I am very, very busy with college. There was a massive charity event last week, a paper due yesterday, another major paper about group dynamics, a case study test tomorrow and a final exam about cognitive issues and therapeutic care on Friday. Then 2 weeks off! yippee!
I am in something like survival mode.
I found one question for the paper I handed in today thought provoking. (and remarkable hard to separate myself from my past reality in order to answer it for marks).
The topic was about the signs, stages and care of someone with Alzheimer's Disease or other dementias and the impact of the disorder on the family and individual.
How would you answer this final question ?
If you could not speak for yourself, what would you want the people caring for you to know about you? (three points)
There was an amazing post written in the past few days by Roia-- the Mindful Music Therapist. Roia talks about a nonverbal, autistic man that she works with who is showing that he is able to answer yes or no using word cards. She said it made her think about the song "I Wish I knew How It Would Feel to be Free".
Aside from trying to come to terms with the whole idea of actually communicating with me and having me understand him- overwhelming in and of itself for him, I think- there's the fact that it probably won't change his life in any appreciable way.
Sara, from Girl with a Cane, wrote in a related post that Roia's post moved her so deeply that she began to cry. Amy at My Cerebellar Stroke Recovery was inspired to share her experiences.
I was touched by this topic too.
Going back to college has been a real struggle for me I still have huge fatigue issues, I still loose my balance and sensory issues sometimes win out. I occasionally wonder of this is worth all the effort. Other times I know that this is the right place for me.
When we went to the nursing home last week I was asked to help a lady in a wheelchair get her coat on. She looked a bit panicked at a new person helping. She has aphasia and her main language is not English. She tried to explain that she could not move her right arm and that it needed to go in the jacket first. She said "Stroke" and was tearing up. I leaned my cane against the wall and reached to help with the coat. I looked her in her lovely eyes and said" Me too.". I touched her bad hand and said "Your stroke" and then I touched my left hand and leg and pointed at my cane and said " My side.". Her left hand reached out to me and pulled me toward her in a hug and she said .. "You Understand!". We were both tearing up at that point. She said "12: . I said "5 years.".
Yes I do understand .... so much more than her words.
Send "I Wish I Knew How It Would Feel To Be Free"
I wish I knew how
It would feel to be free
I wish that I could break
All the chains holding me
I wish I could say
All the things that I'd should say
Say 'em loud say 'em clear
For the whole round world to hear
I wish I could share
All the love that's in my heart
Remove all the bars
It keeps us apart
I wish you could know
What it means to be me
Then you'd see and agree
That every man should be free
I wish I could give
All I'm longin' to give
I wish I could live
Like I'm longin' to live
I wish I could do
All the things that I can do do
And though I?m way over due
I'd be starting a new
Well I wish I could be
Like a bird in the sky
How sweet it would be
If I found out I could fly
And I'd sore to the sun
And look down at the sea
And I sing cos I know - yea
And I sing cos I know - yea
And I sing cos I know
I?d know how it feels
Oh I'd know how it feels to be free
Yea Yea I'd know how it feels
Yes I'd know
I'd know
How it feels
How it feels
To be free
I did okay on the exam part of the Fitness Course and now we have moved on to some more applied aspects. We worked out a 45 minute exercise set for moderate functioning older adults right down to music to exercise by. We were paired up and had to combine our exercise sets. Yesterday we went to a personal care home where we led a group of seniors through our routines while under the supervision of their normal Recreation Therapist.
The group we got was a Day Program. Seniors who are identified as needing extra care in order to continue living out in the community, may be bused into the program for about 5 hours one or two days a week. The people were so responsive to us and it was a wonderful experience. It makes me feel a whole lot better about my big plan to do this kind of work for a living. We did all of our exercises seated. I did the warm up and cool down sections while leaving the middle harder cardio section for my partner. I had my cane, I was not lifting my limbs equally but I kept going and I think some people may have been looking at my enthusiasm and figured that if I could keep going they could too.
We got to help out with the group for another hour or two after our session. We helped serve lunch, we played bowling and we participated in a kind of poker card game. We helped everyone get their coats on at going home time and helped the therapist set up the breakfast supplies for the other group of seniors who will arrive on Monday morning.
It was fantastic. I am pretty exhausted today but it feels good.
The groups therapist had the job of marking us and writing out a report about how we did and give further advice. She said wonderful things and gave us full marks. I really feel proud.
The course we are on now is called Therapeutic Fitness or Fitness Leadership. This has involved trying to learn a whole lot of names of bones and muscles. It also has involved learning the function or movement of this huge list of muscles or muscle systems.
We have had a couple days in the college gym where we were required to take part in some fitness activities. One day was working out with all the different fitness machines and equipment and another day we sat in a circle in this gym and worked on learning how to lead seated exercises for all the different muscles and included the use of dynabands and weights.
I can't say this has been my favorite week of school.
Tuesday will be the final theory exam (25%) for this particular course. Besides short answer we will have pictures of muscles and we will be expected to identify them, list the function and actions of the muscles and then give an example of an exercise that works on the muscle. I have been staring at the teacher like he arrived from a different planet. Nothing made a lot of sense to me but I am getting there very slowly. I am now working hard on memorization if not comprehension.
