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!


  1. My mom was officially diagnosed with ALS on Wednesday. She is very deep into the disease and I expect we won't have her for much longer. ... Can't say I know what you're going through but I've observed my mom for the last year, so I know some stuff. If you ever want to share, I'm here.

    1. Oh dear, I am so sorry to hear this. If you ever want to talk, I am here for you as well. Bulbar onset? Big hug!

  2. Sorry to see this news. Best wishes!

  3. I'm so sorry to hear this. That's a tough hand to be dealt but thank you for sharing with the community. Sending lots of love to you and your family.

  4. Damn. Best of luck through it all. Not sure if you've seen the movie Gleason. I think there was a point in the movie where he struggled with similar choice. Good film either way though it might be too real at the moment.

  5. glad you are still able to share here. I did email you after your last post but think perhaps you didn't see it. wishing you peace, Namaste'.

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