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"Living with MS" on the Day of MS 2010

The National Institute of Neurology and Neurosurgery (INNN) "Manuel Velasco Suárez" invited us to participate in the program of activities organized to mark the World Day of Multiple Sclerosis, Wednesday May 26, 2010 in Mexico City.




IMAGE: Poster Day event

And I do extend an invitation to the entire community of people with MS to enjoy this free entry event, which begins at 10 am and ends at 2 pm .



I will be present at the event along with a group of people ZOE Association of Cuernavaca, but especially to accompany my wife Ana Silvia Barajas, who will have direct participation in the program.



Ana talk about his experience as a caregiver, their concerns, which has had to learn what course he likes and dislikes the way that changed his life to be caretaker a person with multiple sclerosis (MS), that is me.

PHOTO: Ana Silvia and I, in Chicago (November 2009)

activity INNN is coordinated in the area support groups and neuropsychology, who runs several years Dr. Yaneth Rodriguez Agudelo. The program is intensive, comprehensive and varied, with the intention that both patients and family members or caregivers, but also health professionals, learn more about living with multiple sclerosis.



In the multipurpose room at 10 o'clock, Dr. Jose de Jesus Flores, a welcome message will and will open the activity.



Then in the area outside the lounge, 9 tables of information, in which people interested in the topic of MS may receive information, contact details and even brief advice, be open for just over an hour.

PHOTO: My mother Ana Maria and I

The tables are on the following topics:

1. NURSING
   RESPONSIBLE: Veronica Balcazar


2. REHABILITATION
   RESPONSIBLE: Dr. Jorge Hernandez
   ACTIVITY: Demonstration session


3. SUPPORT GROUPS AND NEUROPSYCHOLOGY
   OBJECTIVE: To promote awareness of the public about multiple sclerosis and their emotional and cognitive consequences
   RESPONSIBLE : Yaneth Rodriguez


4. 
   SOCIAL WORK ACTIVITIES: Wall newspaper and projected photographs


5. 
   RESPONSIBLE NEUROLOGY: Dr. Elizabeth Martinez


6. VIOLENCE


7. PSYCHIATRY
   RESPONSIBLE: Marian Spinola


8. ZOE MS association
   OBJECTIVE: Diffusion and exposure


9. PHARMACEUTICAL ACTIVITY
   : Broadcast Video

PROGRAM

11:25 photo projection that home visits made INNN

The INNN, led by Dr. Theresa Corona, who has a long history as a specialist treating MS, is a landmark health agency in our country: it emerge each year leading researchers and clinicians, but it is also an institution that provides high quality medical services in outpatient rehabilitation and hospitalization for people who do not have social security services and whose economy denies them access to private hospitals.

PHOTO: Main Entry INNN

11:45 Exhibition on Rehabilitation in MS

Rehabilitation is an indispensable part to be covered in the treatment of people with MS, because of the physical condition greatly depends on quality of life.

12:45 video projection of the pharmaceutical industry, and Yoga

specific medications used to treat MS were introduced in 1990 to the accelerated evolution. Steadily increasing supply of medicines and strengthening the research to find the best options, but the costs remain very high and inaccessible to most Mexican families.

The average monthly cost of specialty drugs for MS hovers around 2 000 500 USD.

is very important for the health sector of the Mexican government value the benefits that invest in these products are included in the basic drug long term because it is a very large profit, to avoid that young people have limited capacity for disease and retire early.

Regardless of the company that produces or distributes drugs for MS, they help people with MS have better quality of life, let's assets and represent a lower cost to the family economy, and in general to the economy our respective countries.

13:15 video projection "Living MS "

The video was provided by the English Federation to Fight Multiple Sclerosis, phellem, headed by our dear friend Pedro Carrascal.

was presented December 16, 2005, in the classroom Acts of the Ministry of Health in Madrid, the documentary produced by phellem "Living with Multiple Sclerosis."

13:45 Caregiver Experience

My wife, Ana Silvia became my caregiver when we started living together in 2005. I am a quadriplegic and I need help and care for all my activities and to meet needs physiological.

PHOTO: Mariano, Ana Silvia and I (November 2009)

Ana is also the mother of Mariano, who is now 7 years old. She, who studied journalism and communication sciences, had worked for 20 years in media and press offices and image, and even coordinated a children's culture. When I met her mother combined his duties with a few hours of class in the Universidad del Valle de Cuernavaca and advertising work in the agency creative synergy.

