It was in March that we first noticed the muscle twitch in his right arm. His bicep seemed to “flutter” and didn’t stop like a regular muscle spasm. We were sitting in a small group training around then and one of our leaders commented on how wierd Cliff’s arm looked. Still, Cliff wrote it off as a pinched nerve or something. We had alot going on and he felt that maybe his body was just tired. He also worked out quite a bit so maybe he had pinched a nerve while lifting weights.
He continued to feel tired, exhausted most of the time, (he assumed that came with turning 50 the previous June and being busy) and a little irritated by the muscle spasm. But he didn’t want to really do anything about it, yet.
We took a family vacation to California and took the kids and our two granddaughters to Disneyland in May. It was an amazing time. We had a blast! While we were there Cliff became more concerned while playing tennis with the kids. He couldn’t get a good grasp on the racket. Then, he involuntarily dropped it. When we got home, he made an appointment with a chiropractor and a massage therapist, both of whom thought the twitching was wierd…the massage therapist even called in another therapist to see “how wierd” it was. Neither suspected what the problem actually was. Cliff continued to think it wasn’t much until one day, while out to lunch with one of our sons he tried to grasp a condiment cup and his hand would not grasp it. I insisted we call a neurologist asap.
His first appointment was on July 3rd, 2008 with a highly respected neurologist in our area.
After the initial consultation and evaluating Cliff’s symptoms the doctor’s diagnosis was as certain as he could be without having all the tests run to rule out other things…Lou Gehrig’s disease…or Amyotrophic Lateral Sclerosis. (I have written more in my journal pages in “in my words”).
After Cliff’s preliminary diagnosis we set up second, third, fourth and fifth opinion appointments with neurologists in Boise, Salt Lake City and Seattle. All readily confirmed the preliminary diagnosis. We knew, beyond the shadow of a doubt, that Cliff had Lou Gehrig’s disease. He had already undergone the visual testing, blood and urine testing, a nerve conductor test, electromyogram, MRI. Some have a spinal tap or muscle biopsy which Cliff did not need to have…by the time he was diagnosed the disease was far enough along that undeniable symptoms were present. Both of us had wanted the diagnosis to be wrong. The day that Cliff had his MRI he was praying that they would find a brain tumor, instead. Yes, we had done enough research to know what this would look like for him.
Of course, initially, we wanted to assume the initial diagnosing physician had misdiagnosed Cliff. But, in our relatively small area, he had diagnosed 16 others (I believe) over the years and had never been wrong. Then, I had questions and wanted answers.
If doctors knew enough about Lou Gehrig’s disease to diagnose then, surely, they could give us a scenario of what happens next, when it happens, a survival prognosis, etc.. Hadn’t these specialists in ALS dealt with enough patients to know something? I discovered that in the research I subsequently did, I knew almost as much as the doctors did about predicting the “slope” of the disease or prognosis. I cannot even express to you the intensity of my frustration over that. I cried and yelled about it. I guess I thought that if we had some kind of prognosis we could be prepared. I felt that there would be some kind of comfort in knowing when the end might occur…we could be really intentional about treatment, or just making all the days count. But, there was no preparing for each significant loss this disease takes, really.
It took me a long time to accept the fact that the doctors really did not know everything about each individual human body and how this disease affects each uniquely. If I am honest, I would have to say that I maybe never really did overcome all of my frustration about that. I figured with all the cases of people with ALS that all these specialists had seen, there must be some sort of data to help determine prognosis. There is not. If they tell you there is, don’t put your hopes in that. The reality that only God truly knows the number of our days became more real (“A person’s days are determined; You have decreed the number of his months
and have set limits he cannot exceed.” Job 14:5; “Show me, Lord, my life’s end and the number of my days; let me know how fleeting my life is.” Psalm 39:4) and, in that, I did find consolation.
Cliff’s times were in God’s hands. Cliff, in quoting someone else, used to say “all of us are terminal, some are just fortunate enough to really know it.”

caption id=”attachment_137″ align=”alignnone” width=”245″ caption=”Taken about a year before diagnosis”][/caption]

July 3rd, 2008

“I have been having tremors in my arms and now shoulders, legs and back. Went to the doctor, a neurologist, and he did a series of tests on me. Then, he rocked my world when he said that his preliminary diagnosis was Lou Gehrig’s disease. When he said that everything stopped for me. Dr. Green was very honest but this day was a whirlwind of a day for me. My life will never be the same.

In the evening we went to our “Fun in the Son” (a get together of all our church’s small groups) and I told the “body”. I told my kids first and they took it very hard. The church is praying for our family. We have people praying all over the place for God’s healing.”

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