Today’s Prompt: Recap NHBPM
I’m very happy to have reached the end of the NHBPM and achieving this great challenge. I confess that it was a great effort for me because of limitations caused by writer’s cramp. Actually, I think this event is a important marathon for health activists bloggers.
I think the NHBPM 2012 was a very formidable and organized event. The wegohealth staff gave us prompts options and it had proposed interesting and creative topics. I’m very proud to have had this opportunity to have joined this event.
I had the opportunity to read some articles of blogs that have participated in NHBPM 2012 and really enjoyed the quality of the articles.
I think this event is a Christmas present and it is a great opportunity and a special moment for patients and all who are engaged in health activism.
Today’s Prompt: “If I could accomplish one thing (anything) in 2013 it would be…”
If I could accomplish one thing in 2013 it would be helping researchers find a cure for dystonia or a treatment to improve symptoms of the disease;
If I could accomplish one thing next year it would be to find a treatment to improve my health conditions regarding to writer’s cramp;
If I could accomplish one thing in 2013 it would be to begin studying my specialization course on “Mental Health and Psychosocial Care”;
If I could accomplish one thing next year it would be to meet all my virtual friends who live with dystonia;
If I can accomplish anything in 2013 it will be to continue writing articles for my blog with the goal of helping people who live with dystonia;
If I can accomplish anything next year it will be evolving and developing devices to enhance my performance while Dystonia Activist Blogger.
Today’s Prompt: Write about how you deal with mean comments/trolls/ or bullies
I think the worst thing that Dystonia Activist Blogger deal, they are exactly the nasty and provocateurs comments. But worst of all is the lack of comments, the disdain, the contempt and inconsiderateness attitudes.
When someone makes nasty or bullies comments, I just do not pay much attention. I usually delete the comment or not consider it. These attitudes are not welcome.
I usually consider and appreciate the positive comments and constructive criticism. People who have sensitivity and education, people who have knowledge and experience to exchange ideas on the subjects that I write are welcome and should be reciprocated or deserve due credit.
Today’s Prompt: I bet you didn’t know…
I bet you did not know that writer’s cramp is a very complex disease;
I bet you did not know that the dystonia is more of a neurologic movement disorder, which affects mood and cognition;
I bet you did not know that body movement, emotion and cognition are intertwined. And you did not know that the concept of psychomotricity involves these three dimensions;
I bet you did not know that when you work in a profession where you need to write, but can not because of writer’s cramp, makes you suffer more;
I bet you did not know that writing and use the computer for a patient with writer’s cramp is a very great effort;
I bet you did not know that being a Dystonia Activist Blogger is not an easy thing;
I bet you did not know that writing a post a day without losing your focus is a great challenge;
I bet you did not know that writing a post a day with a disability such as writer’s cramp is much more than a challenge;
I bet you did not know that writing about your own condition is a form of therapy which is good for your heart and to the soul.
Today’s Bonus Prompt: How you take time for yourself
I like to do some things to take some time to myself.
I like to watch movies, listening to good music…
I like to dance ..
I like going to the beach, have a beer.
I like to access the internet, even with the limitations of my hands because of writer’s cramp.
I like to read books and write articles for my blog.
I like to drive motorcycles and traveling …
I like chatting with nice people.
I like to spend a weekend in the countryside, on a farm.
Today’s Prompt: How have your goals as a patient/advocate/person evolved?
I think I have reached my goals with this blog because I have seen many comments and people with dystonia accessing it and being satisfied with the content that they find it. This is an interesting way to advocate!
I feel very happy for that and I realize I’m not alone in this difficult journey with dystonia…
Another thing that makes me realize that my goals have evolved as a patient is that I have made many friendships with people who have the same condition as mine and we exchanged information about how to live better with dystonia and on the advancement of medical research in this area .
Increasingly, I have learned about the disease. This has stimulated me to research and read more about the neurologic movement disorder. I have sought help people with dystonia through my blog.
I think this is a great advance for anyone living with dystonia: is involved in some health activism. I have found other blogs that share my same condition. I have been increasingly encouraged to continue practicing Dytonia BloggerMania:. I conceptualize this as Dystonia Activism.
My goals have evolved as a person. I have managed to work as a psychologist and coordinate a Psychosocial Care Center that cares for psychotic people. Despite the limitations caused by writer’s cramp, I have lived intensely.
Today’s Prompt: Write a TV episode of your favorite show that features someone with your condition. What do you want people to know?
This video is not a favorite, but a story that I found doing research on writer’s cramp. According to a news story, Flinders University researcher is testing a new treatment for writer’s cramp. The news was posted on Youtube a year ago. This ABC TV report entitled “New treatment for writer’s cramp” caught my attention.
After all, a story of this importance, everybody has to know. I can not understand English well – especially the Australian English – but I put subtitles in English and I understood the news. This Youtube’s feature is very formidable: automatic captions.
I wish all friends who live with dystonia seek to investigate this important discovery. To what extent this finding is true? The treatment is based on “Non-invasive brain stimulation study” for focal dystonia. You can access more information HERE.
Check out more about the effectiveness of therapy on the Flinders University‘ s website. This university is located in the city of Adelaide, South Australia.
Today’s Prompt: What’s something your doctor taught you or you taught your doctor?
I found it difficult to write about this topic. But when I first read it, my mind suddenly remembered a tip that a neurologist at the Sarah Kubitschek Hospital (Brasilia) gave me. I was angry and never forgot what she said. This happened in 2008.
“Excuse me, but I can not do anything for you regarding the writer’s cramp,” she said. She continued by saying that I would have to find adaptive ways to write or even use a fork or things like that.
I think I had a hope, an illusion of finding a treatment or palliative to help me write or type without much difficulty or suffering.
“There’s no treatment yet,” she said. I swallowed hard. But the end of the sentence that says: “… yet,” made me think about the possibility of still having the hope of a solution…
I felt a sense of disappointment in the consultation. I rushed out of the office and feeling displaced.
I still have a hope of finding a cure for dystonia!
Today’s Prompt: Thanks Post. Write about what you’re thankful for!
In November 2012, the month of the “National Health Blog Post Month” Event , my Blog has reached and surpassed the twenty thousand accesses. A very nice coincidence and that has me excited.
I am grateful for this opportunity that the Wegohealth company has given to us and it is much more than a challenge. It is an opportunity to develop ourselves and be more professional in the art of making blog. I appreciate the support provided by Wegohealth to health activists bloggers. I have learned a lot from this. I have sought help people with dystonia through my blog.
I also thank the readers of the blog today. Because of them, my blog has already exceeded 20 thousand hits.
I thank all my friends who live with dystonia. I thank Brigitte Leturcq, Pamela Sloate and Paddy Doyle for consideration, friendship and dystonia activism.
This month I’m participating in the #NHBPM Event, my blog has reached the following numbers: 51 followers; 175 posts and 96 comments. “CÂIMBRA DO ESCRITOR” has been the most accessed post and the month busiest was April 2012 with 1296 visitors. April 2012 was exactly the month I have participated the # HAWMC (Health Activist Writer’s Month Challenge) Event promoted by Wegohealth. Another nice coincidence!