Remembrance Day

by John McCrae, May 1915

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.

Keep Calm and Carry On?

I am participating in WEGO's challenge to post everyday in APRIL. WEGO is a group that empowers online communities in Health Activism to help others.

Keep Calm and Carry On. Write & create your own “Keep Calm and Carry On” poster. Try to make it about your condition! You can then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog. #HAWMC

 

 

I was very surprised to find out that people think of Therapeutic Recreation Facilitators as people who just lead Bingo Games and do Arts and Crafts with Old People. It is so much more...

 

One of the first appointments with my Occupational Therapist involved a discussion about what my goals for recovery were.  What were the things I needed to do and what were the things I wanted to do? What had I lost with the injury that would impact on my life?

We talked about what I needed to do to be safe. What did I need to be able to do that were activities of daily living such as managing to dress and feed myself.  Issues related to moving physically, reading and knowing what to do with numbers were at the top of my list.

 

How do you want to spend your leisure time? What helps you participate in activities with your friends and family? What will it take for you to get to go back to volunteer or paid work or allow you to care for your family?

 

I wanted to read, I wanted to cook, I wanted to shop by myself. I had a goal of being organized and remembering what I was doing. I wanted to crochet even though my left hand was NOT working well. I wanted to enjoy photography. I wanted to go camping, hiking and boating.

 

What I REALLY wanted at that point was my old life back.

 

What have I done in my journey to get my life back?

 

I worked on reading and writing with my OT

I worked on how to cook again with my OT

I helped decorate and paint my cottage walls

I wanted music so I joined a very tolerant choir and I found a guitar teacher

I went to boating, sailing events for disabled people to help with my balance

I had  a physiotherapist that made me ride a stationary bike.

I was sent to aquatic therapy where I got to exercise and play in a pool.

I went for (remarkably slow) walks with friends to learn to walk again and gain endurance.

I joined the Stroke Recovery Association and found  peers for support and to do activities with.

I attend adapted Tai Chi classes with a physiotherapist to help with balance, spasticity and strength.

I attended an outpatient group where we  played games to encourage cognitive recovery

I attended a whole lot of sessions of Mindful Meditation.to help balance my emotions

I blog... for recreation and therapy too.. and the hope of making a difference to other people.

 

I have socialized and made new friends and got a lot of support on this journey.

 

That, my friends, is what I think Therapeutic Recreation is all about. 

 

Moving Toward the Real World

We are heading into the last courses for the Therapeutic Recreation Program that I have been taking at College!

I feel physically and emotionally tired a lot of the time, and there are days where I become very discouraged. In spite of that I feel even more strongly that  I REALLY do have a lot to offer to people who are facing life challenges with disability and aging.
I do have a sense of purpose once again.



My bookshelf of this years resource books and binders!

The past month has involved 3 different
courses with so much writing that blogging fell to the very bottom of my to do list!.

We have looked at Diversity Issues and at the changing face of our aging population.

• I did a paper about traditions and the core values that direct peoples choices and lives.
• We did presentations about religious and other symbols to bring awareness about spiritual aspects of peoples lives.
• Next week our class will take turns presenting group projects about five different cultural groups that are part of the immigration groups choosing Manitoba Canada as their new home and hopefully prepare fun programs that would be of interest to people of that heritage.

We have taken a class on Documentation.

• We learned how one works with record keeping in the hospitals and personal care homes.
• We learned about taking histories that include peoples interests backgrounds and
• we are learning about how to help people have a chance in engage in activities that are meaningful to them as well as therapeutic.

Now we are looking at Programing for Leisure by spending several days at a personal care home.

• We are job shadowing Therapeutic Activity Workers and learning about everyday life in personal care homes. 
• We are helping with parties, current event groups, music entertainment and many other events.
• We are each being assigned a resident to visit and work with a few times.
• We will do a one to one program were we will plan out and care out  program specially designed to meet that person's needs and interests.
• Next we will organize and lead an event for a group of about 10 residents.

Things are getting exciting and more fun as we move towards using all the information we have been learning. Next month we will be doing a job placement.
We will be out into the real world!

What Should People Know About You?

 I am very, very busy with college. There was a massive charity event last week, a paper due yesterday, another major paper about group dynamics, a case study test tomorrow and a final exam about cognitive issues and therapeutic care on Friday. Then 2 weeks off! yippee!

I am in something like survival mode.

I found one question for the paper I handed in today thought provoking. (and remarkable hard to separate myself from my past reality in order to answer it for marks). 

The topic was about the signs, stages and care of someone with Alzheimer's Disease or other dementias and the impact of the disorder on the family and individual. 

How would you answer this  final question ?

If you could not speak for yourself, what would you want the  people caring for you to know about you? (three points)

1)
2)
3)

So what do you think? Easy or Hard to answer?

First Course Complete

One final exam is now over and the next course with the same instructor begins Monday.  Foundation in Therapeutic Recreation was our first class and the idea was to get us exposed to different concepts about the field.

A major feature of the course was that we went to observe 7 different programs for older people and then we filled out huge sets of questions about things we observed at the location. We visited personal care homes, adult day programs and a lovely independent living facility. We talked with the Recreational Therapists running the programs about their jobs and the joys and challenges they faced in their particular work.
 

I was at a Girl Guide event where we had
a MARSHMALLOW roast

I was really interested in seeing how the programs were handled and I could not believe how different they all were. I had fun watching a music program, and observing a really fun version of exercise combined with some cognitive prompting. (Stretch the rubber resistance band toward the west coast to Vancouver.. now let's aim toward Halifax on the east coast.)

