CHESAPEAKE, Va. (WAVY) – Kathy Reagan Young of Chesapeake is feisty and fearless. When she was diagnosed with Multiple Sclerosis, she took that diagnosis and decided to do something with it, but she admits, when she was first diagnosed, it was a lot to wrap her head around.
“I knew MS you didn’t get past. You didn’t ever say I don’t have it anymore. So, it was stunning when he said, ‘You have Multiple Sclerosis,'” said Kathy.
It was in February of 2008 when the wife and mom of two little girls heard those words from her doctor. She reflected on her symptoms prior to her diagnosis. “I woke up one day and I knew something was wrong with my vision. I couldn’t tell you what, but it just, things didn’t look right and I was so tired and I had just slept for eight hours. I honestly thought I had the flu or I was coming down with something.”
She saw a doctor who Kathy said, “ushered me to the next step which was a neurologist and MRIs and lumbar punctures and blood tests and all that nonsense.”
Not long after came the MS diagnosis. Her first move?
“I made the mistake that we all make, particularly waiting for something, and of course, I got on the internet and that was 2008, so it was horrible! There was no such thing as patient advocacy back in the day online. So, it was just these horrible, horrible stories.”
For Kathy, that was not okay. It was time for a change.
“I was disturbed by what was online and really wanted to provide a soft place for people to land, particularly newbies, newly diagnosed, or people just searching. So I said, A) I’m going to fight this, and B) I’m bringing people along for this ride.” She went on to say, “I literally envisioned MS as the monster that it is. I mean I picture it as a monster and I speak to it like it deserves and I get up everyday and I put it in its place.”
With the fingernails on her middle fingers painted orange, Kathy created the website FUMSNOW.com.
“It stands for what you think it does,” said Kathy with a laugh. “But for those people who are maybe a little more sensitive and might be bothered by that, I say it stands for Fundamental Understanding of Multiple Sclerosis.”
Kathy hopes her website can provide answers to the many questions people have about MS, answers that don’t leave you terrified about the future, because MS can be scary. Kathy knows that first hand. She deals with a number of symptoms on any given day.
“Lots of numbness and tingling throughout my body and it can change like that,” said Kathy snapping her fingers. “This is the thing that I think surprises most people is that it can change like that. I’m sitting here talking and then all of a sudden I can lose feeling like that, or something starts tingling, or this side of my face starts vibrating. Not that you could see it, but I could feel the vibrations. So, we get to be actresses and act like nothing is wrong. My vision can double. When my heart rate gets up at all, and I mean I can walk up the steps and lose sight in my right eye. I have an issue with my hearing sometimes. No rhyme or reason. It just happens and all of a sudden I can’t hear out of my right ear. Balance can be off.”
Kathy said of all the symptoms there is one she despises the most.
“Cog fog. It’s the cognitive confusion. It got so bad that’s what made me quit my job that I absolutely adored, because at one point I literally couldn’t decide between the gas and the brake, which one I was supposed to be using, or which side of the road I was supposed to be riding on, and I had enough wherewithal to understand that’s dangerous! Pull over, call your husband, and you’re done.”
“I always say that I provide information, inspiration, and motivation,” said Kathy.
While there is no cure yet for MS, there is hope…and if you need a little extra, Kathy Reagan Young has plenty to share.
“I will not let it win. I will not let MS win. No chance.”
Kathy is creating an online course called “Patients Getting Paid” where anyone with a chronic illness can find legitimate jobs that allow you to work from home. She will have that ready for you in a few months. Click here to sign up for the free information.
Digital Extra: More information on “Patients Getting Paid”
Remember, it’s not too late to join the WAVY Warriors at Walk MS! The event is Sunday, April 7 in Norfolk at the MacArthur Center Green. Registration is at noon and the walk starts at 1 p.m.. To join the WAVY Warriors, or to donate, click here.