Why Living with ALS is so damn HARD (2024)
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- Опубліковано 27 сер 2024
- Living with ALS presents a myriad of challenges, as Darin Nakakihara bravely shares in this video. From the initial diagnosis journey to navigating the symptoms and treatment options, the daily struggle of those with ALS is highlighted. Despite the hardships, there are moments of finding joy and support along the way. Join us in raising ALS awareness and following the latest research and progress in fighting against this neurodegenerative disease. Stay informed with health updates and personal stories to understand the impact of ALS, also known as Lou Gehrig's Disease. Let's come together to support those affected and continue the fight against ALS.
No insurance company should be allowed to deny anyone with ALS anything. Period! I am outraged for you.
My mom had ALS and I had to buy her a wheelchair on eBay. The insurance company didn't think a wheelchair (just a basic one that I could push her in...not a fancy electric wheelchair) was worth the expense when you consider that the average lifespan after diagnosis is only about two years (or at least it was at that time).
I agree 100% !!!
They do this with other illnesses too. It is sickening that patients have to navigate and fight insurance as well as their diseases
It is criminal … and disgusting.
I was so taken back with your students crying - speaks volumes of who you are. Teachers like you, are a rarity, thank you - Go find some joy!!
You’re not alone my PALS (people with ALS). I’m 40 3 years since symptom on set.
I can no longer walk or sit up right for long. My tongue feels a little swollen all the time & my respiratory function levels went from 115% 9 months ago to 80% last checked.
I’ve also been diagnosed with a piggyback neuromuscular disorder, called clonic spastic seizures. I’ve such severe fasciculations and spasticity that I’m on a lot of medication just to keep my body under a manageable level.
When the ALS hit my body, my neuromuscular system decided to go into a shock trauma, so that is why I have the second disease to deal with. There’s not many of us out there that have this, but unfortunately, it’s speeding up my progression.
I try to find the happiness and peacefulness in every day and love my family and friends just so much stronger than I used to. Just remember to take it one day at a time 🩵💙
You are incredibly strong. ❤
Darin, Godspeed to you brother. My wife was diagnosed with als December 2023. Took over a year and half to get diagnosed and it all started with voice loss, respiratory failure in September 2023. She’s currently on 24hr oxygen through a trachea. We are a young couple both turned 42 this year. I have become her primary caregiver. We have a lot of family help and supports. And like you said you find out real quick who your true friends are and what family really means. I will follow you in your journey and will keep you updated on ours. You and your family will also remain in my prayers. I have found some joy in you and your vlog. I will continue to go and find some joy in such a difficult time. I admire your courage.
This is heartbreaking, I am so sorry.
@@ngs5554hi Nancy I appreciate your message
have you done a genetic test
Go find some joy! Thank you for sharing! I was diagnosed 4 months ago with ALS. In a wheelchair full time. Sounds like you are an amazing teacher. 🙏 that you will be able to continue teaching
Go find some joy! Another teacher Greg who calls his channel Gregisms always ends his videos with “find your joy”. It has become a mantra for me! I will now add yours as my mantra too! I am learning from you so I can support my Bestie whose husband has been recently diagnosed! I can’t help them because of my own health issues but I can give emotional support! God Bless on this journey! Thanks for being the inspiration that you are!🌈🙏🏻👼🙏🏻😇🙏🏻🌈☀️🌷☀️
I’m so sorry to read this. None of the online UA-cam educators shared this.
Online teaching could be a work option since it’s working from home.
Prayers sent to you and your family. #GoFindSomeJoy
You are amazing my friend! Even in this trying season your optimism and determination to find joy shines through. I hope you continue to get all the rest you need, but check your schedule to see if you have a hour our two one your old friend. 😉
Praying for you! 🙏🏾🙏🏾🙏🏾🙏🏾 Pray to GOD for healing! Miracles happen everyday.❤
Like ALS, lupus affects everyone differently. Only a couple medications and it never goes away. It not terminal but it can kill you and I’ve had a few close calls in my 23 yrs dealing with this. Keep strong!
Go find some joy! Thank you for sharing your journey with us and bringing us so much joy! 🙏💫💖
Go find some JOY!❤
the medications don't do much to extend your life and sometimes make people worse
Your daughter is lovely. You and Mrs. N had a great time I’m sure. Just subscribed. Life really sucks sometimes - i will be praying for you. ❤️🇨🇦🙏
Go find some joy!
Go find some joy! You inspire me! Been listening to you several years. So glad I found this!💗
Go Find Some Joy 🙏🏻❤️
Keeping you in my thoughts while you keep adjusting to this life and stay stable as long as a possible
Go find some joy. I always loved your big heart and positive teacher community you’ve created here. ❤❤❤
Go find some joy! You are truly an inspiration to all!
Got your bracelets yesterday Darin! I’m gonna go find some joy too!! Keeping you and your family in my thoughts!! ❤
My heart goes out to you. My Grandfather passed away from ALS. Enough said. I live in MN. Once of our State Legislators, David Tomossoni, was diagnosed. He had a larger than life persona. MN, in his honor, passed a bill that gave a large sum to research, caregiving, etc., for ALS. I wonder if it's possible for you to receive some counsel through the Mayo Health Clinic. I just wonder. It's tough to hear that your insurance has denied you for the meds. In America, how could this happen? Keep speaking up, keep advocating and getting rest! Thanks for being you!
