📢🧠 My Inspiring ALS Update 💔🕊️

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!

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.

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

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.

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 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 YouTube to see if you’ve uploaded anything 🙂

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.

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.

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

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..

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! 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. 🙏

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.

"Go find some joy!" ILY Darin. You are joy.

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 .

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!!!

Got my bracelet. Thank you! Sending healing prayers to you and all of us. Go find some joy!

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 .