Next week we will have to develop and hand in plans for group exercise classes for high, moderate and low functioning seniors. The moderate routine should last about 30 minutes. We will be divided into groups of 5 and each of us will have to lead the other 4 in our planned routine and we will be marked and critiqued on how well we do. (65%) On Friday we will be going to a seniors home and each of us will be given a small group of seniors to do our exercise class with. (10%)
I certainly don't qualify as high functioning myself so we will see how this week goes.
Wish me lots of luck!!
The exam will be pictures like this without words.
Name of muscle: or muscle group:
Bicep Femoris (hamstrings)
The actions:
It extends the thigh at the hip joint, (your thigh can go behind you)
flexes the leg at the knee (you can bend your knee) and
Assists in adduction of the thigh. (pulls your thigh inward toward the middle line of your body
Possible exercises would include:
leg curls
squats
I should personally do a heck of a lot more squats and leg curls.
My Guide leader daughter Alicia, Guider Christie and I took a group of girls to Dauphin, a town about 4 hours from Winnipeg for an overnight trip.
Stop drop and Roll at the fire station
We drove out using 2 vehicles on the Saturday morning and met at noon with about 200 girls ages 9 to 14 and their leaders from all over the province.
The afternoons activity was to do a scavenger hunt around the town. I walked around with the kids for the first half and then I went to get the car and caught up with them at a couple of further spots. The whole things would have been about 4 km one way. not counting all the twists and turns going back and forth finding our clues or getting back to the hall again. I am glad I drove for the last part. I am learning to save my energy for when it counts.
Read a book at the library
There were about 40 locations around town were they were to either record some information or to take a picture of their group in that location.
It was fun... Things to do like find the fire station and do a stop drop and roll for a picture. They were to get a picture of themselves at the one drive through bank in the town. Pictures with green vegetables .. mainly done in grocery stores. The girls were to go into the local community pool and count how many sea creature shapes were hanging from the ceiling. They stopped at the war memorial and were to count how many people died in the first and second World Wars.
A fun stop was that they were to get their group picture taken with the Wal-Mart Greeter.
Dinner was in an old theater and it was very well managed tacos in a bag dinner and veggies dinner with cupcakes for dessert. The volunteers pulled it off so smoothly for such a large group that it was very impressive.
Where we had lunch.
Next we went to the swimming pool for the evening. It had a wave pool and lots of room for the girls and a hot tub. I was a little stiff after all the driving and hiking the scavenger hunt so I really appreciated the hot swirling water,
I was kind of surprised at how few leaders got in the water. We didn't need to because their were life guards but really .. the ladies should have got in the water and had some fun too. I kind of think that some women are hesitant to get into a bathing suit. Maybe they just wanted to have a chance to sit at the little tables and chat. Personally I liked chatting with the couple of other Guiders in the hot tub.
Old Train Station
Pool time ended and we moved into the Shopping mall. The mall was closed for the evening and the stores all closed but the center part was all ours. Giggling girls were running all over the place in their jammies and funny slippers. We set up our sleeping bags and in my case ... my camp cot, all around the walls and shop windows. We had a snack time... more like a feast with fruit, meat, cheese and when that was all finished we gathered in the center for a campfire. The ladies running it took the unusual approach of doing all actions songs. I didn't realize I knew so many action songs!
There was a screen set up and all the pictures from the scavenger hunt were loaded up and we viewed them as a slide show. It was fun to see all the different ways groups approached the challenges.
I slept just fine and actually woke up quite well rested. My daughter kept waking up and listening for the girls but I was comfy in my sleeping bag. Breakfast and then we were on our way back to Winnipeg. The girls had fun and want to go again next year.
I did crash on the couch when I got home and I needed a bit of pain killer for all my sore muscles and I was too tired to get any homework done. I felt good about going, and spending time with all the other leaders and girls. I would do it again in a heartbeat.
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.
List several types of Leisure activities you enjoy
How you participated in each of them in the past,
How you have recently been participating in the activity.
What challenges are being faced?
What strengths do you have?
What are the objectives you are trying to meet?
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.
My class participated
in an assignment this past week called ”Experiencing a Disability” and this event
has created a lot of reflection on my part.
This major project required everyone in our class to pretend
we had experienced a stroke that left our dominant side unusable. My class of
15, after dividing into teams of three or four, visited 7 different stations
and we tried to carry out a variety of activities sometimes with further
physical challenges attached.
Me in pink and two of my new friends.
I had a meltdown days before the event. I couldn’t understand how this was all going
to work for me. Panic set in and my
inner dialogue took off at top speed.
I already have left side (non-dominant) weakness so if you take away my good dominant side will I wind up falling down a flight of stairs?
If I have these extra disabilities it puts me facing more physical struggles than others in the class so No Fair!
I already know what it is like to have a disability so why should I have to do this for marks?
Will what has been an everyday reality for me and some of my friends turn out to be a joke or playing make-believe to my classmates? On the other hand, perhaps the class will get a better understanding about stroke as well as other disabilities which I am sure is the true intent of the exercise.
