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.
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.”
“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.”
Since Lamar is unable to work, he set out on a new goal to finish his degree and has returned to Auburn University as a full-time student majoring in interdisciplinary studies. Determined to learn all he can about ALS and neurodegenerative diseases, as well as public policy and advocacy, he plans to use his many talents to make a difference for the ALS community. He is combining his passion for art, music and knowledge to explore the science behind how music and art and self-expression can be a part of making ALS livable.
When asked why they wanted to share their story with the ALS community, Kristina said, “we don’t consider our story more significant or special than anyone else’s. We're just a family that lives like everybody else, only we’re living with ALS. And while everyone’s journey with this disease is going to look different, we think it’s important to share our stories and help spread awareness of what it’s like to live with ALS, and why it’s important to help.”
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 what their everyday life living with this disease, and we hope you will follow along and share with your family and friends.
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, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog
My 63 year old sister has ALS. She wqas diagnosed just before the pandemic. It has been aggressive and she is now paralyzed from the neck down. Before she got worse, when she was able to type with just only one finger, she wrote a book about her ALS journey called "Gracefully Broken" before entering hospice stage. This book is a great read for families dealing with ALS. How can I have my sister's amazing story as a spotlight story?
Hi Monica, so sorry to hear your sister is living with this disease. You can reach out to us at [email protected].
My mother had it, she passed away five years ago. I would love to read this book. I was her primary caregiver, and I’ve blocked out the disease for a few years after she died, it was all so traumatizing. But now I would like to understand it from the victims point of view. Thank you.
So sorry about your amazing sister. I have been searching and am unable to find her book ( paperback). Everyone seems to be out of it. Do you know where I might be able to buy it? Do you know if Amazon will be getting more copies or is it out of print? Thank you.
I try to find out what's happening to my body for 3 yrs. Finally in 2022 I was diagnosed with ALS. AND it has speed fast. Now I not able to do anything.. other than text.
So sorry, Blanca. My heart goes out to you.
Sending you prayers and peace. It’s so hard. My mother had it.
My mom passed away 11 years ago from ALS. She was diagnosed at 37. I was 8 and my sister was 4. She lived with it for 10 years. She fought every day to spend more time with us because she knew she wouldn’t see us grow up. At that time, she was given 18 months - 2 years to live. I just turned 30 and obviously I am nervous about what this disease could do to me…I don’t have children (yet) and we don’t really know if it is genetic or not…she was told it wasn’t but that was over 20 years ago now. Sometimes I wonder if I should get tested or if I should even have children. It was the hardest thing…watching ALS strip my mom’s independence away. By the end she couldn’t even talk. I miss her every day.
Patricia, so sorry for your loss. If you'd like to learn more about genetic testing for ALS, you can read about it here: https://www.als.org/understanding-als/who-gets-als/genetic-testing
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