Elena Tuero's Gallery
God, please give me the strength to go on..
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Habla Hispana: www.maldeparkinson.org
BLANK CANVAS - WINTER 2004
I never knew I could paint.
For me, it was a good day if I could just feed myself or take a few steps without falling.
When you have Parkinson's disease, the idea of picking up a paintbrush is as remote as entering a figure skating competition.
Now I paint constantly: landscapes, abstracts, still-life studies and my favorite: fat ballerinas. In all, I have completed more than 70+ paintings in the few months since my DBS brain surgery (June 24, 2003) and ordering my first set of blank canvasses.
Some have remarked that I am making up for lost time, and that is certainly true. The last 17 years of my life have been spent in a losing battle with a disease that gradually stole my most basic capabilities, all during a time when I was struggling to raise two daughters as a single parent. Through the years I lost the ability to walk, talk or use my hands. I tried every known therapy for the treatment of Parkinson's, and when all of them failed I even tried suicide.
But last summer, at the age of 44, my life began again at Robert Wood Johnson University Hospital thanks to a surgical procedure known as Deep Brain Stimulation, a difficult operation that involves placing electrodes in the brain. With the activation of a pacemaker connected to the electrodes literally the flick of a switch I regained abilities I thought were gone forever.
Helen Keller once wrote an essay entitled "Three Days to See" in which she imagined what she would do if granted a brief interlude of sight.
I have been granted an interlude to experience the full use of all our blessed faculties. It is unknown how long it will last. There is no cure for Parkinson's, and over time the beneficial effects of Deep Brain Stimulation have been known to wear off, sometimes in as little as a few years.
And so I paint. While my hand remains steady. While there's still enough light. People say I'm pretty good at it. The only critics I try to please, however, are my daughters Tiffany (14) and Vanessa (13) and my lovely mother, Clara. Throughout my children tender lives, the one image they had of me was one of sickness, shaking.
To dissipate my disability, we played. I would tell my girls that I was their big barbie so they can help me get dressed. We also pretended to be in a restaurant and took turns on who would be the waitress in order for them to help me serve breakfast or dinner.
Nowaday, they are no longer sadden by my illness, we are getting to know each other in very different way. They are no longer afraid to leave me alone and when they bring friends to the house, they introduce me with pride telling them, "My mother is an artist." That is all the praise I will ever need to hear. I have regain my dignity.
One day recently I took a break from painting to clean my house, a chore I have been putting off for some time. Only those who have suffered physical impairment can truly understand the sweetness of having their capabilities back. Few people, I imagine, can know the delight of mopping a floor as I do. The floor of my house is marked by numerous scratches, which are traces of my illness. I made them with my shoes while I was "kicking," a symptom of Parkinson's also called restless legs.
It made me a little scared about what the future holds for me, and it made me determined to cherish every second of my life.
Helen Keller ends her essay with an admonition to "use your eyes as if tomorrow you would be stricken blind."
To that I would add this thought for the coming years: It is a privilege to be alive and in good health. Take time to appreciate the beauty of the morning, the shape of clouds and the embrace of those we love.
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My experience with
Parkinson Disease and motherhood
Fall 2004
I cannot imagine what my life would be like if I didnt have my children. I decided to have a child two years after being diagnosed with Parkinson. I was only 27 years old. Parkinson's robbed part of my life, but my children were the other part and made life worth living for.
The love children offer is so tender, innocent and pure. Although Parkinson was causing me great distress, I had learned to convert the feeling of defeat as an energy fuel and grow even stronger. I knew that being divorced, raising three children and at the same time have a chronic illness, was a daily challenge I had to face. When you have Parkinson you have toendure, survive, and thrive for today so you can be ready for tomorrow; otherwise, you could go insane.
As I had more downs than ups, more offs than on; my children were always at my side. The only image they had of me was shaking (tremors,) kicking (restless legs,) and moving uncontrollably (dyskenesia). These symptoms are typical of Parkinson disease. All throughout their young life they grew up seeing me ill, to them it was normal to sweat, to fall, to roll and even to drool as much as I used to.
I recall when my two little girls helped me to walk by holding me with their little hands, side by side; as they initiated the first steps, we sang the song "We're off to see the Wizard" from the movie The Wizard of Oz. Hearing them sing in harmony would help me coordinate my steps and off we went around the block.
