Welcome
English hompage
I will tell you all about my experience with Parkinson's Disease with the sole purpose to guide you, learn and what to expect as the disease progresses.
My main intention is to inspire you and to offer hope, support, and entertain you until the cure for parkinson's is found.
It has been 23 years since my diagnosis with PD. I feel like I have been walking with high heels over the mountains, going up and down the rocky roads carrying a log in my back. Can you visualize this scenario?
You might think I exaggerate but if you had this illness perhaps you would feel the same way or worse/.
I am tired.
I am not melancholic, I don't want or need sympathy, I am another victim of these monster (PD) that is crawling back to my body like an impostor!
I am tired.
Of waiting for the magic pill that will kill PD. I see other people with other neurological illnesses suffering with their caregivers hoping that a miracle will cured them.
Meanwhile, I see the self destruction of my 20 year old daughter and her friends health: smoking and drinking. I strongly believe that there should be more cause and effect emphasis on addiction.
I am so tired
On this government that gives us a check to stimulate the economy and later freezes the Social Security
cost of living adjustment, and terminates the home stead rebate for rental people.
I am tired
of seeing so many people that has lost their jobs, including my mother forcing an early retirement, good thing though it was before thegoverment increase the age limit to be eligible to receive a pension from 65 years to 72 years old!
I am stating all these factors so you can see that there are other troubles in life besides PD, I am no different than any of you, I don't have the answer to every question, I am vulnerable. therefore, i will go rest because I am tired.
Saturday, May 08, 2010
My DBS is not controlling my PD symptoms anymore
It has been almost 7 years since I had Deep Brain Stimulation (DBS) implanted in my brain to lessen the deterioration of the illness: dyskenesia, tremors.
It seems to me that DBS is a vacation you take from Parkinson’s but eventually the party is over. Parkinson’s symptoms have made its way through fiercely. The battle has started.
How long can the brain be stimulated?’
key question one cannot answer because every case is different, in my case it was 7 wonderful years that I was liberated and now is time to beat the beast.
A Long due tribute to my daughter Gisselle
January 2010
As I was reading back my essays, I noticed that I seldom mention my eldest daughter, Gisselle. You may wonder why, but I have an explanation on which now I am able to talk about it.
She is a witness of all my struggles: triumphs and defeat
After one year of marriage, Gisselle was born February 28, 1980, weighted 5 lbs at the 8th month of gestation.
I walked out of the marriage when she was merely 2 years of age, she became my main focus of my life. She was my only partner of honor at my College graduation, no one else attended, I owed it to her for all the times I had to leave her behind to finish school and work.
I remember the first paycheck I cashed from my first salary job after graduation, we went to a shopping spree. I sat her fragile body on a carriage and I said: “You just touch anything you want and it will be yours!” I can still remember her puzzled and happy face as she carefully touched everything.
I was in my best year of adulthood when I was diagnosed with Parkinson’s Disease. Gisselle was 6 years when the symptoms manifested and with her innocent, sweet voice she asked me: “Mom, is that contagious?”
She helped me raise my two little ones that came after, by the time she was 10 years, I had given her two sisters: Tiffany and Vanessa.
She was becoming an adolescent-teenager when at the age of 15, she was taken away from me. When I had filed for divorce, no custody issue were mentioned, so her father took custody. One day they came to pick her up for weekly visits, and without saying goodbye, they left and never brought her back.
I am able to talk about it now, but it took me a long time to swallow this pain: betrayal, coerced, mixed feelings then.
It was one of the darkest days of my life, I fell on depression, wrote a note on how unhappy I was because I was sick and I wasn’t a good mother. I overdosed on pills attempting to end up my misery life.
My daughters found the note after attempting to wake me up from a deep sleep, they later reproached me on how selfish to think of me and not on them whom they were sticking around because they loved me.
Two years after, I was ask to see the Judge in a court. Not knowing what to expect, I was asked to go to an empty court room, then I saw my daughter coming towards me, then Gisselle got on her knees, held my hands and said: “I am very sorry mother, so very sorry, please forgive me!”
She never left me. She was always living in my heart, Although she never physically returned home, she had requested through her child advocate, scheduled home visits.
She then eloped at 21, graduated from John Jay Criminal Justice College and bought her first house by the age of 27 years old.