On reflection I realized that none of that was what my anxiety
was really all about. In reality I am terrified that someday I will find myself
right back in a hospital unable to talk or move again. Having my movement or vision reduced, are the
things my nightmares are made up of and that was exactly what was being asked
of me with this assignment. I had to take a leap of faith and face some of my fears. I talked to the teacher and told him I needed to be sure
that I would be safe and he reassured me that he would never let anyone be at
risk but that I did need to participate and see how I could contribute.
On the day of the workshop my group of three started off at
a station where we were to pretend to have had a dominant side stroke and that we needed
to use a cane. We were told we also have vision issues so the other two got eye
patches covering one eye each and I got glasses that clouded over one eye
completely and left only the bottom 1/3 of one lens clear.We were to place marshmallows in our cheek to
mimic speaking difficulties. We had directions to go down to the lower level
and go to the library, find a particular book and then find a video with a
particular call number. Write down the name of the book and of the video using
your non-dominant hand. Next go to the cafeteria and order a drink or snack.. still
with marshmallows in cheek, eye patches on, using the cane and still not
using one arm we had to get those drinks back upstairs.
Experience is a good teacher. I aimed our little group straight at the
elevator that is designated for disabled students, I got the librarian to help
at one point and I asked for a cold drink in a plastic bottle with a lid because
I know better than to carry a hot coffee in a paper cup. When we were walking I kept my cane in my stronger hand
because I wasn’t going to risk a fall while learning about disabilities.
Other activities done in the class room included putting on
a shirt and doing up the buttons with the non-dominant hand. Picking up pennies
with gloves that mimicked arthritis as well as playing some games like connect
four and bingo wearing the gloves. How
about serving and eating Jello one handed and with an eye patch on then mixing up
flour and water to make a batter? What about getting toothpaste out of its tube
and onto a toothbrush or tying shoes with one hand?
You know what? It turned out to be a good experience for the
most part. All that occupational therapy and physiotherapy has paid off, because
even with my weaker side I could do a lot of these activities simply because I
already know many tricks of the trade for doing these things. Restricting my good hand and letting me use
only my spastic left in therapy apparently has also paid off!
The final station was not as big a success for me. The goal
of that one was to use a wheelchair to get to a bathroom and then without using
the dominant arm and leg, transfer to the toilet and then get your pants back
up and get back in the wheel chair and return to the classroom. To begin with I did not have enough strength in my left hand to get
the door open to get out of the classroom. Bad start. Trying to scoot an
oversize wheel chair with my weaker, and I might add less coordinated, leg and
arm was a huge issue. I got myself to the washroom stall eventually but I was unable
to pull myself up to do a transfer with either hand. No pretending. I had hit
my endurance limit.I slowly worked my
way back to the room wheeling using both arms and I was kind of glad to be
sitting down. A guy in a wheelchair of his own gave me a knowing and defiant glare and basically
did a wheelie in front of me.. the show off. At another time I might have been embarrassed or perhaps irritated but I was too tired to give a darn at that point.
I must admit I liked hearing the other students saying it
was so much harder than they expected it to be.The next day several classmates said they had needed to nap when they got
home after the workshop. Yup that is my normal daily reaction too.
My good stroke friend
Dave D. likes to talk about The Lessons Learned so here we go.
I still have some emotional trauma issues lingering related to the brain injury but at lest I am aware of them and know I need to work on them
My fine motor skills on the left side are better than I thought. I’m so glad I really worked on it with guitar, typing, crochet and any other hand exercise I could find.
My gross motor on the left could be a whole lot better as could my stamina. I want to see what is possible so I just made an appointment with a new physiotherapist.
We should be willing to ask for and accept help when needed
I am willing to do stuff like wedge a plate of Jello against my chest in order to spoon it up one handed if that is what it takes.
Do you ever watch TED talks? It is a wonderful way to hear some amazing experts and inspiring people talk about a subject for 20 minutes. TED is a non-profit organization that uses the tag line-- Ideas Worth Spreading. It began about 20 years ago with a conference to bring together people involved in the disciplines of Technology, Entertainment and Design.
Janine Shepherd, a former cross country skier suffered serious injury when hit by a truck during an Olympic training ride. She decided if she might never walk again she might as well learn to fly! Her message is that you are not your body, and giving up old dreams can allow new ones to soar.
I hope you enjoy this talk. I found her to be inspiring and entertaining.
My classmates and I went to our first conference last Wednesday.
The annual local Therapeutic Recreation Professional Development Workshop was hosted in a town about an hour outside the city. As students we
were allowed to register for a very low price. It was
just for the day and registering for the conference also entitled us to a
student membership in the in the association so it seemed like a great
deal to me.
They had arranged for an
optional bus to the conference site, and the bus was departing only a
mile from my house so it seemed like the most natural choice. I was
worried about my ongoing issues with dizziness and car sickness. It turned out
that the bus trip was fine and I got to talk to some really nice people during
the ride. Unlike riding a city bus, which is constantly starting stopping
and turning, this bus ride was really just one straight road with
maybe three turns in the whole hour. I could watch the road out of
the front window so that was also helpful with the nausea problems. I
really couldn't tolerate turning sideways or looking backward at the other
participants but I still managed to have some great conversations.We
arrived at the center for the workshop and lined up for the check in.
