What is ALS? It's a tragic disease that once you learn about it, you'll want to do more to help those who suffer from it. Here to give her experience and bring about awareness, is Lyra Totten-Naylor. Thank you for sharing your story.
Amyotrophic lateral sclerosis is a mouthful for anyone, especially those who have it. Three and a half years after learning about it, I still can’t say it. In conversations, having noted a number of confused faces even when using the initials ALS, I quickly add the words that draw recognition, “Lou Gehrig’s.”
My father-in-law, Dave, was a die-hard Detroit Tigers fan who hated the NY Yankees with a passion. Being diagnosed with a disease best associated with the Yankee’s Iron Horse was just one of the many indignities he handled with optimism and grace.
Dave received his diagnosis of ALS in September 2007 at the age of 65. This is ten years beyond the average age of diagnosis, although some people are diagnosed as early as their twenties. Having retired from the University of Cincinnati just the month before, Dave dreamed of taking an extended holiday in France, and playing catch with his four grandchildren. ALS stole those dreams.
Doctors and researchers don’t know precisely what causes ALS. There is small genetic component, but the overwhelming majority of cases are “sporadic,” meaning they can affect anyone, anywhere. The national ALS Association helps raise funds to find out why ALS occurs and what can be done to ease the symptoms or at least slow the progress of this always fatal disease.
No-one gets better. My father in law approached each day as his last “good day,” knowing each day his condition grew worse. Each day, his body grew weaker. Each day, the neurons that normally transmit the message to move from the brain to the muscles died. Each day brought a lessening of the ability to control movement until the muscles atrophied. This occurs not just in the large muscles groups of the legs, arms and back, but also the smaller, critical ones that control speech, chewing, swallowing and breathing.
Because ALS does not weaken the brain, the patient is painfully aware of becoming a prisoner in his or her body. Each time we visited (we lived several states apart) he could participate less, disappearing to his room to watch travel videos as the rest of us ate a meal. It was hard knowing my daughter helped him with card games not just because she liked spending time with Grandpa, but also that he could no longer play the physical aspect of games without help. But that sorrow was nothing compared to the sadness in his face once he could no longer return her hugs. Many ALS patents understandably grow depressed. I won’t forget carefully listening as Dave told me life lost its joy once he could no longer eat.
Less than a year has passed since my father-in-law’s death and it’s still hard that a man so full of vigor just months before his diagnosis is now gone from our lives.
I am grateful for the work done by the ALSA at both the national and local levels. Local ALS chapters provide day-to-day support those families living with ALS. Until a cure is found, they provide vital assistance to those most directly affected by ALS. Let’s hope that day comes soon. ALS is a terrible way to die.
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Allure Van Sanz