Sarah Scott Update

It has been 18 months from Sarah Scott's stroke at the age of 18. Sarah arrived at college for her first class. She opened her book and read aloud to the class. Then, she lost her ability to speak. She had a stroke...at the year of 18!

Sarah and her Mom put a video on You-Tube after 9 months from her stroke.
Sarah Scott 1

Then, they did an update on Sarah progess...
Sarah Scott Update

Sarah, you go girl!


Read more:

Reading Comprehension

I have thinking about our communication challenges. Our public services for post-stroke or trauma aphasia are unfulfilling and many people with aphasia don't have the help they need for read fluently and comprehend the content.
After I "graduated" from Rehabilitative Centre, I contacted a private speech language pathologist to help with my recovery. Betsy Allard customized a program for me that included speech, writing practice and reading fluency and comprehension. When I was ready for a book, she gave me Tell No One Who You Are to read...first with a recording...she actually records the book in your voice and a tempo that I understand....actually, she recording the book AND rerecording it, because I thought it was too fast! That took all of her time!
But, she knew that if I had problems with comprehension it could be that the recording was too fast for my auditory cortex processing and I would struggle to keep up her voice. For me to have success with reading, I need to be relaxed....no distractions, noise. AND, I needed to follow the words, so when Betsy read in the recording, I pointed at them in the book with my "reading finger". I found that to be helpful. IF you use a recording to teach yourself to read, make sure that it is the right speed for YOU.
Remember, the movie "The Reader"? It was about a woman who couldn't read, but loved literature...to make a long story short...she learned to read in jail with books and recordings from a friend. Patience and practice!
The book that Betsy assigned for me was perfect! A good story, font that was large (not "large print", but big enough that I didn't need a magnifier) and language that wasn't complex. At the middle of the book, I found that I even need the recordings anymore. "Our" strategy was that each day, I would tackle a new chapter....listening to the recording made by Betsy and following along in the book. Slower enough for me to follow with ease without feeling frustrated and stressed struggling to keep up with voice!
Then, when the chapter was done, I read the chapter myself aloud following with my "reading finger". After I finished reading the chapter, my other assignment was to write a summary of the chapter and email it to Betsy. Betsy corrected it and emailed back to me. Then I correct my language and grammar and sent it to Betsy again. The time that Betsy came for our "face to face" session, we discuss the problems of my writing.
THEN, she asked me questions about the chapter, so I could practice formulating my thoughts and she could see if I understood the content...the story.
Sounds time consuming and hard work, but we did that many years ago when we were kids!

Goddess Aphasiadite Update

One month before my second anniversary stroke date...

My speech is getting better...when I'm not tired. My writing is waaayy better, but still it's work, and same for reading. My enemy is brain fatigue....IThe "crickets" were wild! My "crickets" are what I named my tinnitus. The auditory cortex worked hard processing and trying to keep up with the presentations and discussions. Listening and understanding takes so much energy, especially when the presenters have an accent!

My serial memory and working memory are struggling. And, numbers are problematic.

I am not working...yet.

Oh, I'm not singing yet, but I play the guitar poorly...just like before the stroke.

Ready to move off the plateau!

This month I feel that I'm ready to move from the plateau of stasis. I've been practicing on my 'brain fitness' trying to move that static wall that keeps me from grading to another level of serial and working memory and sound recognition.

But, right now I feel that I moving on to the next level of my memory....it's not that I'm flying into the level, but I'm moving...I know it! Slowly, I'm moving along the path...the upward path that moves me into the next level of processing! It's still tiring, but for a long time I haven't move from that plateau. And, I was bored because I thought I was done.....I would never be 'normal'. My rate of processing still struggles, but it is moving!!!!

Sometime, I know that my rate of processing is going to be normal...it might be what I want for speed, but my auditory cortex is moving ahead.

SSSHHH!

SSSH! The crickets are now peaceful again. Not racing and roaring, just a peaceful chorus of singing....do crickets sing? Anyways, they are happy and I happy that they're happy!

Tinnitus can be a noise (e.g. ringing, crickets) in your head...in your auditory cortex. Really that you can do about...it's just there!

Goddess in Wonderland

I went to the movie "Alice in Wonderland" last evening, and really enjoyed it. But, now my "crickets" are racing! Since I had my stroke, I have tinnitus....ringing and noises in my head. I say that I have "crickets" in my head and they are my friends. Sometimes people who have tinnitus think the crickets are the enemy. But, I decided to make friends with my crickets, otherwise they can make you crazy!

I don't know if the 3D made my crickets noisier or if the movie was too loud....I didn't think it was too loud. Anyways, my crickets are loud today!

Mental Health Week

Our newpaper is focused on articles that centres on awareness of mental health. We are not serving people with mental health issues well in Nova Scotia!

