1 Introduction

I am living with Amyotrophic Lateral Sclerosis (ALS). ALS is a fatal progressive neurological disease in which you lose your ability to walk, talk, swallow and eventually breathe. Currently this rare disease has no treatment, and the cause is still unknown. Your life expectancy after being diagnosed with ALS is normally 2 – 5 years.

ALS is also called Lou Gehrig’s disease after the famed New York Yankee major league baseball player who was diagnosed with it. In other countries, ALS is often referred to as motor neuron disease.

This is a story about the first 13 years of my ALS journey. It is part memoir and part field guide. Each person’s ALS experience is unique, as the disease affects each one of us differently. ALS progresses very rapidly for some people and more slowly for others, like me. Some parts of your body undergo major changes while other functions change minimally. For example, some can speak, but have difficulty eating. Others have strong legs, but experience footdrop. Still others experience great weakness throughout their body.

To date, my greatest limitations have been severe neck drop, loss of balance and upper body weakness. When not seated, I typically use a neck brace and a rollator-type walker to help maintain my balance.

In spite of many limitations, I have been fortunate to have been able to maintain a high quality of life for much longer than most others. I believe this is due to my slower form of ALS, my excellent care and my proactive effort from the start.

I have approached ALS as a journey, not as a battle. Acceptance, gratefulness, hope and thoughtful action have been my guiding principles throughout this journey. My focus has been on hope and possibilities instead of fear and despair. This has liberated my creativity and courage. I look at my situation as doom and bloom, instead of doom and gloom.

ALS is truly frightening and heartbreaking, but that doesn’t mean it has to take away your hope and spirit. My goal has been for personal growth and to make a difference. I still have dreams, just different ones.

Remember: it is not how many breaths you take, but rather how many times you feel breathless.

I am sharing my experiences with the hope that they will help others cope with this terrible disease. Since there is currently no treatment for ALS, I have tried many things focusing on healing and wellness that I will share with you. My goal has been to describe the essence of my journey. There are, of course, other approaches and each of us must deal with our personal circumstances and mortality the best way we can.