Escalando com Distonia/Climbing with Dystonia

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Raphael Nishimura  esteve  na região de Algodão de Jandaíra/Paraíba para um encontro de Escaladores do Nordeste nesta semana que passou. Ele é um profissional da escalada esportiva e tornou vice-campeão mundial e campeão brasileiro de ParaClimbing(2012) apesar da sua distonia muscular desde os 8 anos de idade.

Ele é amigo do namorado de uma sobrinha minha e ficou estes dias na minha cidade: Campina Grande.  Marcamos para nos encontrar e conversamos sobre nossas experiências de uma vida com distonia, mas não foi possível devido as agendas tumultuadas. O nosso encontro ficou para uma próxima vez.

O que me chamou a atenção é que este rapaz é um exemplo de vida, superando limitações impostas pela doença e buscando concretizar os seus sonhos.  Apesar do impedimento corporal, ele tem conseguido ser um atleta exemplar da escalada e viver a vida normalmente. Muito bacana e emocionante!

Para quem não sabe, Raphael Nishimura é uma pessoa importante no universo “Climbing” e fundou o Projeto de  Para-Escalada (ParaClimbing Brasil) em 2011, que tem como objetivo divulgar a escalada  e a inclusão de pessoas com deficiência física neste esporte.

Além de viver escalando por ai com distonia, ele é formado em Midias Digitais (PUC), MBA em Gestão de TI (FIAP) e Pós em Finanças (FGV).  Pois é, conheça mais sobre este atleta que vive com distonia nesta entrevista ao 4Climb.

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Raphael Nishimura  has recently visited the region of  Algodão de Jandaíra/Paraíba  for a Meeting of the Brazilian Northeast Climbers , in the past week.  Despite his musculorum deformans dystonia since the age of 8, he is a professional of the climbing sport. “In 2012, he overcame his disability to become Brazil’s national champion in paraclimbing and won second place at the world championships” said Felipe G. Santiago, the video’s producer.

He is a friend of my  niece’s boyfriend. During this event, he was staying in my hometown: Campina Grande.  We arranged to meet us and talk about our experiences of a lifetime with dystonia , but it has not been possible due to various commitments. Our meeting was for a next time .

What caught my attention is that this boy is an example of life , overcoming limitations imposed by the disease and seeking to achieve his dreams . Although  his disability, he has managed to be a climbing’s exemplary athlete. Very cool and amazing!

For those unaware , Raphael Nishimura is an important person in the ” Climbing  world”  and founded   ParaClimbing Brazil” Project  in 2011, which aims to promote climbing and inclusion of people with disabilities in this sport.

In addition to devoting his life to climbing with dystonia, he holds a degree  in digital media ( PUC )  and Masters in Finance ( FGV ).  Yeah , You want to know more about this athlete that lives with dystonia.  Read this interview: 4Climb.

Mãos Indomáveis/Untamable Hands

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Desde a minha adolescência eu procurei várias formas para aliviar o meu sofrimento e viver melhor com a distonia.  Foi nesta época que eu comecei a praticar Yoga e Tai Chi Chuan. Descobri no exercício físico e nas artes taoistas uma forma de buscar um equilíbrio, para me sentir firme e seguro, para aprender a viver bem com a  CE – Câimbra do Escritor… com as minhas mãos indomáveis.

Cansado de sofrer e sem entender o que estava acontecendo comigo, na juventude comecei uma peregrinação nos consultórios médicos para descobrir o que eu tinha. Como todas as pessoas que sofrem desta doença estranha, eu fui vítima constante de diagnósticos errados e de falta de informação a respeito desta condição de saúde.

Na tentativa de buscar uma solução e um alívio para o desconforto e a deficiência, eu já usei Artane, akneton… já fiz várias sessões de botox, disport… já me desesperei muito… já superei muitas dificuldades… já fiz acupuntura… já escrevi muito sobre a minha vida com distonia…   já fiz muita coisa para buscar a leveza das mãos.  Todas estas tentativas terapêuticas começaram na adolescência e se intensificaram só a partir de 2001 quando eu fui diagnosticado corretamente por um neurologista.  Eu posso  dizer que eu tentei medicação após a medicação, cada uma trabalhando por algum tempo, mas eventualmente, a distonia sempre voltava com uma vingança.

