Blog

     I would like to round out my Tools of the Trade entries, as well as shine some light on a major topic.  The financial burden of living with a terminal illness like AL$. As I have done before, I will make mention that I am very, very fortunate to have veteran benefits.  The reason I do this is because I want my readers to be very clear that my unique experience does not portray the average American dealing with this disease when it comes to particular aspects.  However, the majority of the journey is relatable across the board. 

     Back to the task at hand.  If you have followed me for any time, you can see that life with ALS is quite complex and ever evolving.  From medication to equipment and alteration to my environment , the costs add up.   I know that my out of pocket is largely negated, but I do extensive research into every aspect of my life with ALS.  The numbers are quite easy to tally.  And they are staggering.  The dollar amount that is often assigned is roughly a quarter of a million dollars per year ! Who the hell has $250,000 just to spend on ALS?! 

      Unfortunately,  for most, this is the mountain they face.  There is help available, but often it is minimal and limited and largely inadequate.  It saddens me to hear the struggles of my fellow pALS and cALS.  Many fighting tooth and nail to receive essential needs.  Insurance, Medicare, Social Security.  All adding to the stress of managing an already overwhelmed situation.  I have heard countless stories of marriages and relationships succumbing to the weight of the gravity of this disease.  As needs increase with the progression of symptoms, the requirements of care skyrocket.  Families are pushed to make life changing decisions such as whether or not a spouse will continue working in order to care for the loved one. 

     I believe that disease mortality is directly affected by the ability to obtain vital care. Can you imagine choosing to die because you can’t “afford” to live?  Well it is a sad reality for many with ALS.   It just is not fair that folks have to have the worry of things like losing their home or having to get a divorce just to be eligible for benefits.

     That brings me to this:  the unquantifiable cost.  The emotional toll that ALS exacts on its victims.  The financial burden only exacerbates the mental burden. The family trying to come to terms with the dire prognosis.  Watching a loved one whither away with absolutely no hope. Young children seeing mom or dad die before them.  Couples plans for the future dashed.  It is a high price to pay. It is not easy to face the day when you are the center of this.  None of choose to have ALS, but here we are.  How much am I willing to endure?  How much am I comfortable placing on my family? It is a struggle to the very end. 

     I will end with this.  I am forever grateful for every day that I draw breath.  I hope that when all is said and done , those I leave behind will say that it was all worth the cost.