In celebration of mothers everywhere today, we are honored to share the story of celebrity hairdresser and beauty expert, Ken Paves, and his amazing story about life, love and caring for his beautiful mother, Helen, who recently lost her battle with ALS.

Today is Mother’s Day, a celebration honoring mothers of families everywhere, as well as motherhood, maternal bonds, and the important influence our mothers have in our everyday lives and in our communities, especially in our ALS community.

Ken Paves is a celebrity hairstylist and entrepreneur, working globally with some of Hollywood’s most popular stars. But what Ken likely considers his most important role in his life is being a caregiver to his mother, Helen, who recently lost her battle with ALS. In a Connecting ALS podcast episode, Ken shared his thoughts and feelings about his amazing relationship with his mother and his experience with their ALS journey.

"When I look at her and when I see what ALS has taken away from her, it makes me realize even more what it could never take away from her, and that's her spirit, her inner beauty and her strength."

“My mom is everything and she has always been the strongest, and most supportive,” he said. “My mom worked three jobs, in auto factory, cleaning houses, planting flowers in her field, and still had time to coach my T-ball team and helped me build my first car.” He described her as a wonder woman and the ultimate mother and role model “in every way, shape, and form.”

At just 4'11”, he characterized her as “small and mighty, and the kindest, most considerate person that you'll ever meet, and raised three boys to consider other people and to be aware of other people and to not feel invisible and all of those types of things when many times that was her experience.” To Ken, she was the most loving, unbelievable woman and his best friend. “And again, my everything,” he said.

Ken’s mother traveled around the world with him as his model for all of his products, appeared on television interviews with him and was always welcomed at his friends' houses. “I always say that everybody likes my mom, more than they like me. If it weren’t for my mom, nobody would care about me. My mom is the best,” he shared.

After Ken’s father passed away and Helen received her ALS diagnosis, Ken immediately moved his mother in to live with him, taking on the role of her primary caregiver with help from nurses who would come to the house. As Helen’s ALS progressed, he quickly learned the importance of finding people who had previous experience and a true understanding of ALS to help keep his mother as comfortable as possible.

Before my mom lost her voice, I had asked her if she wanted to do something like this to kind of share her story. And the whole reason to share her story is because, ironically, we've been able to find a way to embrace this and still live a great life together, and celebrate it, and find beauty in this new way of life for her. The struggle is hers. The pain is hers. The loss of ability is hers. The beauty is also hers."

Ken eventually moved his mother back home to their hometown in the upper Midwest. “We started off with hospice care and then COVID set in, and my mom had had COVID previously. So, I limited the amount of people that I wanted coming in because she's so compromised,” he said. While he reached out and accepted help and resources from The ALS Association and Team Gleason, he took on the challenging role as her sole caregiver, 24/7. As his mother had once done for him, Ken was determined to do everything he could for her. “She's my best friend. We literally laugh all the time, and I can see her do her kind of giggle now.”

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He also shared some of the challenges he faced being a full-time caregiver, up and down, day and night. “We've been around the world so many times together, up late nights,” Ken said. “Before my mom had ALS, I was visiting the house. We would go to Myers at midnight and grab paint and decide to paint the dining room, so me and my mom being up around the clock is not a thing.”

Ken hopes those who learn about their journey with ALS focus on what has not been lost to ALS vs. what has been lost. “Our favorite thing before was going to the movies,” he says. “We watch movies together in her room. We still watch TV programs. We FaceTime with all of our friends. I get her ready. I dress her up. I do all those things. The dogs visit. I take her out on the patio in the summer. So, we found a way to still do all the things that we did before, but just differently, and I hope that anybody that watches this can find the strength to live as normally as possible while carrying this incredible weight, but live as free."

Our deepest sympathies go out to our dear friend, Ken Paves, and his family as they mourn the loss of his beautiful mother, Helen, who lost her battle with ALS on May 1st. And special thanks to them for allowing us to share their personal journey with the ALS community. To learn more about how you can help make a difference for people impacted by ALS, visit our website here: als.org/awareness

To continue to follow stories from people in the ALS community and to learn more about the disease, follow our blog at als.org/blog