Grateful for Post-Stroke Fatigue

It's wierd for me to say that I'm grateful for the fatigue that comes after a stroke. It's 2 years since I had my stroke and if anyone would've told me that I would be grateful for post-stroke fatigue in those 2 years, I would tell them, they were crazy!
So, what changed? Time, I quess. After I had my stroke, I was pushing to be 'normal'...to be what I was, before my stroke. And, it's just now that I realize that I'm better, then I was before my stroke. Why?
I live each and every day like it IS. I'm not rushing to do...anything. I'm actually enjoying the DOING, rather the completion of things!
After my stroke, I grieved my ability to work in my career, my ability to use language, my ability to multi-task. I pushed and pushed and pushed just like I did before my stroke (denial).
But, now I know that I have to focus on ONE task. It took time for me to be okay with that...two years! But, now I am...I think :)
It took time for me to realize that I can't do what I used to do...and, the time that I could do it in! Slowly, Slowly. Just like this blog that I writing...I was a writer, but now simple things that I try to write takes a lot of energy and time!
Two weeks ago, I had my "Aha" moment.
I went to the cottage planning to burn brush and clean up trees that had fallen in the hurricane and storms. I had a great time...I didn't rush... I was happy DOING (I need a project...any project). I stopped at 4:00 pm (because my friend, Circle, won't allow me to work/putter after 4). I went to bed at 6:30 pm. Then, the next day I awoke at 11:00 am and worked from 12:00 until 2:00 pm when I realized I was tired...but, I pushed because I had two hours until it was 4:00 pm (Circle's curfew). I went to bed at 6:30. The next day, I was planning to work for the morning. But, I couldn't. I couldn't life my right foot and leg (stroke affected side)...I was tired...fatigued. So, I packed up and went home.
I told Circle that maybe I shouldn't work more than 4 hours long...and see if that was better for fatigue. MAYBE.
I knew this for my brain...language activities...I get fatigued when I'm talking, writing or reading in about 3 hours. At that point, I need a nap. But, I thought physical activities would be different...I'm in better shape than before my stroke??
The stroke fatigue protects me from me. I can't be what I was before...multi-tasker, workolic high achiever.
Stroke fatigue won't allow me. Aha!
All in due time...slowly, slowly.
Thank-you Universe.

The Amazing Effect

The Amazing Wow Effect
The universe told me to slow down
The Wow effect of my stroke
Connected tuned into the wow effect
Became conscious of the wow effect
The gift, my gift from the Universe
The Universe told me to slow down
I had the wow effect before my stroke.....
But not as often or intense
I didn’t appreciate the amazing Universe
The Universe told me to slow down
Now, most of the time, I’m conscious of the wow effect
It was always there
But I was too busy to notice or realize
The Universe told me to use my senses to appreciate
The Universe told me to slow down
Child-like wonder and awe ...Wow!
I am amazed
The Universe told me to be wowed everyday
The Universe told me to slow down

Yes, Goddesses have their limits
But, often we don't know that!

Calm Before the Storm

Three blogs before I felt that I was Ready to Move off the Plateau, but I realized that I was spiralling into a depression. Yes, even Goddesses are plagued with depressions.
I knew that something wasn't right with my mood...before the summer, even. But, I didn't want to increase my antidepressants again. I have been plagued by depression for years. Sometimes I need to increase my meds and sometimes I'm to decrease my meds. When I had my stroke, I spiralled into depression and increased my meds.
1.5 years (Feb 2010), I felt ready to decrease my meds. At first, things were okay. Other than the anxiety that I was having when I decreased my meds. The anxiety, I thought I could manage with relaxing breathing and exercise...wrong.
When I felt low, I thought it was just a low day. But, two weeks ago. I felt hopeless...crying when I shouldn't be, grieving my 'old' life, feeling hopeless for my 'new' life. Can I do my old job? What is my 'new' life? What do I want in my new life? What do I want when I grow up? Stress, stress, stress....
AND, I wasn't exercising, walking and didn't want to exercise. I was tired, tired, tired, tired.
Well, I don't know what my 'new' life looks like, but I feel better...somewhat.
Care for post-stroke persons:
- listen to your body
- care for body...give it good food and water, get rested, exercised routinely
- care for your mental health...people who had a stroke are predisposed to depressions (30%)

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!

