First off, I am fundraising for personal expenses as well as a new FES Bike for Foothills hospital in Calgary, Alberta. Personally, it has been a hard-financial ride being out of work for 10 months now. I am not getting any Insurances or Governments assistance. I have great support from family and friends but day to day expenses for drugs and therapy are overwhelming. I also want to give back in the form of an excellent, what I call smart bike, tool for stroke and injury recovery. FES Bike help the brain to re-train the mussels during therapy.
Why I chose FES Bike because of the cost, there was only 1 bike for the whole hospital. Time is very limited for patients. Having another bike will help subsequent patients in their personal recovery. Having a second bike would have allowed me more time per week and helped my recovery time. These bikes are only brought in thru donations.
Over the next few weeks I will share my story. Starting on the fateful day, moving into my acute care, then Unit 58 and so on. I will provide information about Stokes, recognition and well as prevention.
I hope My Story will be informative, humorous, emotional as inspirational (it was for me).
My story begins August 19, 2016, starting off as a typical day that forever changed my life.
First off, I am fundraising for personal expenses as well as a new FES Bike for Foothills hospital in Calgary, Alberta. Personally, it has been a hard-financial ride being out of work for 10 months now. I am not eligible for Insurances or Government Assistance. I have great support from family and friends but day to day expenses for drugs and therapy are overwhelming. I also want to give back in the form of an excellent, what I call smart bike, tool for stroke and injury recovery. FES Bikes help the brain to re-train the muscles during therapy.
Why I chose an FES Bike is because of the cost as there was only 1 bike for the whole hospital. Time is very limited for patients. Having another bike will help subsequent patients in their personal recovery, a second bike would allow more time per week and help recovery time.
I will start my story beginning with the fateful day, emergency and moving into Acute Care then to Unit 58 and so on. I will provide information about Stokes, recognition and well as prevention and recovery.
I hope My Story will be informative, humorous, emotional and inspirational as it was for me.
The Fateful Day
It was 9am, Friday morning of August 19, I was working from home with my 10-year-old daughter still sleeping upstairs. I started to feel odd. It felt like a chemical was splashed on my eyes and cheeks. I laid down to rest it off and the irritation went away so I got up to do some more work. The feeling hit again 45 minutes later but this time a bit stronger coupled with minor dizziness. Once again, I laid down to rest it off. It went away again but I was starting to wonder what the heck it was at this point. It can be waved off once as a fleeting issue but twice starts the concern.
My 10-year old daughter, Marissa, awoke about 10:45AM, she came downstairs sleepy eyed just having shaken off sleep. I did not say anything about the weird feeling not wanting to alarm her. I started making her breakfast when the weird feeling and dizziness made me sit for a second, even though the feeling quickly passed, it left me wondering and a bit worried. I sent a text to my girlfriend, Lisa, asking how her day was and saying in response that I was feeling ‘weird’. Almost instantly the phone rang, it was Lisa, who in no uncertain terms, I either call an ambulance or she will come get me. I’m a typical guy, stubborn and have to be dying before I would see a Dr., bad trait we men have? I did not take her grasp of the situation lightly. You see Lisa has an uncanny ability or sense when it comes to understanding the seriousness of a situation. I took her advice and promptly called 911. I was not going to drive and risk our lives let alone anyone else on the road that morning.
Calgary is a large urban center with excellent police, fire and ambulance services. The ambulance arrived in about 6 min as I kept on the phone with 911 dispatch until they arrived. I was walking and talking ok and not going through an episode at that point. My speech was normal but walking was slightly affected and needed assistance to the ambulance.
Paramedics were professional and courteous. After the usual round of questions, what are your symptoms? Any existing health issues? Are you on drugs or alcohol? Medications? I described my morning. The burning in the cheeks and the dizziness happening over and over (4 times at this point). Yes, I am a diabetic still trying to get my blood-sugar levels normalized. No, I was not hyped on drugs nor am I even an occasional drug user. A drink, socially, every now and then. Typical month is 3 drinks total. Yes, for medications for the 3 diabetes drugs. Metformin, which I have been on for years. Forxiga, which I was on for 8 months and Onglyza, which I just started 12 days before. They hooked me up to EKG and ran some other diagnostics. Heart rate fine. Blood pressure was high, 170 over 101 (Interesting, I have never had high blood pressure). They asked if I wanted to be admitted. I said yes, something is weird, I just felt ‘wrong’. There was no one to watch Rissa so she got to go for a ride in the ambulance.
Several months later I asked if her first ride was exciting but she said she hated it, seeing her dad, the pillar of strength in her life, in that situation. She said she felt scared, not being able to help and not understanding what is going on. It still brings tears to my eyes thinking about what she must have endured being there first hand. Watching what I went through. Seeing me lying there, helpless and uncomfortable. Wanting to help but was not strong enough. She was a trooper through it all, no complaining or whining. I am so proud of her.
I walked to the ambulance, assisted, and rode in a seat not even the bed. I was dizzy but not so much to be bedridden. The trip to the Rockyview hospital was quick considering we were not under sirens. The paramedics did not know what was wrong and my vitals were stable. During the ride I had another episode. This time I was weak and dizzy. By the time they brought me into emergency I could not hold my head up. I could not talk properly as my voice was slurring. Something was wrong! It was around 1pm when I got into a bed. A nurse noticed the distress in Marissa and took her out of the room to a side area to color and get her mind off the situation. Lisa showed up a little later after calling local hospitals and figuring out where they took me.
