📢🧠 My Inspiring ALS Update 💔🕊️
ฝัง
- เผยแพร่เมื่อ 22 ต.ค. 2024
- In this emotional update, I share my journey with ALS, also known as Lou Gehrig's disease. Living with a terminal illness has been challenging, but I remain hopeful and grateful for the support I've received. Join me as I navigate this difficult journey. #ALS #LouGehrigsDisease #TerminalIllness #AmyotrophicLateralSclerosis
Follow me for the latest updates on my ALS journey and find out what's next in my fight against this disease.
*Check out my previous video:* [Navigating Disneyland in a Wheelchair](#)
*Subscribe for more updates:* [TH-cam Channel Link](#)
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ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The motor neurons deteriorate, leading to a loss of muscle movement, which over time affects the ability to speak, eat, move, and even breathe. There's currently no cure, but there are treatments that can help manage symptoms and improve quality of life.
I want this video to be a source of information and support not just for me, but for anyone who might be dealing with similar struggles. Below are some resources where you can learn more about ALS and find support:
ALS Association: www.alsa.org
ALS Therapy Development Institute: www.als.net
National Institute of Neurological Disorders and Stroke: www.ninds.nih.gov
Project ALS: www.projectals...
Mayo Clinic ALS Disease Center: www.mayoclinic...
I will also be participating in events and initiatives to raise awareness and funds for ALS research. Your support means the world to me, and I am grateful for each and every one of you during this time. Please feel free to share this video, as raising awareness is crucial.
Let's start this conversation and keep it going. Comment below with your thoughts, any experiences you have with ALS, or words of encouragement. Remember, we're in this together.
Thank you for watching and for your continued support.
[Subscribe for more updates on my journey and daily life.]
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My name is Darin Nakakihara. I am a TH-cam Creator from Southern California. This is a teacher blog about my adventures as a husband, middle school teacher, father of 3 daughters and best friend of Kobe and Harlow the dogs.
Hello Darin 👋 im Coleen and I live in Devon UK 🇬🇧 ive just been diagnosed with PLS Primary Lateral sclerosis Motor neurone disease it's a slower progression compared to ALS which im so blessed to have the slower form of MND. I'm 60 yrs old married with 2 beautiful children and 4 grandchildren and my 1st symptoms began over 7 years ago and now i have little mobility it's also effecting my arms, hands and have little strength but listening to your diagnosis it breaks my heart and like yourself i say to myself im not alone, you are such a inspiration to watch & listen to, you are helping so many others who maybe have symptoms or who have been diagnosed with ALS. Take care and we must all fight MND together and help people recognise this horrible disease and helping spread awareness 💙 God bless to you and your family & keep fighting 🙏🦋
Dear Mr. N. Don't give up. In 2014 my husband was diagnosed with a terminal disease. Multiple Myeloma del 17p. In plain English that is a very aggressive blood and bone cancer. He did experimental studies, chemo, and stem cell transplants, he survived when most of the study group died. He's been offered hospice numerous times and declined it. We live day to day not with me reflecting on a future with him not by my side. It's now 2024 and guess what my husband is in the shower and getting ready to drive himself to an oncology appointment. In 2014 I thought I would be buying him a casket for Christmas. Our lives are full of joy. Doctors are scientists but they always dismiss God. I firmly believe God has helped in my husband survival. Search, ponder, and pray often. Mr. N and my God help you too.
I know how you feel about the loneliness Darin, which is why your videos help so much! I have ALS and every morning I wake up and tell myself I’m not alone. Then I open TH-cam to see if you’ve uploaded anything 🙂
God bless you. You are now on my prayer list❤
My heart breaks for you Darin. I lost my mom to ALS 30 years ago. This awful disease was first identified in 1869, so I can't believe that in all this time the researchers haven't been able to figure this thing out.
I agree, we need to all go find some joy
Praying for you Darin. Your attitude is admirable and truly inspiring. I’m a pastor in a church in Canada and as a church we will be praying for you.
Praying to the same god that supposedly created this thing?
@@armandosanchez8901 According to christianity diseases and death comes from Satan. Learn before you criticize.
