Husband, father, son, leader, Elder and Coach(ACC) in the United Methodist Church, Director of Congregational Excellence/DCM, Great Plains UMC-Living with ALS
Imagine this.
You are dying or your beloved is dying.
You're sure when leaders hear your plight-they'll care, they'll try.
Instead you hear that's not how it works, there's rules, there's not enough data. Simply, that's not my job.
And we die, trying.
Imagine that.
#ThisIsALS
I’ve watched a lot of football in my life and that game was an offensive masterpiece. A new bar has been set for excellence. A new puzzle for defenses to figure out. #StantonStrong#kcchiefs https://t.co/YS44TmtYhg
All we have is love, resilience, and persistence, to live our lives with all we have! Even though normal ways of life are gone, I’m taking on 2022 as my best year yet to live. No matter what, everyday is the best day of my life!
Here’s to the sick, the grievers, the mourners, the caretakers, the ones who usher in a new year wondering what losses it will bring, what sadness will accompany another trip around the sun. Here’s to those who know their “best year ever” is in the past and yet they keep going.❤️
Today, I signed the Accelerating Access to Critical Therapies for ALS Act. Thanks to a movement led by patients and caregivers and bipartisan members of Congress, we are finally closer than ever to new treatments, and hopefully a cure.
@sabrevaya It means a lot to me to read this. BD and AD, times such different times. The fact that you could actually put pen to paper and imagine beyond the pain is extraordinary. So much so it is no wonder you and @bsw5020 urned that pain into tangible hope for us suffering with you🙏🏻💪🏻
Informed optimism doesn’t mean you only look at the bright side. It means you don’t overlook the bright side.
If you won't see possibility, you can't solve problems. If you can't imagine a best case, you don't make things better.
The greatest antidote to fear is grounded hope.
I am in love with these neurons
The upper motor neurons!
They work so hard and they do their job so well, that you do not even realize they exist, but when they stop working you get ALS, HSP, PLS, long term paralyses after spinal cord injury..
They are majestic!
Respect pls
Last week after the Senate passed #ACTforALS, I dreamt of watching my kids grow up. The bill will likely not help me on time, but #NurOwn can. NurOwn stopped progression and improved function in some #ALS patients. pALS today want a chance to live. Please help @califf001 @US_FDA!