Speaking Up and Speaking Often

When I was researching a blog about reading recovery, I found this webpage Life After Stroke . One of the topics contained in this website..."Speaking Up and Speaking Often"...encouraging us to speak and speak again! Makes sense. First you have to speak up so you can participate in language and active communicator. Then, you have to practice your language skills so you can be better communicator. I guess the same goes for reading and writing!

Aphasiacs!

Speaking Up and Speaking Often

Reading On and Reading Often

Writing and Writing Often

There are many helpful topics Life After Stroke to read.

Read on!

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.

Parlez-vous Francais?

Think about this....I relearning English and I sound French!
Okay, my name is French and my father was French, so my blood is partly French.
But, other than the French that I learned in school, I don't speak French.
Everyone thinks I'm French, because my accent.
Weird, eh?

I'm happy with my French accent, I don't understand why I'm relearning English but sound French??

I've heard that people relearning English language can pick up an accent....sometimes British, French. But, why?

Maybe, we slow-down our letters to pronounce the word?? I don't know!

Any speech-language pathologists care to post an answer?

On the lam

I know if you check-in on my blog, you would say that I've given up helping aphasiacs getting services for language. Seems like that. But, I've used up my ideas to ask for adult language services...I asked everyone that I could...Minister of Health, Minister of Education, Minister of Community Services, etc, etc without satisfaction. Now what?

Well, I don't have the money to funded adult language services myself...although, I updated my will that made a gift of $10,000 to the School of Communication at Dalhousie University to help with Nova Scotia Regional Aphasia Communication Groups. AND, I buy lottery tickets hoping that I win big, so I can fund Aphasia Communication Groups in Nova Scotia Regions.

Now what?

I don't know!

Without people who have an interest helping people with aphasia...probably family, friends and communities of people with aphasia...to help "the cause".

There doesn't seem to be the money from the Canada Government or the Nova Scotia Government to set up better adult language services, let alone Aphasia Communication Groups in our Regions. AND, the Nova Scotia Hearing and Speech Centre doesn't seem to be interested in putting more money and changing "their" manner of delivering adult language services. AND, the Nova Scotia Department of Health doesn't seem to be interested in "their" responsibility to make sure that those dollars are spent fairly for "all" people with have hearing and speech disorders. And, IF the Department of Health took their responibilities seriously, "They" would ask questions from the NSHSC to see how many people use their services by disorders, age and in region.
So, they could make sure that they are helping the population of Nova Scotia communicate.

I guess I'm in the "irons"... trying to sail "in" to the wind, instead of sailing with the wind.

Addressing Cognitive Problems

Dr. Gail Eskes a neuropsychologist from Dalhousie University, Halifax is the lead of multidisciplinary project for development of treatments for cognitive problems after brain problems.

Cognitive problems are things that you can't see....attention, memory, language, problem solving and reasoning.

The project is developing a "cognitive repair kit" that you can put on your computer. A therapist would assess your needs and see where you should work on. The "kit" has games to work on. You need time and intensity to improve your cognitive skills. So, be patient to see your improvements!

Step by Step

I used to be a multi-tasker before my stroke. Now, I suck as a multi-tasker. I seem to need to focus on ONE task. And, I have to do a step at a time...step by step.

I have difficulties with singing...I can put all of the words in the song. The music starts and I get the first word and after then, the words seem like a jumble. If I practice, practice, practice one song first reading the words out aloud without music. Then, add the music and for slow songs and practice, practice, practice. I get much better and singing.

If I try to MAKE the music...I play sloppy guitar..that is another task, so I have to practice, practice, practice to do the two tasks together. AND, if I have to read the notes that is another task. It's hard!

Last night, I went to my sailing class (this year) and I realized (again) how difficult for me to multi-task. First, there is the tiller that moves opposite to the direction that I want to move the boat. Second,knowing the wind direction. Then, making sure you're going to your target. Then, knowing the sails' trimming. All at the same time!

THEN, add the instructor orders and you have a very stressful situation!

BUT, I won't quit!

