Time to get the cane back

One thing that has come to light during my recovery is the fact that others can not see some disabilities and assume projecting expectations on us is acceptable.
I have always been a high functioning guy with a high pain tolerance. Although I could not walk, see or eat to name a few things I have always tried to avoid representing these things...going from wheelchair to walker to cane to no aids is one example of me trying to present an able bodied guy.
I never wanted sympathy and only want to get better but now I see that I may not receive the same compassion I once did...hence me thinking its time to get the cane back. Its not that I need it but it would be an indication that something is not right and maybe others would not expect more from me than what I demand and hope for from myself.
Its time to own the stroke.
Denying ailments do not make them go away, trying to present a "normal" exterior or go back to a "normal" life does not make things go back to what we remember as "normal". I know I'm not the only one that hopes that things will get back to "normal" and maybe with time and effort it will, it just can't be rushed, especially by trying to submerge back into life as we knew it. Doing so may fool others to think that we are "normal" but that doesn't make us "normal" again. When people ask how I am, I have been conditioned to say "good" or "O.K thanks, how are you?" To avoid lying or misleading others I have begun to state "I've been worse" its the truth more than the old statements and the day that I am back to "normal" is the day I will return to my old statements...if in fact they are true.
I know that the people ignorant of my ailments think I look like I can skate or should work or be actively living my life and GOD knows I would love to feel competent enough to do these things again.
Balance, headaches and right eye functioning are not that apparent to others and a way too apparent to me. I have acquired the ability to adapt or compensate for my shortcomings and I have been told that this is a big part of stroke recovery...I really hope not, I hope full recovery is in fact recovery not a combination of recovery and adaptation, time will tell.

Hitting the wall of recovery

Because recovery happens microscopically slow after the initial progress it becomes quite easy to pose the question to ourselves, "have I hit the maximum recovery?"
I have only met one fully recovered individual and it took her eight full years to acknowledge that she finally felt fully recovered. I guess this information has me waiting until I hit the eight year mark prior to accepting that I am where I am. In the meantime though it is very easy to think maybe I hit the plateau of recovery.
The one fully recovered survivor I did meet and hear her speak and I did read her book, My Stroke of Insight, so this leads me to update that part of this blog...reading materials...I have read many things that have given me ideas of things to do to try and incorporate into my recovery and other readings that have been more of a motivational tool.
Life still has so many awesome things to appreciate and I'm not done seeing them everyday.
Each of the last two days I went out for cold walks here in Southern Ontario through slushy and slippery surfaces and even climbed a 165 step stairway, two steps at a time, even though I had to stop half way up both times to get my breathing back into a managable state. I was using the hand railing to stabilize my balance and help me go up and down.
Next I will speak of things I have learned that we should incorporate into our lives in order to help our brains fire neutrons and aid in our recovery.

One thing at a time

Over the course of time I have had to remind myself to deal with one issue at a time.
Why bother wasting time with the issue of not walking when I couldn't stand?
Naturally many stressful things can evolve out of having a stroke, loss of abilities, job, house, car, marriage and finances to name a few. There's an old saying, you don't know what you have until its gone. The stroke took many things and time and effort helped bring it back and with it came the appreciation for what I had and what I have.
Thinking about these issues every minute of the day is natural too but I remind myself my energy is better applied to issues one at a time and the one currently at my door.
Just as important as dealing with one issue at a time is appreciating every little thing, hence the 1000 Awesome Things talk and book. Just like a three year old sees the awesomeness in everything we need to regain this perspective.
Projecting things whether they are good or bad is something else I have tried to refrain from.
Doctors and therapists have projected onto me and other survivors that I have talked to. We have been told we will never walk again or that we will get completely better. Neither approach has been helpful.
My neurologist answered me best by saying "all people are different and so are strokes, I do not have a crystal ball and can not say how long, fast or to what degree recovery will happen". There are many variables and having a positive attitude with effort are essential and everyone is different in this regard as well.
Ultimately Michael J. Fox stated something I relate to strongly "there is a difference between acceptance and resignation, I accept that this is my situation but I don't resign myself that I will be this way forever"
I bring this up because this attitude is partially responsible for my positive attitude and the effort I put out to recover.
A stroke causes a foggy brain and I have really needed to keep things in priority and deal with one thing at a time, if not I risk being overwhelmed and whether they are good things or bad things, being being overwhelmed does not help progression, if anything it may have me regress.

