Skip to main content

So it begins

I hate ALS.  It is a horrific disease. Horrific. Amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease, is a progressive and incurable motor neuron disease that leads to paralysis, the inability to swallow, respiratory failure and finally death, usually within three to five years from the onset of symptoms. But no case is the same. There is no “common” path or progression.  Majority don’t lose mind function.  You slowly become paralyzed and can’t move or communicate but still have full brain function. Full thought function. I can not think of a worse fate. As a thinker, as a doer, as an anything, I can’t think of a worse fate.


My dad has ALS. My dad was diagnosed on August 21st, 2017. It was confirmed on August 23rd, 2017 via EMG. And reconfirmed on August 31st by an ALS clinic. My dad helped me move my house in March of 2017. Him and I carried every heavy thing my husband, daughter and I own. By the time of his diagnosis, 5 months later, he couldn’t walk without a walker. And in the afternoons, he could barely do that. My dad is a pretty prideful man, humble but prideful. He hated that walker. 

ALS sucks by the way. 

Thought? Comment? Question? Comment on the blog. 

Comments

Post a Comment

Popular posts from this blog

Diagnosis

To get to my dad actually being diagnosed with ALS was quite a process. That is for fucking sure. My mother thought he had Parkinson’s. My mom is also a big fan of WebMD. I didn’t know what it was but there was definitely something wrong. His neurologist didn’t but humored by mother with a battery of tests. I Including an Alzheimer’s test and a Parkinson’s test, a very expensive (with deposit for medication in the few thousand dollar range out of pocket to schedule)].  Granted you got the deposit back once you showed up fro the test and it was covered by insurance.  But I don’t know that many people that have a couple to a few thousand dollars sitting around to be held for a medical test.)  There isn’t really a definitive test for ALS. There are symptoms that sometimes present, and can present in different sequences at different times.  You can have an EMG and nerve conductivity test done to kind of “confirm” the diagnosis.  Other than that, to my understanding, the other tests can r
7 comments
Read more

Another Good Man's Funeral

I went the the funeral of a friends father today.  It was a beautiful service followed by dinner at one of his favorite restaurants. His daughter-in law, my friend, spoke, some of his family spoke. Some of the things that were read are pinned on my “Pops” pinterest board. It was sad.  But it was nice to see so many family and friends fondly remembering their loved one. Made everything that will happen soon very real. Very palpable. ALS sucks by the way.  Thought? Comment? Question? Comment on the blog.
Post a Comment
Read more

Diagnosis Part 2ish

After the doctor said it was ALS and we scheduled the EMG and Nerve conductivity test to confirm two days later, I left to go back to work. I pulled into a McDonalds on the way back to work to cry, to ugly cry. I’m not a cryer. At least I think I’m not a cryer but my husband might disagree. I’m not saying crying isn’t necessary but is best done in the shower or when in the car by yourself. When my dad’s diagnosis was confirmed by his first neurologist via EMG I asked him, to the side afterwards, how long we had. He looked so somber. He knew he missed it the last couple appointments because he hadn’t done a physical exam and seen the muscle fibrillation that covered his back and upper arms. He knew it was out of his area of expertise. He knew it was NOT a diagnosis we were expecting. He knew that the progression in the last few months was not a good sign of how things would progress. His answer to my question was medical in nature but the look on his face explained a lot. Too much. The
Post a Comment
Read more