Saturday, March 16, 2019

Five Opinions

  Hello friends. I've seen five doctors, four of them neurologists, and they all say I have ALS. I had a really big appointment last Wednesday, and it sucked the life out of me until today. I am so glad that I have finally recovered from that appointment. I have to do that same appointment every three months. I won't bore you with the details, but bear in mind that it was over four hours of being poked, prodded, and answering questions.

  Everyone who has spoken with me about eating and swallowing is insistent that I get a feeding tube. I have to decide within the next three months. Once my breathing is affected they cannot do the procedure, and eventually I will be completely unable to swallow. I loathe the idea of it, but if I can still walk in three months, I will do it. Really don't want to, but I will.

  On to funner things. It seems that most people who died with ALS, were folks that made the world a better place for the rest of us. I don't claim to have made such an impact, but I am honored to be taking a ride in the same boat they were in. I knew one person who had ALS. Indeed, he was a kindhearted gentleman.
  I did not know these three men, but they certainly made my private world a more enjoyable space.

 Stephen Hillenburg, creator of SpongeBob Squarepants 


Stephen Hawking, genius extraordinaire 

Lou Gehrig, the Iron Horse 

Yeah, I am in good company! 

Peace Y'all!

Monday, February 11, 2019

Waiting on a Second Opinion

  Is anyone still checking on Now and Zen? I haven't died, but I'm working on it. << joke

  Yeah, this is awkward. First things first- Do NOT set up a GoFundMe for me. Doing so would cause problems that I really do not want to waste time dealing with.

  It took a little more than a year between when I applied for medicaid and my first doctor's appointment. I've suspected for months, and last Monday my doctor said I have ALS. Yeah that ALS. I still have appointments lined up, and things to do, but there it is.  My wife knows (bless her beautiful heart), but I have not told anyone else. I am not close with my family, but I do not want to alarm them in case this turns out to be something that is somehow equally disabling, but less deadly.

  So I thought maybe if anyone out there wants to interact with me through comments, that might be cathartic. I can still walk, and I'm able to use my arms for most things. I cannot speak, and have a helluva time not choking. I can just barely move my tongue. I never knew just how much we rely on our tongues.

  I've been calm about all of this. I have been preparing my mind for this news for some time. Every now and again, I think, 'Wow, can this be real?'  It's real. I don't know anything about the future, so I can't answer those kinds of questions. But, I do know what it is like being inside the body while losing control of it.  I am more than willing to answer those kinds of questions. My mind is intact, and this could be fun. I have a twisted sense of humor, so you'll need one too!

  I know that what I've written here, seems a bit random with what I chose to say, but I chose here to converse about it because you know me well enough to interact with me, but not well enough to freak out about what I'm going through and the end result.

  The good news is that I'll be dead before the NL adopts the DH! -I told you, we need a twisted sense of humor here!