It’s been 3 years since I had a massive ischemic stroke on the right side of my brain, leaving me weak down my left side. At that time I was 48 and very fit, never smoked, never drank, no health problems. Not only did the stroke occur as a complete surprise but, as of today, and after many tests, the cause still remains a mystery.
Back then there were only 2 things I knew about stroke – the FAST campaign that played out on the radio most ad breaks and that my elderly neighbour was whisked off to hospital after suffering a stroke during the 2020 lockdown. I remember the night of my stroke, awaking to hear my wife mid-conversation on the phone to the emergency services. Given my obvious limited knowledge of stroke, it’s amazing how quickly I worked out what had happened. When the ambulance crew were in the house, I remember looking down at my left foot and seeing it laying on an object that I really care about. Naturally, I would instinctively try and pull my foot away only to see I could not move it. I remember crying out that I couldn’t move it and the ambulance crew replying “it will come, it will come” – words I will never forget
Off to Maidstone hospital I went, alone of course as it was “Covid year”. I spent 2 weeks in the Maidstone hospital stroke ward, receiving brief physio every morning and then being left in my wheelchair for prolonged periods afterwards. I did manage to stand up from the bench using my good right leg during one of those brief sessions, breaking down as I did so. During this stay I thought of my neighbour and how he was back pottering around his garden a few weeks later. Naturally, being younger and fitter, I thought I’d be back up and running in a few weeks – how wrong I was. My neighbour had had a TIA. I never even knew what that was, why would I? After 2 weeks in the stroke ward at Maidstone hospital I was moved onto a rehabilitation centre. That had a bigger bed, nicer food and 2 new physio therapists. It was still covid year, so I remained isolated and was mostly confined to my room rather than communal areas.
I’d always class myself as an outdoors person: hiking, cycling, working as a field engineer and always being relatively free and having never worked in an office. After 7 weeks I was bouncing off the walls and desperate to get home, only to find I’d still end up bouncing off the walls at home. During my stay at the rehabilitation centre, whilst in my room, I wheeled myself into the bathroom. Limited at the time to right side pivot transfers, I failed a left hand pivot and ended up on the bathroom floor. I tried and tried to get off the floor desperate not to get caught. Despite using the handrails and all my might, I still could not get up. After a lot of effort and thought, I did end up kneeling up high – where my physio found me. Where I could have got from there, I do not know: that was a big wake up call! I was no longer as fit or as strong as I thought I was.
This brings me nicely to my first day with Tom. I had found out the hard way both how easy it is to end up on the floor, but how difficult and near impossible it is to get back up. In short, Tom’s way works and is certainly more efficient than my way during my harsh lesson back at rehab. After 7 weeks “in the dog house” for the floor incident, I was finally released to go home. I was one of the few lucky people to be appointed 2 excellent, well experienced, physio therapists on a weekly basis. Having long legs, I found my wheelchair too small and uncomfortable. I hated it. I really, really hated it. I wanted to sit in my arm chair in the lounge. At that time I either had the comfort of the hospital bed upstairs (I had a stair lift) or the discomfort of the wheelchair downstairs. My physio agreed and asked me to get in and out the armchair while she watched on, to both make sure that I could not only do it, but do it safely. With the thought of waving that bloody wheelchair goodbye, I did of course do it.
Like most, I was desperate to get up on my feet, which after a lot of work and determination I did. It wasn’t until I was told I could walk around at home safely that it suddenly hit me “what was the point of being able to walk if you can’t actually walk anywhere? I mean, round the house is better, but I want to walk to the local shops and back. After a lot of walking outside and trying to stretch or beat previous Strava records, I have found half a mile to be around my limit – with a stick, an AFO and my wife. In hindsight, I feel that my focus on getting to my feet has had me lose focus on my arm. I feel that is common amongst stroke survivors.
When in rehab, my apparently very heavy arm used to fall off the side of my too small wheelchair – I was waiting an arm board. That never arrived until I was at home. I used to tie my forearm to the armrest of the wheelchair so it couldn’t fall. – that got me into trouble too! Once home, my weak arm was in agony. I wouldn’t let anyone touch it let alone stretch it or move it. I was put on co-codamol for it, but it never worked in relieving the pain. My physio did a qigong class and used acupressure on my arm. It worked! Instantly. Within no time at all of her pulling and shaking my fingers, the pain was gone and hasn’t been back.
