Nunc Coepi

                                                                                                                  Click to Signup Latest on my condition after a few doctor visits this month. I went to my 4 month ALS medical team follow-up to assess my disease progression and determine what assistance I might need at this time.  The way they determine progression is through a scoring system that is mostly based on my answering their questions on what I am and am not able to do on my own.  I give my subjective answers and then they do their best to assess what number that should be assigned on the score sheet using the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). Questio...

Click to Signup Before I start this reflection, let me just say that I've noticed in my correspondence that I tend to use beautiful, amazing, dear, incredible, and so on a whole lot in describing my friends and so from now on I'll just say "friend" and you are safe to assume that those adjectives apply unless I intentionally lead it with a nasty descriptor. So a friend sent an email after reading my blog and from his response I could see that some of the facts of this journey can still be tough to take in, and tough for me to keep lighthearted at all times and for everyone.   I can even understand that lightheartedness might offend someone who is going through their own struggles and hearing things that may sound like "we all need to just pull ourselves up and get a positive attitude" is not gonna be helpful.  I seriously doubt that I have ever been able to pick myself up from any struggle.  The best I can do is to stop resisting the love and assistance comi...

It's been 6 weeks and three attempts to conquer a recurring infection around the feeding tube incision but once I stopped trying to be a nurse and let Patti take it over, all is good.  No fevers and so it was more about discomfort than any real danger. I went to see my pulmonologist/drinking buddy, Dr. Juan Garcia, last week for my 6 month breathing test and the numbers are getting a bit worse.  Worst part is that I also had to confess to not being good about using my inhaler daily once winter congestion season passed.  That conversation was more uncomfortable than the incision infections.  I now understand how his daughters are such good people after experiencing his look of disappointment for myself.  They all acknowledged having seen it "a few times" in their teen years. So the lessons are to let the nurse be the nurse and always follow directions from your drinking buddy...I mean doctor. Next week, I will go to my 4-6 month checkup with the ALS clinic. ...