Na verdade, toda esta peregrinação resume-me no seguinte: uma busca incansável para viver bem com a Câimbra do Escritor e poder usar as mãos normalmente sem fazer um esforço grande. Às vezes, eu tenho a sensação de está sozinho num mundo hostil. Ninguém pode me ajudar. A doença permanece incomodando as minhas mãos e irradiando-se pelos braços. O desconforto e a luta para ficar bem é grande.  O medo que a doença tome conta de outras partes do corpo é maior. Eu queria desfrutar pelo menos um dia sem a distonia. Eu não sei como é viver sem Câimbra do Escritor!

De 10 anos para cá, eu tenho escutado de algumas pessoas com distonia que para viver bem com esta condição de saúde é preciso ter um estilo de vida diferente: dormir bem, fazer algum exercício físico, não tomar café ou qualquer bebida que contenha estimulantes, se alimentar corretamente. Eu confesso que sempre procurei me cuidar seguindo estas dicas… preocupado em ficar bem com as minhas mãos revoltadas e desobedientes.

Bom, eu entendo que estes são hábitos saudáveis para qualquer pessoa viver bem…  Mas, eu penso que para qualquer um que vive com distonia estas dicas fazem diferença. Eu aprendi duas dicas muito importantes para se viver bem com CE:  não dá atenção às pessoas que não entendem você e  acreditam que você está simulando doença para chamar a atenção; não se importar com o que as pessoas acham a respeito da deficiência e  não ficar se explicando.

Eu tenho aprendido com muito esforço que outra dica para viver bem é  a aceitação das minhas mãos deficientes. Até aos meus 35 anos eu conseguia praticar o Tai Chi Chuan usando as mãos normalmente. Hoje em dia, a doença evoluiu tanto que executar harmoniosamente uma sequência de exercícios de Tai Chi tornou-se difícil e chato por causa das mãos aleijadas.

Eu poderia dizer que  tenho vivido  desde a minha infância entre a dança das mãos leves e harmoniosas dos movimentos do Tai Chi e a dureza e rigidez das mãos deficientes que tem dificuldade para executar movimentos simples como escrever, digitar, folhear um livro e pegar num talher. Eu tenho feito de tudo para viver bem com as minhas mãos. O Tai Chi  tem ajudado muito nesta luta para não deixar a doença dominar de vez o meu corpo…  as minhas mãos.

Diante desta jornada para encontrar movimentos leves e suaves das minhas mãos, eu aprendi algo muito especial com a filosofia da yoga taoista – tai-chi:  é que nós devemos aprender com o junco que mesmo diante da tempestade com ventos fortes e desfavoráveis, ele se inclina mas não se quebra. Eu tenho observado que a aceitação e o fato de não se importar muito com as pessoas que não nos entendem são dois comportamentos saudáveis para não nos deixar frágeis emocionalmente e nem adoecermos mais ainda.

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Untamable Hands

942379_561228937246325_908155238_nSince my  teenage  years,  I have tried several ways to relieve my suffering and live better with dystonia. It was at this time that I began practicing Yoga and Tai Chi Chuan. I have discovered in these exercises and the Taoist Arts a way of seeking a inner equilibrium, to feel strong and secure person to learn  living well with  WC – Writer’s Cramp…  with my  untamed hands.

Tired of suffering and not understanding what was happening to me, in my youth I began a pilgrimage in doctors to find out what I had. Like all people who suffer from this strange illness, I was constantly  victim of misdiagnosis and lack of information about this health condition.

In an attempt to find a solution and a relief for the discomfort and disability, I have used Artane, akneton… I have done several sessions of botox, disport… I have already despaired so much… I have overcame many difficulties… I’ve done acupuncture… I have written much about my life story with dystonia… I have done a lot to get the lightness of hands.  All these therapeutic trials began in adolescence and only intensified since 2001 when I was diagnosed correctly by a neurologist. I can tell you that I’ve tried medication after medication, each working for awhile, but eventually, the dystonia would return with a vengeance!

Actually, this whole pilgrimage summarizes me the following: a relentless pursuit for living well with Writer’s Cramp and can using  normally my hands  without making a big effort.  Sometimes I have the feeling of living alone in a hostile world. No one can help me. The disease remains bothering my hands and radiating to my arms. The discomfort and struggle to get well is great. My fear that the disease invades other parts of my body is much higher. I just wanted to live at least a day without dystonia. I do not know how to live without Writer’s Cramp!

