Friday, March 28, 2014

Why I Walk...

Walk to Defeat ALS 2013
I'm participating in the Walk to Defeat ALS on April 12th and I would really appreciate your support!  Your tax deductible donation can easily be made by clicking on one of the two Walk to Defeat ALS links on the right column of this blog today. 
One of the Walk slogans is "Why do we walk?" and my reasons are many yet can be summed up with "I am walking because ALS sucks and no one else, no other family, should ever have to suffer with it.  We need a world without ALS!"  

In the past year, ALS has taken its toll and a lot has changed for me.  On March 10, 2013 I wrote a post about some of the ways having ALS had allowed me to feel a new sense of freedom.  A year later, having ALS feels like being in a bad horror movie that only gets worse.

• Last March I was able to use sign language to communicate with my family and much of my community.  Today I cannot sign at all or move any of my fingers individually (which also makes typing very difficult) and I have lost almost all ability to communicate.

• Last March I was still able to drive safely with no issues or concerns.  Today I have a hard time just getting in and out of the car, I cannot open a car door from the inside or out, and I cannot buckle or unbuckle my own seat belt.

• Last March I enjoyed eating out and was still able to eat a pretty wide range of foods, even foods new to me like sushi.  Today I do not like to eat in public or even at home with anyone other than my husband and son there.  The foods I can eat now are much more limited and the act of getting food to my mouth is exhausting because of the extreme weakness in my hands, wrists, and arms.

• Last March I was still living independently with the abilities to cook, do most household chores, go places on my own including shopping, sign classes, the pottery studio, movies, the beach, walks with my dog, etc.  Today I cannot get farther than my driveway on my own.  I cannot get around in the world on my own because I cannot move my manual wheelchair on my own.  I cannot walk much or with any feeling of security...and I cannot communicate.

• Last March I was able to walk up and down stairs which allowed me to walk up to Las Olas Massage and Wellness on the second floor for weekly massages that helped with my muscle pain. Today I can barely make it up or down a single step and I can no longer reach the massage center. Luckily, Crystal visits my home every other week to massage my arms and neck which is such an amazing gift!

• Last March I weighed about 155-160 lbs.  Today I weigh 117 lbs and barely recognize myself.

• Last March I could shower on my own, shave my own legs, dress myself, and I could make my own schedule.  Today I cannot do any of these things on my own and, therefore, I must follow the schedule of others.

• Last March I was able to adjust to the changes ALS was causing in me and I found ways to compensate so that I could still feel mostly like a version of myself, the me living with the challenges of ALS.  Today, I cannot do most of the things I like or want to do and because ALS has taken so much from me, my family is suffering too, unable to live their best lives. Though he does a noble job of it, my husband was not cut out to be a stay-at-home 24/7 caregiver...and I am not cut out to be dependent or to need this level of care.

These are some of the realities, for me, of having ALS.  This is why I am walking and why I am asking for your support.  You can make a donation today by clicking on one of the two Walk to Defeat ALS links on the right column of this blog, no amount is too small or too large.  Together we can help find a cure and rid the world of ALS!


  1. Chrystie/Sam. your story resonates so very much with me. I was diagnosed with ALS July 31, 2013, and at this point am still somewhat independent. It's hard to read your thoughts as your independence has lessened, but know that you are not alone, and that I can understand all you are facing as I too face it. As a friend with advanced ALS says, "head up and heart strong."

    1. Thank you, Pam, and may your independence continue for a long time! Keep smiling when you can :)