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.
I had a very good time on our vacation in Hawaii, but I must admit I don't feel rested----- I feel exhausted. I need to take it easier when I go on these adventures.
I strained my back on our trip home but fortunately my back is already getting better. I think it was just helping with my carry-on luggage or perhaps it was just sitting in the plane that long but I am sure not ready to jump straight into Christmas decorating and shopping. Life does go on and I do need to get back to all of my regular activities.
I had a guitar lesson last Tuesday --- after 3 weeks without practice. Wow it was bad. (My teacher is the most patient person you ever met!) I guess two little ukulele lessons don't make up for weeks without touching the guitar. I have been getting better at the guitar and the difference it had made to my weak hand is phenomenal, but it does take me a long time to get the hang of any of the mental or physical skills involved in playing. It seems that I forget what I learn much faster than the amount of time it takes me to learn it in the first place. Practice, practice, practice. Maybe I should start practicing the ukulele too.
Winnipeggers usually wind up talking about the weather, so maybe that is a good fall back topic to ease me back into the blogging world. When we left it was pretty darn cool in Manitoba, but we didn't have any snow on the ground. We flew off to Hawaii and despite the fact that it was 80 degrees and warm at night I wanted to carry my jacket around like a security blanket. By the end of the two weeks I was just starting to trust the easy weather conditions and then it was time to come home.
People .. it is darn cold here and it is just going to get colder!
There isn't a lot of deep snow, but the sidewalks are icy and slippery and I need to have a metal spike gripper thing on the bottom of my cane to keep me from slipping. My winter parka from last year is having zipper problems.
I have switched from pretty glasses of fruity beverages decorated with pineapple slices and fresh flowers to mugs of tea or hot cocoa decorated with Santa and reindeer.
I must admit that I do sleep better curled up in my own bed under 2 fluffy quilts.
Bob and I, along and our adult daughters, are going on a trip to Hawaii tomorrow morning! I am soooooo excited. We have been planning this for months and I can hardly believe the trip is finally here. The girls are only staying a few days for our tropical family vacation and then Bob and I will be staying for another week on our own little second honeymoon.
Our daughter found us a good deal and booked us into a couple of different exciting locations!
I must admit that I have had a lot of anxiety about this trip and a lot of trouble getting organized, but now it is too late for me to do anything different. No more lists. No more shopping, no more planning how to pack or planning where to stay. All I can do is get on that plane.
I went back and forth about just how I was going to manage physically on this trip. I have not been using the walker for months now, but I also have not been doing as much walking or challenging moving as I was a year ago. I am finding that my new knee brace is a really big help but I don't think it will be enough. The knee brace makes my knee feel a lot better, but when I wear it I find that my ankle gives out much faster for some reason.
My family will do all they can to help me but I still can't imagine how I will carry my luggage, stand in lines and still do all that I want to do and only hang on to my cane. We decided that I am going to take the walker, and the knee brace, and the ankle brace and yes the cane!
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.
I really miss driving. I checked off the box that said "stroke" on my drivers license renewal and not long after I got a letter telling me to surrender my license. In a somewhat confused way I knew I wasn't well enough to be driving but it was such a blow to actually hand my license over. Being a driver was part of my identity. There I was dealing with yet another type of loss to my mobility. I hate always asking my daughters or husband to drive me places. Bob comes home tired after a work day and I am waiting like a puppy at the window waiting to be taken for a ride somewhere. I am really not steady enough to take the bus easily or safely, and I can only walk so far but I want to go places by myself. I want to be able to run to the store to pick up milk!
I have had no end of paperwork snags trying to get my license back. Months after I had handed in my license I received a letter that was a final warning to hand in my license or else. That was an indicator of how things were going to go between me and MPI, the insurance and licensing board.
Eventually I felt well enough to try and get my license and freedom back. I got a health report form to be filled in by my doctor. My Family Practice doctor filled it in and had no problem with me driving, but he did note in the letter that I had seen a neurologist. The next letter from MPI was informing me that the Licensing Board would now be requiring the report from my neurologist to be forwarded by my doctor. Okay -- done.
The following letter indicated that the report from my neurologist was insufficient and they sent me a form for a full report to be filled out by my neurologist. The only problem was that neurologist, who had only seen me the one time, was now living in another country so it required another set of letters to get MPI to let me be seen by a different neurologist.
We have a huge shortage of specialists in the province. I am basically stable and not medically considered in need of a Neurologist, so my doctor tried and tried to find one that would see me for the sole purpose of filling out a form.
