ALS Sucks

We are getting closer to the end.  His breathing has definitely changed, he’s got his first bed sore.  We’re estimating about 4 more weeks.  Is that not the most insane thing to type.  It’s probable my dad will pass by Easter.  I have been trying to wrap my head around that and figure out what we need to do when it happens. I’ve “assisted” with two other funerals, my aunts and step grandfather, but wasn’t as involved, obviously, as I am now. You hear all the horror stories from crematories and funeral homes. I watched some videos from Ask A Mortician on YouTube.  VERY helpful. If your family member wants a direct cremation, this video is extremely helpful in understanding what to expect when speaking with funeral homes and what to look out for. ALS sucks by the way.  Thought? Comment? Question? Comment on the blog.

Stephen Hawking, the longest surviving ALS patient from diagnosis date, died today.  I’ve been reading articles about his diagnosis and life with ALS recently. Past his obvious intelligence and gift to the science world, the man was amazing. ALS sucks by the way.  Thought? Comment? Question? Comment on the blog.

Last post slightly angst-y so I wanted to do a follow up with the good. When I think about the fakes I typed about before and get angry enough to want to call them and scream or kick them in the shins, I try think of the flip side.  My parents have been friends with this couple for decades. There are lots of entertaining drunken stories I would stay with them when my mom traveled and my dad worked third shift. They have three boys. We were with them all the time until they moved out of state and across the country but we did go for one visit. They were visiting and we were out at Disney Springs when Dad had his first real severe downhill incident on April 28th.  They kept in CONSTANT contact after that and came for another visit in mid-December. And the visits were amazing. Laughing and storytelling; a visit that my dad so looked forward to and made him smile so much. After, they send cards and call. Hilarious cards just to let him know he’s being thought of. They have been a beami

I try to keep an open mind and understand how people deal with a disease like ALS.  It can be difficult and intimidating to see someone close to you suffer. However, understanding is not one of my strong suits. I try but don’t normally succeed. My dad loves people, loved to help people, loved to spend time with people, ect ect. He had the same routine, one that I have inherited, that every Friday he would go have some drinks with friends. Typically the same friend and his wife, every Friday, for as long as I can remember, decades of Friday drinking.  So when my dad got sick, that couples absence from his life (no visits, no calls, no check-ins with my mom) was very noticeable.  And was devastating for my dad. My dad worked in a warehouse for a large portion of his adult life. Helped people he worked with move, set up their entertainment systems, met at breweries for drinks. Again, not one phone call, not one visit. More devastation. My parents were friends with people they

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

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