So, here we are. It has been 5 months post trache and things are going well. It was a little bumpy for a bit. As is common, I ended up with a bout of pneumonia. Almost everyone gets it right after the procedure. A few days in the hospital and it was taken care of. Then, not long after that, a bacterial infection. Thankfully, a round of antibiotics took care of it. From then on it has been pretty quiet.      As I said in my last post, my adventure with getting the trache was indeed that. The craziest thing was that during the recovery, Texas experienced a p ..read more

     Today marks 4 weeks since I had the procedure to place a tracheostomy tube. Boy, has it been quite the adventure. Let’s talk about it.  I made it just over five years before having this procedure. Many people choose to forgo getting a trache for different reasons. Care requirements increase significantly. Procedure is demanding. The feeling of being a burden. Fear of dependence on machines to sustain life. Quality of life concerns. While I don’t agree with all of the arguments , I do believe they are all valid. I weighed all of my concerns heavily and carefully. I h ..read more

     ALS is quite fond of throwing a wrench in plans. You think you have a good plan in place and ALS decides to plop a big ol’ stinker in your path. The worst part is , there is no getting around it. You gotta’ roll up your pants and step right in.       That is where I am right now and it is confusing. Since the beginning of my journey, I have made it a point to plan ahead. To always try to keep ahead of the game. Financial planning, legal planning, medical planning…you name it. I think I have done a decent job.       One situation ha ..read more

     The disease of loss.  It takes and takes from everyone it touches. There is very little that this disease gives besides heartbreak. Among the losses we face individually , loss of function , independence and dignity to name a few.  There is the ultimate loss:  LIFE.  This has been on my mind quite often of late.  As in my last entry , my own physical status has me ruminating my own mortality.  Late last week brought the sad news of the loss of a fellow advocate and friend.  While death is a given in this brutal disease , some passings a ..read more

     It has been a minute. Don’t fret. I am still here. Living the Covid life. Last time you heard from me , we were only a couple of months into the pandemic. It is still a crazy time , but some things are returning to a semblance of normal.      I have been doing my best to keep safe. That equates to being stuck at home for the most part. I have gotten out a handful of times , but I am ready to get back to full normal. It gets old watching TV and surfing the web. Even so , I have been keeping myself busy. Projects at the house , I Am ALS committees ..read more

     We all have fear.  Everyone.  Anyone who says otherwise is lying.  I have fears. I do my best to face them.  There is no shame in it.      The current pandemic really got me thinking about this topic. It has been a strange couple of months since all of this broke out.  As I have previously stated, it has been a legitimate concern.  We are taking all the precaution necessary.  But, at some point we will have to resume normal living.  I am a bit apprehensive.  The fear of contracting Covid is something I will have ..read more

     Life in a box. Right now , the world is seeing a story unfold unlike any seen before.  Plagues have traveled the earth in times past.  However, the immediate coverage and response is unprecedented.  As with many other major event , life will undoubtedly change after all is said and done.        Here in the US, much of the country has come to a standstill.  Most cities and towns have implemented some form of “stay at home” order.  People are asked to avoid contact with others outside of the home.  I really don’t have ..read more

     We come from all over. Different backgrounds. Different life experiences. Different ALS experiences. All of our stories are endearing.       I would like to take a few moments to just share a few blogs of fellow ALS warriors that inspire me.  There are countless stories out there , and you should take some time to look into them.  They exemplify the strength and the struggles of us all. They are beacons of positivity.       Sunny Erasmus . https://sunnystrong.com/ You would be hard pressed to find a more energetic an ..read more

     We have two choices.  Give in.  Or just keep fighting.  I think it is pretty obvious which choice I have made.  I find no fault in either, though.  I would like to think that most people choose the latter, but understand that it is a deeply personal decision.       When I was diagnosed, I decided that I wanted to show my wife and children that we should be resilient.  I hope to instill in them the virtue of not giving up when the cards are stacked against you.  It is not easy !  I will not win every battle , but ..read more

     This disease is draining.  It is relentless.  It takes a tremendous amount of energy to even try to keep pace in the fight.  It is a constantly opening race.  One must dig deep.       I am running low on fuel these days.  This is not uncommon for me.  My life is a perpetual ALS roller coaster. There are so many factors that affect where we are on this hellride.  I do my best to navigate these obstacles, but the wear catches up.       I have these bouts of no motivation.  I am sure it is just ..read more