Today, Anne is devoted entirely to my care and Mariano, the home care, to chair the association ZOE and make social media work at the federation of EMMEX (Multiple Sclerosis Mexico, AC)

She has titled the talk that will occur in the INNN "I, Caregiver" , and frankly I do not know what I expect to hear, but knowing the passion that my wife has lived his life, no doubt it will be rewarding to witness their testimony of life with me, his testimony of life with multiple sclerosis.

14:10 gold clasp closure. Film Screening of World of MS, "Beautiful Day", with music by U2

------


We look forward to having the presence of more people.



IMAGE: Sketch of the areas of INNN

The address is Avenida Insurgentes sur 3877, Col. La Fama, Tlalpan, Mexico DF 14269 · Tels ( 55) 5606 38 22 - 01 800 8321 825 - http://www.innn.salud.gob.mx/



And if you want to carpool from Cuernavaca, please send an email to eliwitz@hotmail.com with your contact information to tell hours. Thank you very much.

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ZOE Anniversary of love Oscar and Cristina

Last week, on 5 May, the association Zoe, my wife Ana Silvia Barajas and I decided to formalize, served three years of being dedicated to the issue of Multiple Sclerosis I suffer neurological disease since 1983.

IMAGE: Letter of congratulations from President of the National Human Rights Commission of Mexico. (Full text at the end of post).

Although we did not we start a public activity or a cake, celebrate in the intimate family and had a nice surprise to open the correspondence: the president of the National Human Rights Commission, Raul Plascencia Villanueva, we sent a significant message of congratulations and encouragement, we appreciate because it makes us feel recognized and strengthened to keep fighting.



The story of my (our) organization dedicated to supporting people with multiple sclerosis (MS) in the state of Morelos, is long, and today I share with you and invite you to see the 5 of our video "The Power of Positive Thinking to the disease." In this video includes a selection of photographs showing the work of ZOE over three years.





HISTORY OF ZOE

When Anne and I met, I already had very advanced physical deterioration, my arms and my legs were paralyzed and needed help to meet all my needs and for any activity.

Anne and I became friends, first through messages via Internet, then by phone, and finally in person.

Multiple Sclerosis She knew only that it was an affectation ankylosing I had the image of paralysis, but no more. (Now he devotes several hours daily to study this issue and is awaiting news on the subject published around the world.)

Obviously, Ana was cautious to prevent the possible outcome of our contact, and told me that she was not sure of being able to have a loving relationship or future plans, because of my disability, "but with all So we decided to launch into the adventure of a couple. Soon, life was imposed on our own prejudices, and now we have five years of shared life.

She is my best friend, my hands, my feet, my confidant, my lover, my companion, my caregiver, my counselor, and my worst enemy. She knows everything about me.

With her, I do a project that I had for many years to form a support group for people with MS. On January 15, 2007 I made public my desire-yet-defined structure and received many messages of support, but mainly I received a very special gift from my wife, she gave me her own dreams and gave me ZOE, which already had a own history.

Ana Silvia, shortly before 2000, when he had just finished his first marriage, was suddenly involved in several social projects, was a partner in an ecology project and community led by a Catholic priest. The project was called "Club Green Transforming Our Environment."

At the same time, a renowned artist and teacher with extensive experience, Adrian Navarro Canedo, was embarking on an ambitious plan for using the arts as a means of preventing crime. The program is called "Art on the Street." Anna and Adrian had met in the mid 90's when my wife had to develop, complete and start the work of Children's Cultural Center "The Neighborhood" in Cuernavaca, a project funded by Conaculta and is supported by the State Government of Morelos.

-quantum matches Then they say, made it related to Ana Silvia Guadalupe Rodríguez Cobos, initiator and president of the Guadalupe Foundation, an educational project to support poor children.

But many things happened to close friends of my wife, who curiously did not know each other, and she was the only point of agreement. Lizbeth Cervantes de Anda, dear friend of mine and my wife's godmother Mariano, was maturing in those years the plan "Ghea" An integrative of respect for life from working with Mother Earth.

The same friend plan ecological activist priest Luis Angel Nieto Jimenez, who incidentally appears in hundreds of references when I googled, Cuernavaca left to settle in Los Angeles, California, under the jurisdiction of the Archdiocese there, and the Parish of Our Lady of the Assumption in Claremont, where he was responsible for the Hispanic community, Luis Angel saw that young Catholics wanted to do something, work to help.