We received a bag with the organizations logo and then we gathered
with about 100 other people involved in the
profession.
The event started out with an inspiring
key-note speaker who was an Olympian with our country's Volleyball
team. She told about her struggles as a shorter person to have opportunities to
play the game she loved.
Next we went to one of three
break-out sessions. The one I choose was led by a life coach and was on the
topic of finding your "authentic self". The idea is that people
intrinsically have different styles or interests and that these continue
into old age. Someone who was creative as a child is likely to prefer creative
activities as an older person and someone who is competitive will still be
inclined to be competitive in their older years, If you know the persons
inclinations you are more likely to help them engage in the kind of leisure or
rehabilitative activities that they would enjoy the most. It was really very
interesting and I can picture applying some of what I learned to my Guiding
efforts too.
I took this during the hands-on section of the
PhotoVoice session. I wonder what it might tell
us about the workshop?
Following
lunch we had another set of sessions. This time I went to a truly
fascinating talk/ hands on session about something called PhotoVoice. It is
a method of gaining qualitative information by encouraging a group to go out
with a camera and take pictures to communicate information about a topic. One
example would be to look at risk factors in a neighbourhood by giving kids
a camera and asking them to take pictures about what makes them
feel safe in their neighbourhood and what makes them uncomfortable. The
pictures would then be discussed looking to see what the kids were relating to
in their pictures. It is a powerful tool because it gives a voice to people who
might not be able to share information freely and the picture gives concrete
evidence that can be shown to people who have the authority to make changes. I
encourage you to check out the PhotoVoice website to find out more.
We
went back to the main auditorium for something they called a Bring and Brag.
Several individuals or groups got up to the microphone and showcased activity
programs they had found to be particularly effective.
Bus ride
back to the city, quick dinner and then by seven pm I fell asleep on top
of my bed still in my clothes and stayed that way for the whole night.
I liked going to the
workshop, I enjoyed meeting a variety of people who are working in this field
and now I feel one step closer to imagining myself working as a
Therapeutic Recreation Facilitator.
One final exam is now over and the next course with the same instructor begins Monday. Foundation in Therapeutic Recreation was our first class and the idea was to get us exposed to different concepts about the field.
A major feature of the course was that we went to observe 7 different programs for older people and then we filled out huge sets of questions about things we observed at the location. We visited personal care homes, adult day programs and a lovely independent living facility. We talked with the Recreational Therapists running the programs about their jobs and the joys and challenges they faced in their particular work.
I was at a Girl Guide event where we had
a MARSHMALLOW roast
I was really interested in seeing how the programs were handled and I could not believe how different they all were. I had fun watching a music program, and observing a really fun version of exercise combined with some cognitive prompting. (Stretch the rubber resistance band toward the west coast to Vancouver.. now let's aim toward Halifax on the east coast.)
One highlight was the hands on opportunity to help out at a day program when a petting zoo came to visit. The bunnies and chickens were carried around the circle for everyone to pet and I sat talking to several different interesting older people. I was amused to find that while my younger classmates were getting comments about yes nice and soft pets. I was getting the older people telling me that these fancy breed chickens were too scrawny to cook and then several of them shared recipes about the best way to cook rabbits. So much for that cuddly petting zoo idea!
One of the lovely but still slightly disconcerting aspects of several of these visits was that so many of the residents looked at my cane and my graying hair and warmly welcomed me as a new participant and member of their group. I guess I look like I belong.
The final exam was not that hard but I really did need to take a lot of extra time to complete it. Word recall is still very much an issue for me. Matching or fill in the blank questions were great and I really don't think the essay questions went all that badly but darn that word recall problem when I needed specific terms. Somewhere in the extra time I was allowed because of my disability, I had the most of the "missing words" pop back in my mind. I was talking to one of the girls in the class yesterday about how I went to a bonfire cookout and I told her we had smore's and that I had roasted a mushroom on a stick. I looked at her confused expression and realized that I did not say "marshmallow". I told her with a tiny touch of embarrassment...." and that is part of what they mean when they are talking about aphasia".
Exhaustion and stress bring on some of my symptoms that were bigger issues a year or two ago.
... Being exhausted and stressed is part of the definition of being a College Student.
It is hard to believe I have already completed 3 weeks of classes. I have
already handed in major assignments and next week one of the classes has its
final exam! We will be doing up to 3 classes at a time in a rather
intense, accelerated pace --then get the mark and move on to
different credit classes with the same teachers. Yes, it is being
wonderful and yes, this is difficult!!!
I think I should start by introducing my new cast of characters.
There are 15 people in our class and we make quite the demographic
picture, There are two men and 13 women, 2 of us are in our fifties , a
few in their forties and thirties and 7 young women that are
about 19 to 25. There are 4 that are living in the rural area outside of
the city and have a long drive in every morning. There are several other people
besides me with learning or health challenges. We are all starting
to form a group and learning to work with each other. How appropriate that the
first assignment for the writing class is about group formation.
We have 3 instructors.
T is an intense, jovial guy that has years and years in the Therapeutic
Recreation field and has developed innovative programs and
policies for personal care homes. I believe he holds degrees in Recreation, Kinesiology and also in Gerontology.
