Recap HAWMC!

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Today’s Prompt:  Today, write a recap of your experience.  What was your favorite prompt? Least favorite? What have you learned? Describe your HAWMC experience in one word!

I really enjoyed taking part of this challenge. I confess that it was not easy to write a post a day, despite the prompts were very interesting and nicely drawn up.
I do not know much to say, but this event was a moment of a great learning and this was a month of education and  raise awareness about  our conditions. I think this  was a month of  reflection about our  health activism.
HAWMC is definitely an important event for Health Activist Blogger.
I had the opportunity to meet many bloggers and share other conditions. This is important for our self-esteem.
Finally, I liked most of the prompts, but I want to highlight, at this moment,  the following posts:

Day 2 =Introductions: A Lifetime with Writer’s Cramp

Day 7 = Ridiculous Things about Writer’s Cramp

Day 8 = The Crab and the Writer’s Cramp

Day 12 = Hindsight:a diagnosis of writer’s cramp!

Day 14 = Spread the Love!

Day 15 =Sharing “Go Blue

Day 21 = Dystonia Bloggers: a flower in the wilderness

Day 22 = Everyday life of a Blogger!

Day 23 = No technology, harder health activism!

Day 25 = Learning about Dystonia

Day 26 = Pain-Free Pass

Day 27 = Books of a Man with Writer’s Cramp

Day 28 = Must Follow!

Well, I can describe my HAWMC experience as follows: a real CHALLENGE, “Go Blue for all Health Conditions!” and ” Health Activists Bloggers: a flower in the wilderness”.

It’s over…

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Congratulations to a Good Man!

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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.

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Must Follow!

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Today’s Prompt: Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

I have a list on Facebook about my condition and that I access with frequency to share the daily life of people with dystonia. Among these, I suggest the “Dystonia BloggerMania” group created by Pamela Sloate which brings together  dystonia bloggers. Check out the “Must Follow List” below:

1º) Dystonia BloggerMania – USA

2º) Face2Face Dystonia  –  USA

3º) Support4Parents of Children with Dystonia  –  USA

4º) WEGO Health  – USA

5º) SOUTENONS AMADYS  – France

6º) Câimbra do Escrivão  – Brazil

Here another Must Follow List about Dystonia Blogs:

1º) Pamela Sloate at  Chronicles of A Dystonia Muse   – USA

2º) Pat Brogam at Battery Powered Person  –  USA

3º) Paddy Doyle at The God Squad  – Ireland

4º) Marissa at Abledis  – USA

5º) Dr. Marie-Helene Marion at BTX  –  England

If you are a  dystonia sufferer, you must follow these blogs and these  online community groups on facebook. My  “must follow list”  about dystonia blogs is higher. You can check on the my own blog’s sidebar.

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Books of a Man with Writer’s Cramp

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Today’s Prompt: Titles – if you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it?

I think if I were to write some books, the titles were these following:

A hard Journey with Writer’s Cramp: living without writing – A book about my life;
My Experiences with Dystonia BloggerMania – A book about online community and dystonia blogger;
Writer’s Cramp and Mental Health – A book about my health condition;
The Life of a Leader with Writer’s Cramp – A book about my health activism and Leardership;
Chronicles of a Man ​​with Writer’s Cramp – A book about my health activism.

I think writing these books can be a future project. In fact, a great project aimed at educating and raising awareness about dystonia!
I hope this happens at a time that the cure for dystonia is found and I can at last demarcate the boundary line between my life pre and post  writer’s cramp.

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Pain-Free Pass

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Today’s Prompt: What’s a day that you wish you could have used a pain-free pass (either in the future or the past)?  How would being pain or worry-free impact that day?

I would wish that starting this month I won a inner pain-free pass  that I feel because of writer’s cramp. It is a pain of the soul because of the discomfort, cramps and twists of the hands. A pain of despair and anguish by trying to live in the civilization of writing without writing. A pain deriving from so much effort to live well with dystonia …

I wish I could  have used a pain free pass to live without the writer’s cramp for the rest of my life. I do not know what it is to live without dystonia. I was born with neurologic movement disorder.  The only thing I wanted was to live in peace and without so much suffering!

I could never write normally… I always rehearsed for writing. I have picked up the pen strongly and I always was slow when writing a short text. Writing has always been difficult and a lot of discomfort.  I was born this way. I do not know how it is to live without writer’s cramp.  In my life there is no borderline between life before and after dystonia.

I have lived with  little involuntary spasms, with  crooked  and almost totally invalid hands for specific tasks. I still think all this is strange and a  real nightmare!

This month, I would like to can  demarcating a line between my life  pre and post dystonia …  I would like to know how it’s to write without much effort.  I would like to know how  is it typing,  griping a fork,  grabing a cup of coffee,  leaf  through a book and things like  without making  a  big discomfort and effort.

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Learning about Dystonia

meeting-icon-clean1Today’s Prompt: We don’t stop learning when we leave the classroom. Share something you learned from another Health Activist (Share their name/blog/website!).

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!

 

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No technology, harder health activism!

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Today’s Prompt: Write about how your life would change if there was no social media.

Last month I went to spend a weekend in a remote and secluded beach. It was a fishing village that had no internet and no mobile phone signal. I was faced with a beautiful  and wild  nature, but I began to realize how much I am technology dependent and can not live without the internet.

I remember that I was impatient at certain moments because of this. But I began to think it was just a weekend without these technologies.   I would have no problem just for a weekend!  However, I could not get rid  of  feeling that something was missing, quickly .

I would feel a lot more isolated with my disease, if I was not able to connect through the internet with others with  the same  health condition that I have: writer’s cramp.

The social network has allowed me to meet new people around the world with the same condition as mine. It has helped me to know more about dystonia, find  research foundation  as DMRF and a platform named WegoHealth. And lastly, it has enabled me to be a  dystonia blogger  in order to educate and raise awareness about dystonia, as well as share our experiences of a lifetime with writer’s cramp.

I think I owe a lot to social media like facebook, the craze for blogs, twitter and other Internet devices. The social media has greatly eased our lives in all aspects. The virtual world is a new lifestyle that enables health activism through a blog.

I lived a long time without these technologies such as the internet and mobile phone. And today I depend heavily on them for a living. My health activism relies heavily on social media. I would not be a dystonia blogger and I would not have so many friends with the same condition if there was no social media. In short, we’d be disconnected with the world if there were no social network. It would be more difficult!

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Everyday life of a Blogger!

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Today’s Prompt: Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism.

I think a simple thing that inspires me to continue my health activism as blogger is feedback that friends give me through the comments on my blog.   The simple act of sharing the post on facebook makes me more motivated, too.

These attitudes are important to me and shows how much I am being recognized and I think it’s a thermometer to measure my prestige. Articles written become important for those who read. This is rewarding and encourages me to continue my health activism.

Finally, the number of  blog’s  followers  may be a positive feedback that encourages me to continue writing and incorporate the label of Dystonia Activist Blogger.
These attitudes of readers and friends are important because it reveals that what I’m doing and writing is a substantial and worthwhile  something.  These kinds of feedbacks are so important to a blogger as well as the number of books sold means for a writer.

These everyday occurrences can turn our frown upside down and make my outlook sunnier!  A positive feedback is a  smallest thing that  can make the biggest difference. On the other hand, it is worth explaining that my self-esteem does not depend exclusively on these attitudes.  I just think  health activism is not done alone!  You are not a blogger just for yourself!

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Dystonia Bloggers: a flower in the wilderness

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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!

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