One highlight was the hands on opportunity to help out at a day program when a petting zoo came to visit. The bunnies and chickens were carried around the circle for everyone to pet and I sat talking to several different interesting older people. I was amused to find that while my younger classmates were getting comments about yes nice and soft pets.  I was getting the older people telling me that these fancy breed chickens were too scrawny to cook and then several of them shared recipes about the best way to cook rabbits. So much for that cuddly petting zoo idea!

One of the lovely but still slightly disconcerting aspects of several of these visits was that so many of the residents looked at my cane and my graying hair and warmly welcomed me as a new participant and member of their group. I guess I look like I belong.

The final exam was not that hard but I really did need to take a lot of extra time to complete it.  Word recall is still very much an issue for me. Matching or fill in the blank questions were great and  I really don't think the essay questions went all that badly but darn that word recall problem when I needed specific terms. Somewhere in the extra time I was allowed because of my disability, I had the most of the "missing words" pop back in my mind. I was talking to one of the girls in the class yesterday about how I went to a bonfire cookout and I told her we had smore's and that I had roasted a mushroom on a stick. I looked at her confused expression and realized that I did not say "marshmallow".  I told her with a tiny touch of embarrassment...." and that  is part of what they mean when they are talking about aphasia".

 Exhaustion and stress bring on some of my symptoms that were bigger issues a year or two ago.
... Being exhausted and stressed is part of the definition of being a College Student.

Sorting Papers

I am sorting through recipes, scraps of paper with addresses, magazine articles and greeting cards and a lot of notes that were written to jog my faulty short term memory. During the first couple of years after I got sick I  picked up every health care pamphlet and every more or less inspirational message I could find.

With my wavering cognitive abilities at the time I had trouble determining what to keep and what to throw out so I kept a lot of boxes and zip lock bags full of random items. I did not know who or what to believe in as I experienced the uncertainty of my illness. I did find a lot of comfort in my religious beliefs.

Today I found a little scrap of brown paper, torn from the corner of a fast food bag, where I had written the words:

 

"Kyrie Eleison- Down the road that I must travel".

I have no recollection of writing this little note to myself but it still resonates very strongly with me. Life can be a pretty hard road with a lot of uncertainty and fear but here are lots of wonderful joyous moments too. Kyrie eleison... means Lord have Mercy and is part of the church services I have attended since childhood.

The song I will have remembered these words from  is Kyrie
The lyrics are by John Lang and the music by Richard Page and Steve George and were performed by Mr Mister.

Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night

I also especially like the lyrics-- my heart is old, it holds my memories. These boxes of papers are not going to fill in my confused memories from that period of my life. The things that are important to know are already held within my heart.





The wind blows hard against this mountain side,
across the sea into my soul
It reaches into where I cannot hide,
setting my feet upon the road

My heart is old, it holds my memories,
my body burns a gem like flame
Somewhere between the soul and soft machine,
is where I find myself again

Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light

When I was young I thought of growing old,
of what my life would mean to me
Would I have followed down my chosen road,
or only wished what I could be

Surviving the College Course

I have been a busy person for the past couple of months. I am looking into employment and retraining options for the future with the help of SMD (the Society for Manitobans with Disabilities) and this has led me on several adventures over the past year but the past two months have brought the largest set of challenges. I went back to school and I also started volunteering at a hospital to gain work experience.

I completed the ten-week college course in Interpersonal Communication that I started in January. How did that turn out? I don't have the final mark yet but I expect to have passed comfortably.  I completed 4 short papers and wrote two exams. The first half of the course was an exercise in fitting in and getting back in the grove. I quickly became aware of some major learning problems that did not exist before my health issues started. I used to read a lot and be able to easily remember what I read or heard. That is just not easy anymore. The course had a rather good textbook that was set up with an accompanying online version of the text and a lot of extra study aides available online and boy did I need them.

The teacher is a nice guy with a true desire to educate his students. 

In class there were a lot of small group activities and he managed to let me stay put and have the small group come to me so I didn't need to get up and down all the time. The class room was a very "busy" place from a sensory point of view. There was a heater going, a buzz from the lights and a lot of wiggly classmates. I picked a seat to the left side of the room near the front and that helped a lot since I seem to see and hear a lot better when the action is to my right "good" side.  I had trouble catching everything the teacher was saying, especially if he turned his back to write on the board or talked faster when he got passionate about a topic. He has his own issues with hearing loss and was understanding and more than willing to make every effort to accommodate me.

I found that, even though I usually feel like my language skills and short-term memory are adequate for everyday life now, my language skills fell apart when I needed to learn so many new terms. The course had about 25 fairly complicated vocabulary words a week and I was really struggling. I understood the concepts but word retrieval was absolutely eluding me.  Even if through some miracle I recalled the new word, I might have trouble actually articulating it during class, sort of like a stutter. 

The saving grace for me was that the online resources had a lot of games like memory matching games. …find the card with the word and march with a card with the definition. There were vocabulary crossword puzzles, vocabulary sheets, examples of videos using the skills, and practice tests for each chapter. I worked so hard!! Even with all that my recall was extremely hit and miss. The reason I will have done okay on the exams is because the exam format was multiple choice.  Aha! Apparently I can recognize the word and understand it.  On-line practice fill in the blank tests were miserable.  My midterm exam mark with multiple choice was great.

Reading the textbook was a massive challenge too. I have worked and worked over the past 4 years to get my reading level back up again but it is still difficult.  The muscles in my face do not work evenly so my left eye tracks across the page slower than my right and with a little bounce. Reading this photo rich textbook, for content, was taking me as much as 7 hours actual reading time to get through 30 pages and for every hour of reading I would need to stop and rest my eyes for another hour in order to recover from the growing headache and accompanying nausea. 

