Art Project::Watercolor And Snow Themed Meetings

Winter is a game changer in Winnipeg. We complain about how cold it is but we feel proud about how we press on with our everyday lives no matter what. It is cold and we adjust, we put on boots, drink hot beverages and plug in our cars so they will start. We embrace it. I wanted to do an art project at work that reflected winter and I decided to to go with Snowflakes.this year. I started by spending two theme-related sessions leading up to the art project.

The first program involved talking about the cold weather we are experiencing and then moved on to reminiscing about what they recall about winter fun and work. I asked about, shovelling snow, going sledding, skating, riding snowmobiles! I heard several people wishing they had taken the time to build snowmen. We talked a bit about global warming and how shorter warmer winters might beof  some benefits and there also might be some problems.

My second snow themed activity involved more individual and small group visits. I looked up a lot of pictures of close-ups of snowflakes on our department laptop. Little videos showing how a snow crystal grows proved to be particularly interesting. We talked about how many arms a flake has and how awesome they are. We speculated if it was true or not that there are no two snowflakes the same. I particularly like using the information and pictures on http://www.snowcrystals.com

For Art Day I wanted to use watercolor techniques which is something we don't do very often. I like tape resist projects and used strips of painters tape over water-color paper. The paint was inexpensive paint dry disk sets. I attached the paper to the table with the tape. It kept the projects from sliding around and at the same time, it gives a nice kind of matting around the art. We used bigger brushes and I encouraged the use of lighter colors to suggest a snowy day but any color was fine.

The only really note worthy change was that I rotated the paper as the session progressed. That made it easier for people who don't have a lot of reach with their arms and to encourage people to cover that whole page with color.

The pictures dried quickly and then we had the fun of pulling off the painters tape to reveal our designs. I like to back art with poster board pieces to show off the work, make it look a little more finished and to make the paper sturdier and lie flatter.

Our Artists were quite thrilled with their final results.

Seating Problems

I feel like Goldilocks - I want to complain about seating.

I have a very sore right hip and leg right now. I can't get comfortable.  The couch is too soft, the reclining chair is too hard the other chair is too low.  I am putting a pillow under my behind on the upright recliner and I have a small rolled up toss blanket behind my back to make things tolerable.

A few years ago. when I had so many issues with my left side. I was having a different set of seating issues. How do I sit down? How do I get up? How do I keep the chair from tipping over?  The chairs needed to be very stable because I was not stable and tending to loose my balance. They needed strong arms for me to push off on. If I sat on the couch I needed to be in the right side corner so that I could  have that arm to help me up because my left arm was not strong enough to get me anywhere.  I wanted the chair  or couch to be on the left side of the TV or where ever the action was because I was seeing better out of my right eye and frankly was recognizing movement better with my right eye due to some lingering left side neglect. I found that I would go to group events and I constantly got given a seat all the way to the right of a long table. I found not only did I not see the people on my left side properly.. I found I had trouble hearing properly from that left ear too. In particular I had trouble discerning whose voice was whose. I tried to turn my head to correct and that just made me dizzy and nauseated.

I find the same thing happens with my stroke friends and other people I know. Seating is undervalued.  Individuals have their own interests and needs and it takes a little effort to accommodate them but the seating can make all the difference to a persons enjoyment and comfort and I would even say their quality of life. 

People like to be near their friends, People like to sit away from people they don't care for. Some individuals like to sit close so they can get a view or where the best lighting it and others like to sit close enough to hear the best they can.  Music systems with their amplification might seem great for people with hearing loss but their hearing aids might react badly to the louder sound range and those individuals not only want to be far away from the amps, they want to be out of the room!

What chair feels good? Is this wheel chair easy to move? Can we get a comfortable cushion for the wheel chair seat? (they are unbelievably expensive) 

How about a bed that is at the right height to get in and out of with comfort and maybe a grab bar to help the process?  Clothes they will not get caught up when you are trying to slide in and out might be helpful.

