Sunday, June 25, 2017

From Mayo to Uhealth

I had the most wonderful experience at Mayo clinic in Jacksonville. Doctors are excellent, nurses kind, service amazing not a thing to complaint. Unfortunately it's too far for the boys to drive me back and forth to appointments so, having Uhealth Miami which is only an hour away, it was unanimously decided to transfer, and so..... I did

Today I feel good ! When I was first diagnosed with MND, just like I'm sure most of those who received the news, I said in disbelief "me ? out of so many ? and Life went on... This week I transfered from Mayo clinic in Jacksonville Fl to Uhealth Miami, just because is closer for my boys to drive me there, It went good and I was confirmed again,  I''m still in a slow progression after close to 7 years from my first symptoms. I'm still independent and again I say to myself "Me"! this time feeling lucky among a few. More time to fight, more time to enjoy life, more time to appreciate the good and learn from the bad.

Friday, June 2, 2017

Slow Progression.... what does it mean ?

Nothing is more painful than fading away day by day while you watch helplessly.
And then ...... doing all I can to stay positive enjoying happiness life has gracefully put at my hands for me to reach... and reaching I am ! It also helps me stay away from the fading away day by day which only I seem to understand.....  Yet can't ask those who are not in my shoes who I understand love me dearly, to understand.  Why can't things be easier ? or is it that I just need to say:

Thursday, June 1, 2017

Sad feelings strike.....

Liz a beautiful Lady

Today I feel sad..... Recently I started to follow Liz's Blog. A blog full of encouragement of helpful tools to all of us facing this relentless disease which surprises us in different forms every so often. I felt I could identified my self with Liz, full of joy, looking at life the way I see it, finding the good in everything and trying to turn around those dark resentful negative feelings, people often bring afloat. Yes, life can be good even under a storm. I felt so excited about following her writings and have some way of comparison and the though of "I'm not alone" ....  I asked her husband Alan to allow me to  be part of their group MDN Together  and luckily I joined the group only to find Liz passed away last November and her husband keeps the group alive.  It's sad to hear she's not longer with us but I'm sure she is finally resting !  But then.... Uncertainty afloats.... My favorite collection of paintings back in my days as an artist and not even close to learning  MND/ALS existed   comes to mind.