June 7, 2015 by Todd Neva
Five years ago today, my life was divided into before and after a neurologist diagnosed me with ALS.
A family friend had recently died of ALS. The disease ravaged his body, and it took him in just a year and a half.
“How long do you think I have?” I asked.
“We’ll have a better sense after a year,” he said.
He told me if the disease progresses slowly, it will continue on a slow course. If it progresses quickly, then I will have less time than the 3-5 year average prognosis. I checked in with him every few months and he monitored my strength.
One year after the diagnosis, I drove to the clinic and walked into the exam room. Kristin and I sat in his office with bated breath. My arms were much weaker. My lung capacity had declined.
Holding back tears, Kristin pressed him, “How long do you think Todd has?”
“Five years.”
The clock was ticking.
Now, five years later, I’m optimistic that I’ll have years ahead of me.
I’m a quadriplegic in a wheelchair. I’m dependent on Kristin and equipment to transfer from bed, to chair, to toilet. I spend long hours at my computer with adaptive equipment. Because I have virtually no hand function, I eat at the kitchen island face-to-plate.
“I’m eating like Dad,” Isaac said the other day.
“Your muscles work, Isaac,” Kristin said. “Use your fork.”
So what is my secret to longevity?
Nothing. This disease ravages bodies indiscriminately and takes a different path for each. There’s little proven to extend life. But I do what I can — keep a positive attitude, pray for healing, take supplements, keep my weight up, and live an active life. Most of that might have a bigger impact in my disposition than it does on my prognosis. It feels good to try something, as long as it doesn’t break the bank.
No matter what path the disease takes, it all ends the same — miserably.
I dread that day, but it keeps me intensely focused on doing all that I can today. I worship my God. I love my wife. I engage with my kids. I listen to my friends. I’m active in my church. I eat great food with no regret. I laugh. I cry (as seldom as possible). I write.
I have a full life. I can’t imagine how I ever had time to work a regular job.
To celebrate the occasion, for the next month we’re lowering the price of Heavy e-book on Amazon to 99 cents.
Spread the word.
