📢 Announcing My ALS Diagnosis 💔🕊️
ฝัง
- เผยแพร่เมื่อ 7 ก.ย. 2024
- Today's video is one of the most personal and difficult ones I've ever had to make.
After experiencing some concerning symptoms, I've been diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's Disease. This news has been a significant shock to me and my family, and it marks the beginning of a new, challenging journey.
In this video, I share the process of how I came to this diagnosis, what ALS is, and what I plan on doing going forward. While this is a tough topic, I am committed to fighting with everything I've got and to keep you all updated along the way.
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.]
_________________________________________
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.
_______________________________________________________
#als #lougehrigsdisease #amyotrophiclateralsclerosis
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 🩵💜
I wish you a lot luck. ❤❤❤❤
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...!!
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
@antonygikonyo7914 Are you thinking about Motor Neuron Disease (MND) The bucket challenge was fundraising for MND. I most certainly could be wrong.
😢😢😢😢
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 🤍🤍
How would he remember you from YEARS ago when you haven't even told him your name? 😂😂😂
His name is notJacobA
@@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.
💕
@@adamagnusWhat a strange thing to write. I thought his comment was so encouraging, touching and pure.
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….
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.
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!!!
Im so sorry for your loss.
I’m so sorry for the loss of your husband. It is so tough on loved ones left behind. ❤️🇨🇦
omgosh i am so sorry 💔💔
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.
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.
Fellow teacher here. Sometimes there are just no words. I’m sorry you have to walk this path I’m sending you good thoughts.
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.
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
I’m on my 8th year.
He has ALS since 30 years?
@keithhutchins8803 Hang on my friend...New treatment on the way they say....
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.
No way! That is an incredibly unfortunate coincidence. Please tell your husband that I am very sorry. I hope he is doing OK
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.
Wow! Thank you for taking the time to write this post. I'm so sorry about your husband. I appreciate your insight.
They say that new treatment is closer than ever....some good stuff on the way...
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. ❤
❤❤❤
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.
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.
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.
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🙏🏻
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.
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!
🙏🙏🙏
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.
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.
How about new treatment on the way my friend ??
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!! 🙏🏻
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
🙏
❤🕊
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. ❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
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.
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
I have a family member who has ALS and just celebrated her 10th anniversary.
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.
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.
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.
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.
@@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.
@@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.
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.
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🔥
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. ❤️🙏🏻🕯🙏🏻❤️
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.
🤍
How r u now
Youre so brave, its so unfair that people get hit by this disease :/
I’m a Middle School teacher in Southern CA too (Montebello). Prayers to you and your family!!! Thank you for sharing such private news!
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.❤
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.
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.
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.
My heart and prayers are with you. Let us know if we can do anything to support you and your family.
THANK YOU!!! Just keep spreading the word and raising awareness.
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! 😊
❤ from Australia 🇦🇺 Hang in there brother. praying for you and your family!!!
❤️
Look up Jason Becker, guitarist. He’s had ALS for 35 years now.
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 🔥
Jason won the ALS lottery of 35 years !!!! Most people get 2- 5 years which is still better than nothing !
Sure he’s lived 35 years but it depends on what you consider “living” is.
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.
@@mysterycomment1553Cathy Jordan lived fairly well with ALS for 38 years using cannabis.
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
Praying for you Mr Darin. Blessings!
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.
Can i ask, do you have CIDP?
I am a believer. I prayed and will continue to pray for you & your family. 🙏✝️
Fellow teacher from Alabama. Sending prayers for you , your family, and school family! We love and support you! ❤
Many prayers n hugs sent Darin 🙏🙏🙏❤️💜🇨🇦
I watched your video and my heart is broken 😢😢😢. I’ll say prayers for you and your family. With best love to you.
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.
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.
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.
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!
Is his daily life is still normal. Or only static position
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.
YOU CAN BEAT THIS!! THEY ARE SO CLOSE TO A CURE
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 🙏.
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. 🇨🇦
Darin
You are in my prayers
GOD be with you
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
Prayers coming your way
🙏 ❤️ 🙏
For You
Always & Forever
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!
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
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.
Praying for you 🙏🙏🙏
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.
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. ❤
Why would you share this? This poor guy is sharing his diagnosis and doesn't need to hear this.
@@Rinablackxoexactly what I thought
Silly women
The second one who died in 2021 how many years she suffer in ALS
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.
Fellow teacher from Brea. I am praying for you and your family with my whole heart. ❤️
May God be with you as you walk this journey. Praying for you and your family.
That’s a major bummer. My thoughts and prayers go out to you. You’re an amazing teacher!
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!🙏🏻❤️🩹🙏🏻
Praying for you and your family ❤ 🙏🏼
Thank you for sharing your journey. Prayers for you, your family and the doctors in charge of your care🙏🙏🙏❤️❤️❤️
Darin - I’ll pray for you and your family.
