ALS/PMA through my art to help me

I feel grateful … I have tools at my reach to help me on this relentless road, but most importantly the mind has to stay positively active. This is not a condition to live alone with. It’s not just the “someone” to help move you and help you with your needs. One needs company, friendship, kindness,  understanding. 

To help me cope with the lacks, I’m using the images I saved form my art works on silk and writing… call it poems, grant it, I’m not a poet, just expressing my self to help me cope.

A rubber bang around my fingers.

Can’t take it off,

Can’t move.

Mind oh mind… what do I do ?

“Just feel the breeze”

Close you eyes,

It feels good against your face,

Hear the voice of  Elly Bell

“Abuelita”

Lovely sound !

…the rubber bang is gone

Proud to say "My friend"

I tried to find words to describe a true friend... and ended up with Thank you … Thank you... Thank you. I know the meaning of true friendship. I have a true friend.

Gracias

Gracias

La edad golpea.

Quedan Recuerdos, momentos que marcan.

No se entiende como esa edad va actuando

Y seguimos con nuestro amor egoísta aferrándonos a

Como fueron, como queremos seguir viendo a nuestros

Ancianos sin percatarnos o preocuparnos por lo que en realidad necesitan.

Cuando se nos presentan situaciones que nos incapacitan, nos limitan, nos asustan, con lo que no podemos luchar, comenzamos a ver todo de otra manera. No volvemos vulnerables, ansiosos por cariño porque sabemos que se va….. como los ancianos.

Tratamos de aferrarnos a la alegría, a la luz del día al rayo de sol, a la vida.

Pero, hoy doy gracias a quienes brindan….

Esa preocupación incondicional para aquellos seres “queridos” que viven en esa edad avanzada y aquellos con condiciones incapacitantes.

Por el apoyo incondicional para que vivan mejor.

Por velar, por ayudar, por desearles lo mejor y que vivan mejor, sobre todo cuando se dice “querer” cuando se dice “familia, sangre” cuando se quiere de verdad.

Gracias por la intención de desear brindar una mejor calidad de vida.

Gracias por valorar la familia…

Pero… de intenciones no se vive, si no con acciones y hay que poner en una balanza, que es  mas importante que nuestros seres queridos ?

Strong ?

My oh my

Life gives you lessons and then you know who cares and who doesn’t

Who’s there by you when in need

Who’s there when you are afraid

Who’s there when you are facing the inevitable

Who asks “How are you ?”

Who loves you

Who cares

My Mother "Mami"

Today at age 69 my 94 year old mother took care of me.

As I lay down, not knowing what was wrong with me, feeling I couldn’t hold myself up, no strength, weak, light headed, wishing this wasn’t happening, when I heard the tip tap of my mother’s cane and her voice wondering what was wrong with me and in her mind “my teenage‘s life long” headache. She walked in my room, sat by me wanting to get me better, help me. And... so she did. With her scarce vision she handed me a face towel, she went to get me alkazeltzer she thought would do me good or a pill or a sickness bag in case... and remained sitting by me asking the same thing over and over, trying to make me laugh.. until after a while she said goodnight with her blessings hoping I’d feel better. I didn’t even had strength to hug her !

I’m here for a reason. My plan, to look after her and have a good life. Could it be ? I’m trying to surround myself with positive energy.

Silence

So true....

DEVICES... TECHNOLOGY... GRATEFUL

TRILOGY  Trilogy is a mechanical ventilator that provides both volume and pressure ventilation and delivers the therapy either invasively (via a trach) or noninvasively (via a mask).  Advantages over bipap or avaps:  Can be more finely tuned to patient’s needs  Has an internal battery that can last up to 6 hours. Bipap and avaps do not have batteries- they must always be plugged into an outlet or with an adapter into the cigarette lighter in a car or hooked to a portable battery that weighs about 40 pounds.  Disadvantages over bipap and avaps:  More costly. Some insurance will not approve for non-invasive use unless the patient is nearly 100% dependent on it (20-24 hours per day).  More costly for hospice to pay for.

Summary All of these devices, when used non-invasively (with a mask), have limited ability to assist with breathing. As the respiratory muscles weaken due to ALS, even these devices cannot sustain life. They are all appropriate for hospice ALS patients, but cost may be the limiting factor for hospice particularly with the Trilogy.

I couldn't be more grateful….  lately I've been feeling tire, more than usual.. Sometimes is scary since I feel my breathing muscle are fading on me. Luckily for me... I got my Trilogy. Now I just  have to take two naps a day wearing my mask, as I call it "Hannibal Lester" … Got to get  humor in my life and keep my sun shining even when it rains... and believe me  IT Rains, pours, but then.... the sun always comes out.

Life is hard

ABBA : I Have A Dream, HD

WHO KNOWS

As my condition slowly progresses I'm becoming more and more drawn into finding ways to keep my mind active, enjoying what I love the most, which is my Art. My years as a Silk Artist will never be forgotten. Because of my MND (motor neuron disease) PMA (Progressive muscular atrophy) ALS (Amyotrophic lateral sclerosis - better know as Lou Gehrig's disease or thru the Bucket Challenge) my hands are weaker by the day, my arms don't seem to follow me. I'm slower and I get this unexpected reaction from my body and my mind says "what is going on"? Hey ! I never knew what it is to have a MND... new to me, so everything I feel, everything my body is signaling is a learning experience. I keep repeating the expression " Oops!" why ? because suddenly I stumble, because my foot (specially my left) doesn't move for seconds, because in my "clumsiness" I end up bumping into things, because I loose balance... those are things new to me and then... "Oops"

I am know doing and inventory of all the images I created during my years as a Silk Artist and as I do that I am designing "Note cards" with them. I added a Store "who knows" in my website www.thesunandALS.com". All this is helping me forget about ALS-PMS-MND which nothing will stop and focus on something else, keep myself creative, busy and very active.

Let's keep hoping ALS awareness helps "Research" find some light to fight this relentless conditions "some of us get and no one wants"... find answers and solutions.

May the sun keep shining for us all !

Florida ALS Clinics

Florida ALS Clinics: Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.

Three years ago today

Three years ago today !

.... what a mess ! My life changed completely...

it had slowly changed by me giving up my love, my passion, by far my greatest project “art on silk” my own “handsOnSilk”.

.....my work was not coming out good enough... Feb 2014 I left the gallery with the hope I would come back. Some therapy, some hand surgery, something would help me get back ... what a mess... !

May 6 2015..... test after test... lab after lab... Hey ! Is not on your head ! Hey... you are not putting up a show.. “you have a Motor Neuron Desease” ALS

Three years have gone by... today I feel my slow progression is building up speed and is time for me to slow down 😢