Cindy’s Story

After watching my Dad die in 1999 of ALS, and then enduring a messy divorce in 2000 I thought life could not get more devastating.  Those two events taught me one thing; you can trust in God to get you through anything!  I had two teenage children and two in college and I couldn’t help wondering how I would ever make ends meet while supporting myself and my four children.  Little did I know my biggest challenge was still ahead.  In 2004 I remarried to a wonderful man with 4 children of his own.  So now with 8 children between us we were ready to take on whatever life could throw our way.  I told Bob, in advance, that our ALS was hereditary, and that I had a 50/50 chance of becoming symptomatic.  I gave him the chance to walk away, but he was willing to take the chance with me.  We are still married to this day, and stronger than ever! 

In February of 2012 I was reading and looked down and saw muscles in my left arm jumping.  Immediately I thought, “Oh my God, what the heck”.  I tried denial, but in August of 2012 I was diagnosed with ALS.  My children were devastated.  ALS now affected our family very personally. 

Now I had a choice…fight or deny.  I chose to fight.  I was reading a newspaper article about a man with ALS from my area.  I contacted Jim and in talking to him I realized that he was a distant cousin and had the same type of ALS.  We pooled our resources and started a support group in Minocqua Wisconsin, where I lived.  This group provided resource to Northern Wisconsin that formerly did not exist.  It made me feel like we were the lucky ones, because our ALS was slow moving, giving us longevity.  Jim and I buried a lot of great friends we met through that support group who had faster moving forms of ALS.

Through all of this, Bob has been by my side.  He has been my caregiver and my biggest cheerleader.  Caregiving for an ALS patient is not easy, especially once I lost the use of my arms.  At that point there was very little I could continue to do for myself.  To make it easier on Bob, we sold our lake home in Minocqua and moved closer to our children and families.  Now I feel that every day is a gift.  My quality of life is deteriorating, but I still try to find something positive about each day.  I pray to God every day that this terrible disease will not be passed to my children or my 4 grandchildren.  I pray that together, through our struggles, tears, and small triumphs we can beat ALS.  These things I pray, Amen.