At this point I was feeling weird, dizzy, nauseated and having even thrown up at one point. A feeling of wrong, where I just could not lay still, uncomfortable in any position and was very ‘jittery’. I would constantly shift positions in an attempt for easing the bad feelings. My voice was slurred to the point I could not talk well. Couple that with weakness in my left side (arm and leg). I could not walk unassisted.
The hospital ran a flurry of tests, but the Dr. came back and revealed there was nothing they could ‘physically’ find wrong with me. I was stunned and argued there must be something wrong. I do not argue with doctors but I knew there was something very wrong. At a later date I will go into the arguments in detail (what was exactly said and done). It angers me even now what was said and I don’t want this to be a verbal tirade of negative emotions. I may be calm enough later, but needless to say, the Doctor sent me home with the paraphrased suggestion to see a ‘good psychiatrist’. Yes, they sent me home only to have my major stroke later that evening on the couch.
November 2017 Update
I am ready to tell of my first trip to emergency experience.
The first arrival at the hospital I could barely able to hold up my head, feeling weak and extreme discomfort. I was having episodes of dizziness, extreme weakness and slurred speech. The episodes were 30-45 minutes apart and would last for about 20-30 minutes. Something was very wrong. I was thinking this may be a bad sugar low episode, I have had them before and they are similar but never this severe. My first emergency Dr. was a younger gentleman who politely asked me to describe how I was feeling and any changes to medications or life events. I told him my only theory was blood-sugars out of whack because of my new diabetes medicines. That was the only ‘change’ recently that may account. He sent me for a few tests, blood work to check my sugars etc, blood pressure, heart rate and oxygen levels. My sugars came back high 12.4, not low with A1C of 9.3 (which is not good). So, it is not sugar low and with sugar levels this high it is not good but way low of the danger level of high 20s. Blood pressure was a bit high at 140/89, but not too high, pulse was good and steady at 65 with 98% oxygen. This is when I went for a CT Scan. It was not long after the scan when my original doctor came in with the Lead doctor on duty, Dr. Head. Lisa had arrived prior to that point (worried but holding up well). Dr. Head asked about my medical history and contact information to my family doctor and diabetes specialist. Lisa brought Marissa and myself some food (I had not eaten). I was having a good moment and was able to sit up and eat something.
They sent me for another CT Scan but this time with an injection that will highlight some areas. Dr. Head came back and I could hear Lisa and the doctor talking in the hallway. I heard the words “Psychiatrist” and “Nothing physically wrong”. Dr. Head came in to see me and said “I talked with a Dr. Jain, we think you are just not wanting to take you diabetes medicine. I cannot find anything physically wrong. The CT Scan was clear. I have a phone number for a good psychiatrist”. I was stunned, all in my head, I argued back saying there was something wrong and at that exact moment I started having an episode. I said, “See, my voice is slurring. This is not in my head, something is wrong.”. She went through a series of simple physical tests, balance and hold up my arms. I was a bit weak and dizzy but not enough to stop me from performing ok. She said, “Well I cannot find anything wrong at this time.” And left.
The whole episode left a bad taste in my mouth. Lisa and I were both upset. In my head??
At 4PM, Dr. Head came back, about an hour later. At this point, the episodes were not getting better, I was nauseated, weaker and dizzy. My speech was slurred and it was not abating like before. Doctor said, and I quote, “You have two choices at this point. You can either stay on this cold hard bed or you can go home to your nice warm bed because there is nothing I can do for you. “. Not much of a choice. Lisa agreed to get me home but I had to prove I could walk. With a nurse on one arm and Lisa on the other, I walked around the ward. That was good enough for Dr. Head and she sent me home stating again she knew of a good psychiatrist that could help me. Yes, I could barely walk or talk and there was nothing she could do. I went home. I now realize this was the worst decision but I trusted the doctors. I grew up believing not to argue so I just assumed they knew what they were doing. Boy was I wrong. The irony is not lost, Dr. Head said it was “All in my head”, well she was not wrong, it was all in my head. A freaking Brain Stem Stroke! And she refused to listen to the patient who kept repeating “Something is wrong”. A Brain Stem Stroke is a rare type with odd phasing in and out. Non-detectable through CT Scan due to old technology and not being detailed enough. Only an MRI is detailed enough to detect all blockages. Dr. Head could have sent me to the Foothills for a verification. It would have been easy, but instead she chose to ignore my claims and stick to “You just don’t want to take your medicine”. I am an adult, if I do not want to take a drug, I will not. And I would never take time off work to take a trip into emergency because “I don’t want to take my medicine”. Just ludicrous and if she would have taken the time to ask more questions she would have realized this. Another interesting fact I found out is that Dr. Jain, my diabetes specialist, was apparently away in Australia at the time Dr. Head said she talked to him. Someone is lying so I wonder who she talked to? I am still angry, I did talk to a lawyer, but in Canada it is hard to prove malpractice so that is the end of that. One day I hope to be able to remember this without anger but right now, living day-to-day with my stroke, it is still too painful to forget…
Later That Day
Lisa, Marissa and I are home from emergency. It was difficult to get into her car for the trek home but with help I managed. The ride home was pure agony. I was uncomfortable and nauseated. We were almost home when I puked again down the side of the car and a bit inside because I did not have the strength to hang my head out the window. I rarely puke, my body does not give up its food easy, but I could not help it. I felt bad about messing Lisa’s very clean car. With Lisa’s much needed assistance I got into my house and onto the living room couch. Not the most comfortable but I could not manage the stairs to my bedroom. Laying on the couch I am still very uncomfortable. The symptoms have not lessened as they seemed to be getting worse.
