Friday, July 29, 2016


     I've been brainstorming how I can make my Ice Bucket Challenge this August one for the Hall of Fame. How hard is it to rent an elephant? Should I wear a banana hammock? Do I know anyone famous? I am sincerely proud of the grassroots movement the IBC has become. The millions raised around the world and the thousands raised by the Gronk's Grace Army is nothing short of spectacular. The fight and love shown by so many has led to the discovery of the NEK1 gene that associates with ALS and gives researchers a target for genetic research. This is a paramount discovery and something that should be celebrated.
     However, this discovery is not a cure. It is not a treatment. People just like me will die every 90 minutes today, tomorrow, and the days after. This is a viciously complex disease that is attacking us all differently but with the same certain outcome, death. Millions of dollars are still needed to bring potential treatments to clinical trials. Advocating to Congress and our local officials is crucial to change medical policies blocking immediate care for those living with ALS. The same passion for grassroot movements like the Ice Bucket Challenge and the #WhatWouldYouGive campaign are essential for our ongoing war on ALS. We may have won a battle but the war is far from over.
     If you want to be a part of the solution and help those with ALS who desperately need your help, consider being a part of these awesome endeavors. 
Take action with ALS TDI
Register and donate to the Rockford ALS Walk
Join the What Would You Give Campaign

God's Grace be with you. 

Friday, July 15, 2016

Duct tape

     A week ago I went in for my three month Dr appointment, these appointments could be monthly but after I describe an ALS clinic you'll understand why I don't go every month. Clinic starts the same as any appointment, nurse checks your blood pressure, asks you about allergies and where your local pharmacy is located, you know, the basics. That's where basics end. Now it's time to run the gambit. Dietitians, speech therapists, social workers, breathing coordinators, occupational therapists, wheelchair technicians, and your neurologist are all coming your way. Don't get me wrong, I'm blessed to have them all at my fingertips in one location, most people with ALS aren't so lucky, but it sure as shit is intimidating.
     All of these professionals sit with you and run tests, ask questions and discuss what you can and can't do anymore. Unfortunately for us with ALS, the can no longer do list always increases while the can do list gets shorter. Medical professionals have the challenge of fixing people when they are broken. However with ALS, because there isn't a treatment or cure, they are left with very few tools for a monumental job and they know it. I feel at times like an airplane they're trying to keep in the air when the wings snap or they lose an engine, with duct tape. They aren't giving up on you but they also aren't going to be able to keep the plane fly worthy for long.
     This is where you as a patient start making some tough decisions. Do you want to be covered in duct tape? A little duct tape might be okay, maybe? Try a c-pap machine while you sleep, maybe a new steering column on the wheelchair, maybe cutout French bread from the diet to avoid choking, these appointments turn into giant brainstorming sessions to try and fix you, while knowing the inevitable isn't promising. For three hours you have to actually acknowledge you have a terminal illness and decide how much duct tape you are comfortable trying. I usually leave these appointments pissed, wanting a stiff drink. The Grace catches up to me later. I remember that I have hundreds of people looking out for me, I can still blare music, drink beer, speak, write, and love. The Grace still outweigh the "can'ts." Bring it on duct tape.

Friday, July 1, 2016

Want vs Need

     The good old dictionary defines want as something that is desired,  not substantial or necessary. While it defines need as something that is necessary and substantial, the serious twin that was born moments before Want and never let's him forget it. As an elementary teacher I've spent lots of time discussing Wants vs Needs with kids. We would always do a graphic organizer to compare the two and hopefully walk away from the experience understanding how great we have it and thinking about how to focus more on need. 
     I just spent the last week in NYC steps away from Times Square and some of the most lavish experiences one could imagine. Everywhere you look in downtown Manhattan there is a want. Designer sunglasses that are way cooler than yours. Artisan red velvet cupcake bites, champagne with your eggs, Cadillac Escalade upgrade from your typical yellow cab, imported espresso shots, Maine Lobster at dinner atop the Empire State Building. You quickly get caught up in the wants and start smearing wants all over your needs. We cashed in on the once-in-a-lifetime experience and indulged on the want's as one should do.
     When we returned to our quieter, slower paced lives here in Loves Park my mind shifted back to the needs mentality, at least for a few short days. I often daydream about wants, like we all do, it's human nature. I want to be able to grip the steering wheel, punch the gas, and drive for hours, when what I need is to escape. I want to cut up vegetables, I want to throw a baseball, I want to run a 5k, I want to dust in the living room, scratch my nose, pick up a taco, when what I need is to eat. Shotgun a beer, stroke Michelle's hair, I want my ALS progression to cease and just fuck off. The reality is dwelling on these wants, wants that many think are needs, doesn't get me anywhere. ALS has made me say goodbye to many things I want to do and there's nothing I can do about it.
     ALS can't control my mind and how I perceive life around me. I can pay less attention to my wants and hone in on my needs. My need to embrace the time I have with my nieces and nephews. My need to stop taking the Lord's name in vain. My need to acknowledge those close to me who have sacrificed much on my behalf. My need to forgive, write, advocate, laugh, explore, listen, love and embrace the tremendous Grace that surrounds me.