Nunc Coepi

        Click to Signup It's taken awhile to get to this post mostly because this has been a tough month not to be lazy. First, there were no doctor visits with official results to report on and second, I like being lazy. Good news is that any discomfort from my March feeding tube surgery and related infections are finally gone. Great relief.   Bad news is my sleep has been pretty terrible.   Diaphragm, head, and neck muscles are getting a little weaker and so for the last few days I’ve been sleeping in a recliner to keep my head elevated which is more comfortable for me .  Apple Watch gave me high sleep score for two nights in a row.  Hopefully this continues and I see higher energy level for blogging and other activities. An unexpected problem came up with my vision last week which might be a side effect of a drug i was taking to control excessive drool or perhaps it’s related to the ALS muscle twitching I’ve been getting near that left eye...

                                                                                                                  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. ...

On Monday, Stephanie Bahr's daughter let us know that her mom had passed away after a 2 year struggle with cancer.  Her husband, Howard died almost 2 1/2 years ago, also from cancer.  My condolences to their children and grandchildren and all who knew these fine people. Many of those reading this worked with Howard, Stephanie, and their son Tom.   Stephanie was living in California with her daughter's family for most of time since we lost Howard.  She was diagnosed with a brain tumor just a few months after Howard’s passing. What a blessing for her to have her children and grandchildren with her for that time.   After her diagnosis, she joked that Howard was just pushing to get her up there to help straighten up his cloud.  I don’t remember Howard being particularly messy but I’m sure Stephanie was the one who decorated their lovely home.  Aside from lacking the skills for keeping his cloud in order, Howard was a friend that I often relied on to come s...

If you haven't done so already, I recommend that you read the About Our Blog page  first. It began Spring 2023 - Patti retired as a nurse (so she thought) and I developed a very subtle slur. Fall 2023 - I saw a neurologist but he didn't see enough to come up with a diagnose and asked that I return when things got worse.  Patti, by then, had already suspected ALS (damn her diagnostic skills). January 2025 - Things got worse by summer 2024 and when I was able to see a doctor in January, he told us that more tests were needed but he was confident it was ALS. July 2025 - I was referred to one of the top ALS clinics in the country.  It was with UT Medicine with the rest of my doctors and only two miles down the road from our house.  Dr. Carlayne Jackson let me know that I have a type of Lou Gehrig's disease called Bulbar Onset ALS which affects the muscles of the head, neck, and diaphragm first.  Like the more common ALS, which starts with the limbs, nobody know...