Help Me To Help Joe: A Families Story Of Life With ALS

I struggled a bit with the words on such an emotional subject, so please bear with me…

In 2014, The Ice Bucket Challenge invaded every aspect of the World Wide Web particularly in the realm of social media.  Everyone was inspired to raise awareness and more importantly money for ALS. (Also known as Lou Gehrig’s Disease) a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As of today even with all the money and awareness raised we are still without a cure.  While much funding was raised through such an effort, in reality many people with ALS struggle with the overwhelming financial burden placed on themselves and their families because of their illness everyday.

Just imagine little bits of your life being chipped away and the body which once carried you through life’s journeys begins to betray you.  You require constant care and help from others.  That is the reality of ALS.

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This wicked disease slowly deprives a person of the things that reap quality of life.  The arms you hug with, the hands you write, and create with, the legs that carry you through your life.  Even the lungs you breathe the air with.  To have just one of these things taken from you is hard to accept.

2015, proved to be a difficult year for me.  I suffered a severe shoulder injury and loss the use of my right hand, and arm for a period of about 4 weeks.   I had just a small taste of what it was like to lose just one of those things.  I am a fiercely independent person and I struggled emotionally with the fact that I had to depend on others to do certain tasks.  My life and daily routine became severely disrupted.  I was in a state of constant anxiety and worry.  I didn’t handle things as well as I should have.  It was a lesson I had to learn.  In life things don’t always go as planned.  It really is about how you react to all those curve balls.  It’s about the spirit in which you carry yourself and fight on and face the challenges.  No one has done that with more strength and courage then my friend and colleague Donna and her husband Joe.    Joe was diagnosed with ALS in 2012.  The disease progressed fairly rapidly and as of today, he has very little use of his body from the neck down.  It severely affected his lungs and early on he required a ventilator to breathe.  This requires around the clock nursing and care.  Despite the most severe of challenges Joe and Donna continue to create a life with what has been dealt to them.  Always pleasant and kind Donna approached everything with a smile despite all that she was going through.   Joe is thankful he got to see his 11th grandchild even though he couldn’t reach out his arms to hold her, He was still there in the moment with his family.  His mind is still vibrant and alive.  He is able to communicate with his loved ones.   Appreciating every moment despite the tragedies he could have allowed to break him.  I wish I had a just a morsel of that kind of strength.   For Donna and Joe the everyday challenges are overwhelming.

Just when it seemed it couldn’t get any worse….it did.  In 2013 the union that Joe worked for and received his benefits from decided to change its plan.  Despite promising Joe that his 27 year career would be enough to guarantee a lifetime of healthcare they cut his benefits for his nursing which would require him to go into hospice.  Donna and Joe fought hard and had their case go before a federal court, and lost.  The judge agreed this was deplorable, and promises were clearly violated, but the union broke no laws and subsequently there was nothing that could be done.

But that is where he was wrong.  There is something we can do.  Just like the Ice Bucket challenge, the internet has proved to bring people together in large numbers and sometimes even for the greater good.  I am hoping this can happen here for my friend, even if writing this can generate just one more dollar to help Joe reach his goals, or one person willing to share his story with others through social media it is all worth it.  In his own words, he just wants the opportunity to make more memories.  It’s also important to fight against the unfair elements of his story and so many others faced with life changing health issues.  No family should have to be forced to give up their life even more imprtant quality of life.

No one expresses this better than Joe himself.  For that reason, I urge you to watch this video.  In it Joe tells you in his own words what his life is worth to him as it is to all of us.  It means EVERYTHING.

Because where there is life, there is still hope.

If you can help, there is a Go Fund Me  site set up on behalf of Joe. Even if you cannot donate at this time, I ask that you spread the word.  A lot of good things can happen when things go viral.  Please help me help Joe to reach his goals.   He deserves to bask in what we all tend to take for granted everyday our memories.

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