3 days ago
Roanoke man living with ALS is on a mission to help others
ROANOKE, VA (WFXR) — A Roanoke man living with ALS, also known as Lou Gehrig's Disease, is working to spread awareness and understanding about the disease, and make it livable for everyone until a cure can be found.
'I don't think you can ever be ready for a medical change that totally alters your trajectory in life,' said Mark Kary, who is living with ALS.
ALS is a neurotmesuclar disease where the brain stops communicating with the muscles. For some, a person might lose the ability to walk, talk, eat, breathe, and it can sometimes be fatal.
'If I want to go into my emails, I can scroll down with my nose,' shared Kary.
Mark Kary is 75 years old and is living with ALS. He said that right around the time of his retirement, he started to notice some weakness in his left arm.
'My brother, who was a doctor, found it, and that was about 12 years ago, which is a real anomaly time-wise. And I wasn't diagnosed until about five years ago,' said Kary.
Mark's version of ALS is extremely rare.
'Only affected thus far my arms, hands, and shoulders, which have atrophied or, as I like to say, my arms are for decoration only,' shared Kary.
Even with the diagnosis, the disease hasn't taken away his appetite for life.
Every day the sun comes up is a beautiful day. One of the things I say is, how I get things done is with the hands of others.'
Mark Kary
His arms, hands, and shoulders might not work as well as they used to, but that doesn't stop him; he said he just had to adapt.
'Think about personal hygiene, anything you can do with your hands. I can't do,' shared Kary. 'I can still brush my teeth with an electric toothbrush, but that does take, you know, a four-step process.'
I think you have to have a mission in life, no matter how brief.'
Mark Kary
'For most people who have ALS, they don't have the timeframe that I have been blessed with,' shared Kary.
And with the time Mark does have, he has created the ALS Red Ball Express. It's a visual and digital aid that you may have spotted on the back of cars.
'I want people to walk over and point their phone at it and get a connection to information,' said Kary.
Whether it's connecting people with information or raising funds for the ALS Association, Mark is on a mission to ensure there is a visual representation of ALS on the roads in Roanoke every day of the year.
Mark's story doesn't end, He's also been busy advocting for disabled people with adaptive access in Roanoke. A few years ago, he spoke with the City Manager, and helped put in place the Star City's first 'open access barrier-free parking' in downtown. Those are parking spaces specially set aside for disabled drivers, so they can park in timed spaces, for up to 10 hours.
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