Hoje eu percebi mais uma vez como é difícil viver bem na civilização da escrita e na era da mídia digital quando se é um paciente com CE – Câimbra do Escritor. No corre-corre para resolver problemas simples como preencher um formulário numa dada repartição, preencher um envelope para depósito de cheque, assinar alguns documentos e usar o computador para enviar alguns emails eu me enrolo, me deparo mais uma vez com a limitação e a dificuldade que eu tento superar e não consigo.
Tento ficar bem, mas estas pequenas coisas são o suficiente para me tirar do sério, me deixar chateado e cansado: me faz perder o dia. Eu sei que estes sentimentos são naturais para qualquer pessoa que tenha uma deficiência ou limitação corporal e tenta superá-la sem sucesso.
Mas, como conviver bem com tudo isto diariamente sem que a vida se torne um fardo e uma jornada desanimadora? Como ficar bem se depois de tanto esforço eu não consigo executar tarefas simples como preencher um formulário…
A day with Dystonia
Today I realized once again how difficult it is to live well in the writing civilization and in the digital media age when you are a patient with WC – Writer’s Cramp. In the hustle and bustle to solve simple problems like filling out a form in a public office, fill out an envelope to deposit check, sign some documents and use the computer to send some emails I get paralyzed and faced once again with the disability caused by dystonia that I try to overcome and I can not.
I try to be fine, but these little things are enough to make me crazy, make me upset and tired. I know these feelings are natural for anyone who has a disability or physical limitation and try to overcome it without success.
But how to get along well with all this without my own life becomes a burden and discouraging journey? How will I be well if I can not performing simple tasks like filling out a form, despite all my effort… How to deal with crippled hands and a debilitating disease if I need to write all the time?
This is a film produced by Renato Cabral, a Brazilian who is a director of films and shows examples of motivation and determination in life.
‘I believe each one when born gets a magic lamp and inside, there are three miracles of genius: a past to be remembered, a body to live the present and dream to create a future. Some, during this journey, remember to repay this grace with something besides gratitude, a gift back, a good for the universe. This film is my way of saying thank you. This is the gift that I leave the world for the life that I won and chose to live by’, said Renato Cabral.
I enjoyed the movie and for this reason I am sharing here and helping the world to know this story. I dedicate it to all my friends who live with dystonia and especially for bloggers who joined to “Dystonia BloggerMania” group.
Este é um filme produzido por Renato Cabral, um brasileiro que é diretor de filmes e mostra exemplos de motivação e determinação na vida.
“Acredito que cada um quando nasce ganha uma lâmpada mágica e, lá dentro, três milagres geniais: um passado para ser lembrado, um corpo pra viver o presente e sonhos para criar um futuro. Alguns, durante essa jornada, se lembram de retribuir essa graça com algo além de gratidão, um presente de volta, um bem para o universo. Este filme é o meu jeito de dizer obrigado. Este é o presente que deixo ao mundo pela vida que ganhei e pela que escolhi viver”, disse Renato
Eu gostei muito do filme e por esta razão estou compartilhando aqui e ajudando o mundo a conhecer esta história. Eu dedico a todos os meus amigos que vivem com distonia e em especial aos blogueiros da distonia que se juntaram ao grupo Dystonia BloggerMania.
Today’s Prompt: We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!
I confess it was not easy for me to get so far: day 29. The challenge of writing a post a day can be a big effort for anyone. Just imagine how difficult it is for a person with writer’s cramp. I have used adapters to write and type. Even so, I feel a great discomfort and I’ve done a tremendous effort that most of time discourages me use simple things like a pencil and a computer… I think this is one of the things I like about myself, the determination and the persistence.
Another thing is that I’m great at my profession. I consider myself a good psychotherapist and I have a peculiar way to deal with people: empathy and comprehension. What a modest guy! A psychologist living with Writer’s Cramp.
Finally, I am a compassionate, fair and a good man. I always try to make the Good! It is no wonder that the name of my blog is: Good Men. A good man living with dystonia.
Congratulations on a great month so far!
A special thanks:
I am very grateful to my wife for having patience with me and take care of me in order for I shall live better with writer’s cramp. Although she could not do much for me, at least, she gives me affection, help and support.
Life with Dystonia, was the subject of a conversation that Dr. Marie-Helene Marion, a Frenchwoman neurologist specializing in movement disorders, had with a support group for people with dystonia in London , about 12 months ago.
According to her, the dystonia is or becomes a source of disability; a source of pain considering that the diagnosis often is delayed; a source of anxiety and a source of despair.
According to her, the patient should become an actor of their treatment, they should be well informed about the disease, having knowledge of the disease’s entire process and possible treatments and each case should be handled as only.
All this has been said by the neurologist is not new to me, but I learned a lot from these reflections because we can only live well with dystonia if we have well informed about the symptoms of the disease and its peculiarities manifested in every person. What caught my attention is the fact dystonia be a source of a depression, distress and despair.
At the current moment, I think what everyone should know is that every patient should be an actor of their treatment and that each case must be carefully treated as unique. And everyone should know that Dystonia is more than a movement disorder!
Today’s Prompt: The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan. True or false? When do you bloom best?
I think this thought of Mulan is a real and profound philosophy. The flower that blooms in adversity is the most beautiful because it makes a difference, draws attention of all and really becomes rare and unique.
I think all of us who have dystonia are a flower that blooms in adversity because even with the limitations and suffering we have sought to live intensely.
I think the best moment that I have bloomed was the decision to be a Dystonia Activist Blogger. Write about your experiences and about your health condition is not easy. Being a health activist means blooming in adversity!
I think all the bloggers friends I met in the “Dystonia BloggerMania” group on Facebook are pretty flowers that have arisen in a dry desert and are making a difference.
Although dystonia and bad days we have experienced, I think we’re a new light and a beautiful flower in the desert, because we have the courage to show our face and be real activists bloggers.
Our struggle is worth it! We deserve the love and support we have received. It is worth educate and raise awareness about dystonia through our blogs and our experience of a lifetime with dystonia. The beauty of life is to see the value that is around us, even when the darkness surrounds us.
I raise a toast to all the friends of the “Dystonia BloggerMania” group! We are the real flower that blooms in adversity and in the wildness! All of you are very important to me!
Today’s prompt: Patients, what advice or tips do you have for caregivers out there – professional or otherwise!
Today, I’ll transcribe a post I wrote for the #NHBPM 2012 called “Caring for patients with Write’s Cramp“.
The reason I do this were as follows: firstly this article addresses the same subject and secondly I’m having great difficulty typing because of illness. And lastly,I really liked this post that was written in November 2012.
Caring for patients with dystonia is not so simple. We’re talking about patients with neurological disease. I think the neurological movement diseases not only affect physical performance, but is a source of emotional instability, anxiety and mood disorders.
In the case of writer’s cramp, the simple fact of not being able to write or type in the civilization of writing and computing is a cause of emotional distress and feelings of inadequacy. Caring for patients with dystonia is necessary to perceive you as a human being in its various aspects. Not only the physical dimension.
Anyone who is caring for someone with dystonia need to have awareness that the patient should become an actor of his treatment, he should be well informed about the disease, the patient must have acknowledging of every illness process and possible treatments and ultimately each case should be treated uniquely.
Your patient will have good days and bad days. Sometimes, the pain and the discomfort they are experiencing is probably some of the worst in their lives. You need to know how to handle it.
You should understand that patients with dystonia lives a real nightmare!