I finally had my appointment with a new neurologist this past week. He checked me out carefully and seriously questioned if I drove a standard, how I would do with shoulder checking, how dizzy I got with turning my head and so on. It went reasonably well and the nice man said he didn't see any reason why I shouldn't drive now. He promised to send the forms in immediately and he said that if I did not hear from MPI in the next week I should call them and inquire about the status of my file.
I will probably need to do an "in car test" with their occupational therapist before they will consider giving me a license. It is possible that they will require me to start right back at a beginners license because it has been such a long time.
I have been waiting 13 months to see the new neurologist.
I have been waiting a very long time for the opportunity to try and prove my fitness.
It has been a while since I posted a music video. I find that lyrics or a melody sometimes run through my mind and they can help me in sorting out my feelings. Music affects my attitude. I like to try to "sing" positive and it helps me to think positive.
I love this song. I heard it for the first time in the background of The Biggest Looser this week and I just had to hunt down what the music was. The song is called "Impossible" by Kate Earl.
We have recently been talking about not blithely accepting predictions about limitations on recovery. I think this song is right on topic. This song also addresses the role of support in our lives. Our loved ones and friends, medical workers and therapists, and even wonderful online friends can encourage and support us with their actions, words and prayers.
Yesterday was the last day of testing and I did finish off the last two sections of the CAAT test. One part was a written mechanical aptitude and problem solving test and that did not go well for me. Pulley? Rods? Which is spinning faster? I called my mechanic husband during the break and whined to him about my lack of skill and he said isn't it good that I have him and I don't actually have to do that kind of thing. Pheww. Perspective is helpful.
After lunch I tried doing the Science section. I was worried that I would blow it and that would have been devastating to me. I have spent my life as a Science nerd. Happiness is the Discovery Channel. It turns out that it was a snap and I had nothing to worry about. Frustrated little ol' me couldn't stop from making editorial notes in places where questions were just plain written wrong. Common knowledge is not always the same as correct knowledge. The guy asked what I meant by my notes in the margin, and I played science teacher and explained to him exactly what was flawed about several of the questions. It helped a little bit with my poor damaged self-esteem.
I then did some directed internet research. My tester had me look into jobs that might be of interest and I went through a big book listing possible careers and I noted ones that I might like. The objective was not to worry too much about how realistic it would be considering my health and abilities, but more to get some direction for discussion and possible careers I could be happy doing.
It kind of surprised me to find that various jobs I did have in the past still came up on my list. It is nice to realize that I don't regret my past choices.
At the end of the day I was given some of the results related to the interest surveys from the first day. Two main profile interest areas came up in one of the tests. One was "Social" where examples of occupations are family counseling, museum interpreter, community and social services, and recreation consultant would be examples in that category. "Directive" was the other main category with jobs like dietician, art conservator, flim editor archivist and school principal.
My interests, according to a different test, would include life science (biologist, biochemist, physiologist), social science (criminologist, economist social psychologist), followed by teaching. The surprise add in was technical writer ( scientific writer, handbook writer, legal secretary, service publication writer) but that was without looking at how I scored on the English language tests!
I really don't yet know right now what good this will do me. I will be meeting with my vocational counselor in a couple weeks where we will go over the abilities part of the test and look at this interest and aptitude part a little further. Then we will make a plan for my future!
I went home and basically collapsed. I only woke up to take some Advil and then I went back to sleep for most of the night. I am still not at all recovered.
I didn't go into this thinking the week would be easy, but I sure wasn't prepared for how physically demanding and emotionally challenging it turned out to be.
I was allowed a little more time with that math problem solving from yesterday but basically I still took forever and I think I got more questions wrong than right. I was never fantastic at Math but it is unbelievably difficult now. One thing I did was write in the exam book! Gasp! I still needed to write on the bubble sheet, but at least this way I could double check that I was still on the correct line of the test. I kept doing stupid things like figuring out the answer and then I would find myself looking for the numeral of the question as if it was one of the multiple choice answers. That would be my short term memory issue rearing it's ugly head.
The tester got me to do a memory test. He had me look at a page with 20 pictures on it for a period of time and then I was supposed to recall what the pictures were. I have had lots of practice with this style of test in OT. This time I think I recalled 14 items and I told him I have worked on this a lot and have found coping techniques. He said that he could tell I was using some techniques. Yup it shows.