J., who is a lovely, knowledgeable woman is very experienced in community based care. She has a very warm approachable style coupled with a much more academic teaching approach than the other two instructors.
The last
teacher, B., is the one I had last year when I took that course in
Interpersonal Communication in order to prove that I really can do this.
He comes from a background with law enforcement and has been
a college instructor for about 30 years. His
classes in writing, interpersonal skills and computer skills are considered
fundamental and he teaches the same classes to many
other social based programs throughout the college.
I want to keep this blog going but since I have so much writing with school
I think I will try to write shorter but more frequent posts. I am learning
a lot of interesting information that I would love to share and I am
having lots of new experiences and meeting new challenges.
I look forward to telling you all about my new adventures.
When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us.
Alexander Graham Bell
The staff of the college program I am entering, the disability advisor and my job coach have all stressed that I need to let go of my different activities for this coming year. I need to focus on school. I know that college is going to use up most of my energy and that spare time will become a thing of the past.
You know what? It is hard to let go of my activities and social life. I keep trying to negotiate a way that I can keep doing all the things I have been doing. Moving forward to new experiences means I have to leave past activities behind, at least for a while.
Yesterday I called my guitar teacher and told him I was quitting for now and then I cried. I have put a lot of time into getting that darn thing to sound half decent and I was just started to feel like I was making music instead of doing finger and hand therapy.
Volunteering at the hospital is another hard one to give up. The volunteer coordinator sent me the mailing of the recreation activities they need help with for September and I really want to volunteer with most of them but I won't be free. I realized with a smile that my reaction is a good thing. It probably means this Therapeutic Recreation program is a good choice for me.
Girl Guides? Actually this one feels okay. I will maintain my membership, and I will still attend the occasional event with girls and hopefully be a bit of a mentor for the younger leaders in my group. I will kind of take on a Grandma role. I will come to the enrollment and take pictures, I will show up for a couple of events over the year. Guiding has a Trefoil Group for older leaders to meet for fun activities on a monthly basis and I have participated in that group for a couple of years. I already had to send my regrets regarding attending a day in the country with the group that will occur on my first day of classes. I am confident that I have the support of this group of women who have devoted years with a recreation and learning program for girls and young women. They understand about the value of the training program I am about to start.
On Wednesday I chaired my last meeting of the Peer Support Group that I have been involved with over the past several years. I am passing the group on to a couple of wonderful people who have been part of the group and I know that things will go even better with their fresh ideas, I am sorry to be moving away from Stroke Recovery Association of Manitoba but that feels right too. I will still show up when I can and I will keep in touch with my friends but it won't be quite the same. I talked to the organization's Administrator, Russ, about what a home away from home the organization has been for me. He said that one part of the organization's official objectives is "To assist the Stroke Survivor to again become a participating member of society through mental stimulation, self-help, and socialization" . He said that is exactly what I was doing.
Moving forward is what is supposed to happen.
I have some very good news. I am starting college in just a couple of weeks!
Two years ago I was accepted into a government program that helps people with disabilities get back to work and I have tried very hard to meet all the challenges involved in the program. I almost gave up a few different times in sheer frustration but here we are at the next phase and I am still hanging in there.
I am not able to return to the type of work I used to do, so my vocational team and I knew that we would have to explore new options. I took a computer class, I did a week of vocational testing and presented doctor reports. We worked on creating a new resume, we interviewed several people about what their careers were like and we came up with a short list of options for me. I was particularly interested in Recreational Therapy.
My counselor told me that it was possible that I would qualify for retraining. The local college offers a nine month certificate program, so we met with the disability counselor for the college and discussed my options and supports I would have if I went back to school. Last January I took a night school course that is a credit for the program. I found the course difficult, but it showed some of the problems that I will need to address in the future. I put in an enormous amount of work and got a great mark so that was proof that I can indeed handle school in spite of my cognitive issues! The vocational program also arranged for me to volunteer for six weeks at a hospital based personal care home helping with the Recreational Therapy program and also with the Spiritual Care program. I needed to prove to myself and to the government that I have some attitude for that kind of work and I also needed to be assured that I could find the endurance to work half days.
I choose to continue volunteering for the hospital past my required commitment and I have now done over a hundred hours of service. I am loving it more and more all the time and feel confident that I will enjoy that kind of work and be good at it.
Last month I got notification that I was accepted into the college program and that I would be fully funded. Yippeeeeee!
I will start the full time program in Therapeutic Recreation for Older Adults in three weeks. It will be seven months of in-class training followed by two months of work placements in the community.
I am excited and anxious about going to college. I still have a long way to go before I have a paying job ... but I think that I am up to the challenge with support from the counselors, teachers and especially my family and friends.
I am sorting through recipes, scraps of paper with addresses, magazine articles and greeting cards and a lot of notes that were written to jog my faulty short term memory. During the first couple of years after I got sick I picked up every health care pamphlet and every more or less inspirational message I could find.
With my wavering cognitive abilities at the time I had trouble determining what to keep and what to throw out so I kept a lot of boxes and zip lock bags full of random items. I did not know who or what to believe in as I experienced the uncertainty of my illness. I did find a lot of comfort in my religious beliefs.
