Blog

     ALS SUCKS!!  There is no doubt about that.   No need to even try to sugar coat it.   It is relentless in just taking.  Life doesn’t stop for it. So what do we do?  We have to keep moving forward.   All of us have different ways of coping.   Some people find their peace and roll with it.   Still, others cave and never really recover.   Many fall somewhere in between.

     I feel like I have found a nice acceptance of what life has laid before me.   I have always been a clown and that really hasn’t changed.   I truly believe in the power of laughter.   This also goes along with my belief that a positive mindset can make a difference in longevity and quality of life.   So, I find humor in almost any circumstance.   That is not to say that I make light of the seriousness of this disease.   I just refuse to live my life with a perpetual frown upon my face.   ALS robs us of enough.   I am keeping this for me !

     If we can’t enjoy the short time we are here, what’s the fun in that?   It does wonders for my well being and the well being of those around me.   We often laugh at the most ridiculous things.   For instance, I have a propensity to create havoc in small areas with my power wheelchair.   There are countless exam rooms that have succumbed to my monster truck wheelchair!  My wife seems to find joy in comparing my turns when walking to that of an elephant !  Picture how an elephant turns around… slowly, deliberately and one step at a time.   Geez!  My daughter insists on antagonizing  me because I have to be creative with gesturing to indicate where I am pointing while giving direction in doing something.   That typically consists of pointing with my nose, head or a hard stare. Usually while she is chuckling “Where? Where?”  Of course I then laugh in frustration. 

     Those are just a couple of examples of how I cope with this debilitating disease.   I have many more instances, but many are probably not appropriate to disclose publicly.   I know that not everyone can cope with adversity through humor  and that is perfectly ok.   My point is simply that there is still life to be lived with ALS.   We can still enjoy our lives to the fullest if we set our minds to that ideal.   ALS may eventually take the smile from my face , but if I can do anything about it , it won’t steal the smile from my heart !