Saturday, June 30, 2012

Last Day Of June, But Never The Last Day Of MG

In one of my support groups online we are blessed to have a friend named Cyndi.  Her husband Joe, had MG.  Sadly, I didn't know Cyndi before Joe passed away.  This is Joe's Story in her own words.
Thanks, Cyndi, for sharing this with us!

"On April 26th, 2006, my husband, who was a professional bus driver, was driving his bus on his regular route when suddenly everything became blurry and his vision had become doubled. He called his office to ask that someone come and take over his route. That was the last time he ever drove.

The next day his sight was no better, so we went to see our PCP who referred him to his neurologist. At our visit 3 days later, we learned that he had Myasthenia Gravis. We had never heard of this neuromuscular disease. No one in his family had a neuromuscular disease. We would learn over the next five and a half years just how devastating & debilitating this disease was.

I’ll never forget the spirit Joe had throughout the first few yrs. When his first crisis hit 2 weeks after the vision changes, he was rushed to Boston (as our local hospital wasn’t equipped to give him the care or treatment he need) for what would become his second home for those years after he was diagnosed. The morning after he was admitted, I walked into his room and his first words to me were, “I am one of Jerry’s Kids!” Sadly, yes he had become one of Jerry’s Kids. {editorial note:  MG falls under the "umbrella" of the Muscular Dystrophy Association (MDA)}

Over the following months and years, Joe would go through too many crises to count where we thought we would lose him. He would be unable to breathe, talk, eventually unable to walk unassisted. He fell and ended up with a double compound fracture of his lower leg. The disease was winning and destroying his muscles. 

He spent many weeks & months in the hospital or rehab. His spirit was starting to break; he was losing his independence and started needing help with the simplest things that needed to be done around the house.
He had Plasmapheresis treatments several times a year over those five and a half years which kept him alive.
During that time he went from walking unassisted to walking with a cane, then with a walker; he could no longer use stairs (and we had to have a ramp built) then to a power wheel chair last summer. He was no longer able to walk more than a few feet with assistance.

Fast forward to last September; Joe went into a major crisis, which he never came out of. By now, he was so weak he could barely talk clearly, breathing was so difficult as his diaphragm was too weak for him to take deep breaths which helps to remove the CO2 from his lungs. Plasmapheresis was no longer helping. Sadly, with the increased CO2 in his lungs, his brain wasn’t getting enough oxygen. Sadly, this led to irreversible brain damage.

Joe could no longer do anything for himself. At that time he was moved to a rehab, as sadly we could no longer care for him at home. He could no longer cough; He got aspiration pneumonia, he could no longer breathe without a bipap machine. He was no longer able to feed himself as he had forgotten how to swallow.

We knew then that Myasthenia Gravis had won.

Sadly in his last few days he didn’t know who our sons or I were, though God Bless him, he would try to remember our names and became frustrated when he couldn’t. This broke our hearts as we were losing the husband and father that we knew and loved.

On the evening of Nov. 22nd 2011 our sons, family, friends spent their final evening with Joe. Our son and a friend sang his favorite songs to him, during which Joe would look around as if he recognized them. Everyone left that evening knowing that they probably would not see Joe again.

I stayed with him that night--around midnight he slipped into a coma and thankfully & peacefully passed away at 4:40 a.m. on November 23, 2011. He was no longer suffering from this devastating disease called Myasthenia Gravis.


Couldn't have said it better myself.  Today is the last day of National Myasthenia Gravis Awareness Month.  But until we have a cure, there will never be a "last day" for Myasthenia Gravis.

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