AND, step by step, I WILL learn to have fun sailing...

aphasia

Broca's aphasia - Sarah Scott - teenage stroke

Aphasia and Apraxia

Inside Aphaisa : Part 3 of 3

Inside Aphaisa : Part 2 of 3

Inside Aphaisa : Part 1 of 3

Another Stupid Idea

In the media (April 21, 2010), journalists wrote about a CBC study that people who were playing computer games to train their brains was hogwash. Researchers in a six-week of 8600 participants aged 18 to 60 found that "THEIR" games didn't make the participants and concluded that all games didn't work! Hmmmm....

And Nature published the study!

The CEO of Posit Science wasn't impressed with the study and the conclusion. “There is a fatal flaw in the BBC study; it assumes that since their methods did not work, all methods would not work....Posit Science has built products that have been rigorously tested by researchers at many leading research institutions including the Mayo Clinic, Johns Hopkins, and the University of Southern California. Those studies have shown real-world improvements including improved memory and attention, greater functional independence and better quality of life.” PositScience Brain Fitness News

I purchased the Brain Fitness Program from PositScience and found that my speech was improved and I feel that my processing was improved as well. I know that my account (testimonial) is not evidence that it works for all people.

Now, I subscribe for brain games from Lumos Labs Lumosity Brain Games. Subscriptions are inexpensive and can be a good gift for family and friends. Lumosity has games for brain:
- information processing
- logical reasoning
- spatial orientation
- response inhibition
- arithmetic

To me, Lumosity is part of my post-stroke recovery: brain fitness health, exercise and healthy food.

My information processing is slow, but not as slow as it was.
My speech is improving steadily (so my friends say).
My working memory is a disappointment to me, but improving...I'm hopeful.
My writing is improving....don't you think?
My reading is slow and takes time to understand the article, but improving.
Numbers are challenge too, but I don't feel that I'm lost in the forest, but damn them! They are sneaky!

Check the free brain games on PositScience and Lumosity websites...you might find they challenge your brain. AND, that can be satisfying!

Time goes quickly

Wow! This 2 weeks since that I wrote a blog. And, there is so much that I want to write about!

I'll start the International Aphasia Rehabilitation Conference in Montreal from June 27 to 29 (14th International Aphasia Rehabilitation Conference). I wish I could go, but alas one of my colleagues is retiring and I don't want miss her celebration. I didn't know there was an International Aphasia Rehabilation Conference and it is in Canada this year in a city that I want to visit!!!! But, not this year.

Canada doesn't have a National Aphasia Association that I can see. It's time to form one! So, I wanted to do something about it...go the Facebook and search Canadian Aphasia Association (Canadian Aphasia Association) if you would like to see Canadian Aphasia Association.

Maybe we could form one ourselves and form a foundation that would help people with aphasia to re-educate themselves.

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!

Two More Blogs About Aphasia

I enjoyed Doonan Diddly Squat and Planet Aphasia blogs.

Check them...humorous, witty and informative.

Also, look at this article about Christy...
The fight to give voice to stroke patients

Australian Aphasia Association

Thank-you Charteuse for your information about your National association and the conference (see below)...

I would love to attend the Australian Aphasia Association in September. Would anybody or group or corporation like to sponsor me???????

"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.

You 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)?"

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!

Funny story

A friend asked me if my speech-language pathologist was French....she wasn't. But, most people think I French, because I sound French....I picked up an accent since I started to speech English again.....go figure! My name is French, my Dad was French...but I don't speak French!

Let's Talk

I have been very tired...thus no blogs!
Last Saturday morning I went to Geoff Regan's "Let's Talk" with a few of my aphasiac friends and family and the Director of InteRACT (Intensive Residential Aphasia Communication Therapy). Aphasiac...is that a word? It should be...so I grant "aphasiac" a real word! Anyways, we went to "Let's Talk" so Geoff Regan and others who were there could see us...people with aphasia!

Also, we wanted discuss therapy for aphasia and that wasn't enough timely and length of duration in Nova Scotia and Canada...for that matter.

I have emailed Geoff about aphasia and services for aphasia. And, he listened and wrote a letter to the Minister of Education. I explained that the education portfolio could share "therapy" with the health portfolio. Geoff mailed me a copy of the letter he received from the Minister of Education explaining that she didn't think aphasia is part of the education portfolio.....
"I have reviewed Ms. Arbique's letter and considered her suggestions. The services proposed by Ms. Arbique appear to be primarily within the realm of heath care services for adults. Although the Department of Education provides funding to school boards to employ speech-language pathologists, their services are for supporting students with special needs who are registered in Nova Scotia public schools. Speech-language pathologist services for adults outside the public school system are not within the current legislated jurisdiction of the Department of Education."

