Lamar Woody and his family, Living with ALS

Lamar and Kristina Woody are a lot like any other busy, hard-working couple. They’re juggling careers, education and the day-to-day activities of their sassy and smart nine-year-old daughter, Natalie. Married for over twelve years, they love laughter, music and spending time with family and friends, living their life focused on love, friendship and positivity.

They are also living with ALS.

Their ALS journey started in 2016 when Lamar began to experience odd feelings in his legs. “I literally get up from my piano and I’m walking out of the room, and I felt like my legs were stuck to the ground,” he said. He didn’t think much about it at the time, chalking it up to a flare up of some old health issues. But after a few visits with a physical therapist, they realized that something was off with his walk, and he knew it was time to further investigate the issue.

Kristina, a nurse by trade, said “symptoms-wise, nothing really added up.” One doctor suggested diabetes as he is a type-one diabetic. Another physician suggested neuropathy may be the cause, while yet another suggested brain cancer or maybe the need for a trip to see a psychiatrist.

After two years of frustration, tests and doctor visits, they finally heard those three terrible words, “You have ALS.” Kristina recalled, “so you get this diagnosis, you have ALS, what do you do when you come home? What do you say to each other?” As a nurse, she knew immediately that this was going to be a tough journey.

“After more than 10 months of doctor visits, I was diagnosed with ALS in August of 2018,” said Lamar. “My immediate response was complete disbelief. I’d been healthy and active my entire life and I was only 30 years old.”

Lamar reflected on what life was like before his ALS diagnosis. “I always look at my career and the words I would call it was, constantly developing.” He worked as a master barber for several years. He taught music, voice as well as piano and vocal performance. He always loved working with his hands. “I didn’t see those as my ultimate career paths, especially not barbering, but it’s just something along the way that I picked up, with me being an artist at my core,” he said. “So, it lit a fire under me just to try to keep using my hands back even then.”

“Those who know me, especially my wife, Kristina, will tell you that I am a very strong-willed individual. So, of course I tried to go back to work. I figured that I would be able to bounce back into the normal swing of life. I was symptomatic, yet I treated this disease like it was just the common cold. That was a mistake. No matter how much I motivated myself, I still lost muscle mass and energy. Needless to say, I can’t work anymore.”

“We’ve been together since we were teenagers,” says Kristina. “We were both athletes and so it was always important to us to be fit and active and be outside. That obviously looks a bit different for us now.” In her 11th year of nursing, Kristina says, “I have the unfortunate trifecta of responsibility: I am a full-time professional nurse, a caretaker at home, and a spouse/mom.” Since Lamar is unable to work, she has turned to travel nursing now to have a little more flexibility and help continue to make ends meet financially.

Natalie was only four and a half when Lamar was diagnosed. “She didn’t really understand the seriousness until this past year,” says Kristina. Natalie loves music, she loves to sing and dance and play with her friends, and she loves to play softball. “She’s definitely our light in our life for sure, so we have a good time with her,” Kristina shared. “She’s very into science, which has been another thing that we can share with her and an easy way to talk with her about some of these things, just like as an interest for her too. Well, how do we deal with this? How do we deal with that? She’s a curious kid.”

Special thanks to Lamar and Kristina for allowing us to share their family’s personal journey with ALS. Over the next few months, we’ll be sharing more about their everyday life living with this disease, and we hope you will follow along and share with your family and friends.

Your gift to advance the search for effective treatments and cures provides help and hope to people living with ALS and their families.