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 🇦🇺 ❤
Praying for you🙏💕
Mr. Darin, thank you for sharing your courage and story with us. My husband and I just got back from a Neurologist visit a few hours ago unfortunately with bad news. He was diagnosed with ALS and we are just numb. God bless you
I’m so sorry.
@@nancynalepinski8705 thank you so much for your reply. I just ask for prayers for my husband not to suffer through this ugly disease and for myself to assist him with love and grace every day.
Praying a blanket of love, healing, God's peace and comfort for you and yr family precious Darin. Surrendering this to God. xxx
Prayers for you. Im so sorry you are dealing with this horrible illness.
So so sorry to hear of the diagnosis. I am praying for you.
I’ll keep it simple.
When you said they said there was no treatment or cure; nothing they could do for you, that might be true, as they mean drug therapies.
This would leave you feeling like your life is spiralling out of your control.
(I have Type 1 Diabetes, and was shocked when I heard the news; I found out after waking from being in a kind of unconscious state for a day, almost passed, was first misdiagnosed, and had to relearn how to walk the two months I was in hospital…it never goes away… day and night)
What you could keep in your control is diet, activity, lifestyle.
I’ve read of benefits of many conditions, using a Carnivore Diet. I am continuing to study for myself and family.
The tests they did on you, likely were not nutritional tests, or showing deficiencies.
You have a supportive wife, and maybe with help from others, can find out more in this area.
It will not stop the condition, as it doesn’t stop mine, but it improves my quality of life significantly. Diabetics are prone to significant nerve damage (Neurological too) so that would be the connection. This may improve mobility, and delay onset of symptoms… don’t know, but it gives you some degree of control with such a devastating diagnosis.
We have four people in our family so far with brain cancers, and others autoimmune diseases, and vEDS so for the last ten years I’ve researched.
Your research would focus on yourself.
Vitamin D protocol is beneficial as well for most, and others, like B12 (injections) therapies, both along with cofactors.
I don’t know what your diet or lifestyle is now.
Alcohol, smoking, excess coffee, and all forms of sugars (carbohydrates convert to sugar in the body) is never good for any condition; very inflammatory.
Drugs like statins increase risk of ALS, that is one of the potential side effects.
You can look in up yourself.
I would never take that medication or any like it.
The strictest form of the diet, has shown to help Dementia, slow symptoms, plus my carpal tunnel has healed after decades of horrible arm pains and weakness, frozen shoulder gone, plantar fasciitis gone, inflammation is much lower and improved mobility for me…
I know it is not the same as ALS, but it could be a starting point.
Just leaving this here for you.
Prayers 🙏🏽
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.
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❤😊
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.
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.
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.
I've always thought the same about the "like" button so I always think of it as a "Support" button❤
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. 🙏💜
❤ whoa that is very overwhelming. You are helping people sharing your story. My symptoms, surgery and complex medical story mimics yours. I also am experiencing shocking physician comments. Right now I should be getting another EMG but I am afraid of the results. I have so many symptoms and limited mobility as it is. I am afraid to know more deficits or another discussion of “there is no treatment” “degenerative””chronic” Doctors can only offer medications with side effects or surgeries. PT does not understand my complex atypical medical presentation. I can not afford therapy or treatment work up. ❤I take it one day at a time and enjoy the little things.
Holding you in my heart and prayers ❤
Love you cousin. Praying for you and your family. You have inspired and helped me with your videos on teaching too.
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. ❤
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.
I don’t know you, Darin, but my heart goes out to you and your wife. I will be thinking about you both as you travel this part of your journey. Take care. ❤
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.
I hated my EMG. I cried through it. They diagnosed me as Guillan Barre but ALS & MS are still possibilities. Wishing you the best!
I have never watched your videos before, but this popped up in my feed. As a stranger on the internet from Orange County, alls I can offer is a prayer for you in this season, and that the God of all creation, the one who made you and all the wonderful things of life, brings to your heart peace, joy, love, hope, strength and perseverance. And I pray for your family as well that they find peace and comfort in this very trying season of life. There is a scripture that says that He will provide us with a peace that passes all understanding and I hope you turn to Him in this time. All the best friend.
Philippians 4:6-7
6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God;
7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
I've never heard of you before today. But this video ended up in my suggested videos. I'm glad I watched. you are an inspiration. Sending Love and light to you from Chicago ❤
You are in my prayers.
Hello Mr.N!!!
I’m so sorry to hear your news, please be strong and stay positive. God bless you and your family. My brother in law about 4 years ago was diagnosed with ALS as well, he was at first misdiagnosed they told him he had MS but with more testing and many more opinions they finally told him was ALS.. he had three stem cell, have you thought about stem cell??
My prayers are with you for sure, God will give you and your family strength. Stay strong❤❤🙏🏼🙏🏼
Bless u and ur loved ones through this
This is actually my first video and I’m definitely subscribing sending you and your family and all those that’s around you prayers and hugs from Fort Worth Texas. I think your approach is amazing and you will definitely help many people around the world.
Sending you so much strength and love ❤
My prayers are with you and your family. I am cheering you on from Ohio.