Physiotherapy for Hip Replacement

I went to an assessment for Physiotherapy at the Reh-Fit Center in Winnipeg last week. It was a good experience and I will be going for my first group session on Tuesday. She took a thorough history and is aware that I do have asthma,  high blood pressure issues and that I do not have equal strength on both sides. I have a bit of a wonky gait from "before" but apparently everyone with severe enough issues to need a joint replacement has gait issues, so that is something else that will automatically be addressed! Yipee😊! She checked my incision which is not fully healed and said we will continue to keep an eye on it too. She sent me home with a new and improved list of exercises.

About a year ago the government started doing an overhaul of health care services. One of the cuts was the post-hip and knee surgery outpatient aftercare. The departments were closed. The physio departments remained in the hospitals for inpatient care but staff layoffs occurred.

Since that time the health authority has continued to support the pre-hab clinic. They are giving education prior to surgery to have people as ready as possible for surgery and have the best outcomes. I will post a link at the bottom of this post for more information about the hip/ knee clinic. They have a lot of very good videos about joint replacement but I would draw your attention to a video of the exercises they recommend doing during for the time you are waiting for surgery. I think it would have benefited me to have started them years ago!

http://www.wrha.mb.ca/prog/hipknee/index.php



The physiotherapy and occupational therapists in the hospital assess if you are safe to leave for home before discharge and they review a few of the exercises that were to have been practiced before the surgery. You are to exercise at home but the set they give you is not looking at your specific needs nor does it show how to increase and changes the exercises as you grow stronger.
They give you a prescription for further private physiotherapy but then it is in your hands.

Many people do not have a insurance beyond that of our Canadian public health care system. I have very minimal work-related health insurance.  Physio for me is largely an out of pocket expense.

Many others have been in the same situations. I am youngish for a hip replacement and many seniors older than me live on limited incomes and will not have as much help as they need to get as full a recovery as possible.

The Reh-Fit center is very conveniently located about a mile from my home and is a lovely space with great resources and highly trained staff. I have known several people who have been referred there post heart attacks and they can't say enough good things about the services. It has a charitable status and a fantastic reputation but is at a higher cost than many other places around the city.

The Reh-Fit Centre is more than a fitness centre. We provide an environment to help individuals achieve and maintain health and wellness. We offer individual and group options for exercise, nutrition, and education through a team of certified health and fitness professionals. Expert guidance from professional personnel, innovative health enhancement programs, and the integration of medical, rehabilitative, and fitness services all are delivered in a clean, service-oriented environment.

                                                                                     http://www.reh-fit.com/about-us/

The Reh-Fit Centre has been offering post hip and knee replacement programming for members who are 6 months or more post surgery for a few years now. I noticed several months ago, after the withdrawal of our hospital-based rehab, that they were offering a knee replacement program for the immediate post-surgery period but not for hips. After I got home from the hospital an ad popped up in my social media feed about the new hip program so I called them up.

They launched the new program in mid-May!  They do not require membership and they enroll people between 1 and 2 weeks post surgery. I just plain old got lucky with this one! They do an initial assessment by a physiotherapist for about $70 (possibly covered by your private medical coverage) and then you can continue with weekly group sessions with a physiotherapist, a kinesiologist and possibly a volunteer. The groups can be up to 10 people, last an hour and all this for only $20 a visit.
After they feel you are no longer benefitting from this program they will encourage you toward other programs to help with your continued improvement.

We will see how this all goes tomorrow!

The Final Week of College

The end is in sight.

Painting by Edmond W. Greacen - Ethol with Roses

My course in therapeutic recreation is going to be over after 5 more work days.  In many ways it feels like we just got started and now it is over already. This has been such an exhausting  and difficult experience and in many ways it has been  positive and life affirming.

In a somewhat overwhelmed moment I told my husband I wasn't sure this has been worth it and that I might never actually get a job.

He said he knows it was worth it. My confidence and attitude is so much better.  My interest in learning is  back. My stamina and energy level really has increased since I have been pushing myself to the limit day after day. Physically I still have a lot of issues and I have more than a few emotional scars from the trauma of the past 6 years but I feel very different about myself right now. I feel a sense of value and direction in my life once again.

I don't know what will happen next.
Maybe I will get a job soon.
Maybe I need to get even more training somewhere.
Maybe I should go on a trip.

