Try Harder... You can do it..

There is no such a thing with ALS/MND. How more useless can someone feel !

There is not getting better, there is no: " if  you try you'll be able to do it. " 

How can I make people understand ALS is a relentless condition and research is slow. 

I am eager to hug and be hugged and feel the warmth of an embrace, because one day sooner or later and I know is coming,  I wont be able to. My arms wont respond. I can't try,  who am I kidding ? Should I just call it "quits" and just wait 'till the time comes ?... I can't show myself as tough any more.... or should I ? that would be deceiving !

Let it be

I spend great part of my time brainstorming. I ask myself "How am I doing?"  What's going to happen ? How is it going to be ?   How do I hold on tight not to let go ?   How do I make it last ?  How do I stop the inevitable?  I want to use my time, I want to grasp the last drop of energy and live it to its fullest.... 

I want to stay Happy until my last breath.. I've learned there are beautiful things in life.... and I also learned...  laughter, friends...true friends  which I so long wished for and have, are priceless.

A friend told me..."sign of long life"  Please let it be...

Tire, Slow, Burden....

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.

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:

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.

 

 

 

Michael Bublé ★ "Close Your Eyes"

RADICAVA FAQ

RADICAVA FAQ: Learn how you can help The ALS Association advance scientific research to find a cure for ALS, provide resources for people with ALS and their loved ones, heighten awareness of the nature of the disease, and encourage government leaders to expand their support of research and patient care.

"Lay Down Beside Me" - Alison Krauss with John Waite

Homepage - ALS Association

Homepage - ALS Association: Learn how you can help The ALS Association advance scientific research to find a cure for ALS, provide resources for people with ALS and their loved ones, heighten awareness of the nature of the disease, and encourage government leaders to expand their support of research and patient care.

ALS Experts: Keep the Weight On

ALS Experts: Keep the Weight On: ALS Experts: Keep the Weight On

I feel a need to protect my Energy and enjoy life while I can

 I once watched Dr. William Tollefson giving a lecture years ago in Cocoa..about survival, energy, recovery, healing ... Years later I feel the need to grab onto my energy to enjoy  the years of life my Slow Progression with ALS is granting me... I have a beautiful family whom have filled my life and still do... but at my age.. and empty nest applies... Seniors go to the experience of facing an empty nest... I, on the other hand... experienced and empty nest in troubled waters... left the troubled waters and faced a different scenario..:. happy times and ALS...Time went by... life went on and suddenly out of the blue, lucky for me... life played tricks on me... made me enjoy life in a different way... what can I say... I'm faced in between ALS... happy times and empty nest... I'll be fine with an Empty nest because the birds flew to better places and grasped their own happiness... Happy times, oh  my oh my.. I'm facing it and I don't want to loose it.. ALS, no one can stop it... why drain my energy instead of saving energy.. 

"To protect your own energy, here are 18 permissions you should adopt to be healthy and have a good supply of personal energy.
  
 - To protect my energy, you are allowed by treating yourself first 

  - To protect my energy, you are allowed to protect yourself

  - To protect my energy, you are allowed to change beliefs

  - To protect my energy, you are allowed to believe in yourself 

  - To protect my energy, you are allowed to be committed to yourself first

  - To protect my energy, you are allowed to spend a day with yourself

  - To protect my energy, you are allowed to not to fulfill others expectations

  - To protect my energy, you are allowed to not share yourself

  - To protect my energy, you are allowed to not seek others validation

  - To protect my energy, you are allowed to do nothing

  - To protect my energy, you are allowed to spend time alone

  - To protect my energy, you are allowed to sleep in 

  - To protect my energy, you are allowed to find your voice and express pinions

  - To protect my energy, you are allowed to move forward

  - To protect my energy, you are allowed to embrace yourself

  - To protect my energy, you are allowed to change
​
  - To protect my energy, you are allowed to be mindful

Homepage - ALS Association

Homepage - ALS Association: Learn how you can help The ALS Association advance scientific research to find a cure for ALS, provide resources for people with ALS and their loved ones, heighten awareness of the nature of the disease, and encourage government leaders to expand their support of research and patient care.