Story of Courage: Tami Kidd

My ALS story begins in October 1999 when my feet and ankles became weakened and painful.  Assuming the symptoms were caused by being 7 months pregnant, I was concerned but not overly worried.  During this time, my parents arrived to celebrate son, Jordan’s 7^th birthday.  My mother confided how tired, fatigued and just plain lousy she had been feeling for months.  At first, she was convinced she was just out of shape.  She went to the gym more.  The harder she worked the worse she felt.  Doctor’s appointments were scheduled after their visit.  In January 2000, mom arrived back to Atlanta after the birth of our daughter Jocelyn.  She had had a muscle biopsy 1 week prior and would have the staples taken out here.  What a trooper.  Determined to welcome her granddaughter into the world she could not be deterred. 

Since seeing her just months before, I could see the difference in her stamina.  She was always a strong, agile woman who never complained.  We started talking about the symptoms we were now both experiencing.  Hers’ were obviously more profound.  

By March of 2000, we were diagnosing our selves with Web MD.  Ruling out ALS each time we visited the site.   ALS just seemed so extreme.  Certainly “we” couldn’t have that.  Who even knew someone with this Lou Gehrig’s thing.    Days later, doctors confirmed mom had M.S., lesions on her brain were evident from an MRI.

M.S. now that is something we could deal with.  There were treatments, people can survive, even live enriching lives.  Realizing that I too may have M.S., I insisted my General Practitioner refer me to a Neurologist.  He declined over and over. He simply said I had just given birth and nothing was wrong with me even though reflexes in both ankles were undetectable.  Furious, I found another doctor who supported my efforts to “find out” what was happening to me.  My first neurologist was baffled; it didn’t look like M.S., ALS or anything he had ever seen. Monthly appointments to monitor progression always ended the same with no answers. Hundreds of blood tests, heavy metal screening, 2 MRI’s, 1 CatScan, Ink injected into my spine, monthly nerve conduction tests, nerve velocity tests with no results.  Only a referral to another neurologist who was convinced I had to see another neurologist and have a nerve and muscle biopsy performed.  Still without conclusive results of a diagnosis’, the damage and weakness obvious but a culprit not found.

Meanwhile, my mother was progressing so fast!  She went to Seattle in December 2000 when the doctor’s gave her the 2^nd diagnoses of ALS in addition to M.S.   Complete devastation doesn’t start to describe the emotional pain.  Her fate was now sealed and mine was in oblivion. 

My new neurologist decided, I didn’t have ALS and wanted to try a six month therapy regimen.  Once a month for 5 days in a row, I was infused with pure blood called IVIG.  It was supposed to boost my immune system.  Instead by day two each month I had excruciating migraines that would last throughout the treatment and into the next week.

January 2001, I started using a cane.  My mother was using leg braces and crutches.

By June she was no longer walking at all, unable to shift herself in bed, her hands barely able to grasp.   

November 2001 was the beginning of the end.  My parents purchased a very large pull trailer and drove from Montana.  Our side yard became a make shift trailer park.  My mother and best friend, was now where I always dreamed she would be, with me. 

The 1^st ALS walk was in March ’02.  Mom and I stayed at my house, while my father, sister, co-workers and friends walked to the name of Verna’s Legs.  Three weeks later on April 5^th, she took her last breath.

One year and one month later my diagnosis’ came.  After a trip to St. Louis to Washington University for more tests and studies, the grim news came in a nonchalant phone call.

I volunteered my genetic misfortune to the Dr.’s at Emory the summer of 2003.  It was then I also learned that I have the SOD1 mutation, more commonly known as Familial ALS. 

I tell my story, to emphasis how different this horrific disease affects each person diagnosed.  There is not ONE test, 5 procedures or a magic wand that gives conclusive evidence as shown by my 4 years of uncertainty.

It goes slow, fast, starts in the head, begins in the limbs, but always ends the same in a paralyzed body with a fully functioning brain.  

It is my hope that a cure will be found, or at least a viable treatment that can sustain quality of life before this deadly disease takes me as well.  I live every day as though it were my last.  I thank God every evening for restoring my soul and ask that he allow me to “walk” in his light another day.  I give thanks for my life, my health and my family.  I am grateful and appreciative and realize life is what you make it.