Formed by young Mexicans living or born in the U.S. but of Mexican children, and led by Suzanne Lopez and Misael Jimenez, the group had the desire to work for the rescue of cultural roots and the promotion of nationalistic values \u200b\u200bin bilingual children. And so the second day of 2000, Ana Silvia traveled invited to California to build a plan that would create a cultural center for children of immigrants, whose main goal was to rescue the language and Mexican culture, and a network linking of Morelos in California.

All these things happened in life who is now my wife. But he also had concerns Ana spiritual development and so she joined the workshops of the Brahma Kumaris World, represented in Morelos by another good friend of my wife, Beatriz Sandoval, with whom he has been friends since they were girls. And Beatrice is also working for nonprofit human development.

Ana talked to his friends, discussing their progress and shared their progress in charity events that everyone did, and then the most logical thing was that she wove the network: he presented his friends with each other, encouraged them to see the matches . And she, in the middle of the group, consisting of a lesser or greater extent with every action, he became manager of support, an organizer of volunteers, seeking resources and to develop projects.

The total project was in itself a project, very ecumenical very plural, very secular and very inclusive, became ZOE.

Zoe was (and remains), as stated in your letter, "a way", the way to get them to take action and support tasks were translated to human development in different fields: ecology, children, art education, human values, culture, employment for vulnerable groups, young people and spirituality.

Zoe had an early life that was put into hibernation when Ana Silvia decided to be Mom. The work of former associations joined by Zoe continued and continue, some with the same scheme ago 10, and some advanced, but all continue. Ana

temporarily withdrew from the medium and Zoe became "a sleeping partnership."

Mariano was born in 2002 and Ana Silvia began to live out their years of mom. While caring for her baby Ana, occupied a few hours a week teaching journalism at the Universidad del Valle de Cuernavaca, but still beating heart of ZOE, waiting, following the analogy, the "kiss" the wake.

In 2005, when we unite our roads, I said to Ana Silvia who wanted to be a civilian organization, and she said "I have already a but is in recess."

spent 14, 15 months, talking about our ideals, our desire to serve others, and it was obvious that ZOE was already tired of his dream. Woke up and then touched to serve one of the areas that had not worked: health. ZOE reborn

to engage in multiple sclerosis because it is what touches us directly, we live day to day and what we can bear witness "in the flesh."

So, although strictly speaking the truth, ZOE is a little big girl, almost a teenager, turned 3 on May 5, 2010.

And obviously we hope to become old and leave offspring.

We welcome this anniversary, we thank those who helped us achieve this and applaud all those who have followed their dreams, but especially hope that at some point, ZOE has touched the lives of others for good .

TEXT OF THE LETTER OF CONGRATULATIONS TO THE CNDH

"2010, Year of the Fatherland. Top of the Bicentennial of Independence Centennial Home of the Revolution "CHAIR





Mexico City, May 5, 2010

C. Ana Silvia Barajas Vargas
President Zoe

Aid Association for People with Multiple Sclerosis *
and Tuberous Sclerosis and their families
in Morelos, AC

Dear Ana Silvia:

I send a warm congratulations to you and your team collaborators, to mark the anniversary of its organization.

take to express that safeguarding human rights is everyone's job, which involves a permanent work of public institutions and private citizens and Civil Society Organizations, to achieve the levels of welfare and development required by the Mexicans.

also invited her to continue this noble cause on behalf of human rights, which as we know, respect to them is the consolidation of a true culture of legality.

CONGRATULATIONS!

DR. Raul Plascencia Villanueva

* The original letter is read the word "tuberculosis"

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Testimony of three men living with incurable diseases:
63-year-old Humberto Dupeyrón, actor, film, theater and television, which has Multiple sclerosis (MS) from the 12 years of age;
66, Faivel Polichuk, an artist who lives with amyotrophic lateral sclerosis (ALS) for 17 years;
and Hector Garcia Caballero, a veterinarian of 46 years of age, with multiple sclerosis since he was 19 and now a quadriplegic.

In this initial segment, Ana Silvia Barajas, explains how it originated more than 10 years ZOE, the association president in Morelos and initially linked up and offered support to human development projects, and that from 2007 to date has been aimed at supporting people with MS and ALS .

The creator and host of radio program "Giving value to the Valuable, Lizbeth Cervantes de Anda, turned 39 the day before this issue dedicated to positive thinking. Outside
air, she and her guests laugh at the proposal to sing Las Mañanitas (Mexican song that is sung on the birthday), but Lizbeth wanted to hear the recorded version by Cepillín.

