Skip to main content

Living with KD

Personal Stories

Roger Stoufer, Born 1939 - MN, USA

Roger Stoufer, Born 1939 - MN, USA

Diagnosis by Roger Stoufer (2007)

I Cried Alone!

I didn’t want to share my horrible news with anyone. Somehow, sharing gave it credibility.

When I did tell my wife she gently encouraged me to seek the strength I would need by informing our pastors, Dean Wolf and Pam Serdar, of my ALS diagnosis. I was hesitant to do this as the diagnosis was preliminary and subject to a second opinion. However, our time with them proved to be invaluable as my respect for Dean and Pam allowed me to bare my soul to them.  While we conversed my mind jumped from pictures of myself, disabled and depressed, to visions of my wife, Beverly, bereaved and overwhelmed with caring for me. This was not what I had promised her twenty-seven years ago when we were courting and planning our future together..

Although I didn't share this then, at  no point in time was I concerned about my death.  I was convinced that would be the easy part for both Bev and me. The interim, the part while my body wasted away and stopped functioning, was my obsession.

My brother-in-law Rick Jones had recently died from Huntington’s Disease. Bev and I loved Rick like a baby brother. For years we had spent our summer vacation together traveling, fishing, and sharing in our children’s activities with Rick and my sister, Susan.  Their son, Wade, and our son, David, were close to the same age and were great pals. My baby sister, Sue and Bev were best pals. They loved shopping and being together.

Now, we mourned as we helplessly observed Rick experience the loss of the use of his body as Huntington’s Disease mercilessly attacked his entire being. His legs wouldn’t move or made strong involuntary movements as did his arms, his head, and his torso. (In earlier times Huntington’s was known as Saint Vitus Dance because of the peculiar choreography of body movements caused by the illness.) Rick spent almost 10 years in the process of dying. In the last stages a tube was inserted into his stomach for feeding, as he could no longer swallow. His formerly fine mind was now void of thoughts. The ability to visualize how the varied parts of almost any mechanism fit and worked together had been voided by the illness. His incredible knowledge of sports and intense passion for his beloved Ohio State Buckeyes had been stolen by the disease.  Most horrific was the blank stare in his eyes that had replaced the former bright sparkle. His formerly athletic body had taken on the appearance of a holocaust victim in Nazi Germany.   He was diapered as he lost both bladder and bowel control and his speech was gone.. Rick was 52 years old when he died.

Knowing the devastating effects of motor neuron diseases,  my overriding concern for myself was that locked into a helpless body I would become depressed and I knew firsthand  the devastating affects of depression.

I was 35 years old when my first wife, Sheryl, passed away.  After a three year struggle with kidney disease caused by juvenile diabetes she died in her sleep.  Still deeply mourning her loss, I was left to parent and provide for our two children, David, age four, and Shelly, age nine..    My depression and therapy followed her death.  Although I struggled, I didn’t miss work and was able to ‘fake’ normalcy but late evenings until mornings were sad .beyond faking.

After a period of two or three months of this experience I sought help from Dr. Bill Elliot. I tried some medication but it was useless. It made me a ZOMBIE.  Thankfully, talk and group therapy proved helpful and in a six month period some degree of normalcy returned to me and I withdrew from therapy. BUT, this experience heightened my awareness of depression's devastating power.

I had been a single parent for 2 ½ years when I met Beverly Ann. My depression had lifted and a new normalcy was in the process of incubating for me. The routine of work, attending the children's events and housekeeping filled my time.  Pondering a more active social life I joined  Solo Parents.  At one of the first meetings I attended the group was seeking a site for an open house pot luck.  I volunteered my home.  It was at this event that I met Bev.  We fell deeply in love, married and shared a commitment to our family, community and our church.       My children, Shelly and David, became OUR children. When Shelly was seventeen and David thirteen we adopted our Korean son, Chad,  to our family to make it complete. We loved participating in our children's  lives and wanted to continue into the future with Chad. We  had adequate economic resources to enjoy a high quality of life including travel.    Life was nearly perfect, but there were other struggles.

At the age of fifteen, Shelly, had experienced a psychotic break. For a period of time Shelly dipped in and out of reality.  The VOICES in her mind often interfered with the existing reality in her presence. This was difficult beyond words but Bev and I committed ourselves to doing all we could for Shelly and to not allow this experience to damage our relationship or destroy our family life.

Shelly was hospitalized at Methodist hospital in Rochester, Minnesota for several weeks.  Bev prepared daily ‘gifts’ for her during her hospitalization.. She always met and handled the challenges of Shelly’s illness with grace and love, never complaining  Although Shelly was unable to make a full recovery, she did  improve, complete high school and move into a sheltered living arrangement. .

Now, 25 years later, THIS!

I had recently retired and was enjoying my diminished responsibilities immensely when I  began experiencing some symptoms that were causing me concern about my health. I shared them with no one. I simply hoped they would disappear.

I would awake from naps with muscles jumping in my entire body. On cold days my chewing and swallowing were seriously impaired. My feet grew numb and I experienced frequent significant lower back pain.

I had gone to the same primary care physician for years.  He took care of my annual physical, inoculations and a rare bout with the flu.  During my life I had been granted excellent health and gave little thought to the quality of my doctor.  When I finally made an appointment  and met with him I explained my symptoms and found him to be quite ‘casual.'. I had always been healthy. So, to him this seemed unimportant.

Under the new circumstances I decided to seek medical treatment from a new source.

In September 2003, I made an appointment at ISJ Mayo for a physical with Dr. Roger Crouse. From the minute I met Dr. Crouse I didn’t like him. He was humorless and arrogant.

At one point during my physical he called in an ISJ colleague and asked me to stick out my tongue.

He said to his colleague,  “Look at That! Have you ever seen a tongue that big?”

At that point he laughed nervously and said, “It sure looks suspicious.”

Later, he asked me to write my name on a piece of paper and said to me, “Your hand doesn’t shake. yet!”

He concluded the physical with a generalized diagnosis and a referral to a neurologist. He was concerned I suffered from a Neuro Muscular disorder.  Based on the conversations Crouse had with his nurse and another doctor outside his office door, I left his office knowing that he believed I was in the early stages of ALS.

I terminated my relationship with Dr. Crouse quickly and returned to my regular physician. If there was something seriously wrong with me this arrogant ASS was not going to deal with my family as my health progressively grew worse.

I met with my former doctor to share my experience. He disagreed with Dr. Crouse’s diagnosis but did refer me to a Neurologist named Dr. Cardelli.  In December of 2003  Dr. Cardelli gave me an EMG. It was a painful test to determine whether my nerves were sending strong enough impulses to my muscles to make them respond appropriately.

They were not!

Cardelli said, “I cannot tell you that you have ALS but I cannot tell you that you don’t.”

I need to refer you to a specialist.

In February 2005 I went to see  Dr. David Walk at the University of Minnesota.

After a day of brutal diagnostic procedures, Dr. Walk called Bev and me into his office. He shared with us that although he was unable to confirm his diagnosis until my blood work was completed he believed I did not have ALS but rather had Kennedy's Disease. (Spinal Bulbar Muscular Atrophy) He shared, that although this too was serious, it had a slow onset and was not life threatening.

I looked at Dr. Walk and said, “I’m not a hugging man, Dr. Walk, but you’re about to get one.”

Upon our arrival home Bev immediately sat down at the computer and Googled Kennedy's Disease. She found the Kennedy Disease Website.  Soon she was on the Saturday chat line.  What a God send it has been! We attended our first Kennedy Disease Conference in 2006 in Atlanta, Georgia. We have found hope, strength and encouragement through it.  We are eternally thankful for everyone's support and participation.