15 - Stroke episide 3 - Enter the torture queen !!

I'm guessing most folks know about some of the effects of Stroke: restricted movement and sensation, etc, but fewer know about Neurofatigue. I didnt. I do now !

The current medical thinking on this is that when the brain is damaged, the body immediately floods the brain with calcium compounds and dissolving enzymes to both clean up damage and prevent further damage.

A bit like swelling around a leg injury, designed to protect the injury by the repair system.

This causes two sysmptoms: first that the effects of the stroke appear WORSE for a while, as the brain chemicals have the effect of freezing areas of brain adjacent to the injury. Secondly an invisible ten ton lead cloak sinks upon you making the simplest activity into a climb up everest. Imagine the tiredest you have ever been : days without sleep, two marathons on the trot, whatever, and quadruple that.

The body feels ten times its real weight, and movements are ten times as laboured and slow.

I was just beginning to experience that, when I could get around well enough to join the Rehab class ! Andy Bright drove me to my first class. The head PT Deb assigned me to the tiny but formidable "Sue" to put me though my paces. I'd stated that I was willing to do anything needed to give myself the best chance of recovery. Sue was to push that to the edge of endurance.

Andy and I were introduced to Sue. She ran though a set of assessment exercises to see where my stroke had limited me. Yoga postures, weight bearing and transfer, stetches, right down to opening , relocating and closing pegs on a puzzle. Good news- I had a near 70% scope of voluntary movement. Bad news I had way less than 50% "electtive control" of my right side.

The neurofatigue had kicked in brutally after this half hours efforts, so I went to slip my trackie top back on.

"Where ya gooin' Daerve ?" Sue was very Black Country. "Thought you wanted to get betta?".

She stood me by the physio bed and had me bend at the knee as low as I could, and straighten again ten times. And again. Next set my right leg gave way at four and I crashed to the floor. This wiry sparrow elped me up , dusted me off , handed me a tissue for my tears and said "Six more".

I was in tears with frustration, fatigue and embarassment but I did them.

She wrote up an exercise routine for three sessions a week. Said "See you on Wednesday".

Andy took me home. I went to bed and slept for four hours. The ache and fatigue was just immense.

"How was hurting me supposed to help ? Was this tiny woman mental ? I dont think I can do this ! "

On Wednesday, Andy came for me again, and took me back to this torturer's clutches. She seemed to zoom in on exactly the actions I found hardest, and where I was weakest and we goddamn concentrated on them with manical intensity. I went home broken after this, and many subsequent sessions.

Then, Sue took me though the clinic to a walking treadmill. She set the machine to ten minutes. "Do what you can on there". She assessed my gait, posture and strength from every angle as I clomped, limped and drop-footed until the 'mill halted.

"Hmm. That was rubbish, but the seeds am theer" she said. This repeated at the start of every thrice weekly session for a couple of months. Then one day Sue said " Run to the mirror and back". I looked incredulous " Run? I cant hardly walk".

"You need strength and co-ordination. Try to run". So I did. Hopeless. Sue laughed. I tried again. Hopeless. Not offended by now, I knew Sue well and trusted her implicitly.

Sue put some device on me to make me more aware of my limb position. I tried again. Hopeless. Couple of weeks later, I ran to the mirror. Slowly, with a huge limp but recognisably a run. Then tried running backwards. Then running on the treadmill. Two months after Sue had laughed at my running efforts I jogged for ten minutes and did 1.2 KMs. on the treadmill. Sue announced to the clinic and the whole rehab staff applauded and cheered. Not sure I have been prouder of anything in my life. "That took bollocks Daerve".

Sue applied her uncompromising genius to every aspect of my rehab which by now was accelerating. Hard exercise, and complex tasks like assault courses, balance and stuff too. See, Deb taught me that the harder you work the burned out bits of your brain, the faster and harder your brain uses neuroplasticity to repair it. Deb and mostly Sue had helped me kick my brain repair into overdrive. Soon I was driving myself to rehab. Even travelled to see friends and a couple of gigs. Knackering though.

Kayla had helped me lose 4 stones at home, along with all the hard rehab. This in turn helped the exercise. The Neurofatigue was starting to dissipate a bit. I agreed a return to work strategy with my boss (who was himself a brain injury recoverer). Things were starting to normalise a bit. There were a few setbacks, but mostly Sue and Deb continued to drive my targeted recovery wonderfully until lockdown stopped my rehab in March this year. Its been tough without the gym but overall I am still moving forward. My most recent assessmetn said that I had "95% voluntary articulation" on my affected side. That is pretty brilliant given how broken I was a year or so before. I am barely affected by nerofatigue now, as long as I am careful at work, and rest up plenty.

I will never stop rehab, as keeping moving keeps me improving. A bit of a dull episode today soz, but it was important for me to get it in print. That journey was hard but incredible. I owe Sue and Deb so much.