Balance

Balance continues to be one of my biggest problems along with the functioning of the right eye.
A stroke survivor I met described her initial vision problems as bouncing...I thought that was a pretty accurate description however I will qualify that my right eye drifts...when I'm tired or moving it seems to not want to isolate its focus on what I'm looking at, it drifts in a different direction. In the beginning I could not identify a speck or crumb on the floor. Now I'm getting better with this because my eye seems to stay isolated on the area I'm looking at, except when I'm moving or when I get tired. I notice when I walk or the few times I've attempted jogging I blink a lot trying to reset the focus of the right eye.
I have an appointment with an eye specialist in March and hope that something good comes from it. I suspect it has a big impact on my balance and without that I haven't felt stable enough to skate or get back into the work force.

Keeping an optimistic and determined attitude over the last two years has been one of the biggest challenges of recovery, some of my friends indicate that just going through one of the issues I have been dealing with would be enough for someone to call it quits on life. I have been there many times but ultimately I remind myself of the fact my life will come to an end whether I want it to or not, so I don't need to rush the inevitable.

Right eye & enhanced compassion and pride

My right eye still does not function properly. I can be in a wind tunnel and tears would stream from my left eye but the right eye? Nothing.
Since my stroke I have notice my emotions are hightened especially as related to compassion of others and examples of pride. I meet other less fortunate people or see my kids or others doing something that rings the pride bell in my mind...many times its both, seeing compassionate acts has me feeling compassion and pride in the humanity. That's awesome!
Yesterday I spent time with my kids and fed them dinner. Early in the day my daughter Kylie and I met at her school and travelled by school bus to the local Bulldogs hockey game (elementary school day, over ten thousand screaming kids!). The Bulldogs are the baby team for the NHL's Montreal Canadians. On the weekend Jacob and I went to a Marlies game courtesty of my friends at March of Dimes...the Marlie's are the baby team for the Toronto Maple Leafs of the NHL. It's great being alive and well enough to enjoy time and experiences with my kids.
I coached my son's hockey team last night to yet another loss...my 11th year of coaching minor hockey and having the worst record ever, I don't know if that has anything to do with the fact that I coach practices from the bench because my balance being so bad took away my comfort of skating on ice...a few more years? Yesterday's pregame talk was about effort, some of the players seem to lack it and I never did as a player or in my life, if I did then I would still not be able to walk, swallow or do the things today that I couldn't directly after the stroke. My next pregame talk is about belief, if we don't believe we can do something we never will, if we believe then the possibility exists...again if I believed I would never recover anything then I wouldn't.

Blog day 3

So, I searched the definition of a blog:

read, write, or edit a shared on-line journal

web log: a shared on-line journal where people can post diary entries about their personal experiences and hobbies; "postings on a blog are usually in chronological order"

That said, I have been writing since my stroke and rather than trying to reiterate many things I will just make entries current and possibly intertwine things of the past.
One example is this morning I took a shower like I do every morning. These days I am always reminded of the fact that just after the stroke for months I had no temperature sensations in my upper body, I had to put my feet in first to judge how hot or cold the water was before entering my whole body. It's so great now to be able to feel the water temperature over my whole body! It's awesome!

