Yes, that's the irony of aphasia and talk. If you have aphasia, your have obstruction to communicating...speech (and written word used by talking and read those words used by talking).
So, what should be first step? Treatment, of course. But, the people don't know about aphasia, the Government who talk for the people don't know about aphasia too. AND, the people who have aphasia have difficulties with communicating! AND, the health professionals aren't effective in communication because they aren't loud enough.
The first step is communicating! Educate yourself, educate the Government, educate your family and friends, educate your physicians and health professionals.
How could we do that?
Well, the first thing that I thought about was a Conference/Symposium. In my 30 years in my pre-stroke job, I attended lots of professional conferences. So, get with it!
There are lots of people that could help in a conference to talk about aphasia:
- People with aphasia
- People interested about aphasia
- Speech pathologolists
- Other Health professionals
AND, what about Associations:
- National and Regional Brain Injury Associations (Brain Injury Association of Canada and Brain Injury Association of Nova Scotia)
- National and Regional Speech and Hearing Associations (Canadian Association of Speech Language Pathologists and Audiologists (CASLPA)and Speech and Hearing Association of Nova Scotia (SHANS))
National and Regional Cardiovascular Health Associations (Cardiovascular Health Nova Scotia)
National and Reginal Heart and Stroke Associations (Canadian Heart and Stroke Association Nova Scotia Heart and Stroke Association)
- National Aphasia Association
- Hearing and Speech services
- Communication and Communicatative Learning Schools
- Aphasia Centres
If I left things out, PLEASE COMMENT about other associations and people connected with aphasia.
Gee, there are lots of people who have a connection with aphasia.....WE HAVE TO TALK ABOUT APHASIA!!
So.....
MY VISION of our first Conference/Symposium:
I'm thinking of using the template of the "Transplant Atlantic" conference/symposium. Transplant Atlantic starts with a free Public Forum on the first evening of the conference.
Speakers and Topics:
- Minister of Health or/and Member of Parliament
- Brain Injuries – Stroke and Traumatic Damage (Dr. Stephen Philips)
- The Pat Arato Aphasia Centre (Pat Arato)
- Patient and Caregiver Testimonials
- Questions and Answers
And since this is "our" conference, I think a with aphasia should be the Master of Ceremonies. And, since I'm Goddes Aphrasiadite, I think I should be the Master of Ceremonies first. And, maybe do one of the Patient Testimonials! The Public Forum could take hours............
More about the plenary sessions soon.......
IF, you are interested in the first Aphasia Nova Scotia (or Aphasia Atlantic) Steering Committee, please COMMENT below to show your interest (or email direct to me j.arbique@ns.sympatico.ca)
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I followed some links that led me to your blog. I thought you might like to know that here in Australia we have a very active Australian Aphasia Association, and we hold a national conference every two years. The next one is in Sydney on 27-28 September 2010.
ReplyDeleteYou might get some ideas from the AAA website, which includes information from the last conference. There you will also find news about 'Wednesday Without Words', an annual event with activities scheduled in many parts of the country, the purpose of which is to publicise information about aphasia to the general public and especially to lawmakers and other persons with responsibility for health programs.
Why don't you find someone in Nova Scotia to sponsor you to attend our national conference, for the purpose of starting something similar in your country (if you don't already have a national organisation)?
And when you have a minute, please visit my website, Doonan diddly-squat, where among other things I talk about my experiences as a caregiver for a partner who has primary progressive aphasia. This is a less common form of aphasia with no known cause, and which generally results in continuing degeneration of communication abilities. My husband was diagnosed with PPA in 2006, so we're in the fight for the long haul.
Best of luck to you.
Sorry Charteuse I didn't your comment!
ReplyDeleteThank-you for the information on your association and conference. I start looking for a sponsor for your conference!!