HOW IT FEELS to be diagnosed with a terminal illness
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- Опубліковано 18 тра 2024
- Facing a terminal illness diagnosis can be a life-altering experience. In this video, join Darin Nakakihara as he shares his personal journey living with ALS, also known as Lou Gehrig's Disease. From the initial diagnosis to managing symptoms and treatments, Darin bravely opens up about his daily life with this neurodegenerative disease. Follow along for ALS health updates, insights into ALS research progress, and ways to support those fighting against ALS. This ALS awareness blog aims to shed light on the challenges and victories of those affected by amyotrophic lateral sclerosis. Watch to learn more about the realities of living with a terminal illness and the strength it takes to keep fighting.
I was a caregiver for ALS patient for 4 years. He lived with this disease 8 years. Good quality years. On the bright side , there is a lot happening in ALS research, a lot of trials, a lot of new medicines, ready to go, the cure is coming. Just keep being positive. Cure is coming, for 100%.
I put your phrase “Go find some joy” up in my wall of my office. I’m an elementary principal and it’s a good reminder that there is always joy. Praying the Lord continues to use you mightily and overwhelms you and your family with peace. You are a light.
I like your positive attitude towards ALS. Hopefully a cure will be found one day. It’s a devastating illness to comprehend and deal with. Take care.
Hello. I also had surgery for stenosis in August 2015. ALS diagnosis December first 2016. So, I have beaten the odds! I know there are a lot of resources out there, but if ever want help just let me know. My wife and kids have been amazing. I think it's harder on them. I am typing this using my eyes with eye gaze technology. It is such a blessing to have this technology. We can't change what God has given us, but we can make the best of the situation.
Great comment God bless you in your journey Amen
Was there ever a moment looking back now before your stenosis surgery that made you think it probably wasn’t that? Like any things that you had going on that made you think it wasn’t the spinal stenosis causing your symptoms? The reason I ask is because I go in for ACDF on the 29th but a lot of my symptoms kind of progressed somewhat quickly. thank you for being being an inspiration.
@@daveschied9990 Mine started with drop foot. Very slight and slow progression. Family doctor sent me to a neurosurgeon and had MRI's. It showed stenosis. I think that if I would have gone to a neurologist first they might have done additional testing before surgery.
Thanks for sharing
My younger brother passed a month ago. He lasted only five months after his diagnosis. We don't know how long he had symptoms. But by the time he was diagnosed he was already having difficulty breathing. God bless you.
Darin , Im so inspired by your
Bravery and the way you just tackle life . My heart and prayers go out to you damn man, I give you mad respect and that takes true bravery to be in your position and still be so optimistic. Truly inspiring
Thank you so much for your kind words! It means a lot to me.
Thanks for responding, You got this Darren I'm literally following you and watching and keep your head of the way you a little. K. Àa😢 a la a a. . a good day 😢at the end and ak 😢is a good day at work k And I k a 😢lot ak😢😢a 😢 and I a😂a😢😢 a..aka. K aa. 😢A. A😢 😢😂a a😢 aa 😢aa 😢aa😢😂 aa a a😢 a aaka a. Aa. A. Aa a a a aaaa a😢 . . A😢a a . Aa aa. A. Aak was a. A aa 😂😢a as a a😢was a 😢a . Aaaa. A. 😂😢A😢.😢😂😂😢😢😢😢😢😂😢😢😢😂😂😢😂😢😂🎉😢😢😂😢😂😢😂😂😂😢😢😂😢😢😢😢😂😂😂😢😢😂😢😢😂😢😂😢😂😢😢😢😂😂😢😢😂😢😂😢😢😂😢🎉😢😂😢😂😢😂🎉😢😢😂😢😂😢😂😢😂😢😢🎉😢😂😢😢😢😢😢😢🎉😂😂😢😢😂😢😂😢😢😂🎉😢😢😂😢😢😂😢😢😢😢😢😂😂😢😢😂😢😢😢😢😢😂😢🎉😢😂😢😢😢😢😢😂😢😂😢😢😂😢😢😂😢😢😂😢😂😢😢😢😂😢😢videos It's just amazing how they're missing you are
Go find some joy!! ❤ you give me joy being so upbeat!❤
Thank you for being a blessing to many - we are praying for you!