I think I might just  relax and take some time to smell the roses!

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. 

 

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.

Graduating from Therapy

Last Friday I had my final meeting at Easy Street, that fantastic hospital rehabilitation group that was overseeing my recovery. My Social Worker and my Dietitian were the only two therapists I have seen over the past year and I haven't seen either of them for the past 5 months. I have had a couple of phone-calls and many emails keeping in touch with my wonderful Social Worker.  She has kept me in the Easy Street Rehabilitation program while we have been sorting out all the issues related to the vocational rehabilitation program and my efforts to adjust to what is the new normal for my life.

Friday afternoon I went in for a last appointment with her before I was officially discharging from their program.  She assured me that she still wants emails letting her know how my life is going.

I have spent a lot of the time in Occupational Therapy learning to set realistic goals and hopefully these skills are now part of my everyday life!

Two years ago I wrote out a list of what I thought I needed to do before being discharged. My three daughters were all in university at the time and all taking about what courses need to be completed and what last assignments needed to be accomplished before they would graduate. I felt a need to make a "grad" list too. I planned to buy myself a particular piece of jewelry from a hospital fundraiser when I finished rehab, just like university graduates buy a Grad ring.  

I may not have completed all my self-appointed assignments before I was discharged, but I have confidence that I will eventually compete most of my self appointed tasks in some fashion or another. They won't be the first "late" assignments in my life.  (grin)

Some of these items may sound a bit silly, but for me they are all meaningful.

•               Shop independently (done)

•               Cook independently (done)

•               Bake pretty cakes again (done)

•               Read for fun and have it feel like fun  (done)

•               Get my driver's license back (done)

•               Make a photo book of the hospital garden

•               Play a nice song on the guitar

•               Take part in some kind of sport or athletic challenge

•               Get the hang of Photoshop 

•               Finish an afghan I started just before I got really sick

•               Get a job

It is really kind of scary and exciting all at the same time to be officially out of the rehabilitation phase of recovery.  I know that this really is a new chapter for me.

 I still have a lot to work on ... but I am ready to be stepping out on my own.

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.

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

Friday at a Hotel

This past weekend was the annual conference and training days for members of Manitoba's Girl Guides of Canada.  I debated a bit if I wanted to go, but what if I missed something exciting? I just needed to see what was going on with Guiding around our province, and it is also a great opportunity to meet up with Guiding friends that I do not see very often.

My 26 year old daughter was going too and we decided to rent a room and stay at the hotel. It gave me a place to rest, and leave our belongings. Running back and forth to the hotel would not have been a long distance and it sure would have been cheaper, but it would have added to the confusion and stress especially with neither of us driving. (I want my drivers license back so badly!) Besides the hotel has a pool and a hot tub! There was an exercise room but I never checked it out. I was tired enough from walking all around the hotel!


Alicia had 3 Rangers who wanted to attend the conference too, so we arranged to have 2 adjoining rooms. Rangers are  high school aged members who are involved in Girl Guides. I loved that the girls could attend and it was the right thing for them to be there, but being responsible for them definitely added to the exhaustion level of the weekend.

We checked in on Friday and then went to a banquet room that was set up with soft drinks, tea and coffee and snack foods. Our Guiding people set up several stations with information and displays and a variety of activities. The theme was "Thanks for the Memories".  You could make a picture frame, do a beaded key chain using letters that spell out the word memories and there was a card making station where you could use scrap booking supplies to make a nice card.
We had a wall where we to put up older photos (photocopies) about past Guiding friends or activities and it was a lot of fun to be seeing the pictures people brought to share. We have an award wining archive for Girl Guides of Manitoba and they shared some of their resources too.

There was a display about travel opportunities to the International Guiding Center in Mexico. I had a long talk with a couple of ladies who had been at "Our Cabana". I desperately want to go there and it is  high up on my "bucket list". They do one session where you can go to an amazing location where the Monarch Butterflies Migrate to in the winter and I think that would be so cool. There are monarchs coming out of their cocoons at our cottage and it would be so great to have an opportunity to follow them to their winter home. Getting to the location, according to these ladies is a pretty difficult hiking trail, but they assured me that it was not a long trail and there was lots of extra time so I could go slow. One more big reason for working hard at my physiotherapy! This prairie girl wants to go hiking uphill in Mexican rain forests! (grin) 

Many of my close Guiding friends are leaving in just a few days to go to Switzerland to tour and visit  the International Guiding Center there. If I had not had a stroke I am sure I would have been going with them. I have lost out on a lot of opportunities since I got sick and I have had to be content with hearing the stories of other travelers. It helps to plan for my own Guiding adventures in the coming years.