Today I found a little scrap of brown paper, torn from the corner of a fast food bag, where I had written the words:
"Kyrie Eleison- Down the road that I must travel".
I have no recollection of writing this little note to myself but it still resonates very strongly with me. Life can be a pretty hard road with a lot of uncertainty and fear but here are lots of wonderful joyous moments too. Kyrie eleison... means Lord have Mercy and is part of the church services I have attended since childhood.
The song I will have remembered these words from is Kyrie
The lyrics are by John Lang and the music by Richard Page and Steve George and were performed by Mr Mister.
Kyrie eleison, down the road that I must travel Kyrie eleison, through the darkness of the night
I also especially like the lyrics--my heart is old, it holds my memories. These boxes of papers are not going to fill in my confused memories from that period of my life. The things that are important to know are already held within my heart.
The wind blows hard against this mountain side,
across the sea into my soul
It reaches into where I cannot hide,
setting my feet upon the road
My heart is old, it holds my memories,
my body burns a gem like flame
Somewhere between the soul and soft machine,
is where I find myself again
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
When I was young I thought of growing old,
of what my life would mean to me
Would I have followed down my chosen road,
or only wished what I could be
Recently I was walking with a new friend when we come across one of her old friends. Her friend is suffering from Alzheimer Disease. The lady lit up and stretched her arms out to my friend, wanting a hug but the lady did not know my friend's name and did not remember that they had raised their kids together. She did know that it was someone she could trust. Once we walked on and were out of sight, my friend turned toward me and started sobbing in my arms. The person who was her old beloved friend and confidant is gone. We talked later and she told me how she was the only one now that carried the memories that the two of them once shared. She told me that her friend was the person who always knew how to solve problems and was the one everyone would turn to and she also said that if something like this can happen to a bright woman like her friend, it can happen to anyone.
I have been giving this experience a lot of thought. I am not sure that I have truly given enough consideration to the impact a life changing illness can have on the survivor's friends.
One of the topics that comes up regularly at my Stroke Recovery groups is how social relations have been affected by stroke. After a stroke a person experience so many changes that in many ways he, or she, is not the person they once were. Even someone who has a full recovery will have experienced a trauma that leaves him changed forever. He will never again feel quite so safe and invincible - he becomes aware of his own mortality.
If you have physical and cognitive issues you need to learn how to negotiate basic life skills in your home, neighbour hood and world once again. These changes affect your social life. Can you still be friends with the people you worked with if you no longer go to work? How about your your ability to enjoy the companionship of people with whom you shared sport activities? If you have some cognitive issues, or are unable to talk fluently, how many of your friends are going to want to chat on the phone with you? Limited energy reserves make even simple tasks exhausting so how can you find the energy to go out with a friend for coffee? Perhaps you will be embarrassed when you do go out if you need assistance to use a bathroom. What if you need help cutting your food? What will your friends think if you look different now?
Many survivors find themselves leading lives where their outings revolve around doctors visits and rehab sessions. They become increasingly isolated in their own homes and their social circles becomes smaller and smaller. Isolation comes with increase risk of depression and poorer life choices that can affect their physical health even further, never mind the quality of life.
I lost some people from my life over the past few years. A few friends and acquaintances did not have hope that I would have any real recovery. They more or less wrote me off and got on with their own lives. I have spent a long time thinking that I had learned who my real friends were but perhaps what I was seeing was not their lack of interest in me. Maybe what I was witnessing was their own fear and vulnerability and inability to cope with the changes in me. Perhaps they were seeing, reflected in me, their own mortality. Maybe I am the one who needs to learn to be more compassionate.
I have been blessed to have had my family and several friends stand by me through the past 5 years. I am fortunate to have also made so many terrific new friends online and in my local community.
I can't begin to express my gratitude for all the wonderful people that are in my life.
Five years ago on Mother's Day I was in the hospital having trouble breathing. ... That was
the beginning.
I thought I was having an asthma attack, not uncommon for me, but the inhalers
did nothing. I stalled around for at least two days before I went to my doctor
for a refill on my asthma prescriptions and he was about to send me on my way,
saying he did not think I had pneumonia when he asked if my leg was swollen and
I said yes. I was told to get to the nearest hospital so I got in my car and
drove to the hospital. (stupid choice in not getting a cab or asking for a ride).
I gave my husband a quick call and told him don’t come, just my asthma was out
of control again. They had a long waiting list but did not let me leave the
nurses desk once they checked my blood pressure.. I waited for several hours as
my breathing got worse and worse with the nurses assuming I was still having
asthma issues. Once the doctor saw me all hell broke loose. A quick X-Ray and
the doctor told me that the fact that my blood pressure was extremely different
from one side to the other and my leg was now very swollen was a bad sign. They
called my husband, loaded me in an ambulance to go to a critical care hospital and by that time things were getting pretty fuzzy. I heard the
nurse tell the ambulance driver to hurry, she was not sure I was going to make
it.
I was found to have had a pulmonary embolism - 5 blood clots in my left
lung. They started me on a blood thinner and worked on keeping me stable. One
of the things that they found was that my hemoglobin was dangerously low, related to
having very heavy periods.