Every day, Darin, you remind me to go find some joy!! And I do it! Thank you!!
I lost my mom to als in 2008. Her insurance company wouldn't cover any meds either. I had to buy her a wheelchair on ebay 🙄. Our nation needs to do better with healthcare. Now I'll stop complaining and go find some joy 😊.
Go find some joy guys. I dont know you Mr. N, but you seem like a wholesome guy. I wish you strength and happiness on your journey and ill be here to follow you.
I love the channel name you chose it’s exactly what your gonna do. I wish you much luck 🍀 I took care of a man your age with ALS. My experience was positive, eye opener, hard work both physically and mentally, and much empathy& sympathy for a person I didn’t know. I tried my best to make him laugh, because there is nothing funny about this disease. He definitely wasn’t perky he was pissed. That was the hardest part of the assignment he went through 10 caregivers because we all did something wrong. It’s OK in the end I heard he accepted peacefully. My job was to give loving care with thoughtfulness not judge him.
I first found your videos when we went into quarantine. I appreciate all the positive energy you have put out into the world. Thank you! Go find some joy!
Go find some joy! ☀️
Love your positive attitude, Darin. Cheering for you! 🩵
My Mom passed at 83 yrs old from ALS in November 2020. She survived 2 years after being misdiagnosed with a stroke. Prayers to you and your family
Your story is so inspiring brother 💖 Your existence is so valuable at every stage of this disease.
WOW that voice banking sounds incredible!!! Best I’ve ever heard the intonation is excellent
Darin, you are in my daily prayers.
Thanks for the video, Darin. Go find some joy, everyone!
Prayers
You are such an inspiration!!!
Sending you prayers🙏
It's awesome that you are so knowledgeable with tech. Seems like it's going to come in handy!
Hang in there, Darin. ❤
Much joy, happiness and blessings to you. ❤
Sending you love and prayers that you stay stable as long as possible!!
Just been recently diagnosed with pls, another form of motor neurone disease. Similar to ALS, but with a much slower progression. I’m very scared because my neurologist said it may turn into ALS. You are so brave in this difficult journey and your positivity is inspirational to me! All the best to you and I will be following your videos. Watching from Crete, Greece!
Go find some joy 🎉🎉
Amen, Go find some joy.
Blessings and wellness 🤎
Go and find some joy ❤
I’m sending you so much love, strength and prayers always 🙏
Those kids are a great bunch xxx♥️
Hi Darin, keep those videos coming! I have ALS too. Which voice banking software was that? Sounds amazing.
Go find some joy!
i was diagnosed 2 weeks ago in Phoenix. everyone in facility there has been so kind and helpful, not throwing up roadblocks. they probably know i dont have time or energy for that! Knowing you are on this journey too has been a source of comfort. i have a lot of tests coming in June🥹
i am very interested in supplements-and voice banking tech.
thanks!
Go find some joy! Thinking of you.. .from Minnesota...
Go find some 😁! Sending you prayers for strength, stamina, and good nights of sleeping! Thank you for sharing your story!
Happy to see your video, Darin! I started following you for your four level fusion - I just had mine on May 21st. I am so sad for this diagnosis but glad to know you have God, family, and friends on your side! It is summer - enjoy it - go find some JOY! :-)
Go find some Joy! Sending love, prayers, and positive vibes your way! ♥️🙏🏻😎
Wow, the AI voice thing is so great! Thank you for sharing your story. ❤
Go find some joy!
Go find some joy!!!!!!