We also got to learn about the Scholarships and Bursaries available to youth members. I am hopefully that a couple of our girls will apply sometime in the future. There was a giant jar of candy where you could buy a ticket and guess the number of candies in the jar. They made a bit of money from the contest but mainly it was a way to draw attention to the scholarship opportunities we offer.

I will write about  Saturday and some of the interesting trainings and speakers in my next post.

Guitar Lessons Started Again

I am about to head off to my 4th Guitar lesson. It is actually going very well. My right hand is fully healed with only a thickened little scar area and still a little bit of stiffness in the top finger joint. My left had is miles ahead of where it was before my "good right" hand got so painful and icky. Basically I was forced to use my weaker left hand and now it functions pretty well, however it is a little stiff getting started and kind of achy.

The sensation in my hand still feels kind of off, but I can tell when I am touching something and I can tell hot from cold. Basically it kind of feels a like bit like a "pins and needles" sensation, especially compared to my other hand, but the weird sensation doesn't interfere with my activities at all.

Guitar lessons started off as a physiotherapy kind of plan to really challenge my hand to work, and it is indeed going to continue to help my coordination and speed improve. What is surprising to me is how hard I am finding it to read the music notes and to read music chords.... and well ....to basically remember what the teacher showed me 2 minutes before.

I should not be surprised that I can't read music fluently anymore. If I could initially forget what numbers were and struggle so hard to get back any sense of numeracy I should not be surprised that a different symbolic kind of communication has been lost as well.

So back to the beginning of reading yet again. The staff lines are e...g...b...d...f...

Cognitive therapy, here we go once again.

sighhhh

The Kings Speech

I really love this movie! Bob, Emily and I went to see it on the weekend and it was touching, very entertaining and often humorous. Really, it was fantastic. It is no wonder that it is up for so many awards.

The story, in case you somehow missed hearing the plot, is about King George IV of England, who had a speech impairment. He needed to show himself as someone to be trusted and he needed to inspire his people. He was limited both by his stutter and by his own view of his self worth.
The relationship he develops with a very unorthodox speech therapist is the basis of this outstanding movie.

I had serious problems with my ability to speak for a while after my stroke, and I still find that when I am tired, or stressed, my ability to communicate verbally becomes challenged. The frustration is overwhelming sometimes.

I usually find that if I use some tricks to calm down and then breath and talk slowly I will eventually get words out. If I still can't find the right word to spit out, I can usually think up a synonym or some words to describe the object -- even if I can't come up with the correct word for the object or person. One big problem is that so often people will decide what it is that I want to say and will complete my sentences for me rather than patiently waiting for me to "find my words". It is surprising how frequently they are dead wrong in the way they try to complete MY thoughts!

At one point the King yells at the therapist, Lionel "Listen to me! Listen to me!". Lionel replies "Why should I waste my time listening to you?" The King responds "Because I have a voice!" and Lionel responds " Yes, you do!".

I sat in the theater and oh how that scene resonated with me. To have a voice is so much more than the words coming from your mouth. It is to have an opinion, it is a freedom of self expression, it is a right to communicate and it is indeed self worth. To have a voice is to have the ability to make a difference in your life and in the world.

Yes, I too have a voice and I want to express my gratitude to those people who have patiently listened and given me the time and the opportunity to be heard.

I hope you get a chance to see this movie.

Invisible Disibilities

My daughter visited the disability services display booth at the university today and picked up a button for me.

It says....

All Disabilities are Equal
But Not all Disabilities are Visible.


I attached it to the backpack where I keep all of my occupational therapy and cognitive therapy notes and supplies.

Swimming Time

My friend and I have been going swimming on the past two Tuesdays.

There is an organization in the city that arranged for one of the city pools to be closed to the public between 5 pm and 8 pm on Tuesday and open for disabled people to come and swim for free along with assistants if needed!