Day 2 of blog - Hiccups, sneezing and tongue

To this point I have not really identified that I get hiccups everyday. I can now hold my breath to make them go away. I could not hold my breath for the first few weeks and that's one of the reasons I had the hiccups for the first 13 days after my stroke...my waking moments were always filled with the hiccups.
I could not sneeze for months and when I did sneeze my first time after the stroke, I was at home with my kids. They were watching TV and I was sitting at the computer...I had no force or strength and the scrunch of my face and the pathetic squeak I made had my kids question me what that was? When I identified it was a sneeze and I was OK we laughed together.
My kids were always so concerned about my well being and I could sense their fear that my sneezes or choking fits were experiences that would take me away again.
I had many choking moments in the first few months after the stroke. The swallowing tests I had in the hospital revealed that only half of my larynx worked. It has taken me some considerable time to adapt to this but hey I can swallow and eat now!
Initially I bit my tongue everyday as well, after the stroke when I stuck out my tongue it went directly to the right, it has straightened up as I get better so I don`t bite it as much...but it still happens! Speaking of the tongue, one afternoon I was with my father at his condo complex and he introduced me to a group of elderly people sitting on some benches. He introduced me as his son who had just survived a stroke and to my surprise one of the elderly gentleman asked me the most bizarre request,  "can you stick out your tongue?" so I did and it shot out to the right and his response was "ya you had a stroke alright!" I don't think that they quite believed being as young as I was that I had a stroke even though I was walking with a cane and a gait.
Now I get emails regarding the tongue being another sign of stroke...getting help early can save your abilities as well as your life!

The weighting game

My weight has always maintained itself around 165 pounds.
With the onset of Grave's Disease (hyper thyroid) my weight went down to 145ish. Then after treatment I went back to the original 165 pounds again.
After the stroke in the hospital and not eating for six weeks my weight went down to 145ish again.
A little word of caution, gaining weight is easier than losing it.
After not eating food for six weeks and only half of my throat working I ate slow but I kept eating! Nothing ever tasted so good now after not being able to eat for so long. I had been told I may never eat again so again, I was thankful to taste food now that I could.
Two weeks out of the hospital with my newly acquired ability to eat I went from 145 pounds to 195 pounds!
Now my thyroid started acting up again and I started medication to suppress it again so maybe that had something to do with the weight gain too?
After the stroke and loss of so many abilities my exercise regime was removed as well. Jogging and bike riding had disappeared and a walker had appeared, this too likely had something to do with weight gain. It was now a workout just to drag myself up and down stairs on my ass!
I'm still working on my weight and with the removal of my thyroid and the acquisition of being able to walk and ride my bike again I hope to get back to my fighting weight!!! Right now I'm in the wrong weight division, 200 pounds is not to my advantage, I have to lose some if I want to beat my opponent...stroke ailments.

