Perspective is almost everything.  Half empty or half full.  That goes with almost every situation and circumstance.  In my condition now I don't mind things as much as when it first started happening.  Example: I'd wake up really early like 4:00 am with the strongest urge to poop.  No warning just the 11th hour urge.  I had no chance of making it to the bathroom with my stiffness and difficulty getting out of bed.  So there it is, MSA rears its ugly head.   But I don't pay too much mind to it anymore.  Too many  more important things going on today and every day.  Life, family, friendships especially the one with  my savior Jesus.  He gave me a real angel in  my wife.  Too much to be grateful for.

     Today, March 1st, is the beginning of the March Awareness Month for MSA.  As many of you already know, this is a rare disease with no cure.  Partly due to the lack of funding for research.  This March marks the 4th annual Multiple System Atrophy Awareness Month. Miracles for MSA urgently request public support to create greater awareness of the need for research funding to aid in discovering the cause and cure of this fatal neurological disease. 

       Miracles for MSA request public support in spreading the word about this rare and fatal neurological disease and the desperate need for research. Time is running out for those currently diagnosed.

here are some links.

 http://www.msaawareness.org/

http://www.prlog.org/12062758-march-is-multiple-system-atrophy-awareness-month.html

     Please just take the time this month to post and spread the word, the links to friends and family so that somehow we can find a miracle.  And as always thank you for your support.

     Again, we've been deferred for many obvious reasons of posting and updating our blog.  So here we go again.
     Lately, it seems that the MSA is taking a back seat to my heart as well as the excruciating and debilitating pain I've been experiencing.  The pain is in my neck shoots down to both arms.  I've recently visited a pain management doctor because my primary physician can't seem to be able to manage the pain.  I've taken cortisone shots, in my shoulder and neck--to no avail.  The most recent has been now morphine which basically seems to take the edge off but it causes me to have difficulty breathing at night.  My tongue has been somewhat swollen and I suffer from dry mouth.
     As for my heart, after an echocardiogram and blood work it seems that my heart remains pretty much unchanged from pre-op except for the repaired mitral valve.  My heart is still not working at our desired capacity of 45-55% (which is the norm) and it shows that the heart is still enlarged.  My new heart specialist feels that we should start these new meds so as to improve the condition of my heart.  The desired effects will not be known for at least 3 months.

Dear Friends and Family,

            Normally, we just send out a Christmas card but this year things were a little different so we decided to change things up and send out this note instead. 

            We’ve celebrated Jessica’s 16^th birthday.  That was a very special day for all of us here and we were very grateful for all of you that attended. 

            This year Isabella started Kindergarten.  She’s done amazingly.  Her teacher says she’s very bright and hardly ever has to explain the work to her.  However, her teacher does complain that she doesn’t finish her own work because she’s too busy helping her classmates with theirs.  She’s too much.

            Christopher continues to excel in school.  Though he was a little behind, his scores on the state’s exams are OK considering his difficulties. One of his most special skills is that he is a powerful swimmer.  He has no problem getting through the waves and out past the breaks.  It is amazing and fun to watch.  Two summers ago (2011) we stood at the Jersey shore (thanks to Kenny and Christine) until the last day before we had to evacuate because of Hurricane Irene.  Chris was still able handled the waves and swam.  I tried but I got wacked.  The wave pulled me down and then out, then to the shore, I get pulled back out to the water again; this happened back and forth three times.  And throughout the whole time I hear Chris laughing the most hearty laugh I’ve ever heard from him.  Then he tells me after I finally escape the wrath of the waves, “do it again!!”

            Sylvia was tested beyond comprehension this year.  On top of her responsibilities as mom and homemaker, she became the house custodian, landscaper, grocery shopper and part time nurse and gopher.  And now she’s a contractor; she oversaw about a ten-member crew to successfully upgrade the house to meet my handicap needs.  Before that she organized a very enjoyable fundraiser without ever having the experience doing one before.  Throughout all this she maintains her advocate label for the medical and educational needs of her family.

            My year was a bit quirky.  Aside from my illness, I had to have open-heart surgery and I came out of it a bit psychotic.  I actually kicked two nurses because I thought they were trying to kill me off in a way that would look like I did it to myself. I had so much pain medication that I started hallucinating.  It was like I was on LSD.              Now its Christmas, our favorite time of year. We eat great food, share fond memories and stories and forged stronger bonds with our friends and love ones.   We do this in part to honor the birth of our savior, Jesus Christ. 

We’d like dedicate this Christmas to our very special sister and wife to John Caban, Elsie Caban.   A truly loving and thoughtful woman.  A woman who made us all feel

special and unique with her gift giving perfection. Elsie didn’t give you the most exquisite looking gift because you were someone of stature; she did them her way because we all were persons of stature to her. Gift giving holidays with be lacking from now on.  Rest in sweet Peace, Elsie, we love you.