The third day was Mother's Day and I wanted to go
home and be with my family. It was decided that they would give me blood
transfusions and send me home but I needed to come back to the hospital every
morning for a couple of weeks to get heparin injections and to be monitored.
The question about why my periods were so bad was still not answered so we
went home with a warning that if I started bleeding very heavily with my next
period the anticoagulants made it risky so we should get to the hospital as
soon as possible.
I was just happy that I was at home with my family on Mother's Day.
I have been volunteering .... A LOT! I have always been a volunteer with a variety of organizations but this was something else!
I have continued to work in the direction of getting a job someday and part of the process has involved investigating a number of different fields. I have been leaning very strongly in the direction of some kind of recreation related job and it was recommended that I get some real life work experience through volunteering. Partly this was to prove that I really do like that kind of work, that I really can do the job and most difficult was to prove that I have the stamina to work a half day job. I was also trying to prove to myself, and my employment support team that I would be able to go to college full time next year for a certificate program.
The Hospital's Thank-you pin for Volunteer Appreciation Week
We had a really hard time finding somewhere that would let me work the number of required hours per week. To best qualify for financial assistance they wanted me to work for about 15 hours each week for a period of at least 4 weeks. Most places would have been happy to give me about 3 hours but not that many! Eventually the decision was made that I could work at two different places and we would add up the hours.
My Employment Development Specialist and I met with the director of the Stroke Recovery Association of Manitoba where I have been an active member over the past several years. We agreed I would spend time volunteering in general ways and also to chair our upcoming Wheel and Walk fundraiser.
Next we met with the Volunteer Coordinator of the hospital where I received most of my therapy.
After an interview process I began volunteering in the nursing home that is part of the hospital complex. I have been helping to transport residents to programs and assisting the recreation directors with a variety of events ranging from Spiritual Care activities in the chapel to crafts, music therapy sessions, movie night and even baking cookies with some lovely seniors.
All of this ... while desperately trying to balance my normal family, and my normal volunteer commitments. The rest of the time I wanted (well maybe needed) to be a couch potato.
I did it. The volunteering was very worthwhile, very encouraging, but also challenging and exhausting. I found that a lot of the things I worried about were not issues at all, but helping with adapted curling proved to be a rather humbling experience that pointed out my limitations. [note to self-- NO more curling- adapted or otherwise]
My required time as a volunteer with these organizations is now up. I had an appointment a few days ago with the hospital volunteer coordinator and we discussed my continuance as a volunteer at the hospital. I left with dates that I will be volunteering for the rest of May. Stroke Recovery's annual Wheel and Walk fundraiser takes place in June so I still have a lot of lot of volunteer work ahead of me.
.
I thought I would try to do today's prompt from Wego Health and it was harder than I thought it would be.
Today’s Prompt:
Write a health acrostic for your
condition, hashtag, or username! (acrostic = a poem where every letter
of a word serves as the first letter of a word or phrase i.e. DOG = Digs
Others’ Gardens)
The first challenge is what word to pick?
a) I really have not gotten into twitter -- so no hashtag.
b) Username? Well I think they mean my blog title and Leading a Healthy Life seems too long and therefore too much work.
c) My condition seems a bit complicated for a word choice. Nothing was straight forward in the diagnoses, therefore stroke is close but not exactly the accurate term for my condition so brain injury maybe? Vestibular disorder? Perceptual issues? Cognitive impairment? Left side weakness?
It struck me that is not how I would choose to label myself on the good days.
I have been a busy person for the past couple of months. I am looking into employment and retraining options for the future with the help of SMD (the Society for Manitobans with Disabilities) and this has led me on several adventures over the past year but the past two months have brought the largest set of challenges. I went back to school and I also started volunteering at a hospital to gain work experience.
I completed the ten-week college course in Interpersonal Communication that I started in January. How did that turn out? I don't have the final mark yet but I expect to have passed comfortably. I completed 4 short papers and wrote two exams. The first half of the course was an exercise in fitting in and getting back in the grove. I quickly became aware of some major learning problems that did not exist before my health issues started. I used to read a lot and be able to easily remember what I read or heard. That is just not easy anymore. The course had a rather good textbook that was set up with an accompanying online version of the text and a lot of extra study aides available online and boy did I need them.
The teacher is a nice guy with a true desire to educate his students.
In class there were a lot of small group activities and he managed to let me stay put and have the small group come to me so I didn't need to get up and down all the time. The class room was a very "busy" place from a sensory point of view. There was a heater going, a buzz from the lights and a lot of wiggly classmates. I picked a seat to the left side of the room near the front and that helped a lot since I seem to see and hear a lot better when the action is to my right "good" side. I had trouble catching everything the teacher was saying, especially if he turned his back to write on the board or talked faster when he got passionate about a topic. He has his own issues with hearing loss and was understanding and more than willing to make every effort to accommodate me.
I found that, even though I usually feel like my language skills and short-term memory are adequate for everyday life now, my language skills fell apart when I needed to learn so many new terms. The course had about 25 fairly complicated vocabulary words a week and I was really struggling. I understood the concepts but word retrieval was absolutely eluding me. Even if through some miracle I recalled the new word, I might have trouble actually articulating it during class, sort of like a stutter.
The saving grace for me was that the online resources had a lot of games like memory matching games. …find the card with the word and march with a card with the definition. There were vocabulary crossword puzzles, vocabulary sheets, examples of videos using the skills, and practice tests for each chapter. I worked so hard!! Even with all that my recall was extremely hit and miss. The reason I will have done okay on the exams is because the exam format was multiple choice. Aha! Apparently I can recognize the word and understand it. On-line practice fill in the blank tests were miserable. My midterm exam mark with multiple choice was great.
Reading the textbook was a massive challenge too. I have worked and worked over the past 4 years to get my reading level back up again but it is still difficult. The muscles in my face do not work evenly so my left eye tracks across the page slower than my right and with a little bounce. Reading this photo rich textbook, for content, was taking me as much as 7 hours actual reading time to get through 30 pages and for every hour of reading I would need to stop and rest my eyes for another hour in order to recover from the growing headache and accompanying nausea.
The partial solution to the reading issues was that online version of the textbook. I had my textbook open with a highlighter pen in hand and I had my computer read the words to me. [On my MAC you highlight the text you want read and then hit Option plus Escape]. I highlighted anything in the book that I needed to review later in order to work on remembering or comprehending the material. I closed my eyes and listened through examples and basic information.
The formatting style of the textbook made this difficult too. The computer reads straight down the page as printed, including tables and pictures stuck in the middle of text passages. This is also not easy because you can't take your time when reading the hard concepts -- the computer voice plods on with or without you.
I still hope to go to college and take more courses in September but I am starting to become aware of how many barriers I will be facing. I have an appointment with a Disability Counselor/ Social Worker at the college to discuss my options for modifications or assistance in the future. Next time I might not get a multiple-choice exam!
The volunteer experience component of my back to work program overlapped with the last two weeks of the college course. My ability to study and focus plummeted and fatigue won out. I am sure my second terms marks will reflect my exhaustion.
Am I glad I did the course? You bet!
I found it hard to keep to the page limit in the papers I had to write for class. I always want to write too much!
Therefore...
I will save writing about my volunteer experiences for another day!
I have been pretty busy and have neglected blogging but I do miss writing in mine and reading other's blogs. One of the things I have been thinking about is how to restructure my various blogs and I have closed a couple of my small blogs and I am now thinking about opening new one just for fun. I will not be making any major changes with "Leading a Healthy Life" other than to spend more time here.
It is time for the Health Activists daily blogging month once again and I have debating participating this year. Last year I got a lot out of participating in the challenge but I also burnt out a bit doing it. This year I have decided that I will participate but that I need to take days off each week. Another thing is the great daily writing prompts that WEGO provide are not always the best choice for me on a given day and sometimes I have other things I want to talk about!
Today is kind of a tired day for me. It is all about finding balance in order to make the most of my energy reserve. We had a lovely Easter dinner for 11 yesterday and it went very well with lots of help from my daughters and my husband Bob. Today all I have done is nap during the day, watch TV, sort through a few papers and this evening Bob an I attended choir practice for our Scandinavian community choir. Tomorrow I will be very busy volunteering with three different groups.... but that will be a story for tomorrow.
I have been keeping busy with all kinds of
different activities but my main focus has been to gradually progress toward
getting back to work.
I
was accepted into a re-employment program a year and a half ago and we
have been trying to find out what would be a good job for me now. I did
aptitude testing, I took a computer course through them and I have gone with my
job coach to interview a variety of people about what their jobs are really
like.
The
re-employment program is currently trying to find somewhere for me to volunteer
in order to get some real life experience and investigate what might be a good
field for me. They want me to volunteer or job shadow for about 12 to 15 hours
a week for a minimum of a month in order to prove that I could eventually
work part-time. It is possible that if I meet these requirements I might
qualify for some government education subsidies.
Last
October my case manager and I met with a Disability Counselor at our local
community college. We talked about the option of my entering a program at the
college and we had a good discussion about what kind of supports I could expect
from the college. I also told her the program that was most interesting to me
is a certificate program called Recreational Facilitator for Older Adults and
we discussed how employable I might be after completing the program.
They
have made recent changes and that Rec Facilitator program is no longer being
offered on a part time basis so the only way I can get the certificate will be
by going to college full time for 9 months starting next September. It
turned out that a couple of the classes I would need to take were offered in
other part time programs and the counselor suggested that I take one course and
see how it goes. If I do go on next year it would be transferred over and it would
make next year a little bit lighter. Everything looks very promising, but I
must admit that the thought of being a full time student is very daunting to
me.
I
am currently taking a course called Interpersonal Communication. The
class is from 6:00 to 10:00 one evening a week for 10 weeks. I have made it through 6
evenings, one mid term exam and two assignments.
I
am not sure where this will lead, but so far, so good!
I am very, very busy with college. There was a massive charity event last week, a paper due yesterday, another major paper about group dynamics, a case study test tomorrow and a final exam about cognitive issues and therapeutic care on Friday. Then 2 weeks off! yippee!
