Wednesday, February 3, 2021

Not giving up

 Into February 2021... I decided I can't give up, I'm brain storming with so many ideas to put in place while I see and feel myself slowly loosing my independence.  My voice is fading, I can't work on my interpretation that much and petty cash is important. So, I'm reactivating my site with note cards, and at the same time trying to create awareness of ALS - Lou Gehry's disease - a motor neuron disease which fast or slow, leave you unable to move.  This is my project... I will not give up !




Saturday, January 30, 2021

 January 2021

And so...a new year! Slowly progressing still with lots to keep me entertain. Covid is causing the usual mess all over the world but there's always "the hope" for the better as is everything else that consumes us.

My voice is bothering me, can't talk much without making a high pitch sound and loosing it. I don't talk much... I'll try to focus  in my Tobii Dynavox and try to type with my eyes and I will continue to express my thoughts.

In the meantime, I’ve been slightly on a down slope 😌

missing getting in the kitchen... chopping garlic, onions, tomatoes, peppers, cooking, eating and drinking with some “glamour”... a zippy cup will do. Back to my projects in my website! Hope to really launch it “big”



Friday, January 29, 2021

  

November 2020...   Do I ?
Do I miss the days when I would jump out of bed, full of energy with my day ahead all planned up with activities ? 
Of course I do, who wouldn't . First part of the day , after showering, brushing and dressing... going to my workshop,, just to see  how my silk art work, from the day before, worked its way through the night. It was just Amazing !
today is today... I dread the morning, my first task, taking off the mask, I call it Hannibal... what a hassle.
Now, getting up... No wonder I identify myself with a Sloth... exactly!   Do I want to take a shower ? Do I want to dress for the day and get out of the Pj ..hum... exhausting. 

So, after staring at the ceiling for a while, looking at all the pictures, hangings around my walls which make me smile, I simple say to my self..."there's something good in every day"

 October 2020... Luckily for me, I'm within a 20% of ALS patients with  slow progression, and slow  it is,  I do as much as I can while I still can. I  love all the "toys" available for this and many other diseases alike and I'm taking advantage of them. I love riding in my scooter or portable electric chair to go  window shopping and feeling the air, the sun... my walker is not helping much but I'm sure glad I had it.

 July 2020...  “You have the power over your mind – not outside events. Realize this, and you will find strength.”~ Marcus Aurelius.

 Jan 2020... It's hard to walk, can't let go of my walker. I feel bricks inside  pulling me down.  Everything has changed,  physical independence fades, but I'm still me.​

Today, my dreams are in my art work, in my memories. I write what I feel and through my writings I get strength.
So, moving forward.. I need to make my sun shine... day by day. ...
The best project I will ever work  on .... is Me...
art and music, the best medicine to stay strong
g