@@armandosanchez8901According to christianity disease and death comes from Satan. Know what you are talking about before you criticize.
@@armandosanchez8901 go find some joy :)
@@armandosanchez8901 My thoughts exactly, ive asked so many times, "if there is a god why would he do this to me" 😢
Hi Darin, I was diagnosed 4 months ago. I feel the same way - that after diagnoses I was left on my own to navigate the disease. Everybody progresses at different rates so docs are at a loss except for generalized information. Like you said, there are only two drugs available and they may or may not help. The manufactuers of Riluzole and Radicava have coupons that will help pay for the meds. The ALS clinic should be able to help with this and help appeal the insurance company decisions. I am on Riluzole with no side effects but did not tolerate the Radicava. It made me extremely weak though some people are fine with it. My GP has written prescriptions to help me with sleep and muscle tightness. It is important to find a doc who will work with you and your symptoms. Be your own best advocate. I also get tired from exercise. I have found swimming/floating and stretching to be most helpful. Thank you for posting. Your positive attitude is uplifting and motivating!
Does baclofen help...i started taking this. It is a muscle relaxer that helps with leg and neck cramping. Not sure if anyone else tried it
Go find some joy!!!! Blessings 🙏
Hoping u have a powerful support system my brother had ALS lived for five yrs
Thanks for sharing! Yeah, having a solid crew makes all the difference when life throws you curveballs.
OMG .... the same horrible insurance journey my husband had to travel ... My husband enjoyed physical therapy (that was before he knew that he had ALS) but for him, it was more for moral reasons bc he liked to see all the staff there. And helped him feel better morally.
Yes, it is a super lonely journey. Insomnia is a symptom. My husband had it too .... and constipation. Yep, my husband did not get anything for sleep. It is breaking my heart to see you struggle ... XOXOXOX
It broke my heart when you said you would like some help... 😢
Praying for you so hard. ❤🙏❤
There is a lot of joy in life that we miss everyday in the simple pleasures made by God- a beautiful tree, or butterfly, the ability to walk in a park. I'm learning to slow down and appreciate them all. God bless you for your vulnerability.
I know personally 4 people who have been struck with this horrible disease. My classmate, Steve, just passed away last month. ALS is not as rare as they would like us to think. Thank you for being one of the faces representing ALS. The more people sharing their stories, the better. You are in my prayers 🙏 ❤️ Jan
And yet, it’s 1 chance in 250 for men and 1 chance in 400 for women. Definitely rare but not extremely rare either. That’s a 0.25 to .4 % chance overall! To put things into perspective, getting breast cancer is 1 chance in 8 for women right now… that’s extremely high…
Thank you for sharing your personal experience, Jan. It's important to raise awareness about ALS.
Thank you for sharing these important statistics and raising awareness.
Go find some joy.
When my Aunt was fighting ALS, she was able to get canabis cream as well as other medicinal products from a dispensary to help with muscle relief in her hands, arms and legs as well as other symptoms I believe. I remember going over & visiting her while she was getting hand, arm & lower leg massages in her reclining wheelchair. Unfortunately, it took what seemed like a long time for her to be diagnosed. I believe they suspected it was possibly the result of a traumatic health event that she had experienced a year or so prior. A few months after her passing, family and friends participated in the Walk to Defeat ALS in her honor. She had planned to attend herself but God had other plans for her.
Darin,Thank you for sharing your experience.
I have a dear friend who was diagnosed a few months ago with ALS. She describes almost the identical story and shares very similar feelings. She's been to see her treatment team, but feels as if there is nothing that they can do. There is a new med she was interested in. However even with insurance, it is $11k a month. The drug companies should be truly ashamed.The older drug her Dr. prescribed causes many side effects, decreasing her already compromised quality of life. If she's lucky it may extend her life for 3-6 months. She stopped taking it. She couldn't tolerate the side effects. She does go to PT, stretching, light weights, and riding a stationary bike. She stretches the visits out because the number is limited. She has a positive attitude, but is realistic. You will be in my prayers, with her. May the Lord lift you up, and the Holy Spirit fill you with peace, hope, and joy. Amen.Now go find some joy.