The partial solution to the reading issues was that online version of the textbook. I had my textbook open with a highlighter pen in hand and I had my computer read the words to me. [On my MAC you highlight the text you want read and then hit Option plus Escape]. I highlighted anything in the book that I needed to review later in order to work on remembering or comprehending the material. I closed my eyes and listened through examples and basic information.

The formatting style of the textbook made this difficult too. The computer reads straight down the page as printed, including tables and pictures stuck in the middle of text passages. This is also not easy because you can't take your time when reading the hard concepts -- the computer voice plods on with or without you.

I still hope to go to college and take more courses in September but I am starting to become aware of how many barriers I will be facing. I have an appointment with a Disability Counselor/ Social Worker at the college to discuss my options for modifications or assistance in the future. Next time I might not get a multiple-choice exam!

The volunteer experience component of my back to work program overlapped with the last two weeks of the college course. My ability to study and focus plummeted and fatigue won out. I am sure my second terms marks will reflect my exhaustion.

Am I glad I did the course? You bet!

I found it hard to keep to the page limit in the papers I had to write for class. I always want to write too much!

Therefore...

I will save writing about my volunteer experiences for another day!

Bucket List- Choir singing

HAWMC -Day 23 It is a free day to write about whatever I want!

This has been a long month working on this daily blogging challenge and there is still one more week to go! I feel like I am getting a lot out of this process both in terms of learning to be a better writer and in terms of looking at some of my issues in a different way. It has also been interesting to read blogs on the similar topics written by a variety of people with different health concerns.

Anyway... It's a day off from my "homework"!

Yesterday I got to have a mini item from my bucket list come true.

I sang in high school choirs oh so many years ago. I even watch Glee with moments of déjà vu. I (blush) love choirs.

Last year I joined the Scandinavian Choir in my city. I was involved with the Scandinavian Cultural Center years ago when my kids were little and we went to a few events and were involved with the Children’s Dance group, but I personally did not do any performing. Almost 2 years ago I bumped into an old friend from the kids dance group and she invited me to join the choir. It seemed like a good idea, I had just started learning guitar and trying to read music again and this seemed like something else that would be good for me. Bob and I showed up and joined the choir.

Twenty-five or so of us meet at the Cultural Center on Monday nights under the guidance of a professional choral director and we are accompanied by a very fine pianist. We sing English and Scandinavian songs for an hour and a half and then we socialize and have coffee for another half hour. I get to work on my music reading, learning a few words in different languages and I really work hard on my memory skills. I work on singing better and I chat and visit and make new friends.

There is an extraordinary choir in our city called the Winnipeg Philharmonic Choir and they planned a performance based on the Theme From the Baltic to the Northern Lights.

Our little coffee drinking group was invited to come and sing along for one song.

I fussed around looking for a costume because we were to dress up "Scandinavian". Most of the rest of the choir members have done many little events and have costumes already and if I am going to keep doing this I will have to work out some kind of better outfit for the future but for the moment I just made it work.

Yesterday was concert day! It is a fairly short song that we have already worked on for our year-end concert. My alto part doesn't have too many Norwegian words and has a lot of oooos and aaaas, so after we had two rehearsals with the Winnipeg Philharmonic Choir I was good to go.

Their choir director had a guest conductor working with him for this concert so we had the privilege of being directed by Evgeny Guryev, Dean of the Choral Conducting Department of the Petrozavodsk (Russia) State Conservatory.

The Phil Choir did several pieces and then the time came and we filed up as a new row in front of the choir. I was slow getting to the front of the performance space and I was not happy about singing while standing on a step, but it was all okay.

We were very warmly applauded, but I suspect it had less to do with our performance and was more of a high five for an amateur group having the guts to get up on stage with such a great choir and -- to do it in funny tradition costumes.

Bucket List Item ---

Sing in a really great choir.
I think singing with a really great choir counts.
Check!

HAWMC -Day 22 Things We Forget

The Things We Forget.
Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?

There are so many things I really do forget that post it notes truly are a Godsend for me. They are on my books, on my fridges, on the mirror on the bathroom, They are on the big family calender and inside my date book. Most of them are all about specific things ... wake up at 7 am Thursday, remember your keys, take some money with you. The one on this page is what I really need to remember. I tend to worry too much, and over think things and then procrastinate until I am in real trouble.

How I look at sticky notes changed once I saw a video by comedian John Kawie who is also a stroke survivor. I really got a lot out of his video preview and his monthly short articles in the Stroke Connection Magazine, the publication of the American Stroke Association. I bought a copy of his DVD.

I have shared the preview below. I hope you watch the whole thing but please take a look at the bit starting at 3:20 minutes in for his comedy bit-- "post-its are my life". So funny and so true for many of us survivors of stroke and brain injury.






I used http://wigflip.com/superstickies/ to make the graphic. Fun!!

One More Week of Computer Class

I have done a full month of computer classes at the Society for Manitobans with Disabilities and I only have one more week to go.  We started with Word and then moved on to Excel and Access. It has been a basic overview of those programs with enough information to know how to start a project and what potential there is in the programs. I am a MAC user so it was all pretty new to me but I have caught on very quickly. Next week's plan is to work on cover letters and resume writing and about using the Internet for job searches.

I have had spare time during class so I started trying to learn a program called OneNote. I think that program might turn out to be very helpful for me. It is a way to organize a variety of types of information in a binder style complete with tabs and extra pages. It can include pictures, video, audio clips, and you can insert documents like excel and word and it can all be dragged around to format it anyway you like.  I am starting out by using it to organize my blogging plans and resources. Tools that can help with memory and organization like this program and my iPhone are real blessings. I spend a lot of time feeling very anxious and stressed while trying to remember what I am supposed to do. I just don’t have the energy for trial and error.

