A Family Secret: The Disease Our Doctors Have Yet to Understand

By Kathy Croskey-Humbers

I watched my dad waste away when I was in my early teens. He was diagnosed at that time with ALS. Unable to care for himself and my mom, she vowed to never put him in a nursing home..and she kept her promise.

He became disabled to the point that my mom had to assist him with dressing, toileting, bathing and transfers. My dad went to the hospital on Valentines Day of 1980. A week later he died of pneumonia related to his then diagnosed ALS.

A year later his mother died. Grandma had always walked with a walker from when she was in her early 50’s, she could not stand to cook, do dishes or do her own house cleaning. I always saw her this way so I never really thought it was abnormal. After death I was told she had ALS as well. Evidently so did her older sister.

I am the youngest of the family.

There were three older brothers. My eldest brother did not have the “curse” but the rest of us did/do. I am now the only survivor. On election day I lost my second eldest brother. He had lived in the Iowa Veterans Home for 20 years. He was a complete invalid, unable to move but for his neck and face muscles. He lived on a C-PAP machine 24/7 for the last several years. His mind was sharp and he held high positions in the Resident Council for many years. A sharp mind stuck in a worthless body.

Two years ago I lost my youngest brother who was only 18 months older than me. He too ended up at the Iowa Veterans Home for the last year of his life. He was unable to walk and used a motorized wheelchair to get around. He was diagnosed with Spinal Muscular Atrophy (SMA) at the University of Iowa.

My brother, who died on election day, was also given a diagnosis of SMA, but the University of Indiana did some research and tests and they said they did not know WHAT he had but it was not SMA or ALS.

A few years ago I was told the same thing. I have something, but not ALS or SMA. I am 57 years old, I walk with a walker, I am unable to raise my arms above my head. I trip and fall, I can not balance myself to stand without holding on to someone or something. I lose control of my bowels/bladder. I am scared to death of becoming like my brother who lived on the breathing machine and not being able to shew off a fly if it landed on his face or anywhere.

I am depressed and just wish I could sleep. But I have hope my neurologist, Dr, Nivedita Jerath, will find the answers, as she has taken it upon herself to find some answers. She has taken my DNA, EMG and biopsy along with my two brothers and my dad’s biopsy and done some genetic testing, The University of Iowa was unable to find anyone matching the same mutation. So it was sent off to an international genetics research lab in Miami FL. So far nothing has came up. I have nieces and nephews who are exhibiting symptoms.

I am scared for them and all the future generations. Asking for Prayers and answers! Peace & love