Jim’s Story

I was diagnosed with ALS in September 2012, but I first started having problems in 2009 and had a good idea of what it was.  When it comes to facing facts our family has experience with this disease so the muscle twitching and weakness in my left arm threw me for a loop.  When I first told Kathy, my wife, about the signs, she thought I was mistaken.  She was convinced it was from a broken neck I suffered in a car accident 10 years earlier.  Quietly, I started to get answers from the VA, until I got down to the final test.  Then I told her what was going on.  Together we listened to the neurologist, hoping Kathy was right and I was wrong.  That was not the case.

We struggled with how we were going to tell our three children, and there were a lot of questions and emotions.  They were aware of what my journey would look like and how it would affect their futures.  Our family began a new era… one that included ALS.

Being a US Marine for 8 years and running our own business for over 30 years I am used to being in control of what is going on.  Now ALS has control.  I prayed that it would move slowly so that I would have time to prepare our business and my personal mentality for the new normal.

I am a private person and I had to let go of my pride and inhibitions as I lost use of my arms and legs, and now my voice is almost gone.  Caregivers, wheelchairs, and assistive equipment are now a part of my daily life.  My caregivers assist with personal care and comfort, and despite my original lack of acceptance, they are now one of our greatest blessings. 

We have had to make a lot of changes, starting with remodeling our home to accommodate mobility and care devices.  In addition to this, Kathy has made changes in my diet and tries to keep me away from stress.  ALS gave me a sense of urgency to start doing the things we all tend to put off…things like spending more time with Kathy, my children, and our Grandchildren. I also take more time to enjoy my favorite hobbies…hunting and fishing.   I have made peace with the idea that I will leave this earth before my time, and I know God has a room in his house for me.  

ALS will continue to be our family’s nemesis as we go forward, but our family is the strongest I know, and I would endure ALS all over again rather than be part of any other family.  Our current efforts to research and find a cure for our deformity are aimed directly at saving our children, and we have dubbed these efforts as NextGen ALS.  God willing, the efforts we are making today will save them from this cruel disease in the future.