Lisa gave me an Advil to help ease my discomfort. Good thing she did because that may have helped lessen the long-term effects. Lisa left to wash her car and pick up some food for everyone. At this point I have not eaten for 18 hours and what I did eat was on the side of her car. She gave Rissa my phone and stayed in contact. We still had no idea what was going on and Lisa was not going to take any chances. Rissa was still being my little angel, doting on Dad, getting me water or helping me with the pillows in an attempt for some comfort. At some point I drifted off. I was told that in my sleep my body was jittery and would shake and spasm constantly. This is when I had my big stroke. I was barely aware at this stage.
My eldest daughter, Myranda, 18, came home from her camping trip only to find me on the couch in bad shape. With Myranda’s help, I attempted to get to the washroom. Failed miserably, I was just too weak. I had to resort to pissing in a bucket. Lisa came home and even with help from both I was unable to get up other than a sitting position. Not good, the decision was made, call the ambulance again. They arrived quickly with some much-needed help. The fire Department arrived with the help of 3 strong men to get me outside and on the gurney. I could not walk as my legs like were like Jell-O. Strapped to the bed for this trip as I couldn't sit upright. After some tests (blood pressure, heart rate and blood work), which seemed to take an eternity, we finally got on the move only to stumble first on the scene of a car accident. It happened just minutes before and apparently paramedics are required to stop and give aid until another ambulance arrives. They did not deem me as an emergency because my vitals seemed stable (still no clue as to what is wrong). A little late getting to the Rockyview Hospital. The paramedics had to bring me back to the same hospital because of something about still having an active/open file.
Lisa dropped off the kids at their mothers and came to the hospital. This time around there were no tests and no doctors coming in to see me. Apparently, they had all the information they needed. I actually felt a little ignored. Lisa was exhausted as this was now the next morning. I sent her home saying I was in good hands here so she should get some rest (boy was I wrong). I sat alone, on that oh so wonderfully comfortable hospital bed, for hours. I was still feeling off and my body was still jittery. No body position would allow me comfort and I was getting weaker. Hours went by, still no doctor came to talk to me but I could hear their conversations on the other side of the privacy curtain. Yes, they seemed rather busy, busy talking about their vacations, in particular a wonderful European trip. Yes, too busy. More hours went by. I was obviously in good hands and missing Lisa at this point. I was thirsty but too weak to stand, or even shout out. No doctor and the last nurse to look in (that I noticed) was at least 5 hours previous. Dry mouth and uncomfortable, I sat there for over 6 hours before a doctor came in with an entourage of new med students to announce, “I think you had a stroke…I am going to send you to Foothills Hospital.”. My opinion but the room service at the Rockyview needs a little service training. I had not eaten for over 24 hours (not counting the lunch I purged on the way back from the hospital the first time). Nothing to drink for hours. Remember, I am diabetic!
Just after 8AM on August 20, I was on my way to the Foothills. One item to note, when the paramedics came to move me, one guy grabbed my left leg to pull me onto the moving gurney but that pulling proved very painful. A sign of leg and hip issues to come. We arrived in good time with no delays in the traffic. The hospital must have called Lisa because she knew when and where I was moved. I would like to thank the paramedic (sorry do not remember your name), he got me something to eat and drink before he handed me off to hospital staff (a real lifesaver in more ways than one).
I was given another round of blood tests and booked for an MRI. I am sure they were looking for toxicology because they asked a lot of drug use and sobriety questions. Those tests came clean of course. I explained my medical history and the fact that I had just started taking a new diabetes drug, Onglyza. Lisa arrived looking better but tired (not sure she had a worry-free sleep or even slept at all). I explained what happened, from the chemical burn feeling to the weakness to being sent home from emergency once. We discussed my symptoms and my slurred speech was obvious.
Two medical students showed up from the neurological team to take me for an MRI. Lisa could go with me which turned out to be a blessing. MRIs can be lengthy tests and I found that out the hard way waiting an hour and a half. I was so thankful for Lisa, she saw my discomfort and propped up my legs with her arms to give me some relief (especially my left leg). I am sure it tired her arms quickly, I am not a small person, but she bore the strain and pain without complaint. Always worrying about how I was. Such a loving, caring angel. It became interesting when I needed to go to the bathroom in that long wait. There were no bathrooms around and no big guys to help me. The MRI attendants were so helpful, they set up a screen in the hallway for some privacy and got me a urinal for my relief. The MRI was difficult, sitting in the dark, trying to lay still. My body was still so jittery, it was like the muscles were constantly twitching and spasming.
With that ordeal over, it was back to emergency to wait. After a few hours, Lisa by my side, the neural students arrived and started talking admittance to the hospital. Unit 111, Acute Care, next available bed. At that point, I asked what they thought was wrong, I have not heard anything from the Doctors. I remember distinctly what she said, in a matter of fact tone, “You’ve had a stroke.” My world just dropped out from under my feet. I was reeling both mentally and physically. Up until then, I was calm, cool and collected, but after those three simple words, I could not control my emotion. No, not a stroke! I am only 48! I laid wracked in crying for a long while. I could not believe it. I was praying it was just a severe sugar-low episode but this is worse than expected. So very life changing.
Signs of Stroke
Strokes come in various degrees and areas of the brain. Those factor in turn determine the severity and affected areas. In talking with several other Stroke victims, I noticed that everyone was different in many of the effects except for one common factor, a feeling of wrong. Some passed out, others went into a coma, some just got dizzy and others lost vision or hearing. Everyone felt wrong in one way or another but some did not know or even fathom what was happening. It fell to others quick thinking and actions to see something was wrong and react. These points are to help everyone identify a potential Stroke, in yourself, a stranger or a loved one. If I was pre-aware of these points I may have been able to stand-up to the DR and not have the major deficits I have today…if only.
Common Signs of Stroke
1. Sudden numbness, tingling, weakness, or loss of movement in your face, arm, or leg, especially on only one side of your body.
2. Sudden vision changes.
3. Sudden trouble speaking.
4. Sudden confusion or trouble understanding simple statements.
5. Sudden problems with walking or balance.
6. A sudden, severe headache that is different from past headaches.
(from Alberta Health Services LINK https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=hw224638)
Government of Ontario has another warning
(here is the LINK. https://ontariostrokenetwork.ca/blog/heart-stroke-foundation-launches-new-campaign-help-canadians-recognize-signs-stroke-act-fast/)
If you, or someone you know is experiencing one or more of the symptoms get help immediately. These signs can happen anywhere anytime and not to ignore the warnings your body is giving you.
Types of Stroke
There are three basic types of Stroke. A bleed, blockage or a collapse.
Bleed is where the is a tear or break in a blood vessel. Blood will bleed in the brain not getting to where it is supposed to.
Blockage is where something in the blood has blocked a blood vessel starving another area needed blood flow.
Collapse is where the walls of the blood vessel constrict in a way that reduces or stops the necessary blood flow. This will in turn starve tissues further down the path of required blood flow.
I was told that a blockage is the most common but all can be equally devastating.
Area of the Brain and Potential Effects
Depending on where the Stroke is located will determine potential effects. One item to note, left side of the brain can control right side of the body and vice-versa.
Other Great Stroke References
Family DRs of UK: http://www.familydoctor.co.uk/unassigned-articles/stroke-types-of
NY Times - In-depth Stroke Report: http://www.nytimes.com/health/guides/disease/stroke/print.html
Pintrest - Stroke: https://www.pinterest.com/explore/stroke-recovery/
The Doctors have determined after reviewing the MRI that I had a small blockage in the Brain Stem. Also known as a PONS Stroke. The brain stem is basically where all the signals run through to the lower body and it does not take much of a blockage to cause major damage. Death can occur easily if there is a blocked signal to the heart or lungs so I count my blessings I am still here. Most PONS Strokes effect the right side, approx. 85%, but for me it affected my left (and I just happen to be left handed-go figure).
I will go into my deficits later.
Unit 111 – My First Days
My first few days are blurry memories in a haze of pain and fatigue. I am a side or stomach sleeper and hospital beds, in the shape I was in, are not conducive to my form of rest. My only sleep was when I was so fatigued my body could overlook the discomfort. The first night I could roll onto my side, process took about 30 minutes, but I did it only once, after that night I was too weak.
They had us packed into the small room, about 4 per room. I do understand why, the treatment we got was excellent. Having us packed in was easier for the nurses to watch over us. Anything I needed was just a click away and the nurses were very prompt to respond. I remember nurse Kelly the best, he always had a smile and upbeat demeanor, pleasant and compassionate, he made my first few days bearable.
I remember waking up to having friends and family surrounding my bed just inside the privacy curtain. The support and love I received was overwhelming. Lisa spent most of her spare time by my side. It is one thing to be a Stroke patient but I am sure it was equally hard for her to see me day after day in that state. That is love. My mother, brothers, sister in law, cousin, kids and friends all came to see me. It was the support and love that help me through that time.
I got into Unit 111 in the Foothills Hospital in a bad state but I took a turn for the worse. This is not uncommon, where the worst is yet to come, so if you are ever in this situation this is normal progression of a Stroke and recovery. When I got admitted my body was weak, voice slurred and barely moving my left side. In two days, I could hardly speak, barely move (including my right side) and completely paralyzed on my left side. I could only talk by pushing air thru my vocal cords, crude sounds and kudos to Savannah, cousin Steve’s daughter, for being my best interpreter. I would slur out some sound and she was excellent at understanding and interpreting what I was trying to say. I was exhausted but my spirits were upbeat, I was joking and had my visitors smiling/laughing.
There was one touching moment when I awoke to finds my kids surrounding my bed. Myranda, Deven and Marissa. Deven was holding my hand and crying. You see, Deven and I, we had a kind of falling out a couple of years back and hardly saw or even spoken to one another. To wake up seeing them all and Deven holding my hand was so touching I just started crying and it took me a while to compose myself. I hardly ever cry, growing up it was 'what you crying for?' and it would earn me a cuff, so I learned at a young age to keep it in. Well that has changed, Strokes have a way of doing that to a person, so now I cry often (even as I am remembering and writing my story).
As a side note, I must admit it is very weird when you can see your hand, feel everything, every touch every sensation, but not have the ability to control said hand. I would stare at it, try to will it with every fiber of my being, but it would just lay there like a lump of lifeless flesh. When I yawned it would react by raising up and stretching (still to this day), but no matter how hard I tried it would not listen. Same with my leg and toes. People found it humorous to tickly my lifeless leg only to have it kick in autonomous reaction but I still cannot move it on demand. Very weird and scary feeling indeed. On the good note, it is usually a good sign for recovery when you still have sensation and automatic reactions.
Along with speech, my swallowing was affected. I could not move my tongue nor voluntary trigger swallowing. Involuntary swallowing would still work but less frequently. This led to some messy occurrences until the nurses rigged up the suction tube (like the kind the dentist’s use) to run constantly and give it to me so I can clear my mouth as necessary. Yes, I had a sucky, another item to joke about. Trying to find the humor or good in all this bad.
I had excellent doctor support. They came to see me every day (even on the weekends) to check up on my progress. Their big concern was my swallowing. It is very important that no food or junk goes into my lungs which could lead to pneumonia. They gave me the option of a feeding tube or wait without eating for two days until I can be assessed by a Speech Therapist. If I can show to the therapist that I can swallow my food and pills then ok but nothing to eat until then. At this time, I was getting liquids intravenously. Two days is a long time for a diabetic go without food, so I agreed to the feeding tube. Two nurses showed up for the procedure, one in training. It seemed I have a magnet for people in training so I agreed to let her try (I am one to allow learning experience whenever opportunity arises). Ouch, it was painful two unsuccessful attempts until finally the third got the tube into the correct spot. Let me tell you, it is a very weird feeling to have a tube in through the nose terminating in the stomach. It would bug my throat with the feeling of a foreign object lodged making me gag and cough on every swallow.
From the first day on Unit 111 I could go to the bathroom on my own, but as I took a turn for the worse, even that stopped working. Kelly was very understanding and let me try on my own until I felt I would explode. It was about the second day when I agreed to have my first catheter, an In&Out (I&O), the nurses called it. I always prided myself with having a big bladder, well I proved it that day. It was not a pleasant feeling but Kelly was experienced, gentle and very surprised when I filled multiple containers (over a liter and a half, wholly bladder bat man). This I&O requirement went on for the next several weeks.
My Stroke Deficits
Here I will list all the issues my PONS Stroke caused.
· Paralysis of both left limbs including shoulder, hand, foot, and toes. Still had complete sensation that was equal on both sides.
· Semi-paralysis of the tongue and throat. I could move the tongue a little but not full movement nor dexterous to speak. Speech was just pushing air thru vocal cords that were hardly working.
· Weakness breathing to the point I could not voluntary breathe deep.
· Decreased Circulation where I am cold most of the time. This was foreign to me, I used to run hot, a furnace where I was comfortable outside in winter in shorts and t-shirt to -18c. Now it takes me hours just to warm up or be warm at room temperature.
· Running Nose where I was constantly dripping and in need of Kleenex. I would keep a towel handy on my hospital bed for this reason.
· Muscles in the face were not even. No drooping, just reduced range of movement.
· Fatigue and general weakness.
· Decreased bodily functions where I needed help to go to the bathroom (I&O as well as suppository). I could still feel all the discomforts of not having regular functions (pressure, cramps and bloating) but it would not work.
· Emotional filters were not working, meaning my emotional responses were not appropriate to the situation or exaggerated. I would cry on a dime or laugh uncontrollably. Speaking of laugh, when I did, at first, I just could not breathe, then it moved to a “Horseshack” (Welcome Back Kotter 70s TV show) laugh. Good that I am not an angry person, so this was not affected, I am still good humored and outgoing (less so but not an angry guy).
· Loss of appetite and thirst. I no longer feel hungry or thirsty. Both good and bad.
· Neurological Pain (mostly in my left leg).
This was all by day 3 of my Stroke. What was not affected, thank you God, was memory, or brain function. My brain was intact. I could hear, see, think and remember like before. All my deficits are and were physical. So, in a way I am blessed, if I was to have a Stroke and live through it, Brain Stem Stroke is a lesser evil.
Another aside; having a Stroke is a very humbling experience. I could no longer dress, sit-up, roll-over, feed, bath, clean or go to the bathroom by myself. From someone who is proud and was a rock for everyone it was a very difficult time. Difficult to have to rely on someone else now for the simplest of things.
Therapy on Unit 111
It was in Acute Care that my therapy started. I had regular visit from a couple of great therapists who would help me to sit up, reach for objects or even try to stand. My good leg could not bear my full weight and I was unsteady (I always did try my best though). At the time, I did not know, was more of an assessment than therapy. They were assessing both my physical as well as my mental state. They were seeing if I would try or go into a shell and not participate. Apparently, I was told that Stroke patients, as opposed to accident patients, tend to show increased determination for their recovery.
I guess I was a good candidate for the next step; Unit 58 in Foothills Hospital, Calgary’s premier Stroke and Brain Injury recovery unit. I was told they had an opening and that I got the privilege to be chosen after only 5 days. I was both excited and cautious. The nurse made it sound like it was special to be chosen so soon. Other ideas were floating around like Fanning Centre (but I was a little young, the average age is 63). Also, Doctors kept a close watch and I had shown signs of slight improvement. I was not a huge threat for a repeat Stroke.
They had addressed 4 of the risk factors;
1. Blood Pressure: which they monitor 3 times a day. I was normal-low every time so no medication required.
2. Diabetes: which was checked before every meal, and while on the feeding tube my levels were good (5-7). I was still taking Metformin.
3. Fats: which was reduced risk by giving me Lipitor every day coupled with the low-fat food I was getting through the tube.
4. Blood Clots: which was addressed by a strong blood thinner warfarin. Dangerous for mobile healthy people but a huge risk reduction for non-mobile bedridden patients like me. It was a nasty evil, it sure left bruises, but once again better than the alternative.
Finding a root cause for a Stroke can be near impossible. For me is was “You’re a diabetic so it was diabetes, aggregated by stress levels”. They don’t know for sure. That is why they stress the importance of these four factors. Tackle those and keep your stress levels down and you should not repeat, but because they do not know the real cause they treat them all aggressively. “Better Safe Than Stroke”, I would say.
Wednesday, I was moved to Unit 58, the 5th day post Stroke. Never got the chance to say good-bye and thank-you to nurse Kelly (if you ever get to read this know that your personality helped me through trying times, don’t ever change, it was refreshing).
