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What the "eff" is ALS?

What the “eff” is ALS?

-        By Scott Craig, pALS

What the “eff” is ALS? Good question. Most people have never heard of ALS.

I certainly wasn’t ready to hear my diagnosis, but who would be really? How could anyone even prepare to be told you were going to die from, arguably, the worst disease out there? Of course I knew what ALS was, and I knew it was a possibility because I have Google, and a little OCD.

My good buddy, Tony Fry, and his beautiful family of course, was the first person I met with ALS and we became fast friends. We were Brothers in battle, and his sense of humor and his bitterness over ALS were both better than mine. We laughed and swore and rolled our eyes at the absurdity of our situation. We knew we were screwed and there was little to nothing to be done. Fortunately we were able to jam a lifetime of friendship and shenanigans into the short time we got to spend together. Most Unfortunately, Tony died recently from ALS after a long and expensive four year battle.

Tony asked me once if I knew I had ALS before my official diagnosis. I suspected it, but joked and said I was hoping it was Parkinsons.

Tony leaned back in his chair and laughed out loud. Parkinson’s! Parkinson’s! I was hoping it was gas! Hahahaha! I had rib cramps for a week from laughing that night. Tony almost fell back out of his chair. Man, do I ever miss that guy. We had so much fun, but Tony didn’t think ALS was funny. He was pissed off at what it was taking from us. He wasn’t wrong. ALS takes almost everything. I miss that guy, a lot. ALS kills the very best people. But I digress.

Compared to many that experience a long and drawn out diagnosis process, my experience was rather short and abrupt. I was already going through a battery of wellness tests when I pointed out to my PCP a strange ripples of muscle in my left tricep. An appointment was quickly made with a neurologist in Carson City, Nevada and I was sent home with nothing but worry. That’s when I opened the google and a new darkness began to creep into my world.

March 5th, 2019, I was ushered into the neurologist’s office where I was left to sit, alone, to ponder and pray about what was going to happen next. The neurologist came in and asked me why I was there, so I started to regurgitate through my journey of the past few weeks when he cut me off abruptly. “What do you think it is?” He asked.

After a pause and a deep breath I said “I’m pretty sure it’s either Parkinson’s or ALS”

I took off my shirt and he quickly looked me over. “It’s not Parkinson’s. You either have an extreme calcium deficiency or ALS”. Damn!

Now for those of you who have never met me I need to give you a little description of me. At that time I was 235 pounds, an avid heavy weight lifter and trained boxing and MMA, on and off for years. I ate pretty well overall but my tequila intake was probably a bit too high. Hahaha! An extreme calcium deficiency was highly, highly unlikely. My heart sank and I left the neurologist office unceremoniously, with an order for an CT scan , an EMG, an MRI and a return date in mid April. I knew these tests were not going to be good news.

I’m not sure how long I sat in my truck. I knew I was in shock. I just sat there staring at nothing while my mind raced. I felt like I wanted to cry but no tears would come. I oscillated from panic, to anger, to inner peace and back again, several times.  Then I opened the truck door and vomited onto the pavement.

After regaining my composure and cleaning myself off the best I could I called my brother. I told him what I knew and what I didn’t know and what I suspected. I also made him promise to not share my news with anyone until I had an official diagnosis, leaving some window for a misdiagnosis or oops to intervene. But I knew. I’m not a hypochondriac or one to panic. I’m a realist pretending to be an optimist and I knew. I had already browsed the internet with my OCD and I knew. I had already seen the look in my doctor's eyes and he knew. I slowly pulled down the visor, opened up the mirror and stuck out my tongue.The muscle of my tongue moved and pulsed in waves, like my tricep. I didn’t notice it before but now I could also feel it, and I knew. I knew I had ALS? What the fuck?

I knew the next few weeks were going to be a grind. Between multiple tests, work, being a newly widowed father and my mind working overtime, getting to the next appointment was going to be tough. So I did what anyone in my predicament would do. I went to Guadalajara, Mexico to go tequila tasting. Yep! I ran from my problems and tried to drown my sorrow’s.

Alright, enough about me. It’s my intention to share wisdom and give hope to everyone touched by ALS, and there is hope and help out there, but you have to search for it. So I’ll leave you with this, almost everything that defines your quality of life going forward, is gonna come from you and your desire to live. In some cases even that won’t be enough. you’re going to have to push through some very, very difficult times. But you can do it. We’re all doing it.

I suggest you get good at managing, because ALS is a full time job and you, you are the boss. The quicker you can build a support team the better. This team is going to be above and beyond whichever ALS clinic you choose to go to, and you really should go. A good ALS clinical team is your gateway to accessing the tools and toys you’re going to need to function at any sort of level approaching quality. The team you build outside the clinic, those are the people who will help you use those tools, but you are going to have to teach them. Right boss? Right!

Whatever tools you like to stay organized, gather them up. Since it’s 2022, I prefer digital solutions, so all my suggestions from here on will reference those, my hands don’t work anyway. If you’re not comfortable with today’s technology, it’s time to catch up. It’s time to get to work! I’ll go over more in the next episode. Until then, and always, you can ask me anything.

It’s only a mild case of ALS.

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Powerful! Thank you Scott. Loved the phrase: "almost everything that defines your quality of life going forward, is gonna come from you and your desire to live. In some cases even that won’t be enough. you’re going to have to push through some very, very difficult times. But you can do it. We’re all doing it." (Sharon, in Minneapolis)


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