#VoiceYourLove - The ALS Association
Voice Your Love
for ALS Heroes

A site to honor the lives of those we have lost and those still fighting.

ALS Has Not Robbed Me of My Optimism and Hope

Chrystie L. St. Augustine, Florida

I was diagnosed with ALS one year ago, and it has been a roller coaster ride ever since. At 42-years old, it was not what I expected to hear, but you quickly learn that life does not always play out in a way one expects. My speech was the first thing affected, so I adapted and became proactive. First, I changed my name to Sam so people could understand me. Talking on the phone was out, so text plans were added and utilized to help me stay in touch. I started a blog to keep my family and friends informed on my progress and to share what it is like to live with ALS. My family and I learned sign language to keep the lines of everyday communication open. To raise money and ALS awareness, we put together a bi-coastal team for the Walk to Defeat ALS and raised over $16,000. Unfortunately, over the past few months I have been losing strength and dexterity in my arms and hands which has depleted my ability to do many basic things, including sign. Now I am looking into eye-tracking technology to help me stay connected to the world and continue to communicate. Even with all the physical changes, I am still very much me...I still think like me, talk like me, laugh like me, tell dumb jokes like me, debate (argue) like me...it is just all going on in my mind and the slow translation to sharing it with others is the hardest part for me so far. ALS is devastating, to me and my family, to everyone whose lives are touched by it. However, I am surrounded by love and most days I laugh and feel the joy for all that I have. There are some days where I just can't help myself and I cry over the losses I've suffered so far and the ones still to come, but ALS has not robbed me of my optimism and hope. I am hopeful that better, more effective treatments for this disease will be found and brought to market soon to benefit those of us living with ALS today and better still, I hope a cure will be found in my lifetime so that we can eradicate ALS for all future generations!