Darin, My mother had the Bulbar form of ALS. Her neurologist did absolutely nothing for her. His attitude and bad advice caused her more harm than good. He told her that the ALS clinic (in San Francisco) would only use her as a guinea pig. Not true. When we finally did take her to the clinic we learned that they had resources and equipment that would have made the rest of her life much more comfortable. Thank You for sharing your story. I'm happy to hear that you are a man of faith. You know that this life is not all here is. I'm praying you get the help and meds that you need.
Hi Darin. I am a retired teacher. The year I retired my sister was diagnosed with ALS. I was one of her care givers. From what I know from her, exercising only tires you out. You need all of your strength to fight. And also it doesn't sound like you have the right doctor. Only every three months??? That is just wrong. Things can change so quickly. Find someone (doctor/clinic) that are with you every step of the way. My sister's doctor's were. Any change she experienced they were only a phone call away! I am sure there are other doctors out there that would be more hands on!! I will pray for you!!! Go Find Some Joy!!!
Your prayers and kind words are deeply appreciated. It's heartwarming to receive support from someone who understands the journey.
Find.some.joy❤
Darin, My brother was diagnosed with ALS. He has 2 part-time CNA's and takes medication that was denied, but later approved. You are correct, this is terrible and unforgiving. He also goes to the ALS clinic in Pa, and they have a great support network there. My brother also has a son, and his only wish is to see his son get married as well, Unfortunilty ALS will win. My heart and thoughts go out to you..
No idea how I found your channel (50 something, divorced mum from the UK )... but I feel so connected to you & your beautiful family. Please know that, whatever that feeling of loneliness, you are truly not alone. The prospect of mortality is so shocking, but something we will all have to face. I hope that I can do so with such strength & compassion. Thank you.
Your message truly touched our hearts. It means the world to us that you feel connected to our content. Thank you for being a part of our community.
My brother has ALS. He is finding physio helpful in maintaining some function. My heart is with you, I will be watching all of your updates and thank you for sharing ❤
Made me cry there at the end about holding your grandkids.. In my mind, the most logical thing we can do is simply accept our destiny, whatever is destined to happen will happen.. there are people who were born into insane wealth and to top it off they lived a very long and carefree life and died in their sleep at the age of 102.. there are also people who were born into poverty and disease and died in sheer agony at the age of 17.. we think we can control our destiny but in reality we can control maybe 20%, the rest is set in stone and we can only accept it.. Go find some joy
I too are feeling and doing the exact things as you, no medication etc. I feel like im just a picture show at appointments, nothing more. 😭 Even the trials are cruel by taking it away even if there is an improvement, its so wrong. I was diagnosed December 23 so at the same stage and thinking exactly on the same page as you. See you in your next video
Same as u 😢 ur age? Me 30 only 😢
@@mohammadhossain5547 OMG you are so young 😢 im 63
22:08 I am praying for you!! I’m so glad you are trusting in the Lord. As you know, He is there with you every step of this extremely difficult journey you’re on. Go find some joy!
You are a truly amazing human. I’m so sorry you are facing this terrible disease. Please go find some joy because you deserve it. ❤
"Go find some joy!" ILY Darin. You are joy.
Fight the good fight of faith, Darin. We will battle ALS triumphantly. 🙏🏾
Your support means the world to me. Let's keep pushing forward with faith and determination.
Hi Darin! Longtime viewer here. My fiancé is a physical therapist and says that PT will absolutely help you maintain strength! He said it's great that you are doing home workouts as well.
Thanks for sharing your story. Peace! Go find some joy!
Go find some joy! As a fellow teacher, I started following you during the pandemic and have always appreciated your dedication to your students and positive attitude about life! Will be praying for you and your family. 🙏
Thanks for following along, teacher friend! Your prayers and good vibes are much appreciated.
you are fortunately people returned to support you. in my world they ran, made themselves scarce like they would have to take care of me or something😞
I'm grateful for those who stick around and offer their support, it means the world to me.