I am doing very well in class. I am finding that I am comfortable with the 3 hours now and I am productive for the whole time. I am also finding the work itself much easier than I thought I would. I don't think I am having any real functional issues related to my memory and cognitive problems. Drop down menus are great visual memory triggers. It was suggested that using keyboard shortcuts is faster but I just can’t seem to remember what the function is even called, never mind the short cut for it.  I run the mouse over the tool bars and think “A ha! Yes! Click that one!” 

I have found that a few of the physical issues are bigger problems than I expected. I have had real issues keeping my left arm elevated so that I can keep typing. I have put a huge amount of work into getting my fingers moving, but clearly I do not have great control over my left shoulder, neck and I even have some issues with my elbow.  My arm just gets "tired" after a while and it keeps slipping down from the desktop keyboard and I loose control over the whole arm eventually. I am having extra arm pain, but the more distressing problem is my lack of control with extended use. I know I need a break when my hand starts to spasm. I have upped the height of the chair, lowered the screen and adjusted the armrest and I even put a little cushion on it to help keep my arm supported and elevated above the keyboard. It is a good temporary solution but I know will need to work on arm exercises once the computer class is over.

My other big problem is related to my vision.  I find it difficult to copy from an assignment page to the computer. It is hard to move my eyes back and forth very much. I got a stand for the paper, and lined up the screen beside it and I also bumped up the size of the text on the screen. I learned that I have to actually look into the distance every 5 or ten minutes and I need to get up every hour or so and walk around and give my eyes a real break. I am getting pretty bad headaches and I am sure they are because of my vision.

One of the main objectives of this program was to see if we could increase my stamina. I now last for the period of the class but I don't really seem to have increased my stamina for the day as a whole. Coping well at the course has been at the expense of my other activities. I have not had the energy to exercise or to socialize in the evening. I am very cranky a lot of the time and all I want to do is lie down by six in the evening. Even tiny household tasks have become overwhelming.  On the other hand, I feel very good having a routine and getting out of the house. I like going to the course and it has really helped my battered self-esteem.

Adult Trainings

I agreed to do a training this past weekend for Adult Girl Guide Leaders.  That was arranged last summer.  How did the end of October sneak up on me like this?

We had a great weekend at a local camp with indoor facilities. We had a theme for the weekend ---  we were hosting a pretend "cruise" with lots of references to movies like Pirates of the Caribbean and old TV shows like the Love Boat and Gilligan's Island. Around 50 adults took part as we played "Minute to Win It" style games Friday night, trainings on various topics Saturday and Sunday and a Captain's Halloween style dress-up gala dinner on Saturday night. That was followed by a sing along campfire, karaoke and a chance to play Texas Hold'um poker for Girl Guide crests and badges instead of cash. We participated in a great Sunrise Tai chi session, outdoor gourmet cooking and we also had a great service project sewing lap quilts for use by the Alzheimer's society.

My hour and a half long session was called Knot-ical Adventures. At one time I was pretty good at tying knots. It is really not as necessary a camping skill now as it once was with modern tents and equipment, but it is still very useful to know a few knots and rope crafts.  I thought I should try to demonstrate knot skills by using a variety of more adult appropriate crafts and resources and to teach a few fun games that can be used when working with girls. Mainly it had to be entertaining, challenging but not too challenging, and applicable to my participants lives and helpful in their work with girls in their own Guiding Units. Phew!

At first I had hoped to have the assistance of my middle daughter but she wound up volunteering to run a session at the same time as me about issues related to child behavior called Mutiny on the Bounty.
Okay, not to panic, there was another leader who really knows her knots that was willing to help but she had a family emergency a couple days before the event. Oh oh.
My lovely eldest daughter Liz came to the rescue the night before camp and agreed to drive out for my session and give me a hand. I really don't think I could have done it without her help.

I had 16 ladies signed up with varied experience in knot tying so I felt I needed a large variety of crafts and resources to meet their needs.
 I found it incredibly hard to decide how to organize this session. Executive function /cognitive problems reared their ugly head when I was organizing and planning for this thing.   I did over plan and I  had way too many crafts and resources, but it was easier to let some activities go than find myself short of things to fill my time slot. It went well and everyone seemed to have a good time.

I do have some right left confusion, and tying complicated knots was a whole lot harder than ever before so I put in a lot of practice to try to get back up to speed.  I left the majority of the hands on demonstrating to my daughter and to a couple of cool YouTube videos. I acted more like a coach.

This chance to teach a session mattered to me emotionally since I really wanted to be teaching and leading training sessions again; it was part of me trying to reclaim my old life and skills. Liz also helped keep things moving smoothly from activity to activity and she made sure I didn't try to run back and forth too much and loose my balance.

Two years ago I was not able to tie up my shoelaces and everything was Velcro closures. A year ago I could hold on to items with my left hand, but could barely rotate my wrist.  My hand would grab onto something and my hand would spasm closed very tightly. I had to pry my left hand fingers off with my right hand because I could not convince my hand to let go. This year... well ...my hand works. I drop things a lot and I still have trouble with two handed tasks like typing and piano playing, but I get by.

I am pretty sure that most of my workshop participants would be shocked to know what a major challenge this event was for me and how exhausting it was. It has taken me 4 days of resting to get moving again after the excitement of the weekend.

Last week I taught one knot to a few of my Stroke Recovery Association buddies.
I challenge you to give this one a try. It might even prove useful some time.

Vocational Testing Day 4

Today went a little better.