My former physiotherapist spent a few of our appointments teaching me how to drive a scooter. It was kind of embarrassing and fun all at the same time. She ran ahead of me in the hospital hallway yelling.. "Beginner driver! Get out of the way!" I was not talented at going Rabbit speed or Turtle speed which were the two options on the scooters. She said I better work on recovering fast and walking again because I was not a safe driver. Considering my vision issues at the time it was brave of her to take me out in the public!
The fact is the scooters and powered wheel chairs have a lot of different options, and for some people they can provide so much independence and freedom. Potential users do need an opportunity to learn how to use them properly and safely and the vehicles do need to be physically a good "fit".

We also can try and work on exercises to help us in recovery and in maintain  our strength so we can get out of those chairs. Yes.. that is what I have to do again- I have to work on getting my back and hip stronger according to my current physiotherapist.

I will work hard at getting stronger again  but I might just need to purchase a different comfy chair.

Music and Brain Injury

Last night I was reading a post on a Facebook board for Therapeutic Recreation directors asking about how best to use music to help people who have had traumatic brain injuries. I actually got kind of worked up reading the responses. I felt that people might not be recognizing the difference between the needs of people experiencing dementia and those with TBI. 

I wrote a short answer to that post but really I have a lot to say on the topic. Music is so much more than entertainment. It is part of who we are, a part of our experiences and what we remember. It is what some of us marched to, what we danced to at our weddings, and what we sang as we rocked our babies.

I have always loved music and grew up with it around me. My dad played piano and I started piano lessons when I was in grade two. I was always singing and I even met my husband when we were both members of our high school choir. Our four children all took music lessons and I can't begin to add up the hours of lessons, and concerts we took part in.

After I had the brain injury I developed a love / hate relationship with sound. Music and sounds had a horrible effect on me. I was very easily overwhelmed by movement and noise. The sound of music made me nauseous and dizzy and any kind of beat seemed to kick that constant headache I was feeling into high gear.  The more the music, the less I was able to focus and the more disjointed my memory and thinking became. I cried because I was missing music that had loved and I cried because music had the ability to incapacitate me even  further than I already was.

As time went by my physical and occupational therapists started to do things like adding sound and music to sessions and trying to get me to tolerate the music. A lot of therapy for dizziness is in the category of .. " You are not going to like this.. but we are going to take you to the point of being dizzy and then back it down a bit so we can build up your tolerance. Don't worry I will jump out of the way when you start to throw up!". Yes it is absolutely that horrible and you have to keep going back over and over for more torture, also called VRT or Vestibular Rehabilitation Therapy, if you want any chance of having a life outside your bedroom.

Gradually music, in small doses, became one of  my greatest therapy helps. I started guitar lessons and I am sure I would not have regained such full use of my hand if I had not worked so very hard to get my hand moving on that guitar.  What I did not realize at the time was what a big impact the music was having on helping me recover some of my cognitive skills, especially my memory and sequencing of tasks.

My husband and I joined a community choir and there I was - out of the house doing something new and something other than therapy sessions. It was social, it was a new kind of learning and it felt encouragingly like a normal person kind of thing to do.

 

As I began my journey toward becoming a Recreation Therapist it was arranged that I would volunteer at the Misericordia Hospital. One volunteer position was helping with the spiritual care, mainly transporting people, handing out music and singing my little heart out with the residents during services. The other main job was assisting in a group program led by a music therapist who came weekly to the attached personal care home. The music was so powerful in both programs and what joy it brought to the residents!

I must admit that I personally don't do that much with music when I am at work at the personal care home. I have lots of opportunity when I could choose to run a music programs, but I rarely do. I think I value the role of music so much that I don't think I can live up to my own standards for this kind of program. This issue is apparently something I currently need to work on. I either better get to be a better musician or get over my perfectionist tendencies when it comes to the topic. I will have to report back about my progress in the future.