Unit 58 – The First Day
My intake nurse was Dai. Nice guy with a great sense of humor, while still maintaining a professional attitude, and excellent service. My mother and her boyfriend, Bob, my brother, Trevor, and a good friend, Nathan, were all present. I was lucky to have Nathan visiting me, he was between jobs at the time so he spent much time with me at first. A roguish character with a sense of humor. When Dai was taking some personal information, Nathan let it slip about my nick-name “Porker”. This was a name from my teens that stuck with me (mostly call that by my brother, Wade, he was always thin). Dai got a big smile, looked at me and my 190 pounds at just over 5-10, and said “hey Porker”. We all had a good laugh and never was I ever offended. Dai even wrote “Chris – aka "Porker” on the board. Funny yet respectful but the myriad of other workers would not understand or see the humor in writing Porker. It stayed our private joke and he would call me Porker every so often when we were alone.
The facilities available on Unit 58 were superb. Kitchen with crushed ice/water dispenser, a fridge stocked for the patients (snacks, juices 24/7), fridge for patient food from outside, huge flat screen with satellite and games/puzzles. Every week a wonderful volunteer would change the flowers to keep a fresh ambiance. Unit 58 also promoted social gatherings and not just for dinner. All part of full recovery. Down the hall there were hot blankets and a patient only washer/dryer (bring your own soap but free to use). My room was shared with two people and one-bathroom, limited privacy, but the room was huge with an awesome SSW view of the Bow River valley. There was a motorized lift in the room. I was transfer via lift only when I arrived. I eventually had to be moved to the other side of the room where the lift base was so it could recharge. The beds were interesting, a multi-zoned air bladder, that would inflate/deflate different zones based on pressure. Nearly every move resulted in an automatic pump kicking on for a few seconds while it adjusted. It was funny having a visitor pop down on the bed only to have it deflate and them thinking they popped it. Like most hospital beds, you could raise it up/down, tilt the head or the feet or both. There was also a setting to “firm-up” the mattress which I found very handy later when doing bed exercises or activities.
Dai pulled out the IV but kept the feeding tube going. That did nothing to lessen my constantly running nose so they also set me up with my sucky. What it did do is stop my fluid intake and after a few hours I sure noticed that. Getting dry-mouth but oddly enough not thirsty. I know I needed water but that common feeling was not there.
The first day was going fine, settling in but I was parched. I needed water and badly. You see, due to my limited swallowing capacity, I could only have liquids with nectar-like consistency. These thickened fluids are easier to swallow so less risk of pneumonia. Ya think they would have water…thickened water, no. I was left with two choices thickened orange or thickened apple juice. Yes, let’s give the diabetic liquid sugar…watch me go into sugar overload, zoom. I had no viable alternative, so I went for the AJ. You guessed it folks, my sugar levels went to 12…I was doing so good 5-7 for days and now this. Talk about stress levels when I am in here because of my diabetes caused stroke and the only liquids they have is sugar. I drank it sparingly and my sugar levels still sky-rocketed.
My decline in fluid intake lead to other issues. Everyone had gone home, it was late. The guy in the next bed had his TV on. I could hear the low volume mumbling and see the screen flicker and flash thru the privacy curtain. Couple that with not being able to get into a comfortable sleeping position (I am a side sleeper and I cannot roll over). Added was a great thirst and now getting pains in my left leg/knee. I was told that I would get pains and it was all part of the healing process. I was also told to ring the bell for the nurse and like magic some wonderful codeine will arrive to whisk said pains away. 2am, I had been lying in bed, awake for hours, suffering and could not take it anymore. I rang the bell for the nurse and the magic pills. Dispatch came on but they could not understand my attempt at asking for pain meds. She chimed she would get my nurse. Great I thought, relief is on the way. I waited, 2:15, nothing. 2:30, still nothing. I was thinking all the hype about Unit 58 was hog-wash. This is my first day on Unit 58 and I am waiting like this. I was used to Acute Care Unit 111 where I never waited more than 5 min after ringing the bell. 2:45, all quiet except for the constant TV. I rang the bell again. Once again, a nice friendly angelic voice chimed up and agreed to “Send my nurse”. 3am rolls around, nothing. 3:30…3:45. What is running thru my head was “Why did I leave 111 for this…outrage”. Is this how people are treated on Unit 58?
At 3:53 a nurse comes walking in. Finally, nearly 2 hours. She sees that I am awake and comes over to ask me what I need (I thought I called for a nurse?). In my broken speech, I attempted to ask for pain-killers. We were having a struggle communicating but eventually she said, “Oh you are in pain?”, I nodded vehemently (finally). She said, “ok”, then stopped turned to me and added “Next time use your proper voice”. I was stunned, I was outraged. MY PROPER VOICE, I was rendered speechless (which is no mean feat, getting him to shut-up is the trick). I was so upset that I could not respond, just vibrating in anger. My mind was racing…Does she not know I had a Stroke? Does she not know my throat and tongue are semi-paralyzed? Does she not know this was only 5 days ago? I was still speechless when my pain-killers finally arrived (4:11am).
I never did sleep much that day (nor any of the next days) but at least the pain went away. I sat there for hours think of some witty comeback, some set of words that would convey my feeling of injustice. My Proper Voice, sheesh. Well, it took me months but I have my comeback. It is something that encompasses all nursing and the treatment I received. My comeback is “THANK YOU!”. Thank you to all the nurses out there. You have a messy and often thankless job. I now have a better understanding and appreciation (and Nursing Assistants and Students – thank you) for what you go through in a given day. The trials of the people you help get their lives back with compassion and understanding. Yes, I may have been mad, but it was seriously short lived as nurses and assistants helped me with all the, often messy, tasks in my day to day. Dressing, bathing, eating and going to the bathroom.