Today there was also a hands-on component to the testing. I think the idea is to check fine motor control and hand eye coordination. I do not think I have a future as a welder. My mechanic husband would have probably split his sides laughing if he could have seem me try to string electrical wires through little holes. Worse than showing limited aptitude on those skills was that I found it impossible to work on the paper and pencil tasks that I was personally more concerned with while others were taking their turns banging on the test equipment. Even the sound of the instructor talking in the background was enough to throw me off track.
We also had some tasks sorting cards into different orders. I think I was pretty accurate with those tasks, but maybe not as fast as would be needed for a career as a filing clerk.
Another activity was a spelling test. It was the old fashioned version where the teacher says the word and you write it on a piece of paper. I had an overwhelming urge to get up in the middle and go sharpen my pencil but I resisted.
Then we went on to a language arts test. We had to dentify punctuation, capitalization and grammer errors for one section followed by organizing sentences into the correct order in a paragraph.
Oh oh. You writers and editors out there show great restraint when reading blogs like mine!
A highlight of the day was lunch with two of the other ladies. We talked about how much difference it made to be having a breakfast with protein before doing all this testing. We talked a bit about our hopes for new jobs. We also talked about how nice it is to have some structure in the day. You spend your working days looking forward to vacation time and retirement, but the reality is that it is good to have somewhere you are expected to be and something worthwhile to do.
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.
Our boat propeller has taken a beating over the summer.
We have a brand new one on order.
~~~~~~~~~~~~~
OOPPPS!!
~~~~~~~~~~~~~
I was aiming at putting this post on my lake blog but got myself confused and uploaded it to the wrong blog! Well I hope you enjoy my pretty photograph. I just love the grays of the water.
I am having a tired, mistake making kind of day. I have been too busy lately. I do that. I have trouble finding my limits and gadging my energy level until it is too late. I am lasting through longer days, but I find the next day I am tired and cranky and make a lot of mistakes and drop a lot of things.
I had swimming therapy group at 9:00 this morning and I wasn't at my best there either; I lost my balance more than once. One time I wound up with the aquatic therapist grabbing me from under the water to try and get me upright. She told me "It is not wise to keep smiling when you are going under.. close your mouth!".
I think I will go have a nap before I try and do anything more on the computer today.
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.
As usual, I was a bit over optimistic with my plans, but it was still a great weekend at the Lake. The weather was absolutely perfect and having time alone with my husband was very very nice.
My favorite place to be.
We got the laminate flooring down on the screen porch and the difference is unbelievable. We have had an unfinished wood board surface and it was starting to rot a bit around the edges. We have gone back and forth about what to do about that floor for 25 years now .. we think it is not worth installing good wood planking but we are still a little worried that laminate won't hold up to weather exposure.
The way this worked was I bent over, picked up a board, waited until I stopped feeling dizzy and then hauled in one laminate plank at a time from the other room. My husband fitted them together, marked and cut them and then I helped him guide the far end of the board into the right spot for a final click into place. I also sat on a chair a lot, supervised, and admired Bob's hard work. Bob wouldn't let me play with the power tools-- this time.
The dock partially cleaned.
The next big job was the dock. I actually like power washing. You stand there and the water pressure does most of the work and it is so satisfying to see the color of the wood changing. We took turns cleaning but the work load was a little more even with this project. Mainly I held the sprayer with my strong hand and waved it around and I would switch to my left when my right got tired ---- and 2 minutes later think that was a bad idea when the water started spaying around randomly in the air and I would switch hands back again. We got the first third of the dock done. I hope the nice weather lasts long enough for me to get the rest of the dock finished. We need to get some sealer/preservative on the wood and repair some weak spots in the planking.
Home exercise was planned.. to heck with that silly idea! I had done lots of real life exercise and sore enough to prove it! I did do my leg and hip stretches because they actually help lessen my pain.
Guitar.. nope ..... I didn't even take it out of it's case...
My Christmas crafting is slow and gradual and satisfying. Next week it will involve a hot glue gun.
I wish I could show you a picture of the big pile of branches I clipped for the fire place (no axe or chainsaws involved).. but we burned them as we cuddled by the fire each night. It is now Fall in Manitoba and the nights are getting very chilly.
My dock, ladder and old blue boat.