Gisselle and Gustavo (husband) have made me a grandmother of two beautiful kids, Justin,4 and Camilla 3 months old.
I can only dictate what my mind thinks, but I can’t ever express what a heart feels.
By elena tuero
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
A Spanish guide explains how to fight Parkinson's
NY DAILY*NEWS
Marcela Espíldora
Thursday, April 3rd 2008, 7:23
A surgical operation to Elena Tuero recovered from Parkinson's disease.
In order to improve the quality of life and alleviate the effects
of Parkinson's disease in newly diagnosed patients and those
with advanced symptoms, the company Teva Neuroscience, Inc. published the second edition in Spanish of "Moving Forward: A Practical Guide for Living with Parkinson's disease."
The guide produced by this company dedicated to developing treatments for this among other diseases, contains important information about Parkinson's, plus tips on how and where additional resources.
The main objective of the publication is for patients to learn the treatment options and use appropriate resources to take control, treat their illness and continue doing the activities they enjoy.
And is that a diagnosis of Parkinson's can be overwhelming: "When I was told I had Parkinson's, my future was black," he says from his home in New Jersey Peruvian Elena Tuero, Who was diagnosed with the disease when she was 27 years old, a little over two decades.
Over time Tuero condition worsened. She lost the ability to speak clearly and walk, which led her to withdraw into her apartment for nearly ten years.
"As my body shakes for tremors, people looked at me and it bothered my daughters who were fighting with everyone . I decided not to go out, spend all day at home and when my daughters came home from school, I lived again, "said Tuero, who after a successful operation in 2003 stopped shaking and regained his ability to speak and walk.
An estimated one million people in United States suffering from this illness, many of them Hispanic, and that like Tuero feel that so far there was not much information available in Spanish.
"This is why I welcome with enthusiasm the publication of this guide," Tuero says.
Options varied
Within the second edition of "Forward ..." You can find information ranging from symptoms and disease progression to surgical treatment options when the drugs do no good.
There are also tips on choosing a specialist or how to organize medication,
without recommending any particular drug.
Elena Tuero's Biography
I will introduce you into my life in a series of essays. I would like to proliferate hope, strength and bring faith into your life....
These are Articles I have written about different aspects of Parkinson's disease.
to read just click on the underlined link:
BLANK CANVAS - AS IT APPEARED IN APDA NEWSLETTER
Blank Canvas
Love and Parkinson's Disease
Living with Constipation - A Parkinson's Disease Reality
Motherhood and Parkinson's Disease
Deep Brain Stimulation (dbs) - 10 years after approval
Happy Mother's Day
My challenges with walking, balance and posture
Living with Parkinson's disease -Article written by Matt Nielsen from MyParkinsoninfo.com about my Parkinson's disease quest.
R.I.P.
Alejandro Manuel Tuero Balarezo
a/k/a Manny
Sept. 14, 1936 - Aug. 29, 2008
Papi
July 8, 2008
I going trough a tough period of my life.
The selfishness of my feelings of love, anger, sadness, unfairness, all mixed up into one thought: Life and death.
The cruel truth: The Alpha and the Omega, comes into terms.
My father life is ending.
Seeing him weak, frail, deteriorating, defenseless breaks my heart.
I cry of agony, helplessness.
I see vivid memories of my childhood
I see him strong, full of life.
I squint my eyes
I see him breath with difficulty.
Papa, I am here!
Papa, here I am
Papa, can you hear me?
Papa!!!!!!!!!
I hope this time he heard me but I remind him that I will be around until He decides.
“I think I found God a little too late”, “But, I want to go to be with Him, right Elenita?”
I look at him perplexed at his remark
I found out he was at the hospital two days after he was admitted to the Hospital with Congestive Heart Failure. I was at his side ever since then, but I feel useless.
I remembered reading about “The Power of Prayer” and started telling and calling everyone I know asking them to pray for him.
Papi there many things I want to still tell you,
how wonderful you were for me,
please open your eyes,
squeeze my hand if you can hear me!
Papi, don’t go, stay …don’t go.
Our Father, who is in heaven, Sanctified is Your Name, take in Your refugee.
Please, lets pray for my father Manuel Tuero aka Manny
Elena
Parkinson's and Dental Care
I know for a fact that it pays to have a dental plan to cover everything that has to do with dental care (cleaning, x-rays, fillings, extracts,etc.)
I have medicare cover for my Parkinson treatment but it does not cover for dental care. For years I could not afford to go for a dental check-up because I would put everyone in the office nerveous with my shaking. I used to tell them that I was (and I am truly) scared of dentist but is necessary to have your teeth up-to-date. I requested laughing gas to relax me, it did no harm to my condition but it was very expensive!
I suggest to buy a plan on which will allow to get discount and avoid regular dental fees.
I learned about this after paying hundreds of money, went on the internet and I purchased a plan. Be smart and start saving and I assure you will have a brighter smile.
No forms to be filled, save at least 25% off regular prices!
This is the company I dealt with:
Blank Canvas
Winter 2003
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 ever more 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.
Pregnancy and Parkinson Disease
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As I think back in time, life had just started to make sense to me. I got married at 18 years old. Gisselle was born weighting 5 lbs on February 28, 1980 .
I had developed placenta previa; she was born at the 8th month of pregnancy. I was phisically abused by my husband, victim of domestic violence.
One day I left my home and never went back. I became a single parent at 22 years old.
I became a single mom and graduated from Bronx Community College, from 250 aplicarions,I was chosen to work for Lathenburg,Thalmann in Madison Ave, NYC
Brokerage house as a Accounting clerk, I learned about OTC Trading, Muni - bonds, Underwritting .
I started to invest in stocks, building a very small portfolio, received year-end bonuses begun traveling to Peru, Venezuela, Brazil, Uruguay, Margarita Island, Montego bay in Jamaica and many US states.
I've had a very happy life.
Four years went by when a co-worker first mentioned that I was not as energetic, as before and I was in a slow motion state. Another friend noticed that my left leg was trembling. Perhaps, these were the first symptoms of my illness. It was like my whole body was telling me that something was wrong.
One year later, after many rigorous exams, it was devastating to learn that I have been stricken with an incurable, fastidious, inexhaustible illness; I was diagnosed with Parkinson disease at 27 years old.
My doctor told me everything I needed to know about Parkinson Disease, so I thoroughly started to put my thoughts together and take things one day at a time.
For the first two years after diagnosis this illness has brought along frustrations, interrupting my young adult life. Parkinson gave me enough to dwell on.
As inevitable as this illness' path was, the symptoms strongly started to manifest. I was depressed.
I strongly believe life was to compensate me by allowing me to bare a child. I became pregnant.
At first, my doctors were puzzled by the uncertainty of not knowing what the future might have on hold for me. To his astonishment, there were no studies, no references, no books or knowledge of pregnancy and Parkinson disease. According to my Neurologist, I was, according to his experience, the first woman at a childbearing age with Parkinsons disease.
I voluntarily gave up all my P.D. medications for the first three months after conception. I kept working throughout my pregnancy; It was not easy but I needed to work.
It was a very exciting episode of my life, full of challenges and of unexpected surprises. Yet, nothing overshadows the grace of becoming a mother once again.
Tiffany Noelia Olivera was born on January 18, 1989 (full term) Weighting 5 lbs 2 oz.
She was a healthy baby with no complications.
Gisselle was very happy to celebrate her 9th birthday with her newborn sister. I remember innocently, while holding her sister in her arms, asking me "is Parkinson contagious?"
Tiffany was 6 months old when I realized that I was pregnant again.
One of my main discomfort, aside from the tremors, was that I was feeling tired, depressed. I was not physically nor mentally ready to go through another pregnancy. I cried every time I had a chance, I feared that my depression would hurt my inborn. I started to walk on my tiptoes and with a inclined posture, another typical P.D. symptoms, my illness was progressing.
Once again, I stop taking my medications and started to feel the withdrawal, I was getting weaker. I prayed to God for strength, I also prayed for HIM to allow me to get my baby out of my sick body but in good health.
Two days after, at the sixth month of pregnancy, I went into labor. For some odd reason I had stop shaking, no tremors, PD has left momentarily. Doctors tried everything to stop me from getting contractions, but nothing helped.
My body was rejecting the baby. I was all smiles, God did hear my prayers.
The baby was in a breached position, so the doctor ordered a Cesarean section. My husband (then) has gone into the operating room to comfort me, but he fainted. After a few slaps in the face, he was escorted out.
Vanessa Olivera was born March 9, 1990 (26 week pregnancy) weighting 2 lbs 10 oz. She was a pre-matured baby with a history of Apnea.
Once I was able to get up from the c-section, I went to visit my baby at the I.C.U. She was in a incubator with wires and needles with meds, machines pumping oxigen and air to her little lungs, she was so tiny and was fighting to survive. Suddenly I hear beeps and bells and I stood there wondering what was going on, I was asked very calmly by the nurse to move out of the way because that noise was an alarm informing that my baby had stop breathing.
I collapsed and was sent back into my room.
One week later, I went home. Vanessa remained at the hospital for one more month. She was released only when she had 2 ml of milk, and weighted 4 lbs.
I had a hard time dealing with PD back at home, I was very weak, and had tremors. But I let nothing bothered me because, I had two defendless, loving little life in need of love and attention so therefore, I was too busy to let P.D. interfere.
I never lost my faith, THANK YOU GOD.
It was doubled the efforts with two babies but it was twice the joy!
note: Parkinson strikes to the majority of 55 years olds and up. In the year of 1986, very few cases were reported at 50 years old and under. Nowadays, is no longer thought to be an old age disease, it can happen to anyone at any age. The cause of Parkinson disease remains a mistery.
PD keeps taking its course...
.
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 grew 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 to endure, 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 see me 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 loved me the way I was and I am grateful to them for their unconditional love.
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 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
Feb 2005
As I see my mother
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, what is in her thoughts? How can she still be working? Why isn’t she 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 to a better health and am able to appreciate it. I now 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 get scared and wonder, how the rest of my life will be? Will I be able to subdue Parkinson's disease? Will a cured for all illnesses be found? Will I always have to worry about my health? Will I be able to demonstrate my love and admiration to my mother?
Perhaps, one day my daughters will have same doubts, feel the same fears and ask themselves similar questions.
I truly hope that I will be here for them every time they need a hand for reassurance. To be able to let them go, set them free and I will be okay, I will live through them.
As I see my mother depart every weekend after visiting, 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’ lives and hope time will leave good memories of me on their hearts.
I will make sure I tell them to enjoy and have
adventurous lives. Not to be afraid of life's challenges, that is ok to stumble and fall. To 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. She never cried in front of me, but I had listened to 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 don’t 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, hold her tight and whisper in her ear: "Thanks mom, I love you."
LIFE IN MOTION - OVERVIEW
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.
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.
Once we reached my destination, she whispered softly in my ear " Every one of our friends and family in Peru are praying for you".
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 found myself waking up in another cold room, but no more noise, no more halo, I had finally had fallen in a deep sleep.
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.
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?",
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 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.
I went to my mother's bed, she laid next to me and I slept like a baby.
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
The time has come for the Changing of DBS batteries
I cannot help to fear the changing of DBS batteries surgery.
I started to feel different ( March 2006 ) like resting tremors, freezing and difficulty with speech.
I was at a restaurant ready to leave with a drink in my hands when my body was going forward but my feet stood glued to the floor; I fell and landed on my knees pouring all the drink onto my face.
That day I realized that Parkinson was interrupting my life, again.
There were numerous times that I had come out of my car and turned around and got right back into my car again, I was having panic attacks. I kept spilling; dropping anything I held in my hands, the tremors has come back.
I am back into battle with Parkinson’s disease.
I visited my neurologist and confirmed that I needed my batteries to be replaced because they were running out. I vision myself as the bunny from the Duracell's commercial.
So, I fear.
It feels like this is a wake- up call announcing that presence of Parkinson's disease. It brings me back memories of my previous condition (before DBS) and just the thought that I will have to confront Parkinson's disease again brings tears to me and my children.
"Mom, you will be fine after they change your batteries" my daughter affirms.
It has been almost three beautiful years since the DBS surgery and no one knows how long this will last.
I look back and see the need for better treatments to alleviate the symptoms.
And then, I wonder how many other afflicted are suffering, hoping that soon the cured will be found.
I strongly see the need for awareness of this monster to congress so they can acknowledge the necessity to fund the clinical research appropriately.
We need to raise more funds so it can cover the cost of trials and to hope that soon the cure will be discovered.
How soon?
I say, soon enough to stop the progression of pd and improve quality of life .
Elena scheduled Surgery: April 25, 2006 at RWJUH
SURGERY DAY-REPLACEMENT OF BATTERIES
APRIL 26, 2006
The day of the surgery arrived, I was admitted to the One day surgery room at RWJUH. The nurses prepared me (drew blood, check heart rate etc) for the surgery. Once at the operating table, I had reminders of my first implants back on June 24, 2003.
A thought came into my mind: How many times will I be in the operating table to have the dbs’s batteries changed?
I have more than ever optimized my determination on being an advocate to find the cure for Parkinson, in my lifetime.
The annasthesiology started to put me out.
In the middle of the surgery, I had opened my eyes, I felt very drowsy and confused, to my regret, I has awaken while they were closing of my incision. I was very scared that I had awaken too soon. I mumbled "I am awake, put me back to sleep, please" I felt the pulling the pushing of the stichtes on my chest. the surgeon told me "We are almost finished".t the surgery took 2 hours, 50 minutes.
I demanded for food but I was told that I was to eat light food for the remaining of the day.
While in the O.R room, I started to get an itchy feeling all over my body and the nurse said it was a reaction of the anesthesia. So, they gave me a shot of Benadryl and morphine for the pain.
I was sent home with instructions to follow. When I got home, all I wanted was to sleep, so while my mother was cooking chicken soup (aguadito)
I rested.
When I woke up, my mother serve me soup, I ate.
she went home at 5:00 pm.
I rested some more.
At 7:30pm I was awaken by my tremors. My daughter Vanessa asked me if I was ok and hugged me, telling me to relax. By this time I had violent tremors and I started to sweat.
Vanessa call the number given to me at the hospital, explained my situation and was advised to call 911 so she did.
I started to wonder what could have gone wrong.
My immediate question was:
when they replace the batteries, do they turn it on or off after the procedure? Is it safe to turn it back on?,
My daughther called Medtronics but all they said was: call her doctor.
So I had two events going on: pain from the incisions and tremor all over my body.
The police arrived at my apartment and the paramedics transferred me to RWJUH.
The siren was loud and the road was very bumpy.
While being transported I had a vivid vision. I was standing at an edge of a open door. Outside there was no noise, no flashy colors, no big buildings and it was so peaceful. I standed at the door looking around to that beautiful place.
For a moment I wanted to go outside, and I had half of my body out. Suddently the pain and the tremors stopped, what a relieve I thought. Then out of nowhere I heard a soft voice inviting me to step out, when I saw her face, to my surprise it was my sister in Law, Brenda she had passed away 3 years ago, her complexion was like rose petal, she was wearing a loose white gown. She was beautiful.
"There is no pain here, we are a family, we are all One" she spoke to me with her arm extended, like if she was ready to hug me. Her face was so transparent, serene. For a moment I hesitated
I was awaken by the paramedic telling me not to fall asleep.
As I opened my eyes, the sky was gray and the noise of the siren was loud. Unfortunely the discomfort of my tremors came back. For a moment I wanted to go back to that peaceful, perfect place but the paramedics kept waking me up.
Once I arrived at the hospital, I explained to the nurse about what had happen early that morning.
All they did was to write it all down. I asked if they can call my neurologist but they kept writing. No one at the ER knew what to do and all they did was to take notes of what I said.
9:30pm- I was released from the hospital telling me to come back the next day and see my neurologist. I asked them how will they expect me to come back if I could not walk nor drive. I took one sinemet.
My daughter Tiffany went to pick me up at 10:30pm and while I was being driven home, I stopped shaking.
What a relief that was, I was able to sleep throughout the night.
4/27/06 8:00AM- I woke up in the morning with violent tremors, Parkinson’s came back.
I called for help but I was home alone.
Assuming that Dr. Lehman would get a report from the ER visit, I waited. But, there were still no answers from either my neurologist or the neurosurgeon. I started to make phone calls, e-mail asking for help.
4/27/06- 2:45 pm Still shaking…still waiting. To kill time I started to paint on acrylic.
4/27/06 – 03:40pm Elizabeth Schaff sent an e-mail from RWJUH. She had contacted personally with my neurologist (Dr. Nieves). She then called me and asked me to go to her office next day. I agreed.
4/28/06 - 3:00AM Abrupt awakening-strong tremors...again
4/28/06 8:45 am I was at Dr Nieves this morning. She tested the new Batteries and she told me that the batteries had the default settings.
Dr. Lehman forgot to turn the batteries on. He was supposed to adjust the batteries to the set parameters on file. He didn’t. They were off.
Immediately Dr. Nieves set the batteries to the parameters on file. What a difference, I felt light, free again.
I asked dr. Nieves to write a report of his negligence and to have him write an apology letter to me.
This incident shall not happen again.
AMERICAN PARKINSON DISEASE ASSOCIATION
APDA- 2006
EXCELLENCE IN SERVICE AWARD
April 8,2006
My three daughters, my sister Evelyn, My mom and daddy Nick where present at the event.
My unrehearsed speech was
"I thank you and specially my mother for ever helping me... Mom this is yours (award). To those that has parkinson's like me, I speak for them, that we should all see ourselves as artist because we all have the art in ourselves"
I also won a raffle!.
_______________________________
On April 2007, my neurologist Annette Nieves moved to Florida
to a new position.
I am still worry who will do my programing of my dbs inplants.
Dr, Nieves was under total control of my health, whenever i needed her assitance, she would take care of me prontly.
Now that she is gone, I have decided to go to Columbia Prebysterian-Neurological Center to have my adjustments.
I had my first appoinment on August 6, 2007 with Dr. Blair.
I am very comfortable with him, he was very understandable and he only touched me on my programing and i was ready to go.
I know I will do well, I will miss Dr. Nieves and I wish her only the best
_______________
Personal thoughts
My personal experience with DBS's Battery Replacement
After all (read on Biography page) I am OK. I hate the new scars but, there is in exchange the peaceful, serene days that DBS was able to give me.
For a moment, I thought I would not be able to handle my full-blown Parkinson's
symptoms. In order for me to control my tremors, I started to take extra (double my regular dosis) carbidopa/levodopa. inmediately, I also experienced dyskenesia,
sweat spells, dystonia on my feet and restless legs. I did notice that my speech was better, my tonque more relax. But I was so miserable. I wonder: How did I survived 17 years. Thanks to DBS, everything that bothered me is under control.
WORLD PARKINSON'S CONGRESS
Michael J. Fox was among the 2600 attendees. He and gave a very honest speech at the inaugural World Parkinson Congress.
One of my paintings were at the art exhition. There were very talented artist with parkinson's from around the world.
PARKINSON'S AWARENESS A FUNDRAISING IN MAINE
BIKE RIDING
*
Start Sept 6 through Sep 10, 2005
My accomplishment
can you find me?
I am the shortest, widest and darkest of all.
How many miles again........?
It was a challenge but I DID IT!
I was walking up the hill, biking down, riding in flat terrain and with Mark Higgin's father, Paul, I was able to finish my journey:
150 miles total
Mark has a loving family and wonderful friends.
Cousin Tim, Kathleen, Grandpa George rode their bikes all the way totaling around 300 miles supporting Mark, who has parkinson's disease.
It was truly a great experience, Maine is beautiful ( lots of spuds and hills ) their people amaizingly warm and I would do it again ...I thinK
They all rode their bikes the first 70 miles
Today I discovered something I had stopped doing ever since I was diagnosed with P.D: I can swim.
P.D. had stolen most of my attributes and one of them was swimming. Poor coordination is one of the debilitating effects that are affected for the person afflicted with P.D.
It has been more than a decade since I have been avoiding the pool or the beach; but now
all the discrepancies remains buried in my thoughts, I have changed. I have surpassed
all the maladies that P.D. had given and put them at rest thanks to my DBS surgery. I am thankful to the Almighty that through this surgery, He has giving me happiness not only to me but also to all my family. Everyday I learn a little more about the things I am willing or able to do. I supposed it is up to us to discover what our potentials are. People are too busy with superficial, materialistic things that forget that there is a sun, shining to all of us, there is a moon showing off its beauty through the night, the sound of the ocean dancing through its waves. Throughout one’s life there is a Kodak moment and today was that day. I may not be a mermaid but I can pretend to be one; when I swim.
Bridges to Employment Conference
Projecto Vision, a project of the World Institute on Disability, organized a Conference to Employment: Exploring career opportunities for Latinos with disabilities. This event took place in Raleigh, North Carolina on June 1 thru June 3, 2005. The attendees were workers from different fields such as directors, consular, job developers and many other representatives from other states with one focus: help, inform, educate the growing Latinos population and employment.
It is the first time that I attend to a bilingual conference and see so many high-ranking Latinos. Upon registration, I was given a tag with my name, the name of my institution (website) and the title: Founder. I felt elated.
At first, I was a bit nervous, I felt intimidated. Immediately after I sat on a table, friendly faces greeted me and I started conversing with others. They were many energetic people, like me, eager to express their experiences and ideas. I had the opportunity to tell them about the NJ Self-Help Clearinghouse, all the moral support, that Edward Madara offered by helping me create a support group by backing me up, encouraging me to make dream of helping people with Parkinsons. Helping people with Parkinsons disease as to inform about the programs that are available. Offer them the chance to emancipate and to feel that they are equally respected. It was odd to see the interest they showed to learn about my website. Some showed a great interest on how to set up their own website. Thereafter, we all exchange business cards for future "networking".
It is evident that there is a need for more Latinos with disabilities to become more involve in the job market. Advocate in implementing more accessibility to accommodate the disable. I feel that is very important to emphasize the facts that there is need for more recognition for employment with disabilities mainly because there is a 20% of working people, 16.9 million have a disability. 1 in 3 adults with a disability is African-American or Latino. Each of us has a 20% chance of becoming a person with a disability. As for me, a disabled, I blame this for lack of intervention, support, and the feeling of being discriminated not because of race but for my disability. A few years ago, I had the need to be more inter-dependant. I decided to attend a Vocational Rehabilitation Service, and there werent any Latino representatives to assist me, and the job offers were detrimental. Having no support, I gave up on the idea of becoming more self-sufficient.
Speakers emphasized that Latinos should be more focused on indicating our children about higher education. There is the need to educate our children for a better future. Statistics shows the Latinos as the most school dropouts; a creation of more incentives to strive for a career should be implemented. Find resources on which low-income families can apply and not get discouraged about investing on their childrens education.
This was an experience that I will always remember mainly because it made me realize that I am not alone in this quest of helping others. I came back with lots of ideas, lots of papers and lots of business cards.
I am ready for networking.\
I went to Raleigh, North Carolina for a three day conference "Bridges to Employment"
given by Projecto Vision. It was my
First time attending to a conference, and I feel that I have learned a lot about all the services and opportunites many states are offering to Latinos with Disabilities. I also met lots of people willing to share their experience and time to network with others. I am full of ideas, but I need to get back to my life (cleaning, laundry, my girls ect.) before I can start anything new!
May 8, 2005
Today is officialy mother's day all over the world. I always told my children that mother's day is every single day. We do not have to be reminded to kiss, thanks or treat our mothers mainly once a year but everyday of their lives, that is my opinion. Well any way, happy mom's day!
April 27, 2005
concepts of love
It has been one year and ten month since I was re-born after my battle with PD. Yes, I still paint(I lost count)but, my concepts of love has changed. I was taught to be explicit, wise, analytical. I learned that this is true if we are bying or investing money, but when it comes to whom we love, I have become more humane, more practical and less demanding.
Have I found love? Has love found me? either way, I feel 20 years younger, attractive, giggling because I met someone. He is a hard working man, brave enough to start conversing with me in a remote place.
My concept of love has taking a new course, I still love my daughters, my family and friends, and love to be in love. I am not sure how much this would last, but I will enjoy every second of it. He likes me the way I am, knows about my PD and seen my scars. He is simple, very humble, strong and I like him in return. A cured for PD is around the corner, and while I wait for the cure, I will enjoy what life has brought me: health, dignity, happiness, and now love.
Where are the roses, a box of chocolate, little details that man stopped giving afraid of being charge with sexual harrasment?
I believe the Woman Liberation Party is to be blamed.
I can now appreciate listening to music, but all I hear are songs with resentments, complaining about anything/everything and cursing, like rap, RB, house I say these songs are for the renegades!
