An ALS Diagnosis Changes Our Perception of Life

Some people take a long time to get an ALS diagnosis, which is a drawn-out, stressful journey. Our story was stressful in a different way, in that my husband’s diagnosis came almost too quickly.

In the fall of 2009, Todd first noticed that his left arm was becoming weak. He thought it was a pinched nerve, so he tried chiropractic care, which seemed to help, but the effects were short-lived. Todd continued to lose strength.

Nonetheless, in April of the next year, we enjoyed a blissful vacation on the gulf side of Florida. Todd had a weak arm, but we were happily unaware of the cause.

After we returned, his primary doctor referred him to a spine care specialist for physical therapy. After evaluating Todd and noticing atrophy in his left arm, the specialist told Todd he should prepare himself mentally for neck surgery. The specialist ordered an MRI.

I went with Todd to the follow-up appointment. Rather than immediately discussing the MRI results, the doctor gave him a more thorough exam. He pushed and pulled on his arms and legs, had him walk on his heels and toes, touched his fingers and toes with a tissue, shined a light across his skin, and checked his reflexes.

The doctor said the MRI didn’t show a problem with Todd’s neck and it might be ALS, so he wanted Todd to see an ALS specialist.

Todd wasn’t alarmed by the referral. He simply didn’t believe it could be ALS because his symptoms were nothing like those of a family friend who had had the disease. I wasn’t upset, because I didn’t know what ALS was.

That evening, I looked it up on the internet and I burst into tears.

Todd talked me down. He was so unconcerned that he went alone to the appointment with the ALS specialist so that we didn’t need to find child care. The doctor gave him the same exam by pushing and pulling on his limbs, and then said he thought it was ALS, but wanted additional testing to be sure. The doctor asked Todd to return a week later to confirm the diagnosis.

In the intervening days, we researched ALS and every disease that could look like it. We found a ray of hope in reading that misdiagnoses occur 10% of the time.

We learned that it was necessary to rule out other diseases by performing a nerve conduction test and an electromyogram (EMG). We were mad that the ALS specialist had come to such a quick conclusion before seeing the results of those tests.

Unfortunately, the doctor proved to be correct in his initial assessment. At the follow-up appointment, the nerve conduction test showed that the signals were getting through. The EMG sounded like frying bacon, indicating Todd’s muscles were getting bad signals. And with the other clinical signs including atrophy, muscle fasciculations, and hyperreflexia showing both upper and lower motor neuron death, the diagnosis was confirmed.

Just eight months after Todd’s first symptoms, we were devastated to learn he had ALS.

I don’t think anything could have prepared us for the reality facing us: a cruel, untreatable disease with a life expectancy of three to five years.

I’ve often thought it would have been preferable for the diagnosis process to have been drawn out. It would have been a different tragedy if the disease had progressed quickly and we didn’t know what was happening to Todd. But with hindsight, seeing that the disease has progressed slowly for him, it would have been nice to have had another year without the diagnosis.

If we hadn’t known it was ALS, we could have continued to live in naïve bliss for a while longer, watching Todd get weaker gradually, but without thinking he was becoming paralyzed and heading for an early death. However, the early diagnosis did give us time to sell our house and move near other family members before the disease progressed too much. It gave us time to prepare and plan for a life with disability.

An ALS diagnosis is knowledge of the inevitable; something that will happen whether or not we know what to call it. But life is more than what happens to us — it is our perception of those events. So, with a diagnosis, life itself is suddenly and irreversibly changed.

That Florida trip in April 2010 is the last distinct memory I have of life before we entered the valley of the shadow of death.

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