About ten years  ago today  I’ve heard of some people with dystonia that to live well with this health condition is necessary to have a different lifestyle: sleep well, practicing physical exercises, do not drink coffee or any drink containing stimulants, feed properly. I confess that I have always tried to take care following these  health tips … worried in getting  well with my angry and disobedient hands.

Well, I understand that these are healthy habits for anyone to live well … But I think for anyone living with dystonia these tips can make a difference. In this journey,  I have learned two most important tips for living well with Writer’s Cramp: It is not giving attention to people who do not understand you and believe that you are faking illness to draw attention; not caring what people think about this disability and not be explaining it.

I have learned with great effort that another tip for living well is the acceptance of my disabled and untamable hands. Up to 35 years old I could practice Tai Chi Chuan using  normally my own hands. Today, the disease has evolved so much that run a Tai Chi  exercises with harmony  has become difficult and annoying because of my crippled and untamable hands.

I could say that I have lived since my childhood trying to seek the Tai Chi  movements’ soft and harmonious Hands Dance and seeking relief to the crippled hands’ Hardness and Stiffness who have always had difficulty to perform simple movements such as writing, typing, flip through the pages of a book and pick up a utensil. I have done everything to live well with my hands. I confess that Tai Chi has helped a lot in this fight not to let the illness dominate completely  my hands and my body.

During this journey to find light and soft movements of my hands, I have learned  another very special thing with the  Taoist Yoga philosophy – tai-chi: we should learn from Reed that even before the storm with strong  and unfavorable winds, it tilt but not break.  I have observed that the acceptance of the  untamable hands and  the  matter of not to care much about the people who do not understand us and think we’re faking illness to get attention are two healthy behaviors not to leave us emotionally fragile and not get sick even more.

Tai Chi Chuan e Distonia

Aprendi Tai Chi quando estava começando o curso de Sociologia com uma professora do Departamento de Química da UFPB que trouxe a técnica da “Taoist Tai Chi Society of Canada”. O estilo trazido pelo Mestre Moy Lin-Shin e difundido pelo mundo. Esta prática tem sido muito importante para mim, pois conseguiu retardar um pouco a distonia.  Hoje, pratico este estilo muito pouco. Tenho feito com maior frequência o estilo simples com 24 posturas que aprendi com o Mestre Dada Inocalla em Brasília há quase 20 anos.

O Tai Chi é uma sequência de movimentos lentos que no meu caso ajudou também a prevenir  que a doença se complicasse e evoluisse mais cedo.  Não existe nenhuma comprovação cientifica que o Tai Chi assim como qualquer prática da medicina chinesa tenha alguma eficácia no tratamento ou na prevenção dos distúrbios neurológicos do movimento, porém percebe-se uma ação positiva neste aspecto. Esta prática, também, ajuda muito no equilíbrio emocional, na disposição e qualidade da saúde em geral.

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Overcoming Boundaries with the Writer’s Cramp


I have writer’s cramp since my childhood. I have used both hands to write: I’m ambidextrous. I have had difficulties to write since when I began to study at school. I didn’t know this disease.  I had always felt as a timid person because of this disability. So, I have developed social phobia due to dystonia.
Despite everything, I have studied and today I have a profession.  Anciently,  I thought I would never be able to do a course at the university due to writer’s cramp.  But nowadays, I am a psychologist.
I found that I had writer’s cramp in 2000 when I went to my neurologist. He prescribed Artane that had no effect and then he prescribed akneton, but I used for a short time, because I had not realized an improvement in dystonia.
Then, I began to take wine in meals for some time. Helped a little, but I did not wish to continue taking wine because dependence!
I went to the another neurologist, indicated by him. She suggested the introduction of botulinum toxin. I did not want because I was afraid and because it was expensive. I needed to get botulinum toxin injection every 4 months.
In 2008, I spoke to Doctor J.M. again and I got my first  botulinum toxin injection, in June. The SUS –  Brazilian Public Health  System – offers botox for free to neurological diseases. The second time I got my botox injection was in late November.
In 2008, December I did a consult with the neurologist at the Sarah Kubstchek hospital in Brasilia. A reference centre for neurologist diseases.
In  2009, January and February I did certain examinations in this hospital: blood, magnetic resonance…  And return to neurologist. I was submitted to a pedagogical and physiotherapy evaluation.
In April, I started to participate in an online community in a social network called Orkut, which gave me a lot of joy, because I met people who suffer the same desability as mine: writer’s cramp.
In May, I did another  pedagogy workshop. I relearned to write with the left hand. In the past, I had already learned to write with another hand, but I forgot due to lack of use it.
In July, I will get my 3rd botox injection with Doctor J.M., in his private clinic in Campina Grande – my city.
Well, I had dystonia since literacy. I’m left-handed and my mother taught me how to write with the right hand due to dystonia. In this way, my life became a hell. I always wrote slowly and without way to pick up the pencil and all my colleagues were laughing at me.
I have suffered much until today.