Hmmmmmm...okay, since the traditional view of post-stroke complications has historical been "that stroke victims only improve for the first six months....then that's it. That wisdom was WRONG! We can improve for life. So, I think it's time to CHANGE your CURRENT legislations!

"I note that your letter was copied to my colleague, Honourable Maureen MacDonald, Minister of Health, and I have copied this letter to her for her information. Currently, there are no specialized services focusing on post-aphasia education support within existing adult education programs. The Department of Health and the Department of Labour of Workforce Development may be able to collaborate, however, on delivering an education component of a comprehensive, therapeutic services models for persons with aphasia, through the Nova Scotia School for Adult Learning."

Let's CHANGE thoses CURRENT legislations and services! You know, before I said that people with aphasia need contuining education, but my friend with a husband with aphasia coined the term "re-educate". People with aphasia need to learn all the things about language (speech, writing, reading) that they learned before their stroke, again.....re-educate!

There's a place for the Department of Health and Department of Education and Department of Labour and Workforce and the Department of Community Services for funding.

I want to go back to work, but in this CURRENT provision of services I CAN'T! Unless, I pay for a private speech-language pathologist....I get 70% of my salary on disability??? Re-education of language is slow, especially when you have other complications (e.g. apraxia, etc.). The public-funding provided by the Nova Scotia Hearing and Speech isn't working either. Their goal isn't for me to go to work again....their goal is for me to get my groceries and read my bills....that's important sure...but there's more important things in life too.

I have a "aphasiac" friend who can't talk on the phone, because people can't understand her, she lives alone and can't go outside without supportbecause of her balance...to me there's a place for community services too.

Instead of pushing the issue from portfolio to portfolio, share the responsibility! Say, "What can MY Department do" and SHARE responsibility!

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.

How Does Aphasia Make You Feel?

I went to Washingtion, DC for the w/end when protesters were having a "Tea Party" on Capitol Hill as the lawmakers voted for "Obama's Healthcare". I am a Canadian and didn't see what the problem was. Our Healthcare System is founded to make sure that all Canadians have accessible and available healthcare.

When I was there, I thought aphasia....who is your voice for protesting about treatment of aphasia? Can you do it for yourself? If not, how does that make you feel?

Tell me.....how does aphasia make you feel?

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

Aphasia IS.....

That's it for my blog today.
I would like for you to say what aphasia is for you...a word or a few words.
You could be a person who has aphasia.
You could be a caregiver, partner, family member, friend, or health professional with person with aphasia.

What says you?

Aphasia Conference Plenary Sessions

Proposal for Aphasia Nova Scotia Symposium
- one and half day symposium to "Talk About Aphasia"

Day 1: Aphasia Nova Scotia (Aphasia Atlantic)

How Is It Now (Representative of The Nova Scotia Hearing and Speech Clinic)

Neurotransplantation (Dr. Ivan Mendez)

Neuroplasticity and Aphasia (Dr. Michael Merzenich)

Principles of Neurorehabilitation and Aphasia Recovery (Dr. Jacqueline Hinckley)

Stronger After Stroke (Dr. Peter Levine)

Intensive Language Program (Elizabeth Allard)

Panel Discussion on Neuroplasticity:
Dr. Micheal Merzenich
Dr. Peter Levine
Dr. Jacqueline Hinckley
Dr. Stephen Philips
Dr. Ivar Mendez
Representative of Hearing and Speech Clinic

Dinner: Guest Speaker: Dr. Michael Merzenich (Brain Fitness)

Day 2: Aphasia Nova Scotia (Aphasia Atlantic)

Morning:
Proposal for publically funded language program and intensive programs in Nova Scotia (???)

Group Breakout to Discuss and Report Findings (include people with aphasia in the discussions).

Appoint a Task Force for a formal proposal of Aphasia Treatment and Continuing Education for Aphasia Recovery to the Government.

MY THOUGHTS....

What do you say... Dr. Michael Merzenich, Dr. Ivar Mendez, Dr. Stephen Philips, Dr. Peter Levine, Pat Arato, Dr. Jacqueline Hinckley and Elizabeth Allard are you up for the challenge?

Time to write this blog: 2 hours

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......