Sunday, March 16, 2008

Glenda's letter

I am 36 years old, a wife, mother, sister and daughter…I am proud of my role in each of these titles, however the role in which I am the proudest is as a “love-giver” to my husband, Ken. When we first met we had the typical dating relationship, as typical as any single parent’s dating relationship can be. Then came the day I will never forget sitting in the parking lot, with the phone in my hand wondering “what is ALS, who is Lou Gehrig, and how can this strong, vibrant man have a disease that will possibly end his life in 2 to 5 years”.

We were young (34 and 38) and we should be able to grow old together, making years of sweet memories with each other. In July 2007, just 8 months after Ken’s diagnosis, I am proud to say I became his wife and life partner. We now have a beautifully blended family in which we share our lives, lots of love and laughter, and a passion for raising awareness for ALS to find a cure. We struggle just as every family struggles with the day to day living with ALS.

Our story is not unique to the fact that Ken is no longer able to do the everyday things that we so often take for granted such as feeding ourselves or even scratching an itch. He has taught me to appreciate every single day for God does not guarantee tomorrow and I now cherish each tender touch that he sometimes has to struggle to give. He has developed the common “ALS accent” which makes it difficult for him to be understood, yet I am thankful for every “I love you” he showers me with, knowing ALS is slowly taking his speech. I am Ken’s caregiver (love-giver) 24/7 yet what I receive is far more than what I give. Spending every moment with my amazing husband can never be enough.

What makes Ken so special is his positive attitude and determination. He is a veteran and spent ten years as a firefighter/paramedic in Florida before accepting his dream job as a Safety Engineer at Kennedy Space Center. He has spent the majority of his adult life protecting and serving his community. It is no coincidence that he has dedicated himself to raising awareness and fighting for his fellow PALS (People with ALS). That is the motivation behind the Rolling Over ALS Tour and I am proud to say my husband will be “Rolling Over ALS” beginning April 19, 2008. More information is available at

One of the things that ALS robs from its victims is their ability to speak, however they still have a message that needs to be heard. The odds for any one person to die from ALS are about equal to the odds of them drowning, it is about time we get out the life preservers and find a cure for this horrible disease by working together and spreading the word about ALS. Please help give back the voice they have lost.