As I read about our problems with mental health services and those who have difficulties with getting service, I feel quilty about complaining my problems. There so many who have bigger problems that aren't helped in our health system.

However, people who had a stroke are prone to depression. AND, if you have feelings of hopelessness that you can't fit in the world anymore, it's even harder to get up and go! Paralysis and other complications of stroke can be depressing. Being in a world where you can't communicate to others is hard too. Even Goddess Aphrasiadite gets depressed! I get depressed when I read about our mental health system and how it isn't working for people who need help.

Here I am trying to lobby our government to have better help for people with aphasia, and a HUGE disservice is at hand with so many people who have problems getting service from our mental health system! IF there's no money for them....what about people who have aphasia! This Monday, I gave up thinking that I could push to getting better language services for us. BUT, this is a new day. I didn't have enough rest last weekend and this week that spilled over. I should never make decisions when I tired. Stroke and fatigue are enemies! Make sure that if you are doing something that I KNOW will be tiring....rest before AND rest after! Take the time to rest! And, look at the signs that tells you that are tired...depressed, apathy, hopelessness, angry, sad, testy, etc. AND, sleep on it!

I am Goddess Aphasiadite, I know!

Surprise Post-stroke Seizures

You know, one of the IMPORTANT things that my Rehab Team forgot to tell before my discharge was that I MIGHT have a seizure! I think that's common....2%-33% of people who have a stroke may have one (or more). Five months after my stroke, I was doing my warm-up speech with my communication partner, Square, when my thumb on my stroke-side started move involuntary around. I showed my thumb to Square..."Cool!" said Square, then my other fingers started twitching...."WOW!" both of us said. Then, a pain started in my arm....not JUST a pain...a pain that was unbelievable...I have a high threshold of pain...BUT, this was the most pain that I ever had...one that I didn't think I could withstand. Square told me to stand-up, thinking that maybe I was pinching a nerve. So, I stood up...but that didn't help. Then, I thought that maybe I was having another stroke, because my mouth started to contort.

At that time, Square told me that I said "I think I'm going to be sick". I don't remember that. Actually, I didn't remember anything until a man said "Judy"... a few inches from my face. I was startled! And, tried to push away from the man...which was difficult because at that time I was in the corner of the floor and the wall squishing in the coffee table and my chair.

Then, I heard Square said "It's okay..you had a seizure and I called 911." I was confused. I was realized that I was in living room...not knowing what these 3 people in my house were doing! "We have to take you to the hospital", one of the people said. "I have to go to the bathroom." They allowed me to go.

But, I took too long. Because, I had a mess that I was trying to clean up. Sometimes, when you have a seizure, your bladder and bowels get go.

ANYWAY, I went to the hospital, got checked out and was referring to a neurologist. The neurologist discussed my seizure and treatment for them. I liked him. He was understandable, fact of view and had a sense of humour. He explained the seizure like this..."Your neurons are pissed off." Simple!

Their (my neurons) were saying..."We are NOT dead! So, get out of here!" This, of course, was to warn invading neurons who wanted more space.

So, I took my gabapentin and carbamezepine faithly (ALmost*). Last Sunday, 2 weeks before when I was to see my neurologist to wean off gabapentin, I had another seizure in CHURCH!!! But, it wasn't too bad....I didn't alarm the congregation or ruin the Minister's sermon (I don't think!). Why? My thumb started acting up again. My thumb twitched. "It can't be" to myself. Then, it twitched again..."I'm going to have a seizure. I have to get out of here."

I headed to the back of the church and whispered to a woman that I knew. "I think I'm going to have a seizure". She put her arm around me and guided me to the hall outside the sanctuary. "Tell me what I should do."

"First, help me to the floor and put me on my side. And, I might pee myself."
She put a cushion under my head and put a blanket on me. I was starting to twitch on my legs. "Is there someone I should call?"
"Yes, Square." I told her our telephone number and she called for Square more instructions. Of course, Square jumped to a taxi to come to the church.
"Do you mind if I ask for a nurse?" I nodded.

This seizure was different. I didn't have the pain in my stroke side and I remembered the whole event. My legs twitched like a dog hindleg trying to get a flea! My face was contorting and my head was twisting toward the cushion and I was worried that I might be smothered. AND, the noises from me sounded like a rabid dog. Finally, I realized that the seizure was passing.

I was exhausted and out of breath....just like I ran a marathon. I tried to move my stroke-side arm but it didn't move. Then, I tried my arm....that didn't move either. I didn't know if I had another stroke. I rested on the floor and the ambulance team arrived. After checking me and waited for me to rest, they helped me to sit up. My arm and leg was getting stronger, but I couldn't move my fingers. After resting, I got stronger and got to my feet with support. My ambulance team took me to ER and Square followed. You know, I try everything to get Square to church!

