Cyndi Suter

In about mid-2007, my mom, Cyndi Suter, began to experience bouts of foot drop.  She saw a few doctors in Redding where she lived, but none were able to provide any explanation.  However, because my mom had a disc issue in her spine and a compressed nerve, the logical assumption was that the nerve was causing the foot drop.  It is important to keep in mind that my mom was a nurse and not afraid to question a doctor's opinion. She next saw a couple of back specialists in Redding, who were unable to draw any connection to the issue in her spine and her foot drop.  In fact, it was one of these doctors who first mentioned to her the possibility of ALS.

I recall clearly the conversation I had with my mom on the phone when she relayed to me that doctor's suggestion.  At that time, I had a friend who was doing research for Dr. Robert Miller at CPMC.  As I was just learning what ALS was, I was horrified to hear any mention of that disease in the same sentence as my mom.  Despite the pit in my stomach, my initial response was to cling to the hope that the doctors she had seen were just wrong.  We knew for certain that she had a disc issue and a compressed nerve.  The logical explanation was that there had to be a back issue and that these doctors were missing it.

At my urging, I had my mom come down to San Francisco to meet with two back specialists here. Unfortunately, despite a battery of tests, neither one of those doctors were able to draw a connection between mom's back issues and the foot drop.  I went with my mom to the second of those appointments where we were told for about the fourth time that there was no connection between her back and the foot drop. Afterwards, I drove mom to a BART station where she had parked her car, as she hated driving in the city. I was planning to go to work and she would continue on her way home back to Redding.  But as I was pulling in to the parking lot, my mom began to cry uncontrolably.  That was probably the most difficult moment I had ever endured in my life. Not only was it incredibly painful just to see my mom break down like that, but that was also the moment that I knew she had ALS.

Her local neurologist referred her to Stanford to meet with Dr. Yuen So in April 2008.  After a day of tests with his team, the diagnosis of ALS was made offical.  Her symptoms progressed fairly rapidly from that point forward.  By May, she was no longer able to drive and was using a walker. By Thanksgiving, she was in a wheelchair. and it felt like we were losing one ability after another.  It was a struggle to keep on top of the changes. This is where The ALS Association was a great help to us.  From access to equipment, to just lending a sympathetic ear, they made the process almost tolerable for us.

I will say that my family was lucky for two reasons.  First, my mom did not lose her ability to speak until the very end.  As such, she was always able to communicate and participate fully in conversations and could engage with her friends and family just like she always had. The importance of this cannot be overstated. The second came from my mom's character.  To be certain, there were personal challenges for this woman, who had made a life caring for others, now in the position of having to be cared for.  However, I never once saw the slightest bit of anger, resentment or self-pity from mom - ever. For her, it was never "I can't do X anymore."  On the contrary, it was always "I can still do Y."  That perspective was critical in making the process bearable, not only for herself, but for those of us who cared for her. 

I will never forget the last real conversation I had with my mom.  I told her that I hated that this disease and that it had happened to her.  I told her that watching her endure the disease with such grace was the most remarkable experience of my life.  I knew that the brave face my mom had throughout the process was for my benefit and, believe me, I did benefit.  While I lost my mom - and nothing will ever make up for that - I learned the most valuable lessons in life.  To focus my energies only those things that I can control; and to uncover a lesson from every experience I have, apply it, and grow.