ALS Awareness Month
ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are more likely to develop ALS than the general population.
May is ALS Awareness month, an opportunity for the ALS community to work together to help educate people about this devastating disease and shine a spotlight on the impact ALS has on the families it touches.
The Vicks are a local family known for their advocacy and dedication to ALS awareness, all while facing the disease daily.
Tony Vick served his country for 16 years in the Army and Air Force Reserves, including 10 years in the civil service.
On Tony and Karen’s first date, he took her out to see G.I Joe at the movie theater on his motorcycle. She said, “I quickly fell in love with his tough guy persona, sweet smile, and big heart.” In 2015, she said, “I married my G.I. Joe.”
That same year, Tony started to notice his grip strength start to weaken at the gym. Within two years he had multiple procedures and was scheduled for spinal surgery. Karen said, “The week of his spinal surgery, we got a call after someone looked at his file and knew it was ALS.”
Tony’s military service came to an end when he was diagnosed with ALS in 2017.
She said, “When you get married, you feel like you’re going to spend your whole life with someone. This diagnosis has totally changed our lives, changed our marriage, changed everything. Just knowing you don’t have forever.”
It’s been nearly six years since Tony was diagnosed with ALS and although life looks different for Karen and Tony, they continue with resilience, together, to face the challenges ALS brings.
“An average day for us is getting Tony out of bed, helping him to the bathroom, and getting him ready for the day.” They love starting their mornings with coffee together. Following his morning medications and shakes, they spend most of their day at their home gym. She said, “He will do a seated recumbent bike, core, and cable training.” As Karen helps Tony move from machine to machine, she does her workout as well.
After the gym, she helps with his shower routine and gets him ready for the evening. Karen feeds him dinner, then gives him his nighttime medications and brushes his teeth. She said, “We end our nights with some snuggles from our doggies, Nellie and Kobe.”
With Tony’s progression, their strong community of support is essential in Tony’s care, she said, “We couldn’t do this without our tribe of people.” Their support is apparent every year at The Kansas City Walk to Defeat ALS. Last year, nearly 30 people walked on Tony and Karen’s Walk team: Vicktory over ALS.
The ALS Association’s Walk to Defeat ALS is a yearly family-friendly event that has a direct impact on people living with ALS and their families. Funds raised at The Walk go towards education, support groups and care for local families, such as the Vicks.
“The ALS Association is like our security blanket. We know they are there, and available anytime we need advice or assistance,” she said, “That peace of mind is priceless.”
The Kansas City Walk to Defeat ALS is Saturday, October 7th at Kauffman Stadium.
“There is something magical about The Walk to Defeat ALS, everybody coming together for such a great cause that makes you want to do even more for the people and families battling this disease.”
Tony and Karen continue to do more for the ALS community, despite facing the challenges of ALS every day.
Karen’s social media accounts, the karegiver, highlights the raw reality of caregiving for a spouse. It all started when Karen posted a video of Tony getting on a boat, with the help of others. She said, “After that video went viral, we decided this was what we needed to do to spread awareness for a disease that didn’t get enough attention.”
“Curious minds and open hearts led us to hundreds of thousands of followers that we connect with daily.”
In addition, the Vicks have participated in several ALS advocacy efforts. “We’ve gone to Congress to request changes in policies and increase funding,” she said, “this year will be Tony’s fourth time participating in The ALS Association’s Advocacy Conference to advocate for all those battling this disease.”
Since Tony’s diagnosis, many things have changed for the Vicks, but one thing remains for Tony and Karen Vick: love and hope.
This May, The ALS Association encourages you to help spread ALS awareness! Below are a few ways in which anyone can participate in ALS Awareness Month:
Register for The Walk to Defeat ALS at www.walktodefeatals.org.
Sign up to be an ALS advocate. It is through your advocacy that, together, we will create a world without ALS. To sign up to become an ALS Advocate, visit: www.als.org/advocacy.
Share your story: Whether you are a person living with ALS, a caregiver, or loved one to someone living with ALS, sharing your story can help others in the ALS community and beyond feel connected to the impact of this disease.
For more information about ALS and The ALS Association, visit: www.als.org.