I was allowed a little more time with that math problem solving from yesterday but basically I still took forever and I think I got more questions wrong than right. I was never fantastic at Math but it is unbelievably difficult now.  One thing I did was write in the exam book! Gasp! I still needed to write on the bubble sheet, but at least this way I could double check that I was still on the correct line of the test. I kept doing stupid things like figuring out the answer and then I would find myself looking for the numeral of the question  as if it was one of the multiple choice answers. That would be my short term memory issue rearing it's ugly head.

The tester got me to do a memory test. He had me look at a page with 20 pictures on it for a period of time and then I was supposed to recall what the pictures were. I have had lots of practice with this style of test in OT. This time I think I recalled 14 items and I told him I have worked on this a lot and have found coping techniques. He said that he could tell I was using some techniques. Yup it shows.

Today there was also a hands-on component to the testing. I think the idea is to check fine motor control and hand eye coordination. I do not think I have a future as a welder.  My mechanic husband would have probably split his sides laughing if he could have seem me try to string electrical wires through little holes.
Worse than showing limited aptitude on those skills was that I found it impossible to work on the paper and pencil tasks that I was personally more concerned with while others were taking their turns banging on the test equipment. Even the sound of the instructor talking in the background was enough to throw me off track.

We also had some tasks sorting cards into different orders. I think I was pretty accurate with those tasks, but maybe not as fast as would be needed for a career as a filing clerk.

Another activity was a spelling test.  It was the old fashioned version where the teacher says the word and you write it on a piece of paper. I had an overwhelming urge to get up in the middle and go sharpen my pencil but I resisted.

Then we went on to a language arts test. We had to dentify punctuation, capitalization and grammer errors for one section followed by organizing sentences into the correct order in a paragraph.
Oh oh. You writers and editors out there show great restraint when  reading blogs like mine!

A highlight of the day was lunch with two of the other ladies. We talked about how much difference it made to be having a breakfast with protein before doing all this testing. We talked a bit about our hopes for new jobs. We also talked about how nice it is to have some structure in the day. You spend your working days looking forward to vacation time and retirement, but the reality is that it is good to have somewhere you are expected to be and something worthwhile to do.

Clip art licensed from the Clip Art Gallery on DiscoverySchool.com

Testing and More Testing

Today was day three of the five day job rehabilitation apptitude testing. My vocational therapist/coordinator got me into this testing program sooner because they had a cancellation.

I am not having fun.

It is a nice space, nice staff and only 4 of us are being evaluated. It is like doing a 5 day version of a SAT test with a few interviews mixed in. You get there, sit down and get handed a test booklet.  There are interest tests, basic skills, basic knowledge. There are vocabulary tests, mechanical aptitude tests, spelling tests, basic arithmetic,  harder math and math word problems to solve.
My eyes barely track together  across a page now, but that is nothing compared to what a question booklet and a separate bubble sheet can do to me.

I must say it really sucks to have my shortcomings  made so obvious to me....  and they haven't started showing me the analysis of the results.  

Yesterday there was  a strange little computer test to do. That one had a variety of skills to test with some of them timed. It was kind of part pick the best answer for spelling, synonyms, math and some that were more like a computer game. You move the square box over the shape that is similarly or differently shaped or colored as fast as you can.
Much to my shock I got none right and it set off an alarm that had the girl administering the test come and explain in person that the objective of that part of the test was to match the size of the box in the center with the same size of shape on the outside of the circle. Oh my goodness! I could not get it right! I had a flashback to an early days event when I was on the floor trying to match up a garbage bag of Tupperware containers and Tupperware lids. I wound up sitting there crying and not having a clue what was wrong and why I couldn't match them. (I now use zip seal bags or things with lids attached)

Today the test was something called the "The Canadian Adult Achievement Test"

It is a measure of an adult's current functional level in mathematics, reading and language. This battery of achievement tests has been designed specifically for the Canadian adult, regardless of his or her previous school experience. more here

It should take about 4 and a half hours, not including breaks.  I have huge cognitive math issues now and after 80 minutes of math I was barely functioning,  let alone recalling order of operation for algebraic statements.  My head was pounding, my left eye would no longer focus and I was seeing double. They sent me home at noon telling me that they will give me time to complete the other sections tomorrow but that the disastrous last hour from today is now a write-off.


Two more days to go.

graphic is from http://www.discoveryeducation.com/

Summer at the Lake

I am spending a fair bit of time at the lake right now. Cottage life is a real gauge for me of how much I am improving. You tend to not see changes when you are dealing with your day to day life, but at the cottage I am comparing my activities to what they were last summer.  I told a lady at my Stroke Recovery Support Meeting that I was going to the lake and her response was something of a harsh .. "nice for you just getting to relax at the lake.".  It couldn't be farther from the truth. I don't want to spend my days just relaxing,  I want to cook fun meals, I want to chop wood for the fireplace.  I want to go swimming,  hiking and boating and I want to be helping with the work of repairing and maintaining the cottage. I work very hard to towards those goals and I participate as much as I am able.

My cottage is a little primitive to say the least, but it is the place in the world that makes me the happiest. It is the only cottage on a 5 acre island, and is run on solar energy with a propane stove and BBQ and no fridge. We have had the place for 28 years now and mainly we putter with it making tiny changes each summer. Now we are at the point where we are starting to redo the repairs we made when we first bought the place. The walls are creaking, the paint outside is peeling, the floor is slanting a little, and dock boards need replacing.