Since that day, every morning I stretch my arm back behind my head and out to the side. – anything to reduce the chance of that pain coming back! My weekly physio sessions continued, staggered with OT sessions on the weeks in between. These sessions involved stretching, gripping a small teddy which then had to be prised out my hands. My regular physio got me walking and to the point I could walk around the house, before my physio unfortunately had to leave for medical reasons. I kind of found myself in limbo. My OT had vanished, but I still had my physio’s assistant. She saw me weekly and signed me up to a 12 week program at my gym using a stroke trained (by my old physio, coincidentally) trainer.
I’ve now been discharged from community care with regards to physio. I continue training the exercises I was shown at the gym. In fact, I’ve joined and go regularly adding different challenges and plans as I go. I found myself willing to put the work in but not knowing how and into what direction. I felt I was just doing random exercises.
My wife first contacted ARNI way back when I was in hospital, but as I was receiving regular physio. Also, we watched the first video which was about getting onto the floor, and that just seemed absolutely impossible. We just stayed with that rather than having multiple conflicting programs. I read my way through Tom’s book – ‘ How to be a successful stroke survivor’ and secured a day and a half with Tom. Having read Tom’s book and the testimonials within, I expected it to be hard work, but boy it was. To the training mat I walked where I spent time getting to and off the floor. The phrase of the day was “ that’s good, do it again!”. I’d read the book and watched the video so had an idea of what to do, but had think about each step on the fly.
Doing this made me tire and stopped the whole manoeuvre from being fluid or autonomous. After a long session of being on and off the floor, it was time for lunch and then onto some arm and grip training. This is the first time I’ve had anything like it, and it wasn’t just physically demanding, but mentally too. The rest of the day was spent on and off the floor. To rest those tired legs from all that hard work, I got myself in the hotel’s hot tub. My first time completely submerged in water since my stroke!
I lay in bed that night running through the steps over and over again in my head. I was determined to make the whole process fluid. Monday came around and it was half a day. I worked with my trainer Mike and went back to getting on and off the floor. Despite my legs being really, really tired from the day before, I managed the process in a fluid manner, changing the process slightly. After running the moves through my head, I questioned why get up and sit in the chair? Whilst I’m halfway up, I may as well stand up! From there we moved onto me being pushed and having to regain my balance, all without a stick of course! Then some more arm exercises running through Tom’s training program for me.
The following week muscles that I never knew existed ached, but things have changed, I’ve got a direction to head in. I have Tom’s training program and intend to follow it. Previous to seeing Tom, whilst seeking more independence (as my wife, my primary carer, will shortly be having a hip replacement), I figured it be a whole lot easier when I wake up in the morning to just go to the bathroom like everyone else rather than all that faff with AFO, stick etc. So I’ve cut all that out and walk around upstairs bare foot and without a stick. I have to be cautious of course, but I do still like to feel the cold through my feet when I step on to those metal carpet joining strips. I prefer the ankle support as recommended by Tom. In fact, I wore my old small AFO the other day and hated it. I was once told that I wouldn’t be able to get rid of the AFO. That had made me more determined to do so. I’m just stubborn, I guess.
Since seeing Tom I now walk around more without my stick, starting indoors. He is real inspiration and his approach is like a breath of fresh air. I look forward to following up with a local ARNI instructor. This “can do” attitude is excellent. I can’t wait to start seeing more improvements as just one day with Tom showed me what in was capable of.
Prior to the note from Brett, a note from Kerensa:
Tom, Thank you so much to you and your amazing team for the day and a hald that Brett experienced on Sunday/Monday. Brett (a man of few words), said you are very inspirational. Amazing. He thanks you so much for the book and your comments in it. The book will take pride of place on our bookshelf, along with other books about people who have been through life-changing events, such as Aron Ralston. We ended up staying at Lingfield and watching some horse racing on the Tuesday. Brett struggled to get out of the car, up the steps and along the garden path when we got home. Even today he aches. He knows he worked very hard and is pleased. He settled down for the evening with a protein shake and an omelette! Having the programme you prepared for us is amazing. It really gives us something to work with as we were struggling to work out what to do each day. So training starts tomorrow and as mentioned, Brett would be interested in joining the next session you hold in November. You have a fantastic team and I hope your trainees did well in their assessments. I think anybody who proceeds down the route of wanting to help people in any way, shape or form, are really amazing.
