Blog

     One thing I can say is that I have met some amazing people while facing ALS.  I only wish it were under better circumstances.  Oh well, we make lemonade, right?!

     Whether it is at ALS clinic, support group or at the at the annual ALS walk, there are ample opportunities to meet others who share many of the same challenges.   Even on social media!  I always make a point to reach out to others whenever I can.   I especially make an effort to make contact with those who may be newly diagnosed.   I can remember how lonely, scared, confused and overwhelmed I was in the beginning.   Not that it ever completely goes away but it  is slightly less daunting to me now.  Let me emphasize slightly. 

     It is so inspiring to me to see the resilience and strength of pALS and their support system.     I believe that as a community we can all be a part of that support.  No one understands our strife better to than us.   We have to be willing to shed the shroud of secrecy that is keeping ALS on the fringes.   We can do that by engaging with others.  Don’t be afraid to participate in activities that put you in touch with others.   Whenever I go to clinic, I always share my story and have a smile on my face.   Inevitably, I almost always have someone start asking me questions and I happily oblige them for as long as I can.  I have met some really neat people this way. 

     Among the people I have met are some of the most caring and compassionate professionals.  They often get overlooked, but they truly play a huge role in my life.   They are my problem solvers and often our reassurance. Between my VA team and my civilian team, they keep me battle ready. They are truly special people.   I am trying to keep this post light, but let me get real here.   Let this sink in.   Every medical professional or outreach person we work with in regards to ALS;  they do their job knowing that each and every one of us are going to die despite their efforts.   I  think it has to take a special individual to do that. 

     So, that brings me to this.   You never know who you are going to meet where.  I participate on a forum on a website called  Patients Like Me.   If you haven’t checked it out you should.  Anyways, a little over a year ago, a gentleman reached out to me because he saw that I was a veteran and that I had mentioned in a post that I was seeing a certain doctor whom he would soon be consulting with. I replied to him quickly as I knew that meant he was living in the same area of the state.  Of course, the way things are these days, you do so accepting a certain risk.  Long story short, the chance paid off !  We spoke over the phone a couple of times and eventually were able to meet each others family and have been great friends since.  We keep in contact often and consider each other brothers in this fight. 

     As shitty as ALS is, I have to say I have gotten to cross paths with some of the best people on the planet !