 Last year I literally had trouble walking over the floor because of a little slant. This year I only notice it when I am overtired. The 5 steps to get in the cottage are a bit rickety and steep but this year, as long as I am holding the rail I do okay. Midnight trips to the outhouse involved waking up my husband to get me down the back stairs and over a few feet of rocky terrain, This year we understand my problems so much better. We have changed the step and added a whole lot of solar lighting and I can cope on my own much to my families "night time relief".



My other huge issue has been getting in and out of the boat at the docks. We have just resurfaced the mainland dock and there is a dock pole in the just the right spot to hang onto. The dock still needs a bit of leveling but having an even, secure surface is just wonderful! Both docks are solid docks, not floating, and once I get up on it I stop and take a minute to stop feeling dizzy from the upward move.  Getting in and out of the dock is not the simple matter of hopping over the side that it once was and now I need a hand getting out, but this year it doesn't involve 2 peoples help. Last year we needed one person in the boat with me acting as a counter weight and supporting my hip and someone on the dock pulling me upward. It usually wound up with me crying and wanting to vomit.

Next weekend I am going to try swimming in the lake again. Last year I got in the water only one time with great difficulty and once I was in the water I found myself unable to tolerate the movements of tiny little waves against my body. 

A couple days ago my husband installed a swimming pool ladder onto the end of our dock. When he  put it in we found it actually touched a flat rock at the bottom so when I climb  down  I will only be in at thigh deep on about a 2 foot wide rock platform.  All the rest of the way along the dock is deep enough to dive off of.  I think the ladder will make all the difference in my being able to get in and out of the water.  When I was doing pool therapy last year my physiotherapist and the aquatic therapist felt it was a safety issue for me so we put a lot of energy into figuring out how to  use a ladder and get in and out of the pool safely using a ladder and not just ramps or steps.


Here is my to do list for next weekend:

• cut up some more kindling with my clippers

• go swimming using my new ladder

• help lay laminate flooring on my screen porch

• do my at home physio exercises

• practice Guitar. (I have hardly practiced all summer)

• play a card game (think cognitive therapy-- still very hard for me and not a lot of fun)

• work a bit on a little craft for Christmas

• If time and weather allows- help husband paint small bedroom OR power wash our huge dock

Linda-- Fall 2010

And yes, I will still find time to lounge in my adirondack chair on the dock while reading a magazine, and we will sit on our screen porch and enjoy a relaxing candle lit dinner while watching the sun set.

Reading Difficulties

Reading has been a nightmare.

 I got sick when I was only a few chapters into a newly published book written by my close friend.  It was over two years before I was able to finish reading it.

I found that I could not read for more than a few minutes at a time. I was able to read words and I did know what they meant, but by the time I got through a paragraph I had no idea what I had just read.  I did not understand what was going on in the book or with myself.  I developed massive headaches anytime I tried to read.

Occupational therapy eventually explained a lot of my problems.  My damaged short term memory made it hard to recall what I had just read.  I needed to read and reread material and I often had to draw a few pictures and use a highlighter in order to follow written material.  I was not reading items to the left of the page--- I wasn't even noticing that they existed. When I had a book opened up I tended to read only the page on the right and not the one on the left. I also couldn't get my eyes to track from the end of one line to the beginning of the next line.

The massive headaches were at least partly related to the fact that both eyes were not tracking at the same pace. My left eye, just like the rest of my left side, was weaker than the right and the difference really showed when I was trying to do any finer eye movement.

While all this was going on I discovered that reading was far easier on the computer than reading printed text. Without even realizing what I was doing I developed a few coping strategies. I had the size of the print on my computer cranked right up. I changed the kerning on documents whenever I could. Computer articles are short compared to my books so I could manage to complete an article before my eye started to twitch and my face go into spasms. I learned to locate my lap top computer off to my right side and that seemed to help with the left side neglect.

My occupational therapist worked with me to find accommodations and exercises. I borrowed  bigger print books or used my photocopier to blow up smaller documents.  A ruler placed under each line I was reading helped me track across the page and helped me keep track of where I was on the page. I put a thin red strip of paper,  or a bright colored elastic band stretched over the book at the far left margin in order to draw my eye over to a "starting point".  I also worked on reading 5 or 6  times a day. Initially I could read for no more than 5 minutes at a time, and week by week we were increasing the time by a minute or so. Just like any other exercise, I slowly worked on building the muscle control of my eye back up again.

Last year my friend Sue published a sequel to her first book of young adult fiction. I still was not through the first one. I so much wanted to read the books and been able to discuss them with her and our friends. This past year I did read them both. I could enjoy the experience now instead of feeling mainly frustration and pain. Thank-you Susan for your understanding and for sharing all your talent!

In the past three years I have read less than I would have in a month before that. I used my limited reading ability to find books to help and support me and I have read very little fiction for fun. This past weekend I decided to read a newer Debbie Macomber romance novel while hanging out at the lake. No health and wellness related material for me for one weekend!  Once I got into the book I found out that the heroine was a lady with a severe leg injury. She works on learning to dance and ride in a paddle boat as well as work on self esteem issues related to being a disabled woman who is beginning a new relationship. So much for not thinking about disabilities. I just had to laugh.

Below are my reviews of most of the printed books I have read in the past three years.
Images are intended to give clarity and no copyright infringement is intended.



A Change of Plans: Women's Stories of Hemorrhagic Stroke
Sharon Dale Stone

Sharon Stone is a Sociology professor, and stroke survivor herself. She interviewed 11 women about their experiences after having a hemorrhagic stroke. This book was an incredibly helpful first read for me. I sat and cried through a lot of it as I realized how many of my issues were part of a stroke and not something that was a personal weakness or my fault. It was inspiring to read how these women of different ages and backgrounds coped with the consequences of their disabilities.



