Cathy’s Story

ALS is a cruel disease, only to be out done by Familial ALS.  When we were told in 2000 that we were a familial (hereditary) family for ALS it was a gut punch.  We had just lost our Dad to ALS, now each one of us had a 50/50 chance of traveling the same agonizing road.  Hearing “I have ALS” repeatedly in our family has been heart wrenching, but pales in comparison to what that will feel like coming from one of our children.   We are supposed to protect them, not give them incurable diseases. 

When I was diagnosed in 2019, I did not go through denial or need second opinions.  I did not shed tears or say, “why me”?  I did not need anyone to explain what was in store.  My husband Tim and I knew priorities had changed and that my retirement, only 3 days away, would have a unique twist.  Acceptance was a breeze compared to the agony and deep guilt I felt while telling my children I had ALS, because I had just delivered to them that same 50/50 gut punch.   

Each person handles ALS in their own way.  I will not allow this disease to take control of my life.  My husband Tim and I got busy living instead of dying.  We went on a pilgrimage to Italy in 2019.  Now that Covid is winding down we are going to Alaska for three weeks.  In late summer we will be taking a boat on the Rhine from Switzerland to Amsterdam.  I am going on my last boundary water canoe trips this year with my sister.  If I am able, I will continue to visit Lac Vieux Desert for our annual week of “Weber Fish Camp” each summer. 

My challenges do not mean that I am limited, and I refuse to list my losses or wave the white flag.  Life has given me gifts that ALS can never touch:  my love for God, family and friends, a positive attitude, determination to be the best that I can be, the will to fight, the ability to live each day to the fullest, and the knowledge and understanding that I can make a difference…just as I am. I get to choose how I feel about ALS.  I want to wake each day feeling positive about what I CAN do despite this disease.

I have chosen to help spearhead our family’s effort to stop our familial ALS before it has a chance to affect our next generation.  In our family alone that is 18 children at risk in the next generation.  I am dedicated to using my gifts to co-chair family efforts to find a therapy and eventually a cure.  This labor of love takes time and energy I may lack, but I will spend my last breath in pursuit of answers to save our children!   My prayer is that our efforts will help put an end to all ALS.