My school life has always been difficult and traumatizing…  Imagine you strive to study with writer’s cramp. I did not know I was a  dystonia  sufferer and I was forced to study by my parents. Today, I thank them despite all the suffering that I have experienced. They also did not know  I’ve always been a  dystonia sufferer since my childhood. The doctors did not know this weird disease…  Most people thought I was faking an illness to get attention. All were ignorant and stupid with me. This kind of distrust is what most mistreat anyone.

All this left me disgusted and angry. Nobody ever understood me and I did not know what was happening to me!  I thought would never be able to finish my studies.  One of the greatest achievements of my life was to graduate in psychology!

I have always practicing swimming, yoga and Tai Chi chuan  since my teenage years.  All this helped me a lot. Even today, I have practiced Tai-Chi…  I like to run and do weight training…
Today, after 40 years the disease began to worsen and I started to feel my hand becomes  with rigid and stiff movements. I can’t type as before. Writing and typing became bad and boring things.
Currently, I am using botulinum toxin, using a rubber thick pen and a ringpen which has helped a little. They are some palliatives and  intelligent adapters.
I have noticed that the botulinum toxin improves posture when writing, the firmness in writing and a better footprint in pencil. About the slowness and lack of agility to write it has no improvement. I’m still writing with strength.
Well, today I am 43 years and I realized that dystonia is worse. I can’t type with the right hand and have a difficulty to use the mouse. I need to use the computer and write often because of my profession. So, I have suffering too much with this limitation.
But we must move forward.
You know, I spent a long time not accepting my dystonia. But, I learned that we have to live well with dystonia, overcoming boundaries!

O Tai Chi Chuan na Vida Cotidiana

 O TAI CHI CHUAN NA VIDA COTIDIANA
Este artigo foi publicado no Jornal da Paraiba em janeiro de 1989 quando eu dava aulas de Tai-Chi-Chuan em Campina Grande.

Tai Chi Chuan

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O TAI CHI CHUAN é uma arte milenar chinesa e através de seus exercícios suaves busca a saúde do Homem de Bem.
A prática do Tai-Chi ocasiona um impacto no SNC e constrói uma fina base para o melhoramento dos outros nove sistemas orgânicos do corpo humano: estrutura óssea, músculos, aparelho circulatório, sistema linfático, aparelho excretor(pulmões e rins), aparelho disgestivo, glândulas endócrinas, sistema nervoso e orgãos sensoriais.
Além de tranquilizar e aumentar a percepção…

I`ve been practiced Taoist Tai Chi since 1990. The style that I learned came from The Taoist Tai Chi Society of Canada. The Taoist Tai Chi was first introduced to North America by Master Moy Lin-shin. He studied the Taoist arts of health and longevity for over thirty years in China and Hong Kong.

With diligent practice, this type of movement produces a profound effect on all systems of the body by reducing tension, improving circulation and increasing strength and flexibility. In time, the internal aspects of the art of Taoist Tai Chi penetrate deeper than the muscles to benefit the entire physiology.

I began to learn lok Hup some years ago but …

Lok Hup Ba Fa is a fundamental taichi concept. Lok Hup (literally means 6 togetherness, if there’s such a word in English) 3 of them governs the mental part of taichi and the other 3 takes care of the physical aspect.

3 internal togetherness (groan… roll eyes) – Heart and Will, Strength and Chi, Tendon and Bone.

3 external togetherness (i gotta stop groaning) – Hands and Feet, Shoulders and Hips, Elbows and Knees.

Basically, you need to seek harmony with the elements to achieve the 6 harmonies. Once you get them together, your skills will improve tremendously.