When we went two weeks ago Shawn and I were not too sure what we were getting into but though the worse that could happen would be that we would sit and chat and wait for our rides to come to take us back home. It turned out that I was worrying for nothing. Everything was great. There were not very many people so that made me happy because a lot of noise and movement really bothers me. We changed in a large accessible family area with great accessible showers and bathrooms and then we proceeded to the pool area. There was no wheelchair lift for Shawn. Instead, she transferred to a water proof wheelchair since the pool has a ramp that goes straight into the water. It was so much fun to watch Shawn roll into the water all by herself and basically swim out of the chair! The water is pretty warm at about 83 degrees. We chatted with a couple of other ladies and swam around and this week played with pool noodles.

Shawn and I have the same physiotherapist and he was thrilled to find out that we are voluntarily getting out there and being active. It is so cold right now that it is hard to get out much and do any kind of walking or any other kind of exercise, but this was such a treat to be moving and playing. We are going to try and go every week and I think we have already convinced two more people to come with us next week.

Decisions, Decisions!

I have been working really hard on learning about decision making and problem solving. Basically I went overboard with the internet research and got overwhelmed again.

I saw my therapist again today and I tried to summarize what I learned and explain the steps in problem solving. I tried to explain a few helpful tools and techniques for making decisions. It did not go well! I had trouble remembering very much that was specific or actually remembering anything that would be helpful.

For next time I am supposed to stick with the KISS technique and "keep it simple". The goal is to come up a list of simple and memorable steps to follow when faced with making decisions. She explained that right now my decision making is not automatic like it once was. If I make a plan and I am consistent in following it, decision making will become easier and less stressful, it should become more automatic and decision making will become faster.

I will share a few of the informative links I found on this topic once I can decide which are worth sharing!


In the meantime this cheered me up.

My First Guitar Lesson

I had my very first guitar lesson yesterday. In fact it was my first music lesson in 35 years. I have taken my kids to many many lessons and I have paid attention but this time it was all for me. As a child I learned piano and I wasn't bad at it. Then there were all the years of accompaning my string playing kids so it is not like I haven't played an instrument in all this time.

After my stroke I tried to play the piano again and it has been an absolute failure. I even got the piano tuned hoping that would magically help. The fact is that my right and left hands are still not working at the same speed. My short term memory is also not very reliable so I keep needing to relearn any sections of the music. Another rather awful development with this stroke is that I became very sensitive to certain pitches and loud sounds, to certain lights and other strong stimuli; music has not been the soothing, joyful part of my life it once was. I have really missed turning to the comfort of my music but now my tolerance is slowly building back up again.

I am very fortunate that my left had is now working again. It is sluggish moving and to me it kind of feels like it is swollen. I have some trouble stretching it, I have a lack of strength and the other problem is that every once in a while my hand will clamp down in a death grip on objects I am holding when I least expect it. I need to use my other hand to peel my fingers off the object or poor persons hand.

The Therapy Mantra seems to be --- It you can move that body part .. do so.
If you would like more on that topic please see Peter Levine's very helpful blog-- The Stroke Recovery Blog.

My loss in ability on the piano is beyond frustrating and more than I can deal with right now. My right hand goes to fly on with the music and left hand is just out of sync with fingering.. a lot behind, and slowing down the tempo really doesn't seem to solve the issue.

Okay sooooo-

• I am thinking Guitar is new and different and no expectations from previous performance levels.

• I really like quiet classical guitar music.

• We have a nice guitar of my daughters around not being used.

• I want my hand to be moving easier

• I NEED to work on my memory skills.

I heard of a nice , very experienced teacher at a local music school and yesterday I went to meet him for my first lesson.

So far so good. Most of it was doable, but it will require a lot of work on my part to become more fluid when playing. I think the teacher was a little surprised when he asked me what I was looking for in music lessons and I told him "Mainly therapy". He was good with that part though, and seems like a very patient man. He was having trouble working on adjusting to the fact that he had to help me get my guitar packed and up the stairs. I couldn't manage to go up and down the stairs to his studio and carry the guitar at the same time.

It had never crossed my mind that the place would not be accessible. Maybe it is just as well I didn't realize about the stairs or I would not have given it a shot, but we solved the problems one way or another.

I think guitar with my new teacher Rob is going to work out.

Good Luck Vicki

I am loosing my physiotherapist.