My Stroke of Insight: A Brain Scientist's Personal Journey
Jill Bolte Taylor

Jill was a well known  Brain Scientist who had a stroke. She seems to have had a remarkable recovery and has taken on  a new perspective from the experience. I loved reading her detailed account of her stroke and recovery process and hearing about the support of her family and friends. I even loved her baseline biology lessons. I am not as sold on the overall right brained, left brained world view that emerges as the book progresses.  Mainly I was inspired by how she has been able to recreate herself from her former role as a biologist to that of a successful  author and speaker.




Always Looking Up: The Adventures of an Incurable Optimist
Michael J. Fox

 Michael Fox was being interviewed on all the late night shows and I felt like I needed to read what he had to say. He really does a wonderful job with this autobiography as he shares a remarkable sense of optimism. It is not a passive "lets all think happy thoughts" version of positive thinking but rather a belief that positive things indeed can happen and life can be improved and he is motivated to take action to achieve such goals. I admire this very much. At one point he quotes the Lance Armstrong Foundations Mission statement: To inspire and empower cancer sufferers and their families under the motto 'unity is strength, knowledge is power and attitude is everything'.



Stronger after Stroke
Peter G. Levine

I started off by reading Pete's blog.  I learned so much from the blog that I became interested in reading his book too. I wish I had been capable of reading this book earlier in my recovery. Pete has a lot of information about physical rehabilitation techniques that every stroke survivor should learn about and so should the people who care for them. Peter's blog and book have allowed me to gain a better understanding about stroke recovery and how it works, and a bonus is that knowledge has also helped me in my communication with my therapists. I am following many of Pete's suggestions in my efforts to maximize my recovery, and I am very glad to recommend this book to other Stroke Survivors.

Moonwalking with Einstein: The Art and Science of Remembering Everything
Joshua Foer

This book was just what I needed to read this winter and I was surprised to find it really entertaining. OT taught me lots of memory strategies and this was like the advanced course. Josh Foer is a science writer who attended the US Memory Championships as a reporter. The following year he competed and won the competition! In this book he reviews science literature on the topic of memory in a very approachable way and he interviews many interesting people to get a perspective about memory and how it works. I have tried to use what I learned from this book and I  feel that it has been helpful to my everyday life.


The Shack: Where Tragedy Confronts Eternity
William P. Young

I read this book in the past month and it is pretty different from anything I have ever read. It is being praised by some church groups and condemned by others. I thought any book that was number one on the New York Times best sellers list for 70 weeks was worth a second glance. The book was actually good to read with lots of touches of humor despite the serious nature of the topic. I would say it is one approach to the question of why bad things happen in the world. Perhaps this in not a book for everyone, but I must admit I enjoyed the book and it gave me a few theological issues to think about.  I was drawn to this book because I am a bit preoccupied with the topic of good things coming out of personal tragedies.



Withershins and Spirit Quest
Susan Rocan

Last, but not least, are my friend Susan's great books for young adults. They are time travel adventures that teach about the history of our area and touch on many current issues relevant to youth today.  There are great realistic characters in a moving historical period. I look forward to her next novel!

I Completed My Occupational Therapy!

 Last week was my very last Occupational Therapy appointment.

I have been with my occupational therapist at the Easy Street Program for just over 2 years now. I have had weekly appointments and I have done a phenomenal amount of homework. I can't begin to tell you all the material we covered and all the information I learned or relearned in this time. I keep saying that I have never really worked or studied so hard before in my whole life. I didn't even know I was capable of working this hard!

I have had a lot of cognitive problems.  At this point I am coping pretty well. My memory, for example, is not the same as it was, but between using memory tricks, taking notes as I go and recording little messages to myself I am really functioning pretty normally. I wish  all my cognitive problems had just gone away or I had "recovered" but the fact is I have recovered a bit and I have learned a lot of adaptive strategies.  I know that I will still keep coming up with different cognitive problems in my life but we have worked on developing the skills and techniques to allow me to solve my own problems in the future.

 We have been picking up the loose ends and making sure I was in a good place to move on with my life. We did a few more cognitive tests to check on my status as well as other evaluations and we worked on those last few worries. I now have some future plans, like job rehabilitation, and possibly even going back to college. I can keep working on developing my current strengths and learning to be the best I can with where I find myself now.


During the last month my therapist had one last project for me. I was to gather up all the occupational therapy notes and handouts from the past two years and get them organized into a resource binder that I can turn to in the future. The second week I came up with a very long list of all the different skills we had worked on, and all the different goals we had identified.  The third week I went through the previous list along with my actual papers and I tried to make categories for the papers. For week four I had my binder organized, but it became obvious that a little more refinement was necessary and I added an extra category and printed out an index page and added labeled dividers between the sections.  My binder has my handwritten notes, it had jokes, and quotes. It has handouts and worksheets and list of questions I had written out to ask my therapist. Yes, it is a resource binder, but it is also a diary that reflects so much about me and my struggles over the past couple of years.

The last page of my binder has photos of my front steps we had to show the therapist why I was having trouble getting in the house. At the beginning of this journey I would sit on my walker crying at the bottom of the stairs because I was unable to get into my own house. That seems so long ago in some ways and like it was just yesterday in others.

I wanted to give my therapist a little gift.
I photographed a little angel statue in the hospital garden.  I thought it would be meaningful to her and that it would reflect some of the issues I had worked on.  I printed it up and put it in a pretty frame. I knew that she would love it and that she will think of me in the future. I hope that she will also remember with pride what we have accomplished together.