I’m heartbroken for you. This is a scary disease. You have a beautiful outlook. It’s awe inspiring. Will be following and sending love!
Also- awesome that Dr. bedlack responded to you. He is leading in ALS research. Big things coming in research, my friend. Stick with Dr. Bedlack.
Got my bracelet. Thank you! Sending healing prayers to you and all of us. Go find some joy!
We are in very similar stages except I just got diagnosed but symtoms (voice at first) started 18 months ago.
My legs are extremely weak but still move. My biggest concern is my lungs.
I just started clinic in Portland and met with a social worker from ALS Northwest. Those two experiences really energized me.
Sleeping really sucks, here I am up at 3am.
I'm 35 on the ALSFRS (functional rating scale). I expect to be in the twenties in six months and then the hard decisions start - feeding tube and ventilator. I don't want to go there.
My dad went with both cpap and feeding tube, squeezing all the time and joy possible out of his journey. He took both whiskey and champagne in the tube on birthdays and other special occasions, just for the heck of it. He never stopped Living. I hope you find your way.
@@drewcwsj i refuse to go down the route of a ventilator and feeding tube, ALS IS NOT taking my life...... My fate will be due to VSED
Darin, thank you for sharing your journey with us. Unfortunately, my husband was also diagnosed a few months ago. He was diagnosed with a specific rare kind of ALS, LMND ( lower motor neuron disease)
May I suggest you look into
Mark Cuban’s pharmacy - I ordered the medication from his site for only $25 dollars ( which includes shipping)
It is not a cure but supposedly it does delay the progression of this horrible disease. Please keep Jesus in your daily life.
Wow, thank you for sharing that with me. I'll check out Mark Cuban's pharmacy. Your support and advice mean a lot.
Praying for you and your family as you travel through the most difficult season. Your courage, strength, and unfailing positivity is simply amazing. Go find some joy!
Go find some joy !!! I have bulbar ALS. I feel your pain. Keep fighting. I understand all to well what you are going thru. My situation started in January 2024. I do have faith in God's plan for my life.... still. I'm scared for my family how this has affected them. Stay strong.
Hey there! It's a small world, isn't it? Your positivity is contagious. Let's keep each other smiling!
Praying for you Darin. You are an inspiration! Go find some joy!
Darin - I know exactly what you're going through as I was diagnosed with ALS in late 2022 at Cleveland Clinic in Ohio. I just could not accept the diagnosis and kept looking for solutions even though I know they're very limited. I was fortunate enough to get an appointment with Dr Bedlack at Duke in June 2023. As part of my visit they tested me for celiac disease, which in some rare cases, can mimic ALS. Turns out I tested positive for CD. I immediately went on a gluten free diet and within 3-4 months saw significant symptom improvement. It's take a while to know if the gluten was causing the problem but after a year of gluten free diet I still have no progression and even reversal of symptoms. Anyway, I know the celiac-ALS connection is rare, but I would highly recommend getting tested - it's a simple blood test. Also, anyone else reading this who has been diagnosed, or their loved ones, should get tested. No guarantees, but worth the time and effort. I have actually reached out to the ALS Association in Florida to recommend that all newly-diagnosed patients be tested for CD. In my view, something triggers sporadic ALS -- it doesn't just happen. The more we explore possible dietary and environmental factors, the closer we can get to solving the mystery of this disease.
Please start learning with a keyboard that you can use with your eyes alone because soon you will lose your voice as well. I lost my father to ALS he had drop foot too and as he was a crane operator at the mill sit wasn’t until he fell off the top of the crane and broke his back that he learned he had ALS. This was around 40 years ago and I would have thought they would have had a cure for this disease by now 😢. But I learned all to well the progression of this disease and you are very lucky in medical advances as well as the science behind the computerized eye readers. Please look into getting one NOW so you can learn to use it before you can no longer speak. Prayers to you my friend and I will continue to follow your story and pray for you and your family
Go find some JOY ! Praying for you❤️
my father passed away when i was 12 It was so hard on him he was 49 just in his prime. And they had no clinic no meds .All we had was a hospital bed and a suctions mashine, no wheel chair to take him outside, Just nobody to help, So hard on my mother, She had to work cuz dad could not,Grandma stayed to helpmom and me, I missed him all my life, Then my half sister was having trouble with her voice .She was 51, when she passed away .Thena first cousin my fathers side got drop foot and it was Als he passed at 62. His brother got sick with progressive suprannuclear palsy ,looked like ALS to all the family, im 61 and doing ok.For about six months with really tight muscle in my legs and my fingers lock in wierd shapes. I have twitting but it comes and goes. Just wonder what caused you to be seen.and if any of this sounds familiar , I praying for you, Keep your spirits up, And have some great family times together
.
