Saturday, March 21, 2015

Putting the Possibility in Disability

Jackie Poff
Stroke Survivors Tattler
Friday, November 11, 2011

SSTattler: Re-published Nov/11 2011 -- Thanks Jackie for a
                   great article!

by Jackie Poff

Some stroke survivors remember vividly their strokes and the events leading up to and around their strokes. I personally remember very little about my stroke – thankfully!

It has been three and one half years since my stroke, which took place on a very cold morning in January 2008. But here is what I do know about that day. On January 22nd (the day before my stroke) I was taking advantage of my lunch hour at work by taking with me my daughter, Nicole, who I had had the great pleasure of hiring onto my staff. We headed out to start apartment hunting for her. I received a phone from my mother informing me that my grandfather, Jack, who I was named after, had passed away at ninety years old.

That evening our family gathered at grandpa’s house in Tofield to discuss his passing. We arrived back home on our acreage near Spruce Grove much later than we intended. We all crawled into bed exhausted and I, as always, slept like a log.

I did remember to set my alarm for 6:30 in order to give Michelle, our youngest daughter, then thirteen, a ride to school for an early morning handball practice. When the alarm went off, I stumbled out of bed and went to the bathroom to run a brush through my hair. My husband Larry, a light sleeper, followed me and asked me why I was up so early. As he questioned me, suddenly my words became gibberish and I started to fall over. Larry, wondering what the heck was going on, caught me and rushed me to our bed. I was not responding. Nothing I did or said made any sense.

Larry recognized that I must be having a stroke. He managed to call our families and yell to the kids. He threw me in the car and got me to the nearest hospital, the Sturgeon Hospital in St. Albert.

There a CT scan confirmed I was having a massive MCA Stroke. TPA was administered within the 3 hour window. However, the TPA did not work and I was rapidly losing function.

I was sent to the U of A where a mechanical revasculization or angiogram was attempted. A catheter was inserted in the femoral artery up to my brain in an attempt to “grab” the clot. This really irritated me and I thrashed around so much they had to abort the procedure. I would later find out that that procedure had caused irreversible damage to both my femoral and carotid arteries.

I was deep in a stroke haze. I was distantly aware that something was going on but I had no clear concept of anything at all.

MCA strokes are brain swelling strokes that have a mortality rate of up to 80%. By now my left side was completely paralyzed and I acquired dysphasia. Dr. Finlay called my family to the quiet room and explained that as part of a world wide study, it was possible that he could perform a radical decompressive hemicraniectomy to remove a large portion of my skull and allow my brain to swell outward.

On the third day (January 26th), Dr Findlay informed the family that he could do the surgery now and then he had other commitments. But I could not wait that long or I would be dead. And so I was wheeled down to surgery where one third of my skull was removed.

This was painstaking for my family to wait as there were no guarantees. Nicole was informed it was possible if I emerged, she should be prepared that I might be blind or deaf or worse. Unknown to me pictures had been taken of my surgery and would later be published in the VJNS, the largest hemicraniectomy in the world at that time. I was hemiplegic and had dysphasia and would have NG feeding tube for the next eight weeks. The other complications of dysphasia and surgery I could not swallow even my own saliva which I was constantly chocking on. My bed had to be kept at a 30o angle so that I would not aspirate and die of pneumonia. Larry mad it his job to make sure that my bed stayed at that angle. I began to resent him always raising my bed as I didn’t understand the logic of it.

In February I was transferred to Stoney Plain Hospital, which was closer to our house. I was quite a sight! The small hospital was not really equipped to handle me. I still had the N.G. tube and my head had started to decompress. It now looked  like half my head was missing. Larry had gone out and purchased me a helmet as instructed by my doctor. Of course he had to come back with the loudest blue helmet imaginable. I was to wear it during waking hours in both private and in public areas. In fact that helmet sat perched on my head for nearly a year until I could be scheduled back in for a cranioplasty to replace my bone flap.

Dr. Finley had been quite certain that in a year or so down the road I would stand again and maybe, just maybe, I would walk again with assistance but he was fairly sure that any recovery of my left hand and arm was unlikely.

I was a thirty-eight year old (still young in stroke terms) and now that the ‘life and death’ situation was over I could now begin the long and slow journey to recovery. The possibility of any recovery seemed impossible to me and depression quickly set in. How could I possibly work so hard to relearn what seemed like everything, when I was so tired all of the time?

On March 5th I began my in-patient rehab at the Glenrose Hospital. By now Larry had received permission to bring me home for overnight stays. I had to be back at 8 a.m. for therapy. This was a lot of driving but every night that they let me, he would come to take me home. I had a bad case of emotional labiality and cried all of the time.

Of course the wonderful staff at the Glenrose did get me standing though I still needed assistance. By the of April, my time in rehab had run its course. I was sent home. I quickly learned that attempting to stand alone was quite different than standing in the safety of the hospital with a transfer belt and help of two wonderful therapists holding me. I had a long way to go.

I was still constantly crying and it hampered my ability to carry on. Larry sat me down and told me that together we would set goals and no matter what (or how long it took) we would achieve them. The goals I settled on were (though I was not sure they would ever be possible):
  1. I wanted to drive again (something that would take me two and a half years). 
  2. I wanted one day to walk across our three acre yard (another thing that would take over two years to achieve). Though I still struggle to do it the point is, it is possible when I set my mind to do it. 
  3. I wanted resume some kitchen duty and make a roast dinner complete with mashed potatoes and Yorkshire pudding. I took me one year to figure out how to peel potatoes with just one hand. 
I have come to accept that I will never again be able to do all that I did pre-stroke. But with time and effort, it is for sure possible to carry on and have a happy fun life again.

Today, I am ready to set new goals because I believed anything is possible with stroke recovery.

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