 I wrote in a previous post about singing a karaoke song at an event at the Stroke Recovery Association of Manitoba. That incident was very powerful for me in terms of mental and emotional health. The song I picked from the list of choices was the Beetles song, Blackbird. I was really scared to sing publically but I did it and felt so brave. When I finished there was no missing that I had an impact on the other people there. At first I thought they didn't like my singing or that the song was a bit too much. No, what happened is I had hit on a common emotion and wish for the group. It was what brought us together. We were all longing for the freedom of  having our broken wings fly again. We wanted our broken eyes to see again. To be free.

 

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life- You were only waiting for this moment to arise

 

Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life- You were only waiting for this moment to be free

 

The power of music. 

 

 

 

Please note

 I was unable to find copyright info for the pictures this time. If there is a problem please let me know and I will gladly give credit or remove the pictures.

 

So Many Little Changes

I have not written for such a long time and it has been good for me to take a break from blogging. I am still working at my small part-time job and I am gradually getting used to working. It seems to have changed a lot of the little aspects of my life.

Clothing.. I need more of them. I had a jeans, sweater and t-shirt wardrobe. Now I need dress pants or active wear clothing. I need cooler dressier shirts that are good for moving in a warm building. I personally need shoes that give really good support.

Sleeping... I need to get up at 7 in the morning and I have to be well rested. I go to bed .. start thinking and then have trouble falling asleep. Lately I am back to using meditation at night to try and keep me level.

Remembering... I try so hard to remember names and other information. I think I am doing better but it is still not easy for me when the pressure is on.

Meals... I need to pack a lunch and eat in a lunch room and that still feels weird.

Co-workers... really new to me and it is fun to have co-workers to chat with who are doing similar jobs. In my last working life I had a boss and no one working with me or under me.

Swipe cards.. I have to swipe in and out at work to track my work time... that is new to me too. I live in fear of breaking or loosing the thing.

Housework.. Not one of my priorities at the moment, but we will catch up eventually.

Fitness... This has two sides to it. My endurance has shown a huge improvement. My legs and hips are building muscles. The flip side is my knee and shoulder joints are getting worse fast. Arthritis is winning and I am back to visiting my doctor.

Paychecks... Direct deposit is good. I set up an account for my earnings and the amount is going up slowly. I don't work a lot so progress is not spectacular.

 

I know that none of this stuff is too exciting or too important- just part of my days now.

 

 

 

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. 

 

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?

Reality vs Pretend

I just finished a homework assignment.

That Experience a Disability Workshop my class did a couple weeks ago had a write up component to it.  The first part was writing about the different activity stations we participated in thinking up what kind of adaptations could make all these activities easier.  Yup got that. I actually tried to write a little more formally like what was expected for the class but eventually I gave up and just started writing whatever I wanted.
One section was writing about the leisure activity of playing cards, Connect 4 and Bingo as someone with arthritis or as someone with stroke. When writing about what it was like playing cards with the non dominant hand I found myself talking about how there are card holders available for purchase but it is cheaper to get someone to router a block of wood to make a gizmo for holding the cards.  I did not have anything nice to say about a different gizmo for helping do up buttons on a shirt. It was pretty hard to separate facts for the assignment from my many strong opinions.  (blush)

The last write up part turned out to be very stressful emotionally. It was a fantasy situation. You were to pretend you were a person who was just placed in a personal care home after having a stroke. uh huh.

The short simple version of that section would be:

Walking into the corn maze.

1. List several types of Leisure activities you enjoy
2. How you participated in each of them in the past,
3. How you have recently been participating in the activity.
4. What challenges are being faced?
5. What strengths do you have?
6. What are the objectives you are trying to meet?
7. Make a plan for how your Recreation Therapist can adapt or find related activities so  that you can take part in your favorite leisure activities.

In the Corn Maze

This hit very close to home. I did most of my rehab as an outpatient but I  still went through, a lot of goal setting while trying to get old skills back and eventually did give up on some activities I love. I read with interest as some of my blogging buddies work hard and struggle to reclaim their work and leisure skills too.  I realized a while ago that this job I am training for is something that I see as critical to recovery or at least to a good quality of life.