I have been with Vicki for a very long time now and feel quite attached to her. I have come a long way with her help and she is one of few people who understand how much work I have put in and how far I have come. I understand I will be assigned a new physiotherapist soon. I guess we will start with the present and look to the future.

Vicki got a different job at the same hospital working with the outpatient program so she will not be working with the Easy Street clients anymore.

I think this is going to be a wise move for her and I wish her all the best.

Thanks for everything Vicki!

Me on Local Cable TV

Easy Street, The fantastic rehabilitation program I have been attending was featured in a local cable TV segment. They asked me to participate and be filmed doing a few background things with my physiotherapist. I wound up interviewed and it was a lot more than the couple of seconds on air that I expected.

I am not really very comfortable about being that public with my problems, but I am writing on the blog too so I should try to adjust. I really do think the world of this wonderful and innovative, multidisciplinary rehab program and want to support it anyway I can.

The link below requires Windows Media Player 7.1 or higher to view it.

EASY STREET PROGRAM AT THE MISERICORDIA HOSPITAL

Summer Therapy Group: Session 6 - Dreaming about my Goals

The Last Session.

It is hard to believe it is over already.

The therapist invited the head of the rehab programs to meet with us and to hear our views. It was a good thing. Unfortunately only half our group were there and our student volunteer was also gone already so it was just the 2 of us clients sharing our opinions but I certainly feel like our opinions were valued.

The original plan had been to go down to the river and release a few slips of papers with our worries, but it was crummy weather outside so we just staying in our room and sunk the papers in a bowl of water but that is not quite the same impact.

We took a piece of paper and we were supposed to make a list of our goals. Ever the over-achiever, I struggled with organizing the goals, and deciding what should be included and overshot with producing a time line while the poor other guy sat and waited for me to get done.

The therapist asked us each to pick one specific goal that we are willing to work on in the immediate future.

Surprise surprise, even to myself, I picked that I want to learn guitar!

Now what is the rational behind this?

• I like guitar music.

• We have Emily's beautiful guitar and no one is using it.

• I tried piano and that had two problems. First, I really found it upsetting that I couldn't play like I used to and I also found my two hands were fingering at different speeds. A guitar will be new to me so no sense of what used to be and the hands are doing very different physical tasks.

• The guitar might be great physical therapy for my functioning but weak and slower moving left hand

• Working with the music should be a doable challenge to work on my poor short memory too

• Music, for me, used to be like a form of meditation and very soothing, or it could be a way of venting emotions and feelings. Both would feel good about now!
  

Summer Therapy Group: Session 5 - Strengths and Stressors

The paper hat in the picture was to reflect challenges we face and ways of dealing with the challenges. Many of the challenges we each came up with were also relevant to others in the group. I wish others were not also affected but at the same time it is good to know you are not alone in your struggles.

We also brought in objects that gave us positive feelings.

I brought in this willow tree figurine given to me by one of my daughters to encourage me and cheer me when I was starting to give up of hope. The figure is called Happiness.

The artist and creator of the Willow Tree ornaments, Susan Lordi writes:

Happiness

FREE to sing, laugh, dance... create!

I hope this piece is very open to viewer interpretation. For me, it is the pure joy that comes from creating — in all of its forms. A side note … I love bluebirds.

I want to enjoy and make music again, I want laugh and move easily, and I want to be creative once again.. and I am working on it.

Summer Therapy Group: Session 4 - Feelings about Changes

It was a small group today, but we had very good conversations.

We were supposed to have written a short story about how we felt after our health changed. I procrastinated and procrastinated but once I started to write it flew out fast and angry. I wrote about how I though I was not going to survive, and about the pain my family was going through. I wrote about how much anger I felt toward the medical system over mistreatment I received. I had though that a lot of that anger was put behind me but once I opened the flood gates there was no stopping me spewing pain and anger all over the paper. When we were discussing the activity I found I was willing to read it out loud to the others. Sharing my writing was a big step too.

Next we did a collage using pictures from magazines that showed our journey. I really enjoyed doing it and took a long time and worked on a lot of details. I found that as I moved from one side of the page to the other I portrayed a real sense of empowerment and a process where I was getting control of my life again and enjoying the company and support of others. I was slowly finding joy as I looked over the past two years. If I am a caterpillar it is taking a very time to to turn into a butterfly.

Anger and joy in one afternoon is exhausting.