This weekend I attended the kickoff for the Second Annual Blue Ridge Ride to Defeat ALS at the Pro Re Nata brewery in Crozet. Riders take off at 7 am on May 13th from the brewery. Three choices for distance means there will be a perfect route for all comers. Last year, Peggy and I rode the 25K route out to Chiles Peach Orchard where they gave us free ice cream. The published fundraising goal is $150K, and, with your help, I anticipate we will exceed that. The money goes toward supporting ALS clinics and ALS families with unmet needs.
A young, enthusiastic man introduced himself to me at the kickoff, saying he is working with Steve Greer as the new co-chair for the ride. His name is Justin Rumley. He is a cyclist, and an architect who builds glass skyscrapers.
Justin lost his dad to ALS, and has been committed to ALS advocacy since his dad was first diagnosed.
Justin tells the story of his father’s need for a device to enable the use of his feeding tube while on his own. As his dad grew weaker he could no longer hold the syringe that connects to the tube, and they could find nothing that was commercially made and affordable.
So, Justin went to work in his garage to fabricate something that would make his dad’s life a bit easier. He called it the “Buckwheat”, because that was his dad’s nickname.
Now Justin has a small business making Buckwheats for people all over the world.
Justin is a fine example of our new ALS kin.
Since being diagnosed, December 2, 2021, Peggy and I have gotten to know a legion of souls like Justin. Many say it’s the worst best club to be in.
Our ALS kin have inspired me to create the ALS Turbo-charged Living Scale, or ALS-TLS. Instead of measuring ALS decline like the ALS-FRS-R, this scale monitors post-traumatic growth, in 12 domains. Although the ALS-TLS originates within the ALS experience, I suspect others may find it intriguing by substituting “difficult life circumstance” for ALS. And, I firmly believe that ALS caregivers are just as likely as the people living with ALS to demonstrate growth in turbo-charged living.
More on Turbo-charged Living, and its effects on daily function, in a later post. For now, have a look at the scale. To score the scale, elect the statement that best matches your current state in each domain, and tally the scores for a current state score.
I love this Turbo-Charged Living Scale and think if all of us could frame our adversities in this way – wow what a difference we could and will make in this world! You continue to open new pathways in our brains, Jim – and we are so lucky to know you. Love love love you!
I want to use this scale for my MS! 🙂
Do you have the Turbo-charged scaled in a format that it can be shared at a support group? I would love to invite folks to do this and bring it to their clinic appointment!
Anne -The ALS Association
Thank you for this beautiful framework. I think we’re all on our own crazy journeys and it’s important to self assess and introspect. (*insert dark humor joke here) Good stuff!
~David, Hop On A Cure
Brilliant! Flipping the paradigm! I am a yoga therapist and mindfulness teacher that works with ALS, and have seen this turbo-charged attitude work with my clients as they become more mindful of their movements – with kindness and acceptance. It’s empowering! Also exploring new ways to breathe WITH ALS. Significant work. Thank you! Let’s move this work into the mainstream.