ALS Won’t Stop J.P. Whalen From Becoming His Own Advocate

“He said, ‘I’m not going to die from it. I’m going to live with it for as long as I can.”

It all started with a playful afternoon with his granddaughters.

“I tried to do a cartwheel and my right arm gave out on me and I fell,” J.P. Whalen said. “I kind of crumbled to the grass.”

Whalen, an otherwise healthy 65-year-old Baxter resident, saw a number of doctors and specialists after what he thought was a rotator cuff issue. However, the diagnosis was far more serious.

“I think it was December 21st or 22nd of 2015 when I was formally diagnosed with ALS,” Whalen said.

Amyotrophic Lateral Sclerosis, also know as ALS or Lou Gehrig’s Disease, is a neurological disease that kills the neurons which control voluntary muscles. The prognosis is typically very poor.

“It didn’t register, until [the doctor] said, ‘the prognosis is you have 24 to 36 months to live,'” Whalen said.

The news is hard for a patient to hear, as well as the family. J.P.’s wife Donna has been by his side before and ever since the diagnosis.

“When he did, it was like somebody socked me in the jaw,” Donna Whalen said. “I just couldn’t quite believe [it was] ALS.”

Awareness of the disease spread in 2014 with the ALS Ice Bucket Challenge, which raised over $100 million dollars for the ALS Association to aid in finding a cure for the disease. As for J.P. Whalen, he is working on becoming his own advocate, including being one of the first patients in Minnesota to receive Radicava, a medicine used to slow the progress of the disease.

“I happened to run across a friend of mine who used to work at the hospital here for Essentia Health who worked on that floor,” Whalen said. “And she said they do infusions there for chemotherapy, why can’t they do the Radicava for ALS.”

J.P. receives his Radivaca treatments at Essentia Health, where he will go in 10 days straight for infusions followed by 14 days off. Two years into the disease, however, he and Donna want to raise awareness and show that accepting the news is the hardest step.

“Once you come to an acceptance of what you have and what you have to face, it’s a big hurdle you’ve overcome,” Whalen said.

While ALS may slowly be taking his physical body, JP’s spirit has never been stronger.