Last on my list was the swimming. Well, I did climb down my new dock ladder and I got on to the rock at the base in waist deep water with Bob watching me for safety. I chickened out of actually swimming, partly because it was freaking cold, and partly because I didn't want to go swimming by myself. Bob apparently figured out the cold part long before me and wouldn't get on a bathing suit. Getting out of the lake was a LOT harder than getting in and involved some panicking on my part. It is very obvious that I still need to work on getting a whole lot more strength in my weak left arm and hand. I don't think I will try this again any time soon.
I am spending a fair bit of time at the lake right now. Cottage life is a real gauge for me of how much I am improving. You tend to not see changes when you are dealing with your day to day life, but at the cottage I am comparing my activities to what they were last summer. I told a lady at my Stroke Recovery Support Meeting that I was going to the lake and her response was something of a harsh .. "nice for you just getting to relax at the lake.". It couldn't be farther from the truth. I don't want to spend my days just relaxing, I want to cook fun meals, I want to chop wood for the fireplace. I want to go swimming, hiking and boating and I want to be helping with the work of repairing and maintaining the cottage. I work very hard to towards those goals and I participate as much as I am able.
My cottage is a little primitive to say the least, but it is the place in the world that makes me the happiest. It is the only cottage on a 5 acre island, and is run on solar energy with a propane stove and BBQ and no fridge. We have had the place for 28 years now and mainly we putter with it making tiny changes each summer. Now we are at the point where we are starting to redo the repairs we made when we first bought the place. The walls are creaking, the paint outside is peeling, the floor is slanting a little, and dock boards need replacing.
Last year I literally had trouble walking over the floor because of a little slant. This year I only notice it when I am overtired. The 5 steps to get in the cottage are a bit rickety and steep but this year, as long as I am holding the rail I do okay. Midnight trips to the outhouse involved waking up my husband to get me down the back stairs and over a few feet of rocky terrain, This year we understand my problems so much better. We have changed the step and added a whole lot of solar lighting and I can cope on my own much to my families "night time relief".
My other huge issue has been gettingin and out of the boat at the docks. We have just resurfaced the mainland dock and there is a dock pole in the just the right spot to hang onto. The dock still needs a bit of leveling but having an even, secure surface is just wonderful! Both docks are solid docks, not floating, and once I get up on it I stop and take a minute to stop feeling dizzy from the upward move. Getting in and out of the dock is not the simple matter of hopping over the side that it once was and now I need a hand getting out, but this year it doesn't involve 2 peoples help. Last year we needed one person in the boat with me acting as a counter weight and supporting my hip and someone on the dock pulling me upward. It usually wound up with me crying and wanting to vomit.
Next weekend I am going to try swimming in the lake again. Last year I got in the water only one time with great difficulty and once I was in the water I found myself unable to tolerate the movements of tiny little waves against my body.
A couple days ago my husband installed a swimming pool ladder onto the end of our dock. When he put it in we found it actually touched a flat rock at the bottom so when I climb down I will only be in at thigh deep on about a 2 foot wide rock platform. All the rest of the way along the dock is deep enough to dive off of. I think the ladder will make all the difference in my being able to get in and out of the water. When I was doing pool therapy last year my physiotherapist and the aquatic therapist felt it was a safety issue for me so we put a lot of energy into figuring out how to use a ladder and get in and out of the pool safely using a ladder and not just ramps or steps.
Here is my to do list for next weekend:
cut up some more kindling with my clippers
go swimming using my new ladder
help lay laminate flooring on my screen porch
do my at home physio exercises
practice Guitar. (I have hardly practiced all summer)
play a card game (think cognitive therapy-- still very hard for me and not a lot of fun)
work a bit on a little craft for Christmas
If time and weather allows- help husband paint small bedroom OR power wash our huge dock
Linda-- Fall 2010
And yes, I will still find time to lounge in my adirondack chair on the dock while reading a magazine, and we will sit on our screen porch and enjoy a relaxing candle lit dinner while watching the sun set.
I got sick when I was only a few chapters into a newly published book written by my close friend. It was over two years before I was able to finish reading it.
I found that I could not read for more than a few minutes at a time. I was able to read words and I did know what they meant, but by the time I got through a paragraph I had no idea what I had just read. I did not understand what was going on in the book or with myself. I developed massive headaches anytime I tried to read.
Occupational therapy eventually explained a lot of my problems. My damaged short term memory made it hard to recall what I had just read. I needed to read and reread material and I often had to draw a few pictures and use a highlighter in order to follow written material. I was not reading items to the left of the page--- I wasn't even noticing that they existed. When I had a book opened up I tended to read only the page on the right and not the one on the left. I also couldn't get my eyes to track from the end of one line to the beginning of the next line.
The massive headaches were at least partly related to the fact that both eyes were not tracking at the same pace. My left eye, just like the rest of my left side, was weaker than the right and the difference really showed when I was trying to do any finer eye movement.
While all this was going on I discovered that reading was far easier on the computer than reading printed text. Without even realizing what I was doing I developed a few coping strategies. I had the size of the print on my computer cranked right up. I changed the kerning on documents whenever I could. Computer articles are short compared to my books so I could manage to complete an article before my eye started to twitch and my face go into spasms. I learned to locate my lap top computer off to my right side and that seemed to help with the left side neglect.
My occupational therapist worked with me to find accommodations and exercises. I borrowed bigger print books or used my photocopier to blow up smaller documents. A ruler placed under each line I was reading helped me track across the page and helped me keep track of where I was on the page. I put a thin red strip of paper, or a bright colored elastic band stretched over the book at the far left margin in order to draw my eye over to a "starting point". I also worked on reading 5 or 6 times a day. Initially I could read for no more than 5 minutes at a time, and week by week we were increasing the time by a minute or so. Just like any other exercise, I slowly worked on building the muscle control of my eye back up again.
Last year my friend Sue published a sequel to her first book of young adult fiction. I still was not through the first one. I so much wanted to read the books and been able to discuss them with her and our friends. This past year I did read them both. I could enjoy the experience now instead of feeling mainly frustration and pain. Thank-you Susan for your understanding and for sharing all your talent!
In the past three years I have read less than I would have in a month before that. I used my limited reading ability to find books to help and support me and I have read very little fiction for fun. This past weekend I decided to read a newer Debbie Macomber romance novel while hanging out at the lake. No health and wellness related material for me for one weekend! Once I got into the book I found out that the heroine was a lady with a severe leg injury. She works on learning to dance and ride in a paddle boat as well as work on self esteem issues related to being a disabled woman who is beginning a new relationship. So much for not thinking about disabilities. I just had to laugh.
Below are my reviews of most of the printed books I have read in the past three years. Images are intended to give clarity and no copyright infringement is intended.
A Change of Plans: Women's Stories of Hemorrhagic Stroke
Sharon Dale Stone
Sharon Stone is a Sociology professor, and stroke survivor herself. She interviewed 11 women about their experiences after having a hemorrhagic stroke. This book was an incredibly helpful first read for me. I sat and cried through a lot of it as I realized how many of my issues were part of a stroke and not something that was a personal weakness or my fault. It was inspiring to read how these women of different ages and backgrounds coped with the consequences of their disabilities.
My Stroke of Insight: A Brain Scientist's Personal Journey
Jill Bolte Taylor
Jill was a well known Brain Scientist who had a stroke. She seems to have had a remarkable recovery and has taken on a new perspective from the experience. I loved reading her detailed account of her stroke and recovery process and hearing about the support of her family and friends. I even loved her baseline biology lessons. I am not as sold on the overall right brained, left brained world view that emerges as the book progresses. Mainly I was inspired by how she has been able to recreate herself from her former role as a biologist to that of a successful author and speaker.
Always Looking Up: The Adventures of an Incurable Optimist
Michael J. Fox
Michael Fox was being interviewed on all the late night shows and I felt like I needed to read what he had to say. He really does a wonderful job with this autobiography as he shares a remarkable sense of optimism. It is not a passive "lets all think happy thoughts" version of positive thinking but rather a belief that positive things indeed can happen and life can be improved and he is motivated to take action to achieve such goals. I admire this very much. At one point he quotes the Lance Armstrong Foundations Mission statement: To inspire and empower cancer sufferers and their families under the motto 'unity is strength, knowledge is power and attitude is everything'.
Stronger after Stroke
Peter G. Levine
I started off by reading Pete's blog. I learned so much from the blog that I became interested in reading his book too. I wish I had been capable of reading this book earlier in my recovery. Pete has a lot of information about physical rehabilitation techniques that every stroke survivor should learn about and so should the people who care for them. Peter's blog and book have allowed me to gain a better understanding about stroke recovery and how it works, and a bonus is that knowledge has also helped me in my communication with my therapists. I am following many of Pete's suggestions in my efforts to maximize my recovery, and I am very glad to recommend this book to other Stroke Survivors.
Moonwalking with Einstein: The Art and Science of Remembering Everything
Joshua Foer
This book was just what I needed to read this winter and I was surprised to find it really entertaining. OT taught me lots of memory strategies and this was like the advanced course. Josh Foer is a science writer who attended the US Memory Championships as a reporter. The following year he competed and won the competition! In this book he reviews science literature on the topic of memory in a very approachable way and he interviews many interesting people to get a perspective about memory and how it works. I have tried to use what I learned from this book and I feel that it has been helpful to my everyday life.
The Shack: Where Tragedy Confronts Eternity
William P. Young
I read this book in the past month and it is pretty different from anything I have ever read. It is being praised by some church groups and condemned by others. I thought any book that was number one on the New York Times best sellers list for 70 weeks was worth a second glance. The book was actually good to read with lots of touches of humor despite the serious nature of the topic. I would say it is one approach to the question of why bad things happen in the world. Perhaps this in not a book for everyone, but I must admit I enjoyed the book and it gave me a few theological issues to think about. I was drawn to this book because I am a bit preoccupied with the topic of good things coming out of personal tragedies.
Withershins and Spirit Quest
Susan Rocan
Last, but not least, are my friend Susan's great books for young adults. They are time travel adventures that teach about the history of our area and touch on many current issues relevant to youth today. There are great realistic characters in a moving historical period. I look forward to her next novel!
I 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 thetreadmill 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.
TheExercise 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 issuesas 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 had such an incredibly liberating experience when I went sailing during the Independent Living Resource Center Camp a few weeks back. What an adrenaline rush! It has been a while since I was going at a fast speed like that and I felt like a turtle who got to borrow a set of wings. Basically, I loved it and I am going to get a few free lessons very soon.
Now, this is NOT an easy thing for someone with a balance disorder, but with issues like mine the whole idea is about challenging your system, often to the point of nausea, so that you gradually get accustomed to different movements. Sailing should be ideal therapy as you move with the wind and the water.
Unfortunately I don't have a picture of me sailing during the camp, but I did find a pretty good video explaining about disabled sailing. I will have to get someone to take a picture of me the next time I go!
"Greatness in not in where we are stand, but in what direction we are moving. We must sail sometimes with the wind, and sometimes against it - but sail we must. And not drift, nor lie at anchor." -Oliver Wendell Holmes
Check out this website for the Manitoba organization that supports sailing activities for people with disabilities. Able Sail Manitoba
They do the sailing out of a very interesting nature reserve and education space very near my home called Fort Whyte Alive, and here is their information about their Sailing Programs.
On Saturday morning my husband and I took our son, his wife and my three grandchildren strawberry picking in a town about an hour from our city. We choose what will probably be the hottest day this year to go sit in a sun drenched field.
I really had a very good time in spite of the temperature. We went last year and it was okay but the season was dry and it was a whole lot of picking to get even one pail and getting up and down was way too hard for me so I mainly took pictures. This year was different and the berries are amazing. It has been wet and warm in the flooding areas of Manitoba and the berries on this farm were bursting with juice.
This was the 8 month old baby's first time going "picking" and he got to taste his first strawberries ever straight off the plant. There was no stopping those grabbing little baby hands after that! Strawberries are Yummy!
Our two preschoolers were very excited and well behaved, but we were all getting overheated and I was getting exhausted and cranky fast in that kind of unusual heat.
This was the easiest picking I have ever done. I went about 6 feet out into the row and plopped down on the straw dropped my cane beside me between the rows and picked my basket full with only scooting along a bit twice. I kind of wanted to pick even more baskets, like my son was doing, but I for once I realized it wasn't worth pushing myself and getting overwhelmed.
We paid for the berries, put them into our cooler, got in the car and drove to a nearby air conditioned restaurant to have some lunch. The kids were still hungry in spite of having tummies full of berries!
Now I have to do something with the two overflowing large baskets of berries we picked and my son has 6 baskets to deal with.
My daughters want to goraspberrypicking very soon. The good news with that is you don't have to crawl on the ground and try and get back up again when you are picking raspberries. The bad news is I am not sure how long I can stand and pick, and I sure can't keep bending over to put them in a pail.
Any helpful hints? I would also love any suggestions for making low calorie jams.
Next time, I am taking a comfy lawn chair ... just in case.
Dean from Deans' Stroke Musings and I met in person last week. He was up in Manitoba for the Winnipeg Folk Festival and we arranged to actually get together. On Thursday, Dean came to The Stroke Recovery Association of Manitoba to meet up with me and our local group. I think he had quite the tour of Winnipeg before finding our office. I was really happy to introduce Dean to a few of my friends. He walked into the office and our staff person called out "Linda .. there is someone here to see you!" and I got so excited! We immediately had lots to talk about. It is funny to feel like you know someone when you have never met or even heard their voice before!
We decided to have breakfast on Friday and to continue our conversation. I was going to be back at Stroke Recovery early Friday morning for adapted Tai ji so we just met down the street from there at a nice breakfast place. We had a VERY long brunch but time really seemed to fly. A little longer and I think that between us we would have solved all the problems of stroke research and rehab today. We talked about blogging, camping, music and how to fit me for a kayak.
Dean, it was such a treat to meet you and have the chance to get to know each other! Only 12 more months until the next Folk Festival!
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.
The canoe and swimming dock and the group use facility in the background.
I read about this overnight event last year, but I really wasn't sure it was suitable for me. Beginner camping skills? Heck, I have as of this week completed 20 years as a Girl Guide leader and have the pins to prove it. I have taken endless training about camping and spent more nights camping with groups of kids that I like to think about. Why on earth would I need a beginners Guide to camping? At the same time I have been really missing camping over the past few years and I was looking for a a new way to get out there again.
I saw that they were having a day with an orientation to their summer programs so I went to it mainly because I wanted to learn about their picnic and outdoor community walk days. They had a pretty full house and when they discussed basic camping skills I felt like I had a lot to add on certain topics and thought that I might even be a bit of help at the camp. On the other hand I also realized that there is a lot I don't know about making camping accessible for myself or others. I think there might be interest in the future for SAM members (Stroke Recovery Association of Manitoba) to go camping and we regularly have special needs girls in Guiding that we take to camp.
After my recent camping adventure with Guiding I realized that, while I am doing very well with my recovery, I am still not able to carry my own weight at camp and I most certainly could not camp without a lot of support. What else could I learn about camping with a disability? I handed over the incredibly low fee of $25 and filled out the paperwork.
We had about 12 people camping who were "consumers", a few caregivers and a whole lot of staff. It turned out that this is a bit of a staff summer celebration too with some of the staff's family members camping as well.
Transportation was provided to the camp site that is just outside the city limits in a great educational nature reserve called Fort Whyte Alive.
When I got there I was shown where the "girls cabin" was. It is very nice with 5 bunk-beds and was heated and had electricity. There was a wheelchair ramp to get in and it was not that hard for the wheel chair users to maneuver around in there. The attached bathroom with a composting toilet was another matter in terms of accessibility, but the lodge space just a few yards away has an accessible toilet.
The fire-pit and central hub for the camp
Once I got my stuff dumped on my bunk I headed outside to sit around the fire pit and listen to a truly excellent guitar player. He played folk style songs for a hour without stopping. ( or peeking at music!)
One of the staffs little 10 year old boys told me that he is working on learning guitar and I told him me too! We agreed that by next year we will be able to play a song or two at the campfire! lol
The meals were good with opportunities to cook wieners over the fire or to roast marshmallows to make smore's.
I went sailing and absolutely loved it.. (balance issues aside-- it was still fun and I can't wait to go again). I rode around on an electric golf cart to get from place to place, toured the nature center and the little gift shop and I even hiked a little bit. I was hoping to canoeing in the evening but it began to rain and was just kind of cold and yuckky so I settled for staying on the deck and watching a few other brave people canoe.
Cabins in background and tent camping was also an option.
I talked to a lot of new people and even traded a few email addys with people that I hope to keep in touch with.
I found it very different to camp with this group compared to Girl Guides or Scouting. In Guiding the kids grow up getting different skills and there is an expectation for HOW things should be done. It is great to have our "Scouting Skills" but it is nice to see how the other side does it for a change. It was wonderful to be the participant for a change and not the person who has to be up worrying about broken tents or getting breakfast started. I am definitely going to try and go again next year.
This Camping Trip is for People with Disabilities:
• Who want to learn or improve their camping skills
• Who want to have a fun time and participate in activities
such as sailing, hiking, setting up a tent, cooking, camp
safety and fishing
• Who want to sleep lakefront in a tent or accessible cabin
• Who are able to follow the Independent Living Philosophy
and can direct their own care
(two days, one night) Location: Fort Whyte Alive Cost: $25
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.
