Finding Joy on the Road Ahead: Linda Woods’ Journey with ALS

May is ALS Awareness Month, and we’re honored to share the inspiring story of Linda Woods. A woman living with ALS whose resilience, humor, and perspective shine through even in the most challenging moments. Linda graciously answered a few questions about her ALS journey for ALS United Rocky Mountain. Her responses are raw, uplifting, and full of wisdom, offering a powerful look into life with ALS.

Date of Diagnosis: June 2021

1) What is one piece of advice or a lesson you’ve learned on your journey with ALS that you’d like to share with others?

“Be willing to go with the flow! As my ALS progresses, I have learned that an unexpected fork in the road can bring new challenges and more losses. I choose to face those challenges head-on and find ways to go around them. As I lose the ability to do certain things, I push beyond to find something new I CAN do or want to try. Dwelling on my losses can only lead to depression and anger. I choose to not take the depression/anger route but to find joy/happiness on the road ahead!

EXAMPLES: I have lost my ability to play my musical instruments (violin, guitar, drums, banjo, piano, etc.), so I now choose to sing more — LOUD AND PROUD! I can no longer kayak, swim laps, or garden, but I CAN go to Staunton State Park and take a track chair on a trail, and go fishing, enjoy the wildlife, and see the beautiful landscape surrounding me.”

2) How have your family, friends, or community supported and uplifted you, and what does that support mean to you?

“Family: My sister, Mau Mau, has been my biggest support emotionally, financially (helping where she can, giving really good financial advice, coming to be with me during bumps in the road), and just being a good listener and giving life-ahead advice when needed. I have a solid core of good friends who help with everything from going out for a meal, trying to teach me to crochet (not so easy!!), coming over for tea and a chat, and just being super good listeners. Finally, my church (Parker Evangelical Presbyterian Church– PEPC “pronounced as Pepsi”) has been my solid base to stand on. The Handyman’s Group at PEPC has helped to make my house a lot more friendly for my ALS– such an amazing, selfless bunch of guys. I am able to drive my motorized chair from my house to church for services when the weather allows. The congregation is amazing, and everyone from little kids to people my age comes to talk with me and let me know they are praying for me. Very uplifting!! This kind of support– friends, family, church– keeps me going and helps me to keep my positive outlook on life. I should also give credit to my four kitty cats– Sheldon, Leonard, Daisy, and Mulan– a never-ending source of entertainment and love.”

3) What is one misconception about ALS that you wish more people understood?

“I want people to understand that at THIS time, it is not curable– it results in death and nothing YET can change that– research is critical in order to help people with this disease. IT IS NOT CONTAGIOUS, so despite having to watch a family member or friend deteriorate in their ability to walk, talk, breathe, etc., please be with them and know that your company means a lot. When speech is lost, BE PATIENT–don’t put words in their mouths or try to get them to hurry with responses– communication devices take a little time to give answers back. OUR BRAINS ARE INTACT, so don’t assume that when we get to the point where we can no longer talk, our brains are not working. That is the one thing that doesn’t go away, and our brain gets trapped in a body that no longer works. I can let you know that typing all of this was hard, especially hitting the wrong keys constantly on my keyboard of my laptop and having to go back and correct mistakes! Oh well, one more thing to work on improving!”

Linda’s journey is a remarkable testament to finding light, love, and laughter even in the face of immense challenges. Her willingness to embrace change, seek out new joys, and lean on her community offers inspiration not just to those living with ALS, but to anyone navigating unexpected turns in life. Through her words, Linda reminds us of the power of resilience, the importance of compassionate support, and the need for continued awareness and research. As we honor her courage and spirit, may we all strive to find our own moments of joy on the road ahead—no matter where it leads.