Teaching hospitals are the ones yo reach out to! Squeeky wheel!!!
Praying for you Darin. You are true inspiration. Take care 🤗🙏
My Mom passed from ALS Nov 13, 2020. She was on a experimental drug that would prolong her time by a few months. She refused treatment after a month. Sending prayers
Go find some joy!
Watching your videos brings me joy, because even in the midst of trials, you are spreading a calm positivity.
Prayers for you and your beautiful family .
Thank you for sharing your journey. I also have ALS. What Helps me to sleep is THC CBD gummies.
You are amazing! And let’s go find some joy!
You're the best!
Go find some joy!! Love you Darin!! Big Hugs!!❤
Darin, you are such an inspiration. I'm watching because I love your heart ❤️ I can see why your students love you. I will keep you in my prayers. God bless you.
Go find some joy! ❤
GO FIND SOME JOY! I am praying for you Darin!🙏🙏🙏💖💖💖
You’re an amazing person! God loves us all no matter what. Go find some joy.
Sending agape love and hugs, and beautiful healing energy. Thank you for sharing your journey.
Your positivity and encouragement truly warms my heart. Thank you for being a part of this journey.
Go find some joy. Praying for you. I don’t know anyone with ALS, but loved your channel over the years. I pray you find something to help you sleep better, and praying for a breakthrough. 🙏🏼
Hey Darin, I'm watching from England. You seem like a lovely bloke with with really cool energy. It must be great to have you as a teacher. I'm following your channel and trying to do what you say about finding joy and giving joy to others. Will continue to follow your journey :-)
Hi Darin! As far as PT/OT, you may try them at least once and ask them what they can do FOR you? And if they have worked with ALS pts before. Otherwise, continue on looking at the trials and fighting the insurance companies for the meds you want.
Go find some joy!
Go find some joy! Love and appreciate your vulnerability and openness in these videos ♥️
I’m going to find some joy today in your honor, Darin!! 😘❤️
My joy is in Christ!!
I pray you're in a doctrinally sound church. I will be praying for you...that God will teach you as He wills your circumstances. 😊
Go find some joy!! My heart goes out to you!!!
Go find some joy;)))) Dude you are awesome. I am truly so sorry this damn disease is bothering you. I am negotiating with the energies of stage 4 ovarian cancer.. kind of a bleak outlook for my situation too;// The hardest time I have is when I think about my kids ( 3 sons 30,28,26) and missing sharing their lives, weddings, grand-kids, everyday moments and struggles. - it's been 22 months since my diagnosis and I did attend my middle sons wedding, another son has bought a house and a 3rd son got engaged and has moved back to Minnesota from California. I wasn't sure I would make it for any of that but I did;)))) I didn't feel great about my initial set of doctors etc.. so I reached out to MAYO in Rochester. What a world of difference that has made. You are young, and have so much yet to give and receive, if you can find the energy,.. keep searching for a team of medical inspiration professionals and or healers. There is always hope. I wish you lots of joy, good food, and sweet interactions with your family and friends. !!!! Hang in there Darin.
Go find some JOY!! Thank you for your thoughtful video; it was really informative--but chiling--about your disease progression. I will donate when i am able, but i am a senior citizen living on social security so i can't quite yet.... One day at a time, my friend!
I’m in NC, my mother had ALS and Dr. Bedlack at Duke was her doctor. I can’t say enough positive things about Dr. Bedlack, first class.
Cruel disease. My heart hurts for you.
