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 strongg

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