My one year stroke anniversary By Shannon
On the eve of the one year strokeversary I thought I would share the speech I wrote for the Stroke Foundation. I had the privileged to be asked by the Stroke Foundation to share my stroke journey at their Annual staff meeting.
I was 45 when my life changed forever.
I went to bed as normal on the Sunday night - it was Mother’s Day 2018.
Apparently, I got up to go to the toilet at 3am, Stewart my husband heard this, I don't remember.
When I woke up again it was about 5.30am. I was thrashing around in the bed and then I fell out. Stewart tried to pick me up. I was paralysed down my right side, I couldn’t speak and I had a facial droop.
Stewart recognised my stroke straight away. I remember him calling the ambulance and saying “I think my wife is having a stroke”.
And so it dawned on me, I was having a stroke! - I felt panicked.
I remember the ambulance officers arriving. They couldn’t get me out because I was between the bed and the window. They strapped me to a hovermat and dragged me down the hallway of our house. I remember seeing Gemma, our daughter, holding our dog in the doorway of her room as I was being dragged out. I began to cry. Our 17 year old, Sean slept through the whole ordeal!
I remember arriving at Box Hill Emergency, it was approximately 6am.
I was diagnosed with a Left Middle Cerebral Artery (MCA) Stroke, it was a clot. I had the clot busting medication, Altaplase at 6.20. I’m lucky that Stewart heard me get up for the toilet - Altaplase has to be given within 4 ½ hours – so my stroke onset could be timed from 3am.
Then I was transferred by ambulance to the Royal Melbourne Hospital for clot retrieval. The clot was retrieved at 7.35am.
I was enrolled in the Escape NA-1 trial at the Royal Melbourne. It’s a medication to stop the ischemia in the brain. I don’t know whether I was administered the drug or a placebo – I get to find out when trial has finished!
That day was my father’s 70th birthday. Stewart called my parents at 7.20am, they answered the phone thinking we’d be calling to wish Dad a happy birthday – instead it was the devastating news that their only daughter had just suffered a stroke.
My parents live in Deniliquin, they arrived at the Royal Melbourne at lunchtime. It was heart breaking to watch my parents try to comprehend what was going on with me. Those first few days I cried a lot, such as each time I saw my husband sitting by my bed. The next hurdle was seeing our children and my brothers. I couldn’t talk and I couldn’t walk, I was paralysed down my right side. I was scared. I wanted to tell them it was all going to be alright. But I couldn’t communicate this to them.
The physio got me out of bed the next day. I still couldn’t talk, but I was able walk. I was seen by the speech therapist, to see if my swallow was affected - it wasn’t thank goodness. I had an echocardiogram with bubble study. They were looking for what could have caused the stroke. I was transferred back to Box Hill on Wednesday afternoon. I saw another doctor with whom I could not communicate. My non-verbal communication was really getting a work out!
The next morning they took 11 vials of blood from me. They didn’t find anything abnormal; I didn’t even have high cholesterol. A handy thing they gave me was a white board, so I could finally communicate. I was bit rusty with my left hand - of course I am right handed! I had no usable function in my right hand, I could only raise that arm. They did another echocardiogram with bubble study at Box Hill. This found a hole in my heart, a PFO - a hole between my left and right atria.
One week after my stroke I finally spoke! The first word I said was “one”. The speech therapist spoke the word “one” and I repeated it. I had verbal dyspraxia and still have. Verbal dyspraxia is defined as having difficulty planning and co-ordinating the movement of muscles used during speech. I knew what to say but I couldn’t get the words out. I did slip out the “F” word in frustration at my husband the previous day, but that’s another story!
I was in Boxhill for 8 days then I transferred to the Peter James Centre - it was time to start my rehab. I had speech therapy mostly twice a day from Monday to Friday, and OT on my hand once a day. I exercised my hand three a times a day with the TENS machine and they gave me exercises to do. I had no real hand function in my right hand, and I had verbal dyspraxia which meant I was repeating words endlessly, and then eventually functional sentences. My favourite was: "Put your crap away” - of course I also did functional phrases like "Good Morning" and "How are you?"
This is when I discovered had Aphasia. I'm a nurse, and I thought Aphasia was an absence of speech. I didn't realise it was so much more. I had difficulty with word finding and spelling, these are still issues sometimes.
Thankfully I was able to go home for day leave on the weekends. I spent 15 days in inpatient rehab, I chose to stay a week longer because I needed the intensive speech therapy.
I went home after 3 weeks and five days. I started ESD (early supported discharge program) on 12th of June. It's a 4 week intensive program for stroke patients. I had an hour of speech therapy and OT daily from Monday to Friday, both home based and centre based. I also worked on my own speech therapy and OT throughout the day.
I went to the stroke clinic at Box Hill Hospital 7 and half weeks later. Dr Phillip Choi was surprised when I walked in - he had just been looking at my scans. He described mine as “a massive stroke”. I viewed the scans, my left brain had been completely cut from oxygen, it was dying.
Dr Choi said I was the poster girl for when things work out right. The “FAST” acronym definitely worked for me.
I was then transferred to community rehab at Wantirna Health. My ultimate rehab goal was to return to work. And this I did on the 8th of October (following surgery to fix my PFO). I work at St Vincent's Public Hospital Melbourne in the Nurse Workforce Unit. I had a graded re-entry to work starting on 5 hours a day, 3 days a week. I am now working 4 full days a week. A great deal of my job is communication, I handle this by doing all my talking in the mornings, and leave the spreadsheets and emails for the afternoons.
I also went to see my GP to get a mental health plan. I felt I wasn't coping because I couldn't say the word monotony. That was straw that broke the camel's back. So I went to see a clinical psychologist. It was a severely stressful time for everyone. I went for 3 sessions by myself, I had session with Stewart and we had a family session together.
I was discharged from Wantirna for speech therapy on 18th October, and for OT on 31st December. In the New Year I did 12 sessions over 6 weeks at the Hand Hub at Royal Melbourne Hospital. All thanks goes to Professor Bruce Campbell who referred me - I saw improvements in strength, endurance and dexterity.
My family has been through the wars over the last 10 months. I wouldn't say we’re back to normal, rather that we have a new kind of normal. I am extremely proud of how my husband and our children have come through relatively unscathed. I might mention that my son managed to pass VCE last year, and he has now started university. I don't know whether I could have got through the past year without the love and support of my family and friends. And I will be forever grateful for the care I have received from many doctors, nurses, speech and occupational therapists throughout this experience.