ALS, also known as Lou Gehrig’s disease, occurs when “the brain and the muscles don’t work together,” as Runkle explained. The terminal disease weakens muscles, causing patients to gradually lose the ability to walk, speak, and breathe.
Runkle was diagnosed with ALS on Jan. 13, 2016, following a series of doctor visits that began with sleeplessness caused by persistent muscle twitches. The sleep specialist Runkle saw had given him standard advice about avoiding stress, but when Runkle asked about the uncontrollable muscle spasms he saw “this look in the doctor’s eye” that signaled bad news.
At this point, Runkle had already done his own research and suspected that he had ALS, but when he received his official diagnosis he “felt like someone had hit a pause button and everything had just stopped. People were talking, but I couldn’t here them. I was in shock.”
In that moment, his life “did a complete 180.” Runkle knew that the average ALS patient dies within two to five years of their diagnosis; all the plans for relaxing and traveling he and Lisa were looking forward to now that their two sons had moved out vanished.
“Our future is not what we had hoped,” Lisa said. “The disease dictates everything we do. It’s hard for him to live with it, it’s hard for me as a caretaker, and it’s hard for the kids to watch him deteriorate.”
“ALS affects people emotionally as well,” Runkle pointed out. For him and his family, every day is a mental battle, and he has had to learn to accept his diagnosis and adapt to supporting others with the disease until they pass away, as two of his friends did this year.
There is some cause for hope among ALS patients, however: the Ice Bucket Challenge, which went viral in 2014, has succeeded in raising both funds and awareness to fight the disease. ALS is no longer “just a matter of when you would die,” according to Runkle. Instead, patients can now participate in many trials for drugs that could treat or even cure it.
Runkle participated in one such trial for 12 months, and may eventually participate in a stem cell therapy trial, which would require him to spend up to $20,000 to extract his own stem cells, one of the reasons for holding his fundraiser. He will also be one of the first patients in the Cincinnati area to take a drug that slows the loss of motor function called Radicava, the first FDA-approved ALS treatment in 22 years.
The disease has also been progressing slowly for Runkle, making him “one of the lucky unlucky ones.” Though he first experienced symptoms in early 2015, he is now only suffering from fatigue in his legs, which makes it difficult for him to walk up stairs but doesn’t stop him from walking and talking.
“I’ll probably beat the two to five year life span,” Runkle said. “My doctor told me that ‘you’re going to be bugging me for many years to come.’ I’m hoping that (while I’m alive) they’ll find a cure.”
HOW TO GO
WHAT: Team Karl Strike Out ALS Fundraiser
WHEN: 4 to 10 p.m. Saturday, Sept. 9
WHERE: Joe Nuxhall Miracle League Fields, 4850 Groh Lane, Fairfield
TICKETS: $10 for adults, Ages 12 and younger admitted free
DETAILS: Music, bake sale, concessions, raffles, silent auction, split the pot, wiffle ball tournaments for agess 13 and older, and face painting and games for children.
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