As they grew older my girls began to notice that I was different because their teachers, friend's mothers, and the neighbor did not move as much as I did. Regardless, they respected, treated and
My children have grown. My eldest daughter, Gisselle (25) is now happily married. She has made me a grandmother of a tender little boy: Justin.
Tiffany (16) and Vanessa (15) are both teenagers. I believe they are possessed. They are no longer sweet, hugable as they were when they were younger. They blame all their frustration to PMS'ing and seem to be bitter at the world. My mother, Clara who is always giving me her support, tells me that their behavior is typical of any teenager, but I am still looking for an exorcist.
It has been over two years since I had the Deep Brain Stimulation (DBS) at RWJUH overseen by doctor Annette Nieves. Since then, I had regained my speech, mobility and walking. I am now able to ride my bike, hear the music and dance, see the ocean sing and dance making waves, walk barefooted on the sand and run and chase my teenagers around, whenever necessary.
My children are getting to know me without the Parkinson symptoms. They are double impressed by my new hobby: painting. When they invite their friends over, they show my paintings and with an elated voice they tell them, "My mother is an artist."
I have regained my dignity.
I have to thank my mother for her ethics she instilled in me; my beautiful sister, Evelyn, whom took her time to entertain me when I needed to be, to my brothers, Carlos and Walter for their love and support.
Many thanks to my children, Tiffany and Vanessa for helping me endured 15 years of battle with Parkinson's disease with smiles, tears, happiness, hardship and love.
Furthermore, I have to thank God, the Almighty. for hearing my prayers and giving me back a life.
My duty now is to help raise funds and awareness so that one day the cure for Parkinson is found. To know that there will be an end to this horrible illness. To help people come out of darkness and see the daylight are my main struggle.
To my children, my sculptures, my love and pride Gisselle, Tiffany and Vanessa, life will make you into my masterpiece.
Written by Elena Tuero
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As I see my mother...
February 2005
As I see my mother, I see how much time has gradually
transformed us. She is a beautiful woman from deep
within as well as physically. By the time she was 18
years old, she was already a mother of three children.
Her upbringing was very strict. Her life was full of
joys and frustration.
As I see my mother, aging, I still can see the traces
of beauty that time has withered away. Yet her grace
still parades around us. I wonder about things, such as,
what is in her thoughts?
How can she still be working? Why she is not enjoying
her life while she remains in good health?
Why does she worry about any of us so much?
Is she happy?
As I see my mother, I thank God for allowing me a second
Chance, a better health and to be able to see how one
grows old with time. Time sneaks by without anyone noticing.
I realized that I was buried under materialistic matters.
I have learned to make valuable time to embrace life and to
give and show love to others.
As I see my mother, I see myself and
I get scared and wonder how the rest of my life will be.
Will I be able, or will there
be a way to subdue Parkinson's
disease? Will I ever feel save? Will
I forever have to worry about my health?
and also wonder, Will I be able to
demonstrate my love and admiration to my mother?
Perhaps, one day my daughters will also feel the same
doubts, ask themselves similar questions, have the same
fears, but I truly hope to be present to give them
reassurance. To be able to show them that I will be
okay, I will live through them.
As I see my mother leave my house every weekend, I cannot
stop the feeling of emptiness she leaves behind. I always
find myself looking back to watch her go and again I wonder,
will I be missed the way I miss my mother? I
close my eyes and think about my daughters and hope time
will leave good memories of me on their hearts.
I will make sure I tell them to enjoy their young,
adventurous lives. Not to be afraid of life's challenges, that is
ok to stumble and confront any hurdle that life might
throw at them. But above all, I will let them know that
I will be around in case they need encouragement, support
and above all, love.
As I see my mother, I wish I can erase the many years
of pain and suffering she silently faced while I was
at the worse stage of Parkinson's. She never shed a tear,
never cried in front of me, although I had listened her sob
silently. She was always reminding constantly to hold on,
not to loose hope, to be strong, while she prayed.
She gave me strength.
As I see my mother leave to go back to her home,
my heart is pumping full of joy. I treasure the time
she has dedicated to me. Thanks to her, I dont feel lonely
anymore and for that I am very grateful.