It's so nice to see and hear from you again! I'm honestly very glad that you are in good spirit and live your life with a smile and joy in your heart despite facing something so dire and devastating. I wish I could face ALS as well as you do, I have broken down so many times from when I figured out on my own that I have it until a little bit ago and I know that I will shed many more tears. I digress, I just want to tell you God Bless you, God Speed and I have and will continue to keep you in my thoughts and prayers. I will try to leave a comment each time I see a video get uploaded at least to say hello, God Bless and let you know I'm still here. Take care my friend, keep smiling and finding joy in this life!
Have you had nerve studies? That's how they diagnose ALS. You can't diagnose yourself.
go to a doctor that specializes in movement disorders
Go find some joy! ☀️
Thanks for watching to the end!!!
Go find some Joy!
Go find some joy. What a beautiful saying. I'm going to do more of that thank you. ❤
Go find joy!
My mom’s first symptom was trouble speaking and swallowing.
Go find some joy!❤
Go find some joy! 😃🎉
Great videos! Please share what you are taking. You never know. Some people are willing to try and chance and you never know at this point! :)
What AI program did your voice? My sister could use that! I heard someone who was so pleased with his AI voice, but had no other info!
Thanks for talking about it.’
Thank you for sharing. Did you say Tustin High School? I live in Tustin Michigan.My Tustin only has 270 people. A little smaller than your Tustin😄I do appreciate your vlogging about ALS. It's a fear of mine. Take care.
#Go find some joy!!!
Go Find Some Joy! You are in my thoughts! I've been a fan of all your teacher work on instagram and tpt for some time now.
Go find some joy ❤
Go find some joy…❤❤❤❤❤❤❤❤❤
Kathy Hall is the only UA-camr with ALS that I know of. She doesn't vlog often.
My mom got a rx grant for Neudexta. And she got help paying for her breathing machine because freaking Medicare doesn’t pay enough.
GO FIND SOME JOY! 🙏🙏🙏
How much are the meds that your insurance do not want to cover? And I believe they also have some trials right? (if you can get a spot of course)
Darin, any theories as to what caused/contributed to you developing this disease. Have any family members had this or was it sporadic?
🙏💝🙏
I hope your progress will be really slow! I have ALS my self, and is going pretty fast atm... what do you use for banking your voice?
I used Eleven Labs for this one
Go find some joy
Darin, you can prove them wrong buddy. Never accept someone else's expectations. Prayers sent to you and your family
Have you found Brooke Eby? She is sooo funny while living with ALS
Sending the tightest virtual hug!! I've been following you since your elementary teaching vlogs. Have you looked into a LIFT RECLINER? They are very comfortable and have many settings. Sending prayer for you and your family.
~diane
Go Find Some Joy
Thanks for watching to the end!
If you are slowing down the fasciculations..thats a good thing..and exercising your muscles as much as you can is beneficial..to keep them strong longer....research Deannas protocol..
I would do an anti-parasitic and eat everything the Africans eat. They have flexible joints because of all the Cassava and other stuff they ingest.
Thanks for another video! I’m always looking for information on living with ALS! My sister has it too. By the way, she has silky pajamas because it’s easier to roll over in bed. Maybe that would hep you!
In addition to supplements, perhaps you could investigate carnivore diet (Dr Ken Berry) or fat-Keto (Dr Annette Bozworth)
Love your attitude and loving spirit!
Stephen Hawking lived 55years with ALS. Yes, he was an outlier but proved it possible. Enjoy your vid and attitude. Best!!
The ANDROID guy.....'they are not that bad, they are not that bad'
I wonder if all that surgery you had prior to your diagnosis has made things worse. I'm guessing you didn't really need it because it was all ALS related.
The healthy man wishes for many things
The sick man wishes for only one
The most frustrating things about ALS : the doctors can't do a damn thing! Don't waste your time . Go live life !
Go Find Some Joy 🩷🙏🏼
Thanks for watching to the end!
Go find some joy! ❤
Go find some joy!
Go find some joy ❤
Go find some joy! ❤
Go find some joy!
Thanks for watching to the end!
Go find some joy!
Go find some joy!
Thanks for watching to the end!