For this assignment I didn't need to imagine what my leisure interests might have been and how they can be adapted. I have been living this assignment over the past 5 years. I have indeed been fortunate to have had so much professional help, as well as friends and family, to cheer me on and keep me moving.

In case you are interested I listed my interests as Photography, Singing and making music, and Hiking and nature activities.

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

HAWMC Day 13: Health Acrostic

I thought I would try to  do today's prompt from Wego Health and it was harder than I thought it would be.

Today’s Prompt:

• Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

The first challenge is what word to pick?

a) I really have not gotten into twitter -- so no hashtag.

b) Username? Well  I think they mean my blog title and Leading a Healthy Life seems too long and therefore too much work.

c) My condition seems a bit complicated for a word choice. Nothing was straight forward in the diagnoses, therefore stroke is close but not exactly the accurate term for my condition so brain injury maybe?  Vestibular disorder? Perceptual issues? Cognitive impairment? Left side weakness?

It struck me that is not how I would choose to label myself on the good days. 

I would like to describe myself as a....

Strong

Unique

Resilient

Versatile

Identity

Voice

Organized

Resourceful

 

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!

Older and Wiser?

I just got home from the dentist and my next appointments will be with an oral surgeon.

I have needed a lot of repairs done and it is just keeps getting worse.   I have never had really great teeth, but issues with my face have aggravated the situation. I have some amount of drop in the left side of my face and altered sensation.  I had a bit of speech therapy early on to physically get my tongue moving better and work on moving my lips properly.  I tended to choke sometimes when swallowing and I was always biting my cheek to the point of bleeding.  My bite is now off  too and that mixed with some facial spasms have resulted in several cracked teeth and it looks like I am about to need a couple of them pulled along with some other major repairs.

Today I questioned the dentist about a spot that had been hurting on the gum at the back of my "good"side.

It looks like I have cut a somewhat undersized wisdom tooth in the past two weeks!  I am in my mid 50's and just cut a tooth! My almost two year old grandson and I have a lot in common this month.

Yup, it's true... after all this I am apparently a whole lot older and a little bit wiser.

Computer Class Began

I started the computer course  at the Society for Manitobans with Disabilities today. It is really a low key kind of approach for our group of about 8 students with a teacher and a volunteer helper. Today we started with Word to make a series of posters. I have not used a PC in a long time and you could certainly tell that I was not using my beloved MAC laptop.  I was surprised at what a hard time I had just going back to using a mouse! 

I definitely had trouble following anything the teacher was doing on the screen at the front of the class. By time I looked up and focused on the screen I missed whatever the heck he was trying to show us, but fortunately that was a very minor part of the class.  The class assistant was right there and ready to point things out to me.

Once I got home I rested for a half hour, reviewed my music, and then I headed off  to my guitar lesson. I am making some very gradual progress there too.

After we finally got back to the house I aimed straight at the couch. I was exhausted.  I turned on The Biggest Looser ... I needed inspiration to just get back up off the couch again.

Tomorrow is aquatic therapy at 9 am and computer from 1 to 4 pm. 

Wish me luck.



Clipart from Clipartheaven.com

Vocational Testing - Results Meeting

I met with the guy that did my aptitude testing, along with my vocational rehab counselor, to discuss the results of all that testing I did.

The testing was not as helpful in narrowing down my interests and possible work options as we had hoped. It was still a valuable experience. Basically it was clear that I had trouble with endurance and that environmental things like lighting and sound had a major impact on how well I was able to work.

A very positive thing to me was that, all things considered, I actually scored phenomenally well on the intellectual tasks. The things that should have taken one day of testing took me much much longer to complete but given enough time I did just fine. The next objective will be to work my way up to part-time employment in some type of job that I might find satisfying. I am not looking for a job with a huge income but I do need to wake up and have some purpose in my day with somewhere to go. Sitting alone at home is not good for me.

I must tell you that I was originally really scared that all my cognitive and intellectual issues were going to be permanent.  