March 3, 2018 (Updates 1,2,3)
Thursday – My First Full Day on Unit 58
As you can guess, I woke up early morning still feeling the effects of very little sleep. A typical day starts at 7:30ish, dependent on the nurse schedule and how much effort it is to get a person ready. For me it was much work. There was the daily cleaning (in bed for now), the fumbling attempt at dressing and of course a lift from the bed to the wheelchair. I was told by my nurse that “I must eat in the dining room with the other patients!”. Found out later this is not true but I understand the reason, Unit 58 is trying to promote a social interaction in your recovery. Some people do better around others, some like to avoid people but generally us Humans are social animals. And the social stage allows one to share their story, everyone is in here for a similar reason. Some are better some are worse but everyone has something to share, if they are willing, that may help you in your personal struggle. For me I was willing to listen and learn.
My first breakfast, I was both excited and trepidations. Finally get to eat real food…woot. The food was blended but better than gruel via feeding tube. On the other hand I was very self-conscious. Self-conscious about how I must look, if it was anything like I was feeling, awful. Pale and sunken eyes from lack of sleep, I could not hold my head up for any length of time as well as the obvious paralysis and clumsiness. Eating was a chore. Swallowing was a slow process trying to get my food into the right position in my mouth to trigger automatic swallow was not easy. Trying not to let anything down the wrong pipe, it did take me a while.
Breakfast, of which I had no choice consists of;
· Eggs and Toast
· Cream of Wheat
· Carrot Cake
Everything a Stroke suffering Diabetic needs...all freaking carbs. My sugar levels skyrocketed to 15.
I was very appreciative of being able to eat, get back some dignity, but this is not healthy. Diabetics 101, don’t feed Diabetics carbs (thought everyone knew). I did not say anything and finished a good amount. Even the Ensure was full of carbs, 28 grams. And other fluids consisted of a thickened lemon water. Found out later that the “lemon Water” had a sinister secret…made with high-fructose corn starch (one of the deadly sins). Might as well have given me sugar water. More carbs, and this was their diabetic diet. I will stress, I had no choice in my meals at this time because I was on blended only. I received what the nutritionist set as the blended items for every meal. There were no choices, well not true, I could have chosen to not eat.
I was a messy process but I made it thru my first meal in the common area. I could not talk well so I kept to myself and went about my business. Later, when I had visitors (which was often) I would take my meals in my room. Gave me a chance to interact with my guests. For the first two months I would eat most lunches and dinners with my guests in the quiet of my room. Breakfast was taken in the common room and only missed if I was feeling too unwell.
With breakfast out of the way, it was time to start my rehabilitation. They do not waste any time.
Therapy – My Team
For Alberta Health Services they have 4 types, or programs, for post Stroke or Brian Injury.
1) Physical Therapy (PT): Working on core including balance for walking, standing or even sitting up (to start). My physical therapist was Amber. She was pound for pound one of the toughest persons I have known. She is very professional, good humored and a damn hard worker. She handled my, not so small body easily, while in the small frame of hers. She was great to work with. Our running joke was that, her being so small in stature I was always worried about falling and flattening her so at times I would opt for a railing for support instead of her hand.
2) Occupational Therapy (OT): Working on arms, shoulders or hands with the goal to get the patient able to function at home. Cooking, dishes, laundry cleaning are all part. Depending on your job, the therapist would focus on related tasks more. For me it was fine motor skills with my left hand. Writing, typing or manipulating small objects. Michelle was my OT. She says she is a tough hombre (don’t worry your secrets safe with me). Understanding, compassionate, educational as well as being very professional. It was great working with both Michelle and Amber, I learned much about how the body (is supposed) to work.
3) Speech Therapy (ST): This is for patients who have various impediments in speech, both forming the words and vocalizing, as well as swallowing issues. There is a distinct difference between knowing the right words and being able to speak it. For me the difficulty was in the vocalizing. My brain knew what to say but my throat and tongue had partial paralysis. I found out you have two set of vocal cords. One for your regular voice, and a falsetto for higher pitch. I really stumped my ST because my falsetto cords worked amazing well but my regular cords where a problem. I could sing and not talk that well at the same time. She even referred me to a specialist. Sarah was my ST. Very funny, outgoing and great to work with. We had many excellent sessions laughing and singing. It was refreshing. She would say “A man should talk like this” …as she tried to mimic a deep male voice. It was hilarious (we were both laughing). Still to this day, when we visit we have a good laugh about how high-pitched I sounded at first.
4) Recreational Therapy (RT): As part of life is being able to enjoy said life, this therapy was geared to enjoyment. They had a cornucopia of activates from Wii to dice to drawing to puzzles to pool and air hockey. I always enjoyed my time. Emily was my RT. She was a hoot, fun friendly and outgoing…with a strong competitive streak. We got along because, while being a good loser is part of playing, I play to win. I remember the first day (and pretty much every day), Emily was to assess my cognitive ability. She pulled out a tablet and had me play a mind game to solve a logistical puzzle. She confessed she was impressed when I would analyze the layout for a couple of min then solve the puzzle efficiently. We went on to play a simple memory game. Match the symbols on face down cards where you can flip two cards, one at a time and if it did not match, flip both back. I won more often than not. Emily confirmed, no issues with cognitive function. After the first day I got to play crib, fishing on the Wii, and taught Emily euchre. The funny part, Emily was telling me of this great game “monopoly deals” but refused to start playing until she beat me at euchre. It took a few weeks before she bested me but it was fun few weeks (I was not about to play any less hard). In the end, Emily was the Champ at Monopoly Deals and hand-made me a cool medal for participation (which you can see in my profile picture).