After the laughter, the program continues and we know the views of what can be so valuable when you have the miracle of life.

Beatriz Sandoval Vazquez, Brahma Kumaris Organization, talks about human development activities that the nonprofit organization made worldwide to promote values \u200b\u200bin Kumaris humanos.Brahma their facilities Cuernavaca, Colonia Rancho Cortes, offers free courses and workshops, including stress management, self esteem, positive thinking, and meditación.La Meditation, says Faivel Polichuk, helps you live.

Meditation, according to Humberto Dupeyrón, has proved a benefit to many diseases, in particular for multiple sclerosis is very helpful because some relaxation exercises favor respiración.Beatriz Sandoval, Brahma Kumaris, talking about how positive thinking wellbeing.


Humberto Dupeyrón speaks of the play "The Jungle" by Franz Kafka, who has represented for 21 years.

Humberto is about to break the record of actor Carlos Ancira, who presented for 22 years, the monologue "Diary of a Madman."

Then, photographs of activities of the association ZOE.

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Multiple sclerosis is a very cruel disease, says a friend. And I understand that called cruel because it gets quiet, surprising, moving and gaining ground. One day you're fine and the next you feel that your body is not yours, there is no way to do obey; feel that your voice sounds distant, your eyes lie. You can feel all that and then again wake up as if nothing had been different.

But multiple sclerosis affects more than the person with the diagnosis. Affects the entire family: I have been mentally sobbing mothers, brothers, avoiding contact with the eyes of sick children being afraid of changing parents, and friends away.

I have seen many many friends and family who keep away who choose to remain silent, in families that have a dramatic before and after arising from a neurologist said the words "MS."

My family also holds its own.

PHOTO: My son Mariano, my brother Oscar and I, visiting the fire station of Cabo San Lucas (March 2008)

Obviously in my childhood and adolescence not even draw the shadow of MS, there was not a sign that after 40 years I would be quadriplegic. And so I grew up, like any boy, sharing my life with my immediate family.

I am the youngest of five children. I have two brothers and two older sisters, but one of them is the most I've shared in my life, and with whom I have a very special empathy and connection. Obviously I feel love special for each of my brothers and I have memories of these moments, but only one was present at all stages of my life.

PHOTO: Oscar in Cabo San Lucas

Oscar was born just 18 months before me. When we were kids, my mother bought the same clothes, we went to the same schools, had the same friends, we were together all the antics and craziness that you can do when you live on the fifth floor of a building in downtown largest city the world.

My brother Oscar and I took by assault the stairs, roof, light cubes and sidewalks of the building where we spent the first years of life in Mexico City. He was always far more daring: swung like Tarzan on the outside of the window using the rod as lianas and luckily our apartment resistant curtains, water pipes used to play the handrail, but also five stories above the mainland, it was he who came home from school with dirty or torn uniform because he grabbed a fight with another child.

I've always been more "prudent" to put it in some way. I ventured to walk the ledge but not as a trapeze artist flying city dwellers and the only shock I noticed was my own brother, but never stuck to a stranger.

PHOTO: My brother Oscar and I (October 2008)

has been almost 40 years of those days. Then there are looming in my life, multiple sclerosis, and my brother seemed that a day would be forming guide construction professionals.

I do encourage you to tell me "macuarros" the pupils of the school of architecture, but this is how he labels in photos on Facebook. And the "professional" that the "macuarros" send messages of thanks, cabuleo and banter, nothing more and nothing less than my brother, the architect, now celebrates its day-that of Santa Cruz, as a good builder university degrees.

Oscar, with whom we once were two figures riding down the escalator Liverpool Store, "which certainly seemed that time no human children but slide-balls was the best rival Games that I have, was my teacher for the learning of children, was the-when we were teenagers, accompanied our father at the time of death, was my accomplice in youth binge drinking and my roommate until the day she married Rocío.

Today my brother lives thousands of miles from where I live, but most often talked on the phone, my confidant and still is a great moral and financial support for my board.

I have no words to thank you for your support, your eternal company, love and solidarity. When we're together, Oscar does everything possible for me to be comfortable, to fulfill my cravings and help without hesitation.

PHOTO: Oscar and I (March 2007)

Since childhood, my brother was very protective of me, but now that we're almost older adults, and paralysis has invaded my arms and legs, Now that MS prevents me fend for myself, I can not even sit without support, now Oscar when I hug my side, massaging my back, take my hand and pressed hers, kissing my forehead and cheek, hug me as if I were to break, and in those displays of affection gives me the soul, me back to life.

is my brother, and the distance and the years, have parted away our ties become more intense, much too strong. His love gives me strength, although I regret that on occasion he has cried to see my body shut down over the years, it hurts me it hurts my illness, I worry that suffer for my disability, but the heart fills me reiterate I love every moment.