Conference Training Day

 It has been a week already since The Manitoba Guiding Conference. I have spent most of the past week doing only my required activities and trying to catch up on some extra rest. All that fun last weekend was exhausting! I had fun and caught up with lots of old friends and tried to do everything there was to do. Basically I overdid it and paid for it all week, but if I had another chance I would do it all again.
 
I went with my Guider daughter Alicia and 3 of her teenage "Rangers" unit. We stayed at the conference hotel and got adjoining rooms and it worked out really well with Alicia and I in one room, and the girls in the other.  I was glad not to be going back and forth to my house. During lunch hour I went up to the room and stretched out and then again later in the afternoon. It gave me a second wind so I could enjoy the banquet last Saturday evening. Swimming, hot tub, junk food and a cheesy movie with the Rangers all added to the fun.

There were 4 training sessions that I attended. You got to pick from a list of options for each of the 4 different time slots.

 First was  "Going Green" to develop and teach environmentally responsible activities for the girls, and I was just about convinced to go get some red wiggler composting worms for my kitchen. It was a pretty good session. I learned a few new games and it was pleasant. The presenter was full of programing ideas for youth. Did you know that families use 5 gallons of water a day just for brushing their teeth? Turn that running water off while brushing! 

We play a game in Guiding and Scouting called a Kim's game. You get a collection of objects together,  show it to the kids briefly and then you cover it over and they try to remember what the objects are. We played it at this session and as we tried to remember the objects we were supposed to suggest a way we could recycle or reuse the object we listed. When I was first being assessed for cognitive impairment two years ago,  I was surprised to find that a "Kim's game" was part of the assessment. More shocking to me was how bad I did on it it back then. Last weekend I did okay. ummm kids jammie bottoms, yogurt container, lid, book, envelope and.... I forget what else she had now, .. but I retained 7 out of 11 items when it mattered.


My next session was "Bullying" Girls United. It was a bit tougher.  I had one of the teenagers with me for that session  and she didn't follow a lot of the details and she was petty bored, but at the same time I think the topic was hitting a bunch of painful buttons. I should have taken her for a juice run instead. Truth be told I was finding it a little hard myself to think about the topic. I have been overweight since I was a kid and I suffered a lot of bullying and discrimination based on my appearance. Sadly I have now experienced discrimination as a woman with disabilities.  For more information about Bullying you might find the following site useful. http://www.prevnet.ca/

After Lunch I did a Restorative Yoga session while my daughter did a very active Dance session.
  I was such a natural and I did great! It was pretty well all done sitting or lying on a mat so no advanced poses that required balance skills. I am pretty flexible, but I guess all that physio has me moving pretty good! I was surprised at how hard it seemed to be for many of the other Guiders. I felt very proud of myself  (I told my Physiotherapist and he was very proud of me too LOL) 
I might very well want to take  yoga in the future.

The last session was a Mosaic Tile Picture Frame. That turned out pretty good looking too.  Only thing I had trouble with was that I was supposed to nail a picture hanger onto the back of the wooden frame base. I tried to hold a little nail in my weak left hand and hammer with my strong hand.  Let's just say I should have gotten someone else to do that part.



Evening was the dinner and awards, followed by visiting small parties in different Leaders rooms. It was a chance for the teenagers to meet Guiding members outside our immediate area and even from around the province.


I had a great weekend and am glad I went, but I was sure happy to get home to my own bed for a nap once the conference was over.

Me Making Music?

My grandfather was a good musician and my dad was a really talented pianist with a lifetime joy in music. I took piano lessons as a kid and I sang in the school choirs. In fact high school choir is where my husband and I met. 

It was no surprise that we sent our kids to music lessons. We embraced the Suzuki style of music lessons where the parents are considered the at home teachers. Parents participate in lessons and learn how to coach their kids in a positive way through their home practice. I had one daughter who adored the violin and singing and she still teaches music to several lucky students.


We found that the music lessons were a real help for one of our children who has serious learning disabilities. It helped with concentration, memorization, and there was such joy in playing the performances and pride in accomplishments.


Well here I am needing to work on my own cognitive skills and I also wanted to get my weak left hand working up to speed again. Music seemed like such an obvious next step in my self imposed therapy program. At the same time, I am being really hypersensitive to sounds so that was going to be an extra challenge for me to get used to the extra noises. Here I am trying to learn guitar and I even joined a community choir.


Last summer my social worker/ therapist asked me to pick a short term goal and I found myself saying that I would find out about guitar lessons. Apparently I did not follow the concept of a short term goal! There is nothing short term about my Guitar challenges.

I went to my first lesson and found that I was really not coping on so many levels.  I had trouble even carrying the guitar into the teachers studio. My left hand was not working well enough to do the guitar exercises properly and my right hand had a sore lump that turned out to need surgery, so I took a medical leave after only one lesson. 

Five months later my right hand was healed. I had great physiotherapy for my sore finger along with the rest of my stiffened right hand and through all this I had remarkable healing of my left affected hand.. I was forced to use my affected hand with my strong one out of commission and the improvement of my hand function was huge.


I resumed guitar lessons in January and have been working pretty hard ever since. My efforts are starting to actually sound a bit like music! It really does force me to think about what I am doing. I need to concentrate really hard. I used to read music easily but I am finding that I need to relearn those skills all over again just like I needed to start over with numeracy. Tracking across the page when reading is really challenging too. My fingers are slow and clumsy but I can see steady improvement and increasing strength. My next big challenge will have to be memorization because I am having trouble remembering even little phrases of the music due to issues with my short term memory.


Years back, playing piano was a huge source of comfort to me and I always managed to relax when I was playing. In the past few weeks I have noticed the occasional glimmer of joy and peace when playing the guitar.  There is hope again.

Images courtesy of DailyClipArt.net