ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-414-831-6879.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
1800 North Prospect Avenue, Suite 4B
Milwaukee, WI 53202

ALS Worldwide
November 15, 2017

Susan Spencer-Wendel

I Was Alive. I Had A Year. Living With ALS, Till The End.

When the late Susan Spencer-Wendel received her ALS diagnosis in 2011, she made up her mind to live her remaining days as best she could, travel to the places she dreamed of going and complete a long goodbye to those she loved.

A journalist for over twenty years, Spencer-Wendel decided to write a book about her experience — all 89,000 words of it — on an iPhone, USING ONLY HER RIGHT THUMB! It took three months for her to complete “Until I Say Good-Bye”, her heartbreaking and inspirational account that chronicles how she faced her diagnosis with the determination to live her life to the fullest with humor, courage, and love.

She said, "I had watched Lou Gehrig’s farewell speech of 1939 a number of times. The one where he declared himself the luckiest man on the face of the earth, even after “catching a bad break.” Even after being diagnosed with a disease that would rob him of his talent, and then his life.

I had wondered if that was true. Did he really feel that way? Or was it a grand thought that only came to Gehrig surrounded by tens of thousands of applauding fans?

And then it came to me too, alone, seated on a parking barrier outside Burger King. No, not a muzzy moment, but my life in focus, tack sharp.
Forty-four years of perfect health. I had rarely even had a head cold or tooth cavity. Forty-four years, and the sickest I had ever been was after I ate a bad chicken sandwich in South America.

I had three easy pregnancies, each producing a rosy, pudgy babe. Three breezy C-sections where I was walking the next day. I had known abiding love; traveled the world; married a great partner; worked a job I adored. I knew where I came from.

Adopted as an infant by dutiful parents, I had met my birth mother at age forty and the family of my birth father soon after. I knew my ALS was not inherited from them. I knew my rosy, pudgy babes need not fear my fate.

I was alive. I had a year. Maybe more, but I knew I had one more year at least of good health. I determined, right there in the Burger King parking lot, to spend it wisely. To take the trips I’d longed to take and experience each pleasure I’d longed for as well. To organize what I was leaving behind.

To plant a garden of memories for my family to bloom in their futures. Lou Gehrig was an athlete. ALS took his talent immediately. But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent.

I had time to express myself. To build a place of my own with comfy chairs, where I could think and write and sit with friends. Where I could wander through my own garden of memories and write them down.
A wandering that became, beyond my every fantasy, this book. A book not about illness and despair, but a record of my final wonderful year. A gift to my children so they would understand who I was and learn the way to live after tragedy:
With joy. And without fear.

"If Lou Gehrig could feel lucky, then so could I. So should I."

In her book, Susan celebrates life, but also accepts death with grace and dignity, and shows the effort we must all undertake to make the most of the time we have and show the people that we love and care about how very much they mean to us. Susan Spencer-Wendel died from ALS in June of 2014, but her uplifting message lives on.

Watch Susan's video. Living with Joy. visit: