Murder Case of ALS Patient Could Lead to Further Prejudice and Misunderstanding

Although the story is from 2015, it raises concerns even today.  Read the full story here.  To summarize a Wisconsin man was on trial for murder.  In an unprecedented case, the jury in the case, has found the then-40 year-old former sheriff's deputy not legally responsible for shooting to death his wife and sister-in-law because he had developed a form of dementia related to his disease.

In reality, about 50% of ALS patients can develop cognitive problems and only 10% develop a frontotemporal dementia with severe cognitive impairment.  But the defendant had written a note on his phone the day before the shootings, in which he fabricated an elaborate three-way suicide pact as a cover-up.  And that day, he also bought charcoal for his grill, which he subsequently lit in his house in order to commit suicide via carbon dioxide poisoning. The prosecution maintained that the actions the day before proved premeditation and couldn't have been performed by someone with cognitive disorder. Furthermore, experts on ALS say that even in patients with severe frontotemporal dementia [FTD], they have never seen acts of such violence as those committed by the ALS patient on trial.

Neurologists who work with ALS patients are confounded by the jury's decision -- that the shooter was innocent due to his neurological condition which caused him to act impulsively and irrationally.  Doctors are concerned that this case could erroneously brand ALS patients as violent.  They say that even with ALS patients who do suffer FTD, they have only seen docile and apathetic attitudes.

I wonder if the jury's decision had as much to do with pity, taking into account that this defendant had a short life ahead, filled with its own suffering and hardship.  In a strange twist, I am in agreement with the neurologists who say that this can set a dangerous precedent -- one I know all too well.  You see,  I see first-hand all the time, evidence of the fear of this disease.  I hear loved-ones tell me straight up that they are concerned about being around me because they "wouldn't know what to do if something happened".  When I ask what "something" is, they shrug.  I was recently with a group of people who held their breath every time I coughed, even though there were members of the group who coughed at least twice as much as I coughed, but nobody flinched when they did it.  

It really puzzles me when some people ask me while I am eating "Are you okay?" every two minutes.  The discomfort on some peoples' faces can't betray the dread and fear of this disease.
Now do we really need the fear that I will somehow fly into a sudden rage and kill everyone?

February 7, 1964 [part one]

I remember the day I was born. My birth certificate says I came out of my mother's womb on June 7, 1955, but the date I was born was more than eight years later -- February 7, 1964. We all have days that change our lives, and the world, forever. I do remember a day about three years earlier when someone shot our president, and that was supposedly changed the world. I remember a lot of people on television crying, even men. All of a sudden John Kennedy's face was everywhere. And I remembered he had a little girl around my age. I recall briefly wondering how it would feel to have your dad shot to death, and see it on the news. But my dad wasn't the president, and I couldn't imagine why anyone would want to kill a mailman like my dad. The only person who got angry with Dad was Mom. So, although I felt sad that a little girl and her younger brother had to lose their daddy, I can't say that it changed my life any. I played with my friends and went to school as I had done before the president got shot.

Anyway, these days that change your life always start out to be very routine. We almost never wake up and say "This is the day that will change my life". If we wake up and think "this day will change my life", it won't. I knew this Friday morning was going to be somewhat exciting to an eight-year-old in the fourth grade, but I didn't realize how much it would change me; as a matter of fact, this day would change America, and was part of something that would change the world forever. My world, and the way I looked at life, was about to be flipped around in a way that I could only begin to fathom many years later.

Mrs. Hazelcorn, my fourth grade teacher, took us on a lot of field trips that year --probably one a month. She needed to enlist a lot of moms to go on the field trips. And this was the sixties, when most moms were home. I think Ellen Wallach was the only kid who had a valid excuse; her mom was a teacher. Teaching was the acceptable career in those years for a Jewish mommy; otherwise, they just stayed home, and most of us had a mom in the house when we got home from school. I liked going to Ellen's house after school, because she had a key and her mom would come home a little after we arrived, so we could do whatever we wanted for at least 45 minutes to an hour. I didn't appreciate the fact that my mom was always home. I wanted Ellen Wallach's life, with my own key and an hour to do whatever, with no mom there to breathe down my neck. So Ellen had a valid excuse to say that her mom couldn't go on class trips. After all, Mrs. Hazelcorn couldn't go on her kids' class trips. But she wouldn't accept my mom's reason for weasling out of her duty -- that I had a baby sister at home. "Mrs. Hazelcorn wants to know when you are going on one of our trips", I would tell my mom. "You tell Mrs. Hazelcorn that if she wants me to go on a class trip, she can hire me a babysitter." End of subject.

So I set out that day to PS286, the Jane F. Shaw School, in my neighborhood of Sheepshead Bay in Brooklyn. Dad insisted on calling it Idlewild Airport, even though less than three months before, the name was changed to John F. Kennedy Airport. Dad said he never liked those Kennedys. They were bums. Their old man hated Jews. It was sad that President Kennedy was assassinated, he said, but those Kennedys were no damn good anyway. I didn't care what they called it, I was going to an airport for the first time in my life. Mom told me I might see people in foreign costumes, like the ones in my book at home "Children Around the World". "Look for women in saris, or people in African dress. You might see a Frenchman wearing a beret, or even a Dutchman with wooden shoes, or a Japanese woman with a kimono", Mom said. I told her I would look for those things. I got even more excited as we walked onto the bus, and Mrs. Hazelcorn told us that we were going to try to get into a real airplane!