An ALS Diagnosis Changes Our Perception of Life

Kristin Neva avatar

by Kristin Neva |

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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.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


john maturo avatar

john maturo

My heart breaks to hear of ALS at such a young age. I was 58 when diagnosed. I just turned 60. It has affected my left leg and lower back so I get around with a scooter or a walker.I'm in a Healey drug trial and all my numbers are going up. Muscle strength and lung capacity are all improving. Never give up and look into all drug trials. God bless and keep going. Look up a gentleman named Mcfinn Lovere. He had a total reversal of ALS after losing all motor functions. God bless and NEVER give up.

MikeTiredRdyCure avatar


This is why more needs to be done!
We are losing great people to a nasty disease in a terrible way.
We've all seen the past year how fast we can get something done when needed! In the past 100yrs what progress and treatments do we have??? I'm still waiting and it's 2021, people are working on flying cars and going to Mars!! Come on!!

Dave Reckonin avatar

Dave Reckonin

Day x : difficulty at work.
Day x+1 family doctor orders immediate visit to neurologist
Day x+1 + 1hour EMG
Day x+1 + 2 hours Doc says thinks it’s ALS
Day x+ 2 end of normal life
Day x+ 3 start of downhill journey
Day x + 790 the end

N Fine avatar

N Fine

I follow you beautiful words much like I would a letter from a dear friend. Thank you for sharing your thoughts and life, it helps me fell less alone in this world of caring for someone so dearly loved.


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