Having acdf surgery in the morning, i just kept watching you since seeing ur acdf videos
Go find some joy! Thanks for sharing your story, you’re an inspiration! I teach Middle School and just love the message of go find some joy! I’ll be praying for you!
Your encouragement means a lot to me. Thank you for your support and prayers.
Love you Mr. N. Continued prayers ❤❤❤
Go find some Joy!
Thank you for sharing your story and progress. My brother in law who I consider my actual brother was just diagnosed with this terrible illness.
My sister (his wife) is having a hard time accepting it. And it is hard to be on the side lines trying to figure out how can I help. I hope you can form a support group in your area that you can count on to exchange more in person information. My sister and brother were referred to the ALS association by the Cleveland clinics and he has a group of doctors all looking at his case. They live in GA and travel to FL to his appointments. I wish you find better care where you are treated to get better and not as a statistic. 💪🏼
I will surely go find some joy.. but as for you hope you never lose your voice so you can share it with us.. prayers that someone out there can find a cure for you and others
You are so inspiring! Thank you for sharing your personal journey. What a difficult journey. You are in my prayers! Go find some joy!
GO FIND SOME JOY! As I’ve shared with you often on your IG page, you are such an inspirational person. I talk about you often to my teacher friends. THANK YOU FOR BEING AN AMAZING PERSON! I will continue to pray for you and your family.
I just watched all of your ALS journey videos. I am praying for you and your family. Sending you lots of love and hugs. Go find some joy. So inspirational. ❤️❤️❤️
Go find some joy. God be with you every minute. Prayers for your family and you as you go through this journey. ❤❤❤
Joy ambassador here. Go find some joy! Continued prayers for you Mr. N.
GO FIND SOME JOY!!! Praying for you, Darin.
I have been following you for a long time on here and Instagram since I am also a teacher. I am so sorry you have to live through this. Keeping you in my thoughts and go find some joy.
"Go find some Joy." Thank you for sharing. I am awaiting my EMG/NCS test at the end of the month.
1. Don't waste time
2. Don't bother with doctor visits. Waste of time. They are just using you for data
3. Physical therapy Don't waste your precious time.
4. I would try the Duke trial.
Good luck my friend
I agree but get educated on what’s coming. Especially for your family.
Thank you for sharing your thoughts and advice!
@DarinNakakihara you have today use your time wisely. Tell those around you everything ....that you would say in the days you have. It's a slow but fast monster... Don't bother looking things up about it....cherish today like crazy....
Go find some joy! You are an inspiration! I pray that you find peace and comfort throughout this journey!
Your support and encouragement truly touch my heart. Thank you for being there!
Hi Darin, my heart goes out to you being diagnosed with the disease. I am just learning more about this disease because a very dear friend of mine was just diagnosed with possible ALS or PLS. The specialist told him that if he made it past the next 2 years his diagnosis would be PLS. He was just put on a bipap machine due to O2 levels only being at 30%. I will be praying hard for the both of you that they find a cure to reverse this disease. I am so frustrated that there are no medications that can be prescribed to help with some of your symptoms. Sleeping medication is easily prescribed, but there maybe a good reason they don't give ALS patients sleeping medicine that I am not aware of. I will continue to watch your journey. Sending virtual hugs to you. You have such a positive attitude. I am praying the doctor you completed the application for does reach out to you very soon!!!
Thank you for sharing your story and thoughts. It means a lot to hear your support.
"Go find some joy!" I'm a Go Find Some Joy Ambassador and I wear my bracelet every day. You are such an inspiration & I love ya!!! ❤
Praying for you bro!! 🙏🏽🙏🏽
Go find some joy. You are very inspiring. You remind me to be grateful for every breath as tomorrow isn’t promised to anyone. Thanks for sharing your story. Keeping you in my prayers.
Well Darin I happen chanced upon your video if only I could just reach through and give you one huge hug !!! Love to you and your family and best wishes from Scotland xx
Darin! I’m praying for you! Thanks for bringing some joy to the rest of us!❤
GO FIND SOME JOY!