 I was going to be stuck with a lot of glitches, particularly in math and anything involving spatial orientation, and that those  memory issues would prevent me from ever learning anything new. This testing showed that I can do almost anything, but now I do it slower and it takes a lot of my energy.

Like anything where you don't have baseline tests, this process simply gives a snapshot of where you are in that moment. It doesn't reflect where you were and what you have lost or where you will be in the future but it does give you somewhere to start.
An example would be that the tests showed that I have some issues with manual dexterity so that knocked out certain categories of jobs. It doesn't show all the years of playing piano or rapid typing when I considered myself to have really good manual dexterity.  Part of my job depended on good hand-eye coordination. It doesn't show the months of trying  to hang onto an object and move it from one spot to another or trying to even remembering that I have a left hand that I should try to use.

My counselor and I talked about what to do next. I am going to start with a 6 week computer course at the Society for Manitobans with Disabilities (SMD). It starts at the beginning of January and will go every afternoon for 3 hours. There is no question that I have some computer skills but I am mainly a MAC user. This will get me some experience with a variety of Microsoft programs and give me documentation that I have  computer experience. The other big objective is to try and build up my stamina with time.  The hope is that, like so many other issues, I can gradually learn to cope with the challenges ahead.

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.

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/

What Next?

Today was my first meeting with my new Vocational Rehabilitation counselor and it went really well. I applied for this government funded program almost 6 months ago and I got the final confirmation that I was in the program about three weeks ago.

 I spent about 2 hours with J.  and we reviewed the program and talked about my expectations and hopes. We talked about possible physical and cognitive limitations in a work place. We talked about my previous work history. It was a very soft, gentle meeting but it was intense at the same time. He explained to me that it really isn't a program as such with regular meetings, but it is a service that will help me prepare to re-enter the work force.


The short story is that I have not worked for a long time and I have no work references left. I am also vary aware that I won't be going back to the kind of jobs I had before. My last job was as a microbiology lab technician and teaching assistant for the infectious disease department of our Medical College. I also worked as a coordinator for a research program about genetic predictive testing for people with Huntingtons Disease. Eleven years ago I quit my jobs when my work hours were reduced.  At that time my father was hospitalized with heart disease and needed a lot of my attention until he passed away a year later.

 I was ready for a career change so I  started an evening college program in Web Design and Development. I only had two more courses required when I got sick. I tried to go back and take a Photoshop class only 3 months after I got sick and it was a huge mistake. I knew my hand wasn't working, but I did not understand at that point that I was suffering from a bunch of cognitive problems. I  was "encouraged" to quit and work on recovery and I have not been back to college since.

My new counselor covered the wide range of options open to me and told me that he wants to put me in a program that will be a 5 day vocational assessment of my skills, experience and interests that will also evaluate my endurance for a work day.  The assessment will be about 6 weeks from now and after that we will meet again to develop an "action plan" for me.

I could be assisted with going back to school for retraining or I could get to try out different jobs and get references through work placements. They will also help me with specific short term trainings, resumes and other work readiness skills. One very real possibility would be to start with a computer training program that they offer at their facility.  It would be for 6 weeks with about 8 other people with disabilities. That would be an easy way back into taking courses and give me something current that could be put on a resume.
He assured me that I can back out of the whole program at any time and that if I try something that is not working out we can switch and try something different.  It is all about me finding new directions for my life and it needs to work for me.

I have no idea where this program might lead, but I am very excited to find out.

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!

Red Rubber Ball ---Physiotherapy

I promised to try and share a bit more about my various physiotherapy and exercise efforts and it has taken me a while to get  it written down. It is hard to explain without good pictures or video so I am sorry if I am less than clear and a little long winded. (grin)

I thought I would just start by describing yesterday's physiotherapy appointment at the hospital rehab department and save the "at home" set of exercises for another post.

My physiotherapy is supposed to be working on my 3 "S"s;  Stability, Strength and Stamina. The idea is that I should not loose my balance and fall as frequently, but that if I do I will have enough strength to right myself. I am also exhausted most of the time and we want my physical endurance to improve.