She is not only my mother, she is also a friend.
As I see my mother, I will run towards her again and again,
hug her tight, kiss her in her forehead and whisper
in her ear:
"Thanks mom....I love you."
by Elena Tuero
My children are getting to know me without the Parkinson symptoms. They are double impressed by my new hobby: painting. When they invite their friends over, they show my paintings and with an elated voice they tell them, "My mother is an artist."
Many thanks to my children, Tiffany and Vanessa for helping me endured 15 years of battle with Parkinson's disease with smiles, tears, happiness, hardship and love.
Written by Elena Tuero
As I see my mother...
As I see my mother, I see how much time has gradually
As I see my mother, I see myself and
I get scared and wonder how the rest of my life will be.
Will I be able, or will there
disease? Will I ever feel save? Will
ok to stumble and confront any hurdle that life might
throw at them. But above all, I will let them know that
I will be around in case they need encouragement, support
and above all, love.
Feb. 22, 2005
I am 45 years old, diagnosed with Parkinson disease for 19 years. I was told I was slow, took my time on doing things such as typing, washing dishes ever since I was 23 years old.
I believe these were the first signs that something was wrong.
I decided to see a doctor when I started having freezing spells and tremors in my left side of my body. I was 26 years old when an internist had given me the drug Carbidopa/levodopa to treat, as he diagnosed me with, a unique case of Parkinson disease.
I went to another doctor, a neurologist, Dr. Jerome Posner of Sloan Kettering cancer center in N.Y.C. for a second opinion and after getting spine tabs, barium test for my intestines, P.E.T. scans he also diagnosed me with a rare case: Parkinson disease.
I learned that Parkinson was an incurable, degenerative, chronic illness that people between 65 and over are more likely to get. I felt like a mutant because there were no other cases at age 27 years old.
Nowadays, it is no longer unusual to see others diagnosed at an early age after 40 and up which are considered Young Parkinson's.
As I learned more about what Parkinson does to your health, the more depressed I got. It was hard enough to be a divorced mom raising an 8 year old child and to carry a burden of having a chronic illness when life had just started to make sense to me.
PD gave me lots of challenges in my life but I had also challenged pd by giving birth to two beautiful, healthy daughters two years after the onset.
I had to give up my job to dedicate my life on being a mother and coping with the ailments.
During the first ten years of my life living with pd were the worse times of my life. I could not see myself at a mirror, feed myself, talk, walk or sleep. I had tried all therapies to subside pd , I even tried suicide but there was no way out, I had a chronic, neurological illness.
On August of 1996, In the desperation to find a way to break apart from pd I participated in a research in Columbia Presbyterian Med Center in NYC called Fetal Cell Transplant. It was the first phase of this trial and I had to be followed over the first two years in the hospital to learn the long term effect of the procedure. The fetal tissue surgery was to be a failure, no gain, no damage, no change.
As time went by, I was taking sinemet two tablets of 125/100 every two hours, amantadine three a day, mirapex, sleeping pills and prozac.
Pd robbed me the ability to function, making me isolate from everyone. I felt guilty for bringing so much sorrow to my mother, my children. I even felt embarrassed of myself.
I was miserable.
Pd can take away a lot from the afflicted one, it can also bring mental exhaustion, physical burnout.
It will be almost two years ago that I d consulted with Dr. Annette Nieves from Robert Wood Johnson University Hospital in new Brunswick, NJ. She suggested to have a new surgery on which my diskenysias and restless legs will be under control. She assure me that I will stop shaking. It all sounded too good and I agreed on having the surgery. I went to a series of pre-op test. I kept my hopes up.
I was scheduled for June 24, 2003, I will have an FDA approved surgery called deep brain stimulation (DBS).
SURGERY DAY.........................
I had not taking or eaten nothing for 24 hours, I had a very bad facial dystonia in my face. My facial muscle would contracted making my eyes shut and my mouth twisted.
A nurse brought six injections ofanesthesia shots, they were injected throughout my head.
A halo was screwed in my head, to keep me (my head) from moving at the operating table (I think they do that in case you decide to run out! ). One of the injections did not do its job, it did not numb that part of the head so when they were doing the screwing, I screamed so loud, it was very painful, I bleed so much. So, what they did was, to give my skull another shot. I was then taken to have an MRI taken of my head, I was sobbing, my head felt so heavy with that metal crown. I looked like Frankenstine. Once we reached my destination, she whispered softly in my ear " Every one of our friends and family in Peru are praying for you".
Shortly after that, I was taken to a corridor and then started my path to the unknown.
While being wheel to the operating room, I felt so cold and nervous; a very unconfortable feeling. My mother, scorted me, she wanted to be by my side until the last second.
Suddenly I felt the urge to pray. I wanted to join everyone, in their prayers.
I started to remember my childhood friends, and families and then I started to sing a Holy song in spanish,: "Senor de los Milagros, aqui venimos en procesion, tus fielez devotos para implorar tu bendicion..." Translation: God of the miracles, here we come in procession your faithful servants , to implore for your blessings. *The Lord of the Miracles This is an article on how the holy song originated.
My mother gave me a warmed kiss and walked away. I kept singing out loud and strong. I felt like everything was going to be ok, and kept singing. I was to remain awake for the entire surgery which I was told it will last six hours. The nurses started humming along with me. As I heard the drill, I sang louder. I felt no pressure or pain whatsoever.
My hands were so cold but not for long, someone held my hands, I felt like it was an angel giving me warmth.
Six hours later, they were finished, the nightmare was over. I closed my eyes and rested.
How sweet, wonderful, beautiful, peaceful and relaxing is to be able to close your eyes and fall asleep. Many of us take that for granted, its one of the previliges I treasure the most. I remained in the ICU for 5 hours, then I was told that I can go home. She started to sobbed and told me "The house was always set at freezing temperature to keep me comfortable because I was always hot and sweaty. For many years my whole family had to put up with P.D.
I used to shake a lot, plus the diskenysia and the restlest-leg; all that friction made feel hot. I went to my mother's bed, she laid next to me and I slept like a baby. Radical changes My life changed so much ever since the surgery. The very first thing once i woke up was to look myself at the mirror, I put some eyeliner, then I did my nails bright red, and I realized significant it was to be able to do these thing by yourself. People don't realize how wonderful it is to be able to be independent. I put some music to play and I was able to keep my rythm, I walked every where I went, I was able to carry on a conversation with my family, I cooked etc...etc. One day cleaning the floors, I noticed ravage scratches on the floor, it was like someone had tried to cut the floor in pieces. Those scratches I made them with the heel of my shoes. I then decided to help others deal wit h this awf ul illness. T hen, one day on September, just three months after the surgery, I started to paint. I was tr ying to occupied myself with my hands and I went to the store, got some acrylics, a brush an a canvas and painted some bottles Then I painted a fat ballet dancer. everyone liked the very first two paintings done on 8x10 boards. I challenged myself and painted another fat ballet dancer on a much bigger canvas 20 x 24 in oil and my mother gave me $100 dollars and I have not stopped painting.
I found myself waking up in another cold room, but no more noise, no more halo, I had finally had fallen in a deep sleep.
As I was walking into my home after the surgery, I felt the house Artic cold. The thermostat must have set to 50 degrees forenheit. I asked mother "Why the house feels like we are inside a freezer?",
I then realized, how much my family had sacrified on my behalf, but now I was feeling much better, before having the surgery, it was impossible for me to go to sleep. For many years I slept only two to three hours, and that was if I was able to rest.
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Medtronic's Symposium
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Bike ride to raise funds and awareness
Elena Tuero, Mark Higgins and 13 other rode their bicycles for a 180 miles in Presque Isle, Maine to raise money and promote P.D. awareness for American Parkinson's Disease Foundation.
The ride started on Sept. 6, 2006.
I have to admit that it was a tough ride, most of the times I walked along with my bike up the hills, I had no previous training and huffing and puffing, I made it to the end of the ride completing 120 miles!
can you find me?
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I am a compulsive gambler
Ashame of my consequenses. I have betrayed my mother and daughter for the filthy money. I want to change because I love them and I want to proof to them that I can be a better person. I am sorry .........I will write more as I heal, if you want to drop a note to me, please do so in the home page.
Article about Compulsive gambling
Compulsive Gambling and Parkinson's disease
June 1, 2009