I need to talk about the other persons who helped me as well. The Therapy Assistants (TAs).
For PT, my TA was Mira. Wonderful to work with, so much therapy experience. I got to spend nearly every morning, bright and early to go for a brisk walk with her. She would take me down long hallways, up/down stairs, and through crowds. This time allowed me to build up my balance and constitution. Mira was such a nice person. In our many conversations, she asked if I liked Borsht, I said I tried it but did not care for it. “Well, you need to try it the Polish way”, she said and the next week she brought me in a container. It was good let me tell you. Working with Mira was excellent.
OT-TA was Svetlana, a sweet lady with a big genuine smile. You know, in your life there are people you meet where you just meld. Svetlana was one of them, beautiful both inside and out, quick with a kind word and encouragement. She was a pleasure to work with and get to know. I spent a lot of time, having negotiated extra therapy time, with her. She saw in me the “fight” to better myself and not lie down to die. She asked to work with me when it came available. She was motivational to work with. In my four months, we spent hours together and shared some life stories that formed a bond. I cannot say enough about her and her positive impact on my life. A wonderful earth-angel.
I also took parts in the Extends program. This was an in Unit additional exercise and therapy program. Kat and Karin ran the program. They would visit me in my room and at first and get me to perform additional exercises in bed. Exercises that would target specific life actions, sitting up, standing up or even moving about in bed. Later in my recovery they would walk with me either to dinner or around the unit. During recovery the risk of a fall is great so Kat or Karin would shadow me to make sure I never fell or had an accident. Nothing halts recovery like a bad fall, break a bone or crack my skull. So, during my recovery most of my walking was assisted until I could show I was not a risk for falling.
Therapy – My First Day
My first day consisted of meeting the team and having them assess me. I worked with Amber, Michelle, Mira and Svetlana. They hoisted me out of my wheelchair and onto the plinth (a mat that can be raised or lowered like a bed). With Mira and Svetlana to hold me upright the other two took me through various simple tasks like reach for a block, try to hold it, move your arms/legs, kick and even attempt to sit-up unassisted.
I would try to perform everything but I was in bad shape. The prognosis was not good which I would find out later. One item I did notice, when asked to do something that was both simple but beyond my capability at that time, I would laugh. Instead of getting frustrated and give up, I would dig in and try my best and laugh the whole time. Reach for this with your left hand, Michelle would ask…I would try, try and fail, laughing all the way (it is snowing outside and I could not resist). Apparently, the ability to control your emotions is something that is also impeded from a stroke. The doctors explained it like the nerves firing in your body but there are also emotions firing. After a stroke, the brain has a hard time reading and properly responding to these emotions. Like my emotional filters are all out of whack. This will lead to situational, unappropriated, emotional outbursts. Like when the therapists made it more difficult, laughter or if I saw or thought of something sad, crying. And my ability to level the emotions was hampered. I would laugh too hard, or cry too easily. Wow, this sure does take something to get used to (which it is month 14 post stroke and still hard to control, although better).
My therapy schedule was PT, 9am every day for 45min. OT from 10 every day for 30 min. With speech twice a week, tues and thurs for 30min. RT three times a week mon, wed, fri for 30 min. For the Extends program I would add another workout sessions 2-3 times a week depending on availability. After a few weeks they added session with the PT TA and OT TA to make it about 3-4 hour a day at different activities. At first my progress was slow, left side still not responding and my right side was weak but I was determined.
Aside from the therapists, I also had a team of doctors;
· Physiatrist: reviews and guides all my therapy. (Dr. Lam)
· General Doctor: watched my health including Diabetes. Responsible for medications and checkups for blood pressure, heart rate and oxygen levels (which they checked every morning around 8am).
· Family Counselor: assist me with government forms and any support programs/assistance.
· Psychiatrist: for both me and any family members who needed help.
· Neural Specialist: responsible for my brain, looking into why I had a stroke and prevention in the future.
· Nutritionist: responsible for my diet
I still remember my first time meeting the team. I was in my room sitting in my wheelchair, conversing with visitors, when I was surrounded by a bunch of lab coats. This was day 7 at Unit 58. Dr. Lam, who is the primary, asks me a few questions, “How are you feeling?”, “Can you tell me how your left side is progressing?”, “Can you swallow or move your tongue?”. I answered in my broken voice that I was feeling ok but could not move the left side and had issues swallowing, talking (which was obvious). Dr. Lam looks at me and says, “You look like a long-term therapy patient", estimating 7 months. You are a candidate for Ponoka”. Ponoka! I was reeling with emotions and welling up. “I don’t want to go to Ponoka, that’s 2 hours away, and winter is coming!”. With my emotional filter not working I got visibly upset, but what I did not know it that the best therapy center for all of Alberta was built there. Both Edmonton and Calgary wanted the center but with budget to build only 1 in Alberta, the power that be choose a smaller town equal distance to both major cities. What I did know was it was known as a mental hospital for Alberta. So I was thinking he meant to send me to a mental institute, I felt my Brain, while damaged was not that bad. A Mental Hospital…sheesh…thoughts of Deja-vu in the emergency room filled my mind.
Afterwards I did calm down when they told me it was the best therapy center in Alberta and not everyone gets admitted to such a great place. To heck with it being the best therapy I still did not want to go to Ponoka. I challenged myself to be better than that, and try even harder to recover from this.
I have decided to add my updates to my main story...I will add a marker to indicate the position of the update (for people who have previously read my story so far). Just a FYI, due to the limits of updated, I had to break it into 3 parts but in fact it is a single update.