I was able to see how the teenagers dances. I bit my tonque everytime their friends danced with each other, they dance rubbing at each other...
I moved to a new apartment with my two daughters n December 2004. I feel liberated. Everything in my apartment is mine. That alone gives me so much pleasure and a sense of responsability.
I thank God for DBS that took me out of my misery, I now I am not cured and I will never forget the past. I don't think about the future, I live everyday appreciating details like looking up in the sky and see all the stars twinkle and embarke into the space to see how little we, humans are. I'll pamper myself enjoying nature, love my children, help my neighbor and wait for love.
Apri 1, 2005
There is a message to all of us, stricken with PD and other disabled people. We need to understand that Terri Schiavo death has awaken the issue of the right to live, or the mercy to die. Perhaps we need to get ready in case this might happen to any of us. Making a living will and state what will you want to be done if you get so sick and about substaing artificial life support.
The Pope is dying of Parkinson's disease, some of us know what this illness does to our lives. Is desvastating to witness
how Parkinson's is winning the battle.
Parkinson does kill. Yet He still is showing us his strength, demostrating us not to give up, he is giving us Hope.
I started painting this portrait of the pope a week before he died.
May God give us strength to accept His will
My experience P. D. and a Home Health Aide
A warning about home health aides
I was not expected to recover from the ravages of the neurological, progressive, and incurable illness: Parkinsons disease. I was able to put my thoughts together, but once I verbalized them, all the words came out wrong because I did not speak clearly. I mumbled. I was in the late stage of Parkinsons and was loosing the ability to talk. Therefore, I had problems communicating with anyone except with my children. I spoke through them.
Unable to do simple tasks as getting off from bed, washing up, getting dress, cook, I seek for help. I spoke to my social worker and she offered to hire a home health aide to help me with my necessities for a couple hours a day. And so, I accepted.
Numerous of home health aids walked into my house that were sent by private agencies were dismissed. I kept sending then home only after each of these incidents occurred:
One day I was able to get to the washing room and the health aid was doing her laundry using my supply and she even brought in her hamper full of dirty clothes.
Another time, an aide brought her boyfriend to my house and they both danced while playing music. Two bottles of wine were reported missing.
There was a health aide that refused to go shopping for me, a task very hard for me to accomplish, because it was not written in her to-do list.
A health aide took a diamond ring from my headboard; I had taken it off to take a shower while she did my bed. After confronting her, she decided to quit working for me because she reported that I was delusional, I never got my ring back.
There was a lady that sat with her coffee cup in the table and a reading book, and read for two hours. I remember she once directed a statement to me saying, "I was told to watch you" and I immediately asked "To watch me or to wash me?" And with her eyes glued at the book she replied "no Spanish" and kept reading.
I was coming out of the shower and an aide while helping we dry and staring at my body tells me "you have a beautiful body"
Again, one day I came back from my daughters school and I found one of my nurses aide watching TV and eating a sandwich saying that she had lost her houses key and she came in through the back door since there were nobody was home to open the front door.
Another health aide used to make me signed blank sheets and later she would increase her hours.
I can go on and on telling many irrational behaviors. I complaint to their agencys about each incident as they occurred but I guess they could not understand a word I was saying. I felt that I was being neglected and were taking advantage off my health condition,
And so, I did recover thanks to DBS surgery and now I can address these issues that were overlooked because they were never mentioned. But I discovered many unjustified, abusive, unfair treatments by people that are supposed to be helping the needed and getting paid.
If you feel that you or your love one needs a home health aid, demand for their credentials, and references telephone number. Many patients feel intimidated by theses individuals and are afraid to speak up. Remember, the service is to help you, and they are not doing you any favors, they are getting paid above minimum wage.
I wonder, how many ill people are I this situation? How can I alert them? How can I help?
A solution: write down the things you need help with and what you expect to be done. Show list to Social worker or Agency and if they agree to service you, put a copy of the agreed memo as a reminder to whomever is going to assist you. In this manner, the home health aid has to abide to your needs. Have a relative or friend meet your aide. There are wonderful, honest, kind hearted driven people working as Home health aide. But like everything in life there good and there are bad. Try track down these people that are abusing our trust, our peace of mind and the respect every one deserves.