Just Roll With It Troy!
A mediocre runner's inspirational journey from the terrible horrible beginning to sub-elite. Then following a devastating Amyotrophic Lateral Sclerosis (ALS) diagnosis in 2023, this now disabled veteran's humorous and painful journey through life with ALS. Embracing the miles, the smiles, and the occasional breakdown.
JUST ROLL WITH IT TROY!
Enjoy the Book? Please Donate!
READ THE BOOK!
Share with others!
My first run is the terrible horrible on a hot July day in 2003. That would be the first of many failures. Undeterred, I persevered to accomplish many running feats. I ran the Boston Marathon in 2005 and the year after the 2013 bombing. The pictures are from 2014. My arms ached for days from low fiving kids and flashing peace signs at spectators. When you run Boston do it for fun. You will regret running for "time." Slap hands, kiss the girls, stop for beer, and get sprayed by firefighters!
As I accomplished running goals I added completing ultra-marathons and trail events to the list. Word to the wise, study the event before you register. I did not and found myself running (lots of walking) some extremely difficult terrain. Jemez NM, Catoctin MD, Music City TN are no laughing matter.
Grasslands 50 mile
50 States, TN Music City Ultra
Boston Marathon 2014
Lean Horse 100 mile
Chattanooga 3-Day
In 2011 I made a new year's resolution. If I said "NO" to something new I had to do it. No long after I found myself saying "Hell No!" when asked about doing triathlons. And so, I set my sights on the 2012 Iron Man AZ. I did not swim and did not bike. I eventually set goals to qualify at the U.S. Nationals and participated in the ITU Long Course Age Group World Championships.
Iron Man AZ Swim and Bike
ITU World Chapionship
Extremely difficult day at Worlds. 25-30 mph winds caused white capping for the no wetsuit swim. Dozens of athletes were pulled from the treacherous waters. The high tail winds made for speedy biking, but the head winds brought bikers to a crawl. High temperatures wreaked havoc on the runners and many more athletes dropped or were taken from the run course.
NOT TODAY ALS
In 2020 I experienced a momentary loss of feeling in my right leg while running. I figured it was a running quirk and didn't give it much thought. From 2020-2022 the loss of leg feeling happened more frequently. Eventually I could not run at all. In July 2022 I went to a neurologist and in January 2023, I received my ALS diagnosis. I was devastated. ALS is always fatal and most die within 2-5 years from symptom onset. I was 3 years into a death sentence. Why bother? I became a used to be.
Months of crying, sulking, and grieving transpired. Life before death. How will I live? I had to live with hope. I had to challenge the dead in 3-year norms. Recognizing ALS will do its own thing, maybe I can offset the rate of my body's decline. Drugs. I started taking a dozen different drugs and supplements. 3 years went by before I found a combination that currently works for me. I have participated in 5 research trials to date. No cures yet.
ALS is different for each person. Some progress rapidly and pass within 6 months. Others get by for over 15 years. No one knows why. I'm told I have "GOOD ALS." I understand the comment, but do not find it comforting. Good ALS is upper motor neuron dominant (UMN)ALS. UMNALS causes spasticity and hyperreflexia. UMNALS prognosis is over 8 years. Lower motor neuron dominant ALS causes atrophy, hyporeflexia, loss of muscle use, and progresses more rapidly.
Given the GOOD ALS news, two running goals remained unfinished, complete 100 marathons (I had done 93), and complete the World Marathon Majors (Only Tokyo remained).
I can't run but I can ride! Pedal assist E-Trike! Sweetie wants one too!
Much thanks to the Department of Veterans Affairs for purchasing my E-Trike!
Now to finish these pesky running goals. I don't have the arm strength for a wheelchair and I can't run/walk. How can I get to 100 marathons. DUO-TEAM! I ride and others push. Once again Veterans Affairs finds a manufacturer and purchases the racing wheelchair specially adapted for my ALS needs.
#94 - NYC Marathon
#95 - Perpetual Motion
#96 - 2024 Dallas Marathon
#98 and World Marathon Majors 6-Star Completion - Tokyo Marathon
#99 - Hula Loop 50K
The Journey from 94 to 100 lasted 13 months. Many wonderful folks dedicated time and effort making my running goals a reality. Lots of moving pieces had to work smoothly. Pushing the peanut (race chair) is hard! The chair and myself weigh 280 pounds. There is no steering. The pusher must muscle the turns. Braking is nearly impossible. A lanyard is tied to the pusher to serve as a last ditch emergency brake as the pusher is dragged behind. Two things every pusher said, "This looks easy" and "This is much harder than it looks."
#97 - Cowtown Marathon
#100 Abominable and the Elves at the 2025 Dallas Marathon
ALS AND VETERANS
About 2 new cases of ALS per 100,000 people occur each year. Veterans are twice as likely to be diagnosed with ALS, with an incidence rate of 4.5 per 100,000 veterans. The Department of Veterans Affairs (VA) views ALS as a presumptive service connected 100 percent disability.
The VA provides extraordinary benefits and services to Veterans with ALS (VALS) and their caregivers. If you are a new VALS contact the Paralyzed Veterans of America (PVA) immediately to begin your journey. The PVA can file all your initial and ongoing claim paperwork. DO NOT go it alone. DO NOT walk away from your benefits!
When diagnosed you feel helpless. The call to PVA and ALS.Org are emotionally difficult. These folks are extremely empathetic and truly want to help you live your best life.
When I began my journey I had no clue. Within 2 weeks I had claims pending with the VA and Social Security Administration (SSA). The SSA also expedites ALS claims for disability compensation and Medicare.
To this day I am shocked by the VA support and feel for non-vets with ALS. Once approved the VA provided:
1. Disability compensation (varies from 5000-11500 per month based on condition)
2. Full medical coverage, including medications
3. A vehicle allowance and wheelchair adaptations
4. Home renovations (ramps, lifts, wheelchair accessible bathroom, safety bars, home automation, and more
5. An Eyegaze speech device
6. All needed durable medical equipment (DME)
7. A caregiver stipend, respite care, and health insurance
8. Recreational services and equipment
Don't accept no for an answer. Always escalte to senior managers and/or the PVA. To date, everything I requested has eventually been approved.