As many of you know, I live with a neurological condition called Primary Lateral Sclerosis (PLS) — a rare, slowly progressing disorder that affects the motor neurons controlling movement. My particular form is bulbar onset PLS, which first appeared in the muscles that manage speech, swallowing, and facial expression.
Even on good days, many people can no longer understand my speech. When I’m tired or stressed, my words become even less intelligible. The physical feeling is as though my lips, tongue, and throat are present and sensitive, but they simply won’t move the way I ask them to, as though they’re pushing through mud or cement. My smile is partial. I can’t quite form my lips into a pucker, and sometimes saliva collects in my mouth without my realizing it.
Because of this, my spoken voice now carries a sound that can be startling to someone hearing it for the first time. Sometimes people make faces when I speak. Italians often assume I’m speaking English when I’m actually speaking Italian. Sometimes people think I’m deaf and respond with slow gestures or exaggerated speech. My hearing, in fact, is fine. In fact, everything is fine – except speaking, singing, swallowing, and eating. I go about my day just like anyone else. This year I walked the Camino de Santiago, my fifth time since 2008, and I’m planning a hiking excursion late this week in the mountains. I play Padel, do water aerobics, and average 15,000 steps a day around town.
To stay connected, I’ve learned to rely on technology. When I meet people, I often use an AAC (Augmentative and Alternative Communication) app that allows them to read what I type on my phone screen. In small groups, I connect my phone to a Bluetooth speaker I wear around my neck so my words can be heard clearly. For large gatherings, like when I speak before an audience, I record my message in advance and play it as part of a video presentation, taking questions afterward through the AAC app or with my natural voice if I think I can be understood.
I feel deeply the loss of spontaneity that comes with no longer being able to speak freely. Conversation used to flow so easily — in the pulpit, on the trail, around the dinner table. Now, it takes preparation and patience. And yet, I’m discovering new ways to engage. When someone is willing to listen and pause, I can still join in by showing them my phone screen so they can read or hear my contribution. It’s slower, but surprisingly satisfying.
I’m considering learning American Sign Language, though since sign languages differ across countries it’s not a real solution. It takes years to become good at ASL, so maybe it will be most important for my family at home.
The physical realities of PLS can be unpredictable. When I play the piano, for example, I’ve learned that concentration can interrupt the rhythm of swallowing. My piano teacher used to say, “Don’t forget to breathe when you’re playing!” I’ve learned to breathe — but now, I play with a napkin in my lap to catch the saliva that overflows when I focus too intently.
Living with PLS brings moments of grief — especially remembering the decades I spent preaching, teaching, and advocating through spoken words. I get frustrated when conversations can’t slow down enough for my AAC words to catch up. Yet, the pilgrim in me knows this too is a journey — one that calls for acceptance, adaptation, and faith. The Camino teaches us that the path ahead is always uncertain, but it’s ok to trust yourself to the trail. My friends have been amazing. To a person they’ve continued to include me in all the things we’ve ever done together.
The long-term prognosis is gradual loss of the motor neurons that control speech and swallowing. For some, this can eventually require medical interventions like a tracheostomy or feeding tube. I remain hopeful that these are years away — and that the progression will stay confined to the bulbar region.
In the meantime, I’m grateful: for technology that gives me voice, for the kindness of people who wait and listen, and for the enduring companionship of those who continue to walk beside me — both on the trail and in life.
Thanks for a lovely, honest message. Buon proseguimento!
Thanks, Nick.
Sandy, I have followed your posts and hoped someday to walk one of your long distance walks. My husband and I thoroughly enjoyed watching the PBS series when you bicycled the
California missions. We recently left our home in the Pacific Northwest in order to travel simply, enjoy long walks and escape some of the awful politics in the states. Your words are always a positive note in our day. Sending blessings
Thanks so much, Eileen.
Dear Sandy—So appreciate your love for life and your willingness to share your experience and testimony! This is how I met you in 2012 working on the marriage equality campaign in WA! You were then as you are now:joyfully engaged in living and working for others to have the rights to do the same! May you know the difference your energy and testimony have made!💝
I remember you well . . . thanks for these kind words. xoxoxo
Thank you for this, Sandy. It helps my understanding of what you are facing every day. I’m not always thrilled with technology, but for you, I’m grateful. Sending you prayers and love.
Thanks, Donene. Best to you.
Thank you for the update. Your journey reminds me of the journey of fellow Washingtonian, Steve Gleason who continues to battle ALS. Like you, Steve continues to deal with his condition with grace and courage.