My experience made me think about kids that have a seizure AND remember it! What a terrifying experience that must be. That was all I could think about. It would be terrifying for the parents the first time. AND, the friends of the child.

So, now I can't drive again until.....????
My next appointment with my neurologist is next week. I will have to confess that I stopped my noon carbamepine. I'm supposed to take carbamepine in the morning, noon and in the evening, BUT I stopped the noon pill when I was Ethiopia in January (see... Square and Circle Adventures). I forgot my pills in Halifax! And, while I was trying to figure out how I would get pills I cut off my noon pill for I would have a few days supply. Then, when I finally a Doctor in Addis to prescribe carbazepine to me. I decided to stop the noon pill. Believing that my ONE seizure was the ONLY seizure would have, AND knowing that my neurologist was going to take away gabapentin anyway....I didn't see the problem. When I was emergency on Sunday, my carbamazepine levels were in the therapeutic range. But, my neurologist doesn't believe in the "range"...."If you are still having seizures then you need more carbamazepine; if you're seeing double (vision), you are taking too much." Simple!

Total time to write this: 2 hours and 40 minutes

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!

Neuroplasticity after Stroke

It used be that people thought the brain was hard-wired or fixed for life. If you had an injury to your brain (e.g. stroke and trauma), that was it....brain cells could not be replaced or the brain alter it structure to function if it was damaged. Now, that's changed, or the way that people thought about the brain changed.

The brain is plastic...capable of change! You probably heard the term "the plastic mind of a child" BUT now we know that the adult mind is plastic! AND, that's good news for me and everyone that had a stroke or traumatic to the brain. This is a good time to have a stroke (well, not really...but better now then 10 years ago).

Neuroplasticity takes time, patience, rest, a sense of humour, motivation and PRACTICE!!!!!!

If you have aphasia, get a good speech pathologist....the sooner the better. AND, get her/him to work you hard! Be motivated to be the best you can. II have a friend who told her husband that if she had a stroke, he should call 911
AND Betsy Allard.

was very lucky to have Elizabeth (Betsy) Allard to work with me. She was a woman with a whip!

I have been in an intensive language program in my home since January 2009...6:00 to 4:00 Monday to Friday. Square and I named program "Betsy Language Boot Camp" :). Betsy designed my program and it was hard and getting harder! But, I felt honoured to work with Betsy. It was well worth it and I'm proud to be one participant of Betsy's Language Boot Camp.

The Painful Truth

I have had to write to an organization about a volunteer program that I was working with. I was invited to another assigment....post-stroke. As a goal, I decided to accept the assigment. I decided that I would work on my professional skills needed for a survey.

I had my stroke on October 2008 and I have aphasia and apraxia. Not sure if you know about aphasia, but here goes – injury to the language centre that influences speech, writing, reading and processing time (auditory cortex). I have been working on my language skills. I am intelligent and versed in quality management systems for the laboratory.

I have working on my language skills since January 2009. And, I not the best I can be! The program was an intensive program, which was the hardest work I ever have done....but, worth it! I have come from words to eloquent (okay, I'm exaggerating, but I'd had impressing improvements!).

However, it is a slow process to recover language skills. Geez, I have been in an intensive language since January 2009! Although my language skills have improved greatly, I am not ready to work in my old job, teaching OR survey solo.

It pains me to say that I‘m not ready. The survey in May was my goal to practice my professional language skills (orally and written) and show that I am ready to work again.......in the laboratory, teaching and volunteer surveying.

After practicing and a heart to heart discussion with Square, I know that my speech, reading and writing is not good enough to communicate without a companion or editing. Of course, the time is an issue too.....to explain my observations in written word takes time. And, taking time takes energy. And, energy affects fatique and fatigue is my enemy.

My reading is slow and it would take time to comprehend the documents of my profession (okay, after 30 years, I know, but medical technology keeps growing.

Although, I am motivated to take the time to understand what I read, but that takes energy and fatigue is my enemy.

In my best day, my speech is good enough to ask questions, with most people thinking I am French.

But, fluency of speech takes energy and fatigue is my enemy.

Then, there is the pressure of the survey itself….5 days from 6 am to 6 pm and preparing for the next day. Pressure saps energy and fatigue is my enemy.

I need more time to be the best I can. When I know I can do it for the first time, I would like to have an experienced surveyor shadow me.

BUT, I feel that is possible!

The above was brainstorming for a letter that I had to write. These are the things that I worry about for going to work again. I think that other people with aphasia will share these issues.

When I found that I have aphasia, I couldn't believe it.....I didn't know what aphasia was! When I came home from Rehabilitative Centre, I "Google" for "aphasia" to see what was in store for me. Will I ever work again? Will I have disability? Will I need help in my life routines? Blah, Blah, Blah......