Over the past few months, we have shared numerous stories about the Woody family, providing a brief glimpse into their everyday life with ALS from many different perspectives. From Lamar and his wife Kristina and their nine-year-old daughter Natalie, to friends, caregivers and members of their community, each had a unique story to tell about how they have been personally impacted by this disease.
As 2022 comes to an end, we wanted to close with a personal note from Lamar, describing the true impact ALS has had on him and his family in his own words.
When I was diagnosed with ALS in 2018, my wife Kristina and I knew we were in for the fight of our lives. But I don’t think we were truly prepared for the devastating impact it would have on our family.
The doctors do their best to prepare you for what’s to come physically as the disease takes hold. But hearing what’s to come vs. living it every day are two different things. I started out healthy, active and physically fit. Now, after four years, I’ve lost 40 pounds, have lost much of my ability to walk and grip objects, and I sometimes struggle just to eat a meal or drink a glass of water without choking.
Because of my physical state, I had to quit working and Kristina and I had to switch roles entirely. She had to go back to work as a traveling nurse to help make ends meet. We tell people we’ve had to go into “survival mode.” We’ve had to downsize significantly and have been forced to move three times. We even had to sell our vehicles just to help stay afloat.
The emotional toll it’s taking affects all of us differently. I do my best to try to stay positive and strong for Kristina and our daughter Natalie, but it pains me to see their reactions on my “bad” days. Watching as Kristina struggles to work full time AND take care of all of us is becoming increasingly more difficult. And knowing Natalie has to endure the stress of ALS at the age of nine is almost unbearable.
Through it all we’re doing our best to just live our lives the best we can each day. We’ve learned the hard way not to take anything for granted, and we remain steadfast in our faith, hanging on to hope for our future. What else can you do when you’re living with ALS?
I once was asked what I would say to someone who wanted to donate to help fight ALS. I thought a lot about it, and I think I would say, "You give light where there has been utter darkness. Life is meant to be lived and your giving brings more initiative to our lives. We are forever grateful. Thank you all."
We will continue to follow the Woody family’s journey in 2023, as they are eager to continue spreading awareness of ALS. And if you ask them why they want to be so open about their experiences, Kristina will tell you, “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.”
If you would like to read more from the blog series about the Woody family, you can find them here.
Special thanks to Lamar and Kristina and all of their friends and family who participated in sharing their personal thoughts with us. To learn more about how you can help and 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.
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