PHOTO: My mother, my brother, my wife and I (October 2008)

There is something very special in this sibling relationship, obviously, but that very special cast roots as if we planted a tree together, and flowers of this plant are all one: the daughter of my brother is living flame of brotherly love.

Cristina, my niece, now young adults, has grown up seeing how his father does for me. No wonder my brother will stop any activity to respond to my calls, it seems normal to me that his father share the money he earns with his work, especially Cristy finds it natural to love me as his father has done.

When Cristy was born I already had multiple sclerosis, but still walking, sometimes with a cane and more slowly than others, "working in the clinic and was independent in my actions. She was a unique baby girl, fluent in her surroundings, with a special power over the will of their parents and a very keen sense of their ability to communicate with others.

PHOTO: The Arc of San Lucas

I call it the terrorist, because after two years, when even she did not even speak clearly, gave me a sample of your ability to learn and challenging his soul and surely inherited from my brother: I left my coffee on the coffee table. Cristina came and grabbed the cup with his hands pampered doll. Slowly slowly leaned that my coffee cup inside. While threatening to leak, I was staring at, but never stopped threatening to move his hands. I stood up and just when I was about to remove the cup from his hands, a moment before falling coffee, the girl laid her back on the table and laughed heartily at my gesture of fear content. The Terrorist.

Cristy was a few years and moved away from Mexico City when he was still very small. Her parents took her to live in Cabo San Lucas, in Baja California Sur. In those years, Cape was still an island with few inhabitants and many distances. And why did my niece.

PHOTO: Aerial view of Cabo San Lucas.

time was devoted to rescuing dogs and ended up having a dozen pets, all lovingly cared for herself. Then he worried about releasing turtles into the sea. Began to assert that his character so strong and individual. Strengthened its generosity and exercised their communication skills both personally and publicly.

PHOTO: Cristy girl playing with me.

Cristina soon became a teenager temperamental. I saw her, or she saw me in any case, once every year.

late winter, for several years my brother had arranged for a month I traveled to Cabo San Lucas, and those were for me the best weeks of the year for many reasons, but especially for the niece witty and affectionate longing for his family who came from afar.

PHOTO: Strolling on the beaches of Cabo, on a seat "spell", invented by my brother so I could stay balanced.

went together to see the whales in Puerto Lopez Mateos, Cristina and I with the rest of the family. Fun days spent on the beach of El Medano, and laughed at those holidays where we reencontrábamos annually.

And then one day, after serving 15 years, Cristy asked his father to take her to meet family came to Mexico for my niece was living with his cousins \u200b\u200b(the belief that it could be a bit like having a brother) and then went to Puebla and Tlaxcala, to meet second cousins, aunts and uncles, grandparents, seeking the roots of the Garcias.

FOTO: Cristina García

Cristina es muy especial. Al igual que pasa con mis hermanos, quiero a todos mis sobrinos, pero el estilo y la personalidad de Cristy me facilitan decir que con ella hice vínculos, que ella aprendió a verme y que entendió el modo de conocerme.

Quizá porque sólo me veía una vez por año. Quizá porque al principio me veía andar lentamente pero después me vio llegar sentado en una silla de ruedas, o quizá porque en años más recientes incluso tuvo que ayudarme a comer y acercarme la Coca-Cola para que yo bebiera, pero siento, sin temor a equivocarme, she has very sharp
a picture of what MS has taken away and what that disability has given me.

We have grown both my niece and me.

PHOTO: Christina, my mother, Oscar and me.

She

into a determined young woman who will soon go to college, and I to become a gentle and patient late father, one who married at age 45 and is just living the experience of parenting but it has many memories and anecdotes of the month saw Cristina The terrorist was learning and maturing.

View Cristy grow, share their joys, their tantrums, their dreams, made me want to have a family.

I feared in my youth being a parent. I did not know what my illness would have prepared. The uncertainty weighed on me. But today it was about to tell me 50 years, I decided to live and live, but that definitely I have a lot to thank my brother and his wonderful family, especially his daughter who gave me a month every year that feel light your emotions aside the paternity d splashing with his brilliant sparks.

PHOTO: Oscar and Cris (2007)