FORT WAYNE, Ind. (WANE) – In fall of 2020, Kathy Winter started to have issues with her left leg. Then in spring 2021, her words started to slur.

“It takes about five seconds on Google to realize this is serious,” she said.

Kathy went to a family doctor and then a neurologist and had test after test. MRI after MRI. A second opinion. But, it was clear. Kathy had ALS.

ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disorder that causes the body’s nervous system to stop communicating with the muscles and slowly takes away the ability to talk and walk and eventually breathe. The average life expectancy is two to five years.

Doctors don’t know why some people develop it and there’s no cure yet. It’s also rare.
The ALS Association estimates 16,000 people in the U.S. have it at any given time. That’s about four to six out of every 100,000 people.

Kathy, and her husband Keith, started dating when he was 15 and she was 16. They’ve been by each other’s sides for almost 50 years – married for 41 of that.

From in health to now in sickness, their partnership rooted in faith, is unbreakable.

“We’ve tried to embrace this and use this opportunity to impact others and share a message of faith and a message of gratitude and the hope is eternity,” Keith said. “We’re not real hopeful for the next five years. Her grandbabies are probably not going to remember her, but we’re grateful for the time we’ve had and the time we have and the opportunity to use this because God chose her for a reason.”

Every morning, Kathy, now 65, still reads her Bible. It’s full of handwritten notes and worn from years of study that built the foundation of faith that now holds her up.

“You can talk about faith, but until you rely on it, it doesn’t mean anything. It’s like a chair. Until you sit on it, you don’t know if it will hold you,” Kathy said.

Instead of asking why, the Winters are embracing the now.

“You have to surrender all that to God. He didn’t cause this, but He allows it. So, every day, we try to be grateful for something,” Kathy said.

Walking and talking are more difficult for her now.

“All you want to do is be normal. That’s it. When normal isn’t available anymore you just hold on to the gratitude,” Keith said.

Kathy might not physically be at her grandkids’ birthdays and graduations and weddings, but her words and love, through handwritten notes, will be.

“I can only write one letter a day because it’s emotionally exhausting,” Kathy said. “There’s one for when they turn five and one for preschool and one for high school graduation. They’ll say you’re worthy and loved by the Creator of the Universe. He made you just how you’re supposed to be. On their engagement, there are things about marriage. Don’t go to bed mad. Love a lot. Be kind. Meet them at the door. Kiss them every morning. And the last one is for when they have their first baby.”

Each of Kathy’s four grandchildren will get eight letters. Her three sons and daughters-in-law will get letters too. She also did a Storyworth book – answering one question a day for a year about her life and her responses are now published into a book.

“All of her kids have a copy and I think that’s really meaningful because it gave her an opportunity to say some things that she wanted to say and she told a couple of secrets about us that I don’t know if everybody needed to know or not, but also, I think it was therapeutic for her and great for her kids,” Keith said. “It’s something they’ll always be able to remember their mother by and it’s really truly her heart with her sense of humor and just a really great depiction of who Kathy Winter is.”

In a world where there’s never enough time, perhaps the one mercy of this disease that takes so much, is knowing what little time is left.

“It gives you time to prepare the people you love and your heart because I’m going to meet Jesus soon and I’ll be ready,” Kathy said.

Kathy spent her career taking care of others as a nurse and stepped down from that role last fall.

While she is taking ALS medications to try to slow the disease, it will keep progressing. Parkview Health also has an ALS Clinic in Fort Wayne.

“The doctors and nurses and physical therapists are good and telling you and helping you get ready for what it is to come,” Keith said. “She’ll ultimately need a CPAP for breathing and a tube to eat because swallowing is getting more and more difficult. We’re just taking those things as they come and handling it the best way we can and just being thankful for today.”