Go find some joy! Keeping you and your family in my prayers. May God continue to bless you, Darin, and if it be His holy will reverse your disease.
Your prayers and well wishes are deeply appreciated. Thank you for thinking of us during this challenging time.
I pray that you reach all of your goals. May God keep you and comfort you and your family. Miracles happen everyday. As an autism mom, I was devastated. I heard author Carolyn Myss say everyone of us has a purpose in this world, our own contract with God. This brought me comfort. I’m so sorry that this is part of your contract. Thank you for sharing this journey and reminding me to go find some joy.
I also live in NC, not far from where Jen Jones lives. Duke is amazing! My family and I have been going for years for multiple chronic illnesses. I pray that you find some answers.
Constantly keeping you in my prayers, Darin. 🙏🏻
Thank you so much man for sharing, have tears in my eyes watching, have symptoms myself for 13 months and people like you that share their stories and courage help me immensely. Sending love and best wishes. And of course I will try go find some joy.
Go find some joy! I’ve been watching your videos for years. I’m not one to comment on videos normally but I have always enjoyed watching yours. I am a teacher and love watching teacher TH-camrs. I also became a joy ambassador a few weeks ago. Thank you so much for the bracelets you sent. I am praying for you and your family. Keep the faith and your joyful attitude.❤🙏🏻❤️
I know I don’t know you personally, but I admire you so much and I can honestly say I love you and your sweet family. I’m praying for you as you navigate this journey. I actually don’t know anyone personally who has ALS. I just want to support you and keep praying for you. 😊 Go find some joy! ❤ Love and hugs! 🤗
Your love and prayers are like a ray of sunshine during a difficult time. Thank you for being there for us.
Hi Darin..I have Huntington’s Disease. Your videos are so inspirational.
Your words mean a lot to me. It's humbling to know that my content can have a positive impact on someone going through a tough time.
My mother had ALS. Her case had an extremely slow progression rate. She did quite a bit of physical therapy, especially in the pool. She worked with an ALS Clinic in Houston, Texas.
Thank you for sharing your mother's journey. It's inspiring how she fought against ALS with determination and therapy.
God Bless you Darin❤
Prayers for you, my friend!
Go find some joy❤ You are such a beautiful person. I wish you peace and acceptance. The very least you deserve is a good night’s sleep. Hope you can find a better doctor. Sending you love and prayers.
Your words truly touched my heart. I appreciate your support and positivity.
I know there is no recovery from ALS, but if you’re half as positive as you are in these videos. Dude, you’re doing as good as can be expected. Keep that chin up and don’t beat yourself up. Showing yourself grace during this turbulence will be hard, but that very well might be the thing that your family will need to remember someday.
I started looking for videos on ACDF recovery information and found some of your videos. Beau are inspiring.
My heart goes out to you. ❤. Such an awful disease. No one deserves that.
Will find some joy everyday in your name❤❤
YOU GOT THIS DARIN!!!
You are a brave man.🙏🏼
I watched the whole thing! Go find some joy!!!
Just wanted to say my heart goes out to you and your family. Thank you for having the courage to come on here and have a voice for everyone dealing with neurological issues. You are a true hero and hopefully some changes/advancements can be made to help those dealing with this. Go find some joy! Found your channel recently and truly respect what you're doing. Thank you again for spreading awareness.
Like you said, it is so sad. I'm so sorry, Darin. I know that you are a goal setter and this has got to be the most frustrating. If you ever wonder if people on your channel care about you, they do. I've watched your channel on and off for a few years - back in the days of the teacher secret Santa action! You are so clever and fun!
I wonder if there is any sort of support type of group that you could attend. As far as Physical Therapy, I'd definitely request a consult for yourself with a team of therapists that will help you with independent skills and communication skills as they arise. Occupational Therapists and Speech Therapists come with a ton of ideas, technology, adaptive equipment, strength building activities, etc. You know all of that. I guess I'm just sorting it out in my head. I just don't want you to feel that you are alone..... Thinking of you... from Minnesota... The joy I find tomorrow will be jumping in a lake because it is seriously too hot here! Thanks for sharing your journey!