I (and many others) appreciate the example you set, living your life to the best, dealing with obstacles but not letting them deter you from your goals.
Thanks, David.
Thank you for sharing this, Sandy. You’re truly an inspiration! Your book and writing continue to help and guide me—and thousands more—on our pilgrimages. It’s such an eye-opener. Many people take for granted what we have and our health, and many of us don’t know how to react when we encounter people different from us. This also serves as a beautiful reminder that we should always be compassionate and understanding. I’ll keep you in my prayers.
Thanks, Willen. That means a lot.
Sandy, your message is humbling and so inspiring. Your courage, sharing life experiences, brings new meaning of being grateful. Knowing you is a gift. Thank you for helping me put real life in perspective. 💕
So great to see you in August. We’ll try to get something together with the 6 of us in SeaTown around the holidays. Hugs to you!
Hi Sandy, you are very courageous. You assisted us to walk the Way of St Francis in 2016 (South) and 2017 (North) by your written guide and email advice. We have just arrived in Rome, having again walked from Assisi. We are from Australia, and in our mid 70’s and we tell others that it was your guidance and encouragement that introduced us to this amazing pilgrimage. We wish you every blessing as you go forward, living the challenges ahead.
Thank you for these words! And congratulations!
Sandy, thank you for the update including the effects other than your speech. I feel sad thinking that there could be a day when you cannot give us your beautiful smile, so I hope and pray that day never comes!
I currently coordinate the communication for the American Pilgrims group in Seattle. If you are ever in the area and want to come to what we call our “Beer Chats”, please let me know! We will schedule something at your convenience.
What a great phrase, “When someone is willing to listen and pause, I can still join in by showing them my phone screen so they can read or hear my contribution. It’s slower, but surprisingly satisfying.” Let’s do this! Wishing for you many, daily “streams in the desert” of this very bad affliction. love you Sandy
I love you too, Mike. Looking forward to seeing you.
Love you buddy!
I was so saddened to hear of your medical condition and the effect it has had on your verbal communication. I have experienced six and seven week periods of laryngitis over the years, which helps me relate more easily than I could otherwise. Still, I knew my condition was temporary. Yet yours is, too, Sandy. We will hear your eloquent voice again in heaven! Isn’t that blissful to ponder?! Some days I can hardly wait! Meanwhile, you are continuing to inspire others with your faith, courage, and leadership. God is with you! Love, Suzie
Thanks Suzie. Great to see you in August!
I appreciate your openness about what this loss means to you. It takes courage and patience to meet new people and explain over and over again that you are still you, but with communication issues. You’re teaching all of us to accept our own limitations and to be patient with those whose struggles we might not recognize. Thanks for the lessons.
Thanks so much, Bev. I enjoy see you on FB. It’s your smile!
What an eloquent and vulnerable sharing. I have such great respect and affection for you. You are the definition of courage, grace, heart and more. It was an honor to walk with you in Italy and I sure do hope we walk together again. With ior without talking❤️
Hugs to you, Nancy!
Always blessed to be hearing, reading, feeling your words, Sandy. 💕
Thanks so much!
Nothing in God’s world happens by mistake. You are a living, breathing, loving soul that is leading many of us to a higher place of spiritual belief! Your eyes speak volumes ❤️
Thanks.
Thank you Sandy. Admiring you from afar in Aus. You are often in our thoughts on our walks both short & long. You’re so inspiring and ever welcoming to fellow pilgrims on the journey of life. Bless you for what you do & what you represent to all who walk with you.
Thanks so much you two!
I have PLS – diagnosed 2023 – starting to get the bulbar symptoms- been procrastinating about adapting- your post hit me – thanks- I need to get busy banking my voice and preparing- Thanks for your positive energy/ God Bless You
I wish you the best, Chris. Having my voice in my AAC device is huge for me. It makes me smile every time I hear it. If you haven’t checked out ElevenLabs yet, you should right away. My AI voice clone is free thanks to my diagnosis. I believe they can make a voice clone with less than ten minutes of high-quality recording of your voice, so you want to get it while you still have your natural voice. Hang in there!
Sandy,
Thank you for sharing this. I do miss our times working together in Washington and in Guatemala. Your voice back then helped to shape how I address challenges… I wish you continued success as you navigate this journey.
I remember our days together very fondly. All the best to you, my friend.
So much grace in the face of adversity. I doubt I’d have the same reaction I’m ashamed to say.
Thank you.