Tony, my therapist, does most of the exercises along with me. He says it is good for him to get a workout too, but a lot of it is that I still can't seem to exercise and count at the same time or keep any kind of a pace on my own, but I do a pretty good job of mirroring his movements. I also have trouble with movement, lights and sound throwing my balance so watching others movement in a controlled way is good training. He occasionally has a radio on or alters the lights and  it is a source of great irritation to me, but it is all in the direction of acclimating to these stresses.

My therapist, as usual, had me start warming up by walking on a treadmill. It has only been a couple of months that I have been able to even stand upright on the darn thing because of my balance problems.

I  have had a lot of severe pain and problems with my right (good) hip as a result of my bad gait.  I also have physical damage in my left knee as well as the neuro caused problems. Tony wants me to work on my walking skills with the treadmill because there is a hand rail on both sides and I even out my stance that way. When I use my cane I lean heavily to the side and when I am using a walker I tend to lean forward too much. I can walk more upright and I self correct better on the treadmill. The other odd feature is that I can hear my left foot when it drags against the tread of the base and I can respond by picking up my foot when I hear the noise clue.

The next set of exercises was over to the parallel bars where he had me do some mild squats, again watching that I pay attention to keeping upright and my back straighter as I move. This has at least two purposes. One is to work on building up the muscles to support my weak left knee and ankle, and the second is that that kind of up and down motion triggers nasty nausea and vertigo.

Next we moved on to the double width plinth (exercise bed).
Lie on my tummy and do leg lifts going backward about 10 X per leg and do two sets. My right leg lifts high and  left leg really struggles to do anything much in that direction.
Lie on each side, with the lower leg slightly bent and lift upper leg toward the ceiling.
Lie on my back and basically pull my bent leg across in front of me in order to stretch the hip. Repeat with the other side.

The Exercise Ball is more my idea of a fun time.  I even have one at our lake cottage.  (yes I have a blog about our lake too)
I faced my therapist who was sitting on a different ball and we started rolling the balls in little circles under us. (side to side version of nausea) Next we raised one arm and lowered it, raised the other arm and lowered it. It got trickier as I tried to raise one foot at a time off the ground and I managed not to fall off the ball.  Interestingly the hard part is not lifting the weak left foot -- it is raising the right foot and trying to use the left foot on the ground for stability. Next we tried lifting a leg and straightening the knee so the foot goes out in front. Advanced moves would include lifting an arm and the opposite leg at the same time and an even more advanced goal eventually will be the same side arm and leg together.

Once again we moved on to the plinth and I laid down with the ball at my feet. I got to take it easy for a minute and wait for the world to stop spinning.  Next he had me put my legs up on the ball and I did some bridges. "Pull tight the abdomen and lift your behind off the bed while pushing the legs down into the ball to balance!".  My legs and body fell off the ball sideways and we tried again and again.

The hour long session was over and I had really earned the cup of water Tony was handing me.
I went to get myself a second cup and I tried to hold the cup with my left hand while I pulled the water cooler lever with my right.  The cup went flying and I had water all over the floor and myself. Tony got down and moped it all up while assuring me that things like that happen all the time.

I was tired and I started having major speech issues as I usually do when I get too stressed, excited or exhausted.  I needed to sit in the hospital waiting room and rest for a long time before I could be understood well enough to call a cab to take me home.

I went home and napped.

Red Rubber Ball 

is written by Paul Simon and was recorded by a group called Cyrcle.

The lyrics that run through my head when I am "playing" with that exercise ball are:

And I think it's gonna be alright
Yeah, the worst is over now
The mornin' sun is shinin' like a red rubber ball

The story's in the past with nothin' to recall
I've got my life to live and I don't need you at all
The roller-coaster ride we took is nearly at an end
I bought my ticket with my tears, that's all I'm gonna spend

And I think it's gonna be alright
Yeah, the worst is over now
The mornin' sun is shinin' like a red rubber ball

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.

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