“The Differences of ALS” Chapter 127

The other day I received a comment from a reader who wrote ALS was a “snowflake” disease. I sat back in my chair, no wait, I’m always sitting back in my chair. I sat in my chair wondering what this person meant by “Snowflake.” Surely they didn’t think ALS was nothing or trying to tell me to suck it up and stop complaining. So I sent a message asking for clarification.

The response was so spot on for me I had to write about it. “Snowflake, because just like snowflakes no two PALS are alike.” You might be thinking that’s not true, we are all going through the same thing. Well let me explain.

Our journeys all start differently. I was 54, an Army Veteran, pretty healthy stud of a man and living in Springfield, VA. This alone makes me different than most. Add in the different doctors who determine a diagnosis and how they come to their conclusions. Don’t let me get going about the different tests and how long it took to get the diagnosis. What about the different types of ALS; Familial or Sporadic, Bulbar or Limb Onset. The more you dig deeper the more you can see we are each different like snowflakes.

So how can we expect a cure when we are all snowflakes and it’s been over 150 years since its discovery. Thank God it’s a rare disease because I don’t wish it on anyone, but I believe that’s also why there’s still no cure. The limited number of people to join the trials on top of the speed ALS takes its victims. The many factors of ALS. As well as Big pharma likes to keep people sick and there’s not enough money in it for them to care about ALS. It’s no wonder we are still dying. 

Yes, there are three drugs recently available, they are not a cure and to be honest a cure is the only drug I want. The current drugs have shown to “extend “ our lives. How do they know it works if we all progress differently? Are the risks worth the reward?  The neurologist can’t even agree on life expectancy timelines, my first neurological told me 6 -18 months and another 2 - 4 years. At the end of the day we’re are the ones holding the bag, and this bag is full of 💩. The kind you can’t get off your shoes.

So how does one deal with it if we can’t run out to catch snowflakes on our tongues? The past few weeks I’ve been taking poetry classes because finding a cure might be out of my hands, but being busy and happy isn’t. This is one way I am dealing with it as I slowly melt away. Hope you enjoy it.

“Snowflake”

Silent thief of voice and motion,

Nerves unravel, with slow erosion.

Ordinary days turn brave,

Wills of steel, hearts to save.

Fading strength, but not the soul,

Light still shines in every goal.

Amid the struggle, courage grows,

Kindness in each hand that knows.

Every snowflake unique like PALS, we can’t do this without ours CALS.

Love and Blessings 

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