will be lifting you in prayer. God knows our prayer before we utter a word. If He is your Savior He will be there through it all.
    You sound like a very nice man and an exceptional teacher. May God restore you to good health, Amen

  • @DE-dz9db
    @DE-dz9db 7 หลายเดือนก่อน +6

    That’s a major bummer. My thoughts and prayers go out to you. You’re an amazing teacher!

  • @TherealSeanTroy
    @TherealSeanTroy 7 หลายเดือนก่อน +2

    My heart and prayers are with you. Let us know if we can do anything to support you and your family.

    • @DarinNakakihara
      @DarinNakakihara  7 หลายเดือนก่อน

      THANK YOU!!! Just keep spreading the word and raising awareness.

  • @dawnricherson2604
    @dawnricherson2604 7 หลายเดือนก่อน +29

    I have two friends that died of ALS. One at 35 about 1997. The other January 24, 2021,at 53. The difference in that time with this male and female was amazing. They’ve come along way in treating ALS. It is still terminal, but the treatments are much better and lifespan a lot longer. Jesus loves you…he will walk with you to you if you call out to him. You will never be alone. ❤

    • @Rinablackxo
      @Rinablackxo 6 หลายเดือนก่อน +6

      Why would you share this? This poor guy is sharing his diagnosis and doesn't need to hear this.

    • @QWEENB523
      @QWEENB523 6 หลายเดือนก่อน +3

      ​@@Rinablackxoexactly what I thought

    • @Reload93
      @Reload93 6 หลายเดือนก่อน

      Silly women

    • @Tayyab-hr1gp
      @Tayyab-hr1gp 6 หลายเดือนก่อน

      The second one who died in 2021 how many years she suffer in ALS

  • @karenanderson717
    @karenanderson717 7 หลายเดือนก่อน +4

    So sorry to hear of your ALS diagnosis. I will follow your journey.
    You are a good person. We do not know why random people are given this diagnosis.
    Love and prayers to you and your family.

  • @sandramkennedy
    @sandramkennedy 7 หลายเดือนก่อน +3

    Darin
    I just happened upon your page - and stopped to tell you how sorry I am about your diagnosis.
    Hugs to you
    I’ll be thinking about you and praying for you.

  • @pattymcmullen8551
    @pattymcmullen8551 7 หลายเดือนก่อน

    I walked this journey with my husband. I will pray for you all as decisions need to be made,that God will give strength and wisdom.

  • @lisafukunaga8621
    @lisafukunaga8621 7 หลายเดือนก่อน +3

    Love you cousin. Praying for you and your family. You have inspired and helped me with your videos on teaching too.

  • @jessicasantiago9307
    @jessicasantiago9307 7 หลายเดือนก่อน +2

    I will stand in prayers for you and your family. I am sorry you have to go through this, no body should ever go through this. The Lord is your shepherd and He will protect you and cover you with peace.

  • @Orangestanley64
    @Orangestanley64 6 หลายเดือนก่อน +2

    I don’t know you but like others you showed up in my feed. I will add you to my daily prayers and pray for your peace and health. May God bless you and your family with healing, strength and wisdom.

  • @mangoclaw96
    @mangoclaw96 7 หลายเดือนก่อน +3

    Fight on brother. Ur attitude and perspective on this is contagious! U just gained a subscriber.

  • @myrnadiaz726
    @myrnadiaz726 7 หลายเดือนก่อน +5

    Thank you for sharing your journey. Prayers for you, your family and the doctors in charge of your care🙏🙏🙏❤️❤️❤️

  • @cathycowell1759
    @cathycowell1759 7 หลายเดือนก่อน +3

    Really rooting for you. Love from England ❤

  • @IBetterTellYouTheTruth
    @IBetterTellYouTheTruth 6 หลายเดือนก่อน +1

    Youre so brave, its so unfair that people get hit by this disease :/

  • @karenmcgarry3846
    @karenmcgarry3846 7 หลายเดือนก่อน +3

    Bless u and ur loved ones through this

  • @michellemarini5128
    @michellemarini5128 6 หลายเดือนก่อน +1

    Sycamore Blue is motivation for ALS sufferers!
    I've been following her journey for years now.
    Amazing! Her faith through everything is tough and enduring.
    God bless her and you, praying for you both.❤

  • @elfipet
    @elfipet 7 หลายเดือนก่อน +2

    Praying a blanket of love, healing, God's peace and comfort for you and yr family precious Darin. Surrendering this to God. xxx

  • @michelleminasian367
    @michelleminasian367 7 หลายเดือนก่อน +3

    Prayers ❤

  • @wonkymon
    @wonkymon 6 หลายเดือนก่อน +1

    I just met you right here telling your story..I also had spinal surgery and nerve tests ,left arm wekness pain ect. I am still in PT 4 years later. I AM a praying woman, I just want to say thanlyou for sharing your story. I will be praying for you my friend. God bless you, God give you the Joy in the midst of the storm❤😊

  • @Abc123gal
    @Abc123gal 7 หลายเดือนก่อน +3

    I will be praying for you!!

  • @nicolec872
    @nicolec872 7 หลายเดือนก่อน +3

    praying for you mr n! ❤

  • @jodyj8528
    @jodyj8528 7 หลายเดือนก่อน +2

    Oh man. I wish that there was a way to "like" the video without it saying "like." As whom in the world would
    like an update such as this. I just found your channel about a week ago as I have a 4-5 level ADCF coming up on May 21st. I just subscribed and will pray, in Jesus' name, for you and your family as you process this official news and move forward into this journey. I am so, so sorry, Darin.

    • @amberlynn8591
      @amberlynn8591 7 หลายเดือนก่อน

      I've always thought the same about the "like" button so I always think of it as a "Support" button❤

  • @Andinwyo
    @Andinwyo 7 หลายเดือนก่อน +4

    Praying for you❤

  • @ShaShaShannon38
    @ShaShaShannon38 7 หลายเดือนก่อน +4

    Sending you so much strength and love ❤

  • @helenakronick5741
    @helenakronick5741 16 วันที่ผ่านมา

    I’m so sorry for your diagnosis. Sending prayers for you and your family.

  • @InnaOgando
    @InnaOgando 6 หลายเดือนก่อน +1

    So sorry for you. Never know what each of us will deal in our future. Thank you for share with people your life. Hope you still can live long life.

  • @jacquelineexley2129
    @jacquelineexley2129 7 หลายเดือนก่อน +3

    Praying, Darin!

  • @JEX-w5h
    @JEX-w5h 7 หลายเดือนก่อน +2

    You popped up in my feed, so this is the 1st time I’ve seen you. You’re smart, sweet w/ a great attitude oh and great wife. I’ll follow you because you’re quite an interesting person. One of the other commenters made a lot of great points about preparing before you need the specific help- that makes sense and will reduce stress. I’ve had seizures/surgery/ brain complications and have used homeopathics to reduce brain swelling. If I learn of anything that can help you I’ll let you know. I’m another person now in your court.