Nova Scotia Hearing and Speech Centre Can’t Count!

Okay, I had a stroke and have aphasia because of it, so it makes sense that I can’t count. But, really the Nova Scotia Hearing and Speech Centre doesn’t have an excuse!

I requested the numbers of people that have aphasia from 2003-2009 and which regions of Nova Scotia that they live. The reason that I wanted to get the numbers of people with aphasia is that I want to lobby the Government to have available and accessible treatment/continuing education for aphasia. And, communication groups in each region.

The Government must plan for treatment for people with aphasia and to do that you have to know the numbers of people with aphasia! Everyone knows about stroke….but the image that you see in your mind is an older person with paralysis. Am I right?

But, there are more complications and young people who are affected too. So, your image of a person with stroke should be broader. Aphasia is a complication of stroke….when you left side of your brain is injured either by stroke or trauma sometimes the injuries attack the language centre of your brain. You might have problems with speech, word searching, writing and reading. AND, you have to start again with language…kind of like people who are learning another language. That’s why I said “treatment/continuing education”…..treatment for aphasia often is continuing education for communication.

Anyways, I digress. In Nova Scotia the publically funded treatment/continuing education for aphasia sucks! Granted, the treatment for aphasia in Canada sucks! Actually, publically funded treatment for aphasia worldwide sucks.

I live in Halifax. When I was discharged from the Nova Scotia Rehabilation Centre, it took 6 months for the Nova Scotia Hearing and Speech to call me because of the waiting line. Then, I had my 12 sessions - 1 hour per week – then was kicked to the curb. IF, I requested I could put my name on the end of waiting list again – taking about 1 year to get more sessions…12 sessions. THAT is the life of the aphasiac! Can most people who have aphasia go back to their job? No. Maybe, 30%?

I was lucky because I took speech treatment privately because my disability insurance for awhile. But, when they realized that I couldn’t work in 6 months, they cut me off. I have Blue Cross that paid $1500 for physiotherapy, massage, speech and other therapies. But, it’s not enough to help me go to my workplace.

Anyways, I digress…again! My soapbox…. The reason that the Nova Hearing and Speech couldn’t provide the numbers that I requested is that their computer technology was changing???? So, “they” said. You know, I worked in the Capitol District Health Authority who also is changing to the newer technology. And, they need to easily pull numbers for budget planning. What about the Hearing and Speech Centre….they have to plan for budgets too! The Nova Scotia Hearing and Speech Centre is the only game for hearing and speech in Nova Scotia… which means that in each region of Nova Scotia, they must budget planning too. The Department of Health of Nova Scotia dumps funds to the Nova Scotia Hearing and Speech Centre to take care of Nova Scotians with hearing and speech disorders EVEN people with aphasia.

Now, I know that I had a stroke and have problems with numbers, but that’s say that EACH year 1500 Nova Scotians survived a stroke and of those 30% have aphasia…500? That’s EACH year….500 Nova Scotians are diagnosed with aphasia. What about the year before….500. So, by looking from 2003-2009 you should have about 3500 minus the people who are still alive…..AND, that’s just people who had a stroke…..then are the people who had trauma aphasia!

And, there must be offices in each region of Nova Scotia who would know how many people living with aphasia in that region??? That is planning! Hmmmm, do you trust that the Nova Scotia Hearing and Speech Centre is doing enough to care people with aphasia.

I guess I will have to travel to each region and meet people with aphasia or their families.

We Have to Talk About Aphasia!

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)

Lucky Me

I was lucky. I had long-term disability insurance that paid for my private speech pathologist services in the hope that I would be ready to work in 6 months and clear their books. And, when it was decided that I wasn't ready to work in 6 months, my insurance case was closed for language treatments, for now.

BUT, language skills take time!
So, much for my thinking that after my stroke, I would go to work again in about 1 month.
Now what....?

So, I will see if I vision for aphasia treatment can work for me. But, my vision needs publically funded resources. If you are in the same boat, "talk" (communicate) or get one of your family or a friend to talk for you.

Does your MLA know what aphasia is?
Does she/he know how many constituents have aphasia?
Does she/he know what aphasia services there are in our Country, Province/State and your region?
Does she/he know how long language programs take for you to recover aphasia?
And, how much energy and motivation it takes to work on language skills when you are plunged back to childhood? IT'S HARD!
Does she/he seem interested to learn more about aphasia and NEWER treatments?
Does she/he interested in you having the support to recover enough to go back to work?

It's sad that most people aren't interested in aphasia, UNLESS a partner, family member or a friend struggles with their relationship to them. They see your struggle to communicate:
- feelings,
- point of view,
- wit,
- intelligence,
AND understand you!

Where is that &*$#&!@ key to unlock that language door? There's no key. We have build our communication skills again.


Time that it took to write this: 2 hours
(I do this as my language recovery. When I can do this good enough to go back to work...the time that it takes to explain in written word is a part of it.)
USE IT OR LOSE IT!

Hindsight on Speech Pathologists

Yesterday, I said "get a good speech pathologist...." like it was something that everyone has support for the costs of the outpatient speech pathologist services. But, not people with aphasia can get access for outpatient speech pathologist services. Plus the waiting list is very long, the appointment times are fixed/capped and treatment is not enough to recover. Especially, if you need back to work recovery.

Nova Scotia has beds in the Provincial rehabilition centre for post-stroke recovery sometimes for 3 months stints. Speech treatments one time a day for 45 minutes for 4 days a week.

When you are discharged from the rehabilition centre, you are referred to the Nova Scotia Hearing and Speech Centre. It took 6 months after I was discharged (January 2009) to get a call from the speech pathologist assigned to my case. Then, when I got 12 sessions (1 hour x 1 week), I was kicked to the curb and referred again to put my name on the waiting list for speech pathologist services...again.

This is why I'm lobby our Provincial Government to have better treatment for people with aphasia and continuing education of people with aphasia and education for speech pathologist and outpatient speech pathology services supplemented with the governmental purse.

AND, our Federal Government's support for research for better aphasia treatment and education of aphasia for health professionals. AND, education for the people of Canada by the Federal Government. Most people have never heard the word "aphasia". I didn't know anything before "stroke day"! Did you or your family and friends know anything about aphasia?

Most people know stroke.....even symptoms and what to do during a stroke - 911! But, often you visualize the injuries of stroke, it is the physical movements of stroke you think of. Thirty percent (30%) of people who have a stroke have aphasia. If the people who had a stroke in a year was 2,000.....30% of them have aphasia = 600. Six hundred a year added to the 600 people last year added to the 600 people before the previous year added to etc., etc......

Ironic: We need to talk about aphasia!

Talk about a language immersion program in a foreign language landscape...without any people who speak YOUR language!