Day 1 on blog...1003 days after a major brain stem stroke

I begin this blog with hopes of passing some reassurance to others surviving life and what it brings us and more particularly recovering from a stroke.
I viewed a blog yesterday regarding 1000 Awesome Things, it reminded me of the mindset I have needed to get through almost three years now.
http://www.youtube.com/watch?v=uPE0G00XFV0
In 1983 I was 16 years old and began smoking and at the time I thought nothing about future implications or about my family medical history.
Twenty years later, January 2003 I quit smoking. Two months later I survived a heart attack at the age of 36. I thought I had a cold or fluid on my lungs. This Monday morning I woke up feeling nausea, I was short of breath, sweating, I had a heaviness on my chest and both of my arms felt like I was throwing balls the day before...my arms ached and lastly I had fear that what I was feeling was more than just a cold. I had a neighbour take me to the hospital where they established I was having a heart attack. They sent me by ambulance to another hospital for an emergency angiogram...this revealed I did have a heart attack, a block in the lower part of the heart and it had cleared itself. They sent me back to my originating hospital where I stayed for a week and was told that I should not go back to work for 5 weeks nor should drive a car or play ice hockey...something I had done since I was 6 years old.
As the years went by I ate better, exercised regularly and yearly trips to the doctor showed I was getting stronger. In 2004 I completed my first Toronto Half Marathon. In 2005 I completed the Scotiabank Half Marathon and a month later I completed the Toronto Half Marathon again.
I continued to coach ice hockey since I started in 2000 and had begun playing ice hockey again. My physical  fitness was paying dividends. At 41 years of age I was playing with 19 year old guys who bugged me to slow down.
March 2008 in the last game I played, a playoff game I scored my first hatrick in years and less than a month later I barley survived a major brain stem stroke.
One Saturday morning in mid April, I had just finished painting in the basement for hours. I was using my right arm and looking up the whole time. After finishing, I showered and dressed noticing the whole time that my right shoulder was incredibly painful...I had a headache but I had these a lot. Over the course of a few hours I began feeling weak and dizzy, I remember sitting beside the toilet to rest and then I noticed vision problems and when I went to speak to agree to have an ambulance called I just mumbled. I then remember being face down in the doorway of the bathroom, drooling without the ability to move anything...or even comprehend anything. I have a vague recollection of two women paramedics coming in and hoisting me into a wheelchair to take me down the flight of stairs to the ground floor, I remember my arm was hanging straight out and they couldn't fit me through the turn on the stairs, I wanted to pull my arm in but I couldn't they had to do it. Downstairs in the ambulance they put a tube down my throat and IVs into my arm while trying to decide which hospital had room for me. They took me to the Hamilton General Hospital where they specialize in the trouble I was having...the same hospital they took me to 5 years earlier for the angiogram.
I had an MRI on my head and it revealed some damage to the brain. I spent the next week in ICU where I thought I was just waiting to die...I remember asking a nurse "Am I just here waiting to die?" I just laid in a bed enduring the cycle of pills and doctors and the hiccups that I had for 13 days straight.
My family was advised to come and say goodbye to me and they were questioned about giving me last rights. My family at the time consisted of my two kids my father and my wife at the time.
After a week in ICU I graduated past the step down ward directly to the rehabilitation ward.
I could not speak clearly, my vision was double and I could not stand or walk or swallow or scratch my nose. They fed me through a tube up my nose for weeks until they finally decided to put a tube directly into my stomach to feed me medicines, water and a food supplement.
I quickly relearned how to roll on my side to pee into the bed pan. As time went by I graduated to maneuver all the lines and IV poll to get into a wheel chair to go to the bathroom to sit and pee. The day I went to go to the bathroom and I was able to stand and pee was a joyous day, I was as thrilled as winning the Stanley Cup!
After six weeks in the hospital, six weeks of not eating food and six weeks of reusing to relearn basic things I once took for granted I finally passed a swallowing test and was released the same day. I had a chocolate milk shake on the way home...nothing ever tasted so good!
I had gone from a wheelchair to a walker, over the next few months I graduated from the walker to a cane to no aids even though balance continues to be an issue.
A month prior to the stroke I went to play ice hockey and after the warm up skate I felt dazed and confused, and even though I was the only extra player for our team I sat on the bench for the entire hour...one of my friends drove me home and the next day I followed up with my doctor...an MRI revealed I had a mini stroke, a TIA. I was just instructed not to play hockey anymore, in hindsight I should have had some blood work done. I was a 41 year old man who survived a heart attack, completed half marathons and now had a mini stroke. After the brain stem stroke, the investigation of my blood revealed I have a thick blood disorder called Factor V Leiden, something I likely inherited from my grandmother who also had many mini strokes prior to her death...having the disorder or family history of heart disease is not a death sentence it is a foundation for us to build our lifestyles on.
I will post more about past life events but for now I think this captures a great deal.
I currently still deal with balance issues, right eye functioning and numbness in the right side of my head as well as my right arm but overall I know I am a great deal better than I was and I still have hopes of recovering more.
Leaving the hospital my therapist gave me a print from her email regarding a peer support group in Peel Halton for young stroke survivors. The formation of this group and many others like it was assisted by March of Dimes.
Six months after my stroke my father drove me to my first peer support meeting.
In 2009 I became co-chair of the Peel/Halton Young Stroke Survivor peer support group and in 2010 with the aid of March of Dimes I founded and became Chair of the Hamilton Young Stroke Survivor peer group.
I have been searching for other recovered survivors to give me some reassurance and over time I feel maybe I am becoming the example for others that I have been searching for myself.