Go find some joy!! You are an inspiration. God bless you
Go find some joy! You're truly an inspiration.
Go find some joy!!!🙏🏻🙏🏻🙏🏻
Go find some joy!!! ❤
You should not be denied the medicine you need. Can the school system fight for you to get the medicine you need? Unbelievable.
Go find some joy ❤😊 I’m sending you so much love always xxx
Go find some joy Mr. N. As a fellow teacher, you are an inspiration to me.
Go find some joy! 💚💙🧡
Go find some joy! Thank you for inspiring me and so many. 🌺❤️ Sending love, peace, courage.
Thank you for sharing; love your attitude! I was also diagnosed around 7 months ago--bulbar onset, which means I'm still strong below the neck but my speech is complete trash and I choke all the time.
It's criminal that you're being denied coverage for the prescriptions, but to be honest, you're not missing much with those two drugs. At best (and it's a stretch at that), they buy us an extra several weeks before needing a trach. Not worth the $100K+ per year.
Go find some joy. Bless you ❤
Thanks for putting the word out about this disease. You are brave, respect 👊🏼
Praying for you. #GoFindSomeJoy 9:59
Go find some joy!!
Go find some joy! ❤
Go Find Some Joy❤
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I am going to find some joy. ❤
Go find some JOY!!
Go find some joy! Thank you for sending the bracelets! ❤
GO FIND SOME JOY!!!!
My dad had Parkinsons and his insurance refused him the most important meds he needed. However, we prayed and the dr was able to fight for him and change their minds. He was able to get it eventually. It’s horrible that insurance has the ability to do that.
Go find some joy :)
Go Find Some Joy❤
*There is joy to be found everywhere if we look and know He is with us.
Go find some joy! Lifting you up in prayer! 🙏✨
Go find some joy🌞! I am a teacher too ! Enjoy the summer to rest !
Go find some joy❤
I have Long Covid and feel like I’m in a similar situation. Im a sped teacher. I have chronic muscle pain, fatigue, and frequent crashes. Since it’s so new, they don’t know how to help us. It’s frustrating.
~Go Find Some Joy!~
Find Joy 💜❤️🇨🇦🙏
Go find some joy! 🙏🏼 🤗 😊
My Mom was diagnosed with Bulgar ALS after being mis diagnosed with a stroke. She lasted 2 years and unfortunately it is the most horrible disease ever.It was blessing when she passed. Would not wish this on my worst enemy. God bless and good luck
i was diagnosed one month ago. it is hurtful when i see " it was a blessing when she passed". how is this helpful? should we all just go off ourselves now? spare others our illness?how is this different than those with terminal cancers ? seriously. please think
Not helpful, at all.
Yep, please consider that lots of people with ALS will read this, myself included. This is a video of someone going through the same journey your mum did - would you have wanted her to read this?
How are you now @@leaveittolefty
@@AbdulMajeed-hr1gp i am doing ok. i have appt with dr tomorrow see how it’s going
🌟Go find some joy!🌟.....🙏🙏🙏
Go Find Some Joy! Love this so much
Go find some joy! You remind me of Brooke Eby who also documents her ALS journey here In youtube - not waiting inevitable but living each day fully not forgetting laugter and humour. I salute you both❤!
Oh thank you!
The insurance thing infuriates me! I am so sorry you are going through this 😢
Go find some joy!! 🎉
Go find some joy!!!!
GO FIND SOME JOY!
Definitely reach out to Team Gleason for assistance!
Go find some joy -
Go find some joy🥰
Go find some joy in that wheelchair...it looks nice! My mom had ALS and her insurance wouldn't cover anything either. I had to buy her a very basic wheelchair on ebay 🤦♀️😡. It's been many years but I'm still bitter. I should probably release that negativity and go find some joy 😊.
Please name your insurance company. They need to have a light shone on them.
Go find some joy! 😊
Go find some joy. 😊
The only medicine They gave my mom is Neudexta . There’s no real treatment. 😢
Go Find Some Joy!!!
You need to counter the insurance denial for Radicava ORS. It’s part of the red tape
How can i get. Bracelet ? Would love to have one
Go Find Some Joy!
Go Find Some JOY!!!!
Go find some joy.
I have been watching you since you taught 4th grade. I also taught 4th at the time. Had a friend that passed from ALS in Baltimore. There is a foundation called Brigance Brigade that helped her, and we walk and raise money for research. Reach out and see if they can help. God bless...
Go find some joyx
🙏🏻🙏🏻
When you suffer in ALS?
Get rid of all carbs
(Please Research this)
Voice bank asap
❤
Would starting a Gofundme help with meds and wheelchairs etc?
CARNIVORE DIET
Bulbar Als
Try the carnivore diet.
And don't take anymore vaccine.
Sue someone please. It is from the crapcines
Damn brother 😞😞😞
Go Find Some Joy (GFSJ)!!❤
Go find some joy 🥹 ❤
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Go find some joy!!! ❤
Go find some joy! ❤
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GO FIND SOME JOY!!!!
Go Find Some Joy!
Go find some joy!
Go find some joy!! ❤
Go find some joy!
Go find some joy!