“She’s Crazy Strong Inside”—A Young Woman’s ALS Caregiver Journey

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November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers in the ALS community.

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Life is what happens while we’re making other plans. Karen Vick can tell you all about that. Back in 2017, Karen’s life was full. She and her husband Tony had been married for a couple of years, and she had opened a couple of businesses. It was hectic for sure, but for Karen and Tony the future seemed bright.

But Tony had been having some nagging problems they had to figure out. He started having trouble gripping dumbbells with his right hand during workouts. Probably just carpal tunnel, they said. But then he started having issues with his gait while walking, and it wasn’t getting better with time. He had even gone so far as to schedule spinal surgery before they suggested a few more tests, just in case. That was the first time anyone mentioned ALS.

Karen was away on vacation with her family when Tony got the final diagnosis that it was, in fact, ALS. But he didn’t want to tell her over the phone. “So when I got home from vacation, I got in the car when he picked me up from the airport and he told me on the way home,” Karen says. “He had known that for a couple of days prior and that just breaks my heart.”

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The role of ALS caregiver wasn’t what Karen had planned, but together with Tony and their family, they set about figuring out this “new normal.” “I had a few businesses when Tony was diagnosed. I owned a pie and ice cream shop at that point, which I ended up selling just because the demand was a little too much on me for having to take care of him and do that,” Karen says.

Tony and Karen turned to each other to figure out their path forward, and they found they were better when they could face it together. “She’s crazy strong inside. That’s why it kinda makes me laugh when she’s so anxious about me. It just goes to show how much she loves me,” Tony says of Karen. “His inner strength is something that I admire, and I think even since his diagnosis it has really shined through. I look for that as motivation for me and it helps me come up with that inner strength too,” Karen says of Tony.

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We realized that once we said it out loud, the more we told people, the easier it got. And so that's kind of how we came about our social media (posts), was just voicing it and saying ALS out loud, and it really helped us raise awareness and helped us get through those hard times.”
Karen Vick
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One decision both Tony and Karen made early on was to be open about what they are both facing. They are active on social media talking about the realities of living with ALS and being an ALS caregiver. “It kind of happened by accident.” Karen says. “We shared a video on TikTok, and it ended up going viral and just seeing the response to the video and all of the people that said that our videos helped them. Those comments and those people that need the support is what really has made us keep going in this social media caregiver ALS journey.” “We try not to just sugar coat it, we’re more raw and real, the actual effects of (ALS). And we've gotten really good feedback from people,” Tony added.

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The support of the community, and those close to them, means a great deal to both Tony and Karen. “Everybody wants to help or are asking for ways to help, but it's best to be really specific,” Karen says. “Having those specific things like ‘I could do this’ is really helpful because in our minds (as caregivers) we have a whole list of things that we need to accomplish and that would make our weeks easier. But having to voice that and tell people that sometimes can be a struggle.”

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Even though she is now Tony’s full-time caregiver, Karen still makes time for herself. She makes sure both she and Tony have time to go to the gym, and she still owns one business with her best friend and they are grateful for what they have and their time together. “We always lean on each other, like if one of us is feeling down, the other one can lift the other up,” Karen says.

In honor of National Family Caregivers Month, download this infographic about caregiving and share on your social platforms to support a caregiver you know. To learn more about how you can get involved in the fight against ALS, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog HERE.

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Comments

Submitted by: Greg B. on Tue, 04/02/2024

We are living the same as Tony and Karen. You just have to play the cards your dealt. I’m coping pretty well other than acouple of falls. I’m still strong in the upper body after 2 plus years.

Submitted by: Lori B. on Wed, 04/03/2024

I have ALS and my sister is my caregiver. I live with her and her family and I’m so thankful for them. I watch you all on TikTok and love your stories. I see the love in each of your eyes This is a hard road to follow, but I trust in God to do what he knows his best

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