 Number 15 - Stroke of luck part 2 - Coming Home 

Part 2 - coming home

In High Wycombe stroke centre, my ward time was busy and uncomfortable. Practiced medical hands flitted around me administering drugs, fitting electrodes, wheeling me about for MRI scans, and applying awareness and function tests. ("Can you swallow ?" A nurse asked me " I might struggle with a dick" I answered out of one side of my mouth with a smile! "That attitude will help a lot !" Said the nurse, laughing). I wandered in and out of consciousness, feeling a fatigue I had never known before. Way beyond "tired" this was to define the next year of my life.

Twilight day fed into twilight night, barely able to sleep because of the thirty electrodes fitted to me and the alarms triggered when they detected an anomaly.

When morning came the ward OT suggested that I shower to freshen myself up. I had close to no movement in my right arm, and little in my right leg. I cramped up trying to get out of bed then promptly fell to the tiled floor. I couldnt walk. I couldnt get up. I flailed and raged ending up crying like I havent in years. The OT helped me up and helped me to the shower room. I had been profoundly right handed all my life: very dominantly so, and now it was barely usable. I did what I could to get clean, but the effort of it all made me sweatier than before. I was helped back to the bed and crashed into sleep.

I was awakened my Mrs Tuna, my stroke consultant, and her entourage. There followed one of the pivotal discussions of my life. She asked me a few questions to gauge what I knew about what was happening to me. Then she began :

"David, you have been preparing a stroke for a long time. Your extra fat externally was mirrored internally. Your blood pressure was high. Very high. You suffered what is called a Lacunar stroke in the left Pons area of your brain stem. The width of a playing card either way and you could have died or been paraplegic. In fact it was contained, and early intervention seems to have cleared the clot already. You may not feel it, but you have been incredibly lucky. You have the chance to change your life and avoid a recurrence.

I cannot guarantee it, but in my long experience , if you invest fully in rehabilitation with diet, exercise and rest you will be able to make a very good recovery. Your brain will only repair what there is demand for, however. It will not waste neuroplastic effort.

I will have the OTs assess you, and if they are convinced you can thrive assisted at home I will discharge you ASAP. I will try to ensure all resources are available for you in your own health authority. This will be very hard work, and not instinctive, but you can make a good recovery. It is largely in your hands".

I almost wept at this motivation. Amazingly I had not been afraid though all of this, but the hope, supported by a trusted expert. made me break with joy and hope.

Overnight there had been two new admissions in my ward bay: One was Doreen - a sixty year old who had collapsed while gardening, and who had lain undiscovered for ten hours until her family returned from work. They sat at her bedside, she unconscious, on oxygen, immobile. A BAD stroke, left unattended for hours. The other was Ray, a man in his fifties who complained all day, despite being, to my witness, relatively lightly affected by his stroke. He was very , perhaps justifiably, sorry for himself. I could see what Mrs Tuna was saying : Doreen reminded me that I had been so lucky, Ray that I had nothing to lose by being positive.

The OT signed me off, and my bezzy Andy came later that day to take me home. I was a broken mess in the car. At home I was helped to bed and I slept the clock round.

Trisha, the OT, visited next day. With practiced efficiency she assessed what I was able to do, and what I needed to do. I was genuinely positive with her. Kayla, a stroke nurse a while back, conspired with Trish to ensure I was rehabilitated to death ! A Stroke nutritionist arrived the same day, and Kayla worked out what I need to eat and drink for rehabiliation AND ongoing health (I.e lose some lard). So many folks who suffer strokes report awful support from their local NHS, which I think is sad. The support I received from the second the ambulance arrived right up to my GP has been first class and comprehensive - a massive reason why I have recovered so well so far.

Trisha continued the wonderful practice of explaining the reason for things, and what was happening to me. She bought me a book on Neuroplasticity on her second biweekly visit which explained that TRYING to perform a movement restricted by area damaged by the stroke actually triggers the brain to try new neural paths across the burned bit, and eventually to the creation of new neurosets being created. TRYING HARD to pick up pieces of pasta from one cup to another made my brain build a nerveway to allow it over time. Same with every other task. Trish and Kayla set me hours of rehab every day, which I didnt miss. I could feel and see the progress weekly. Frustrating as hell, but I read all I could about neuroplasticity so that I could understand properly what I was doing.

Kaylas wonderful care, Andy and my Kids' ongoing positivity really felt like I was being carried through my early recovery.

I had a few nasty falls, and couldnt get up, and the ever-present neurofatigue was a real beast to fight through, but after a month's OT progress, Trisha procured a stroke physiotherapist to assess me for the rehab centre. Debbie came and duffed me up. and claimed I was ready if I was prepared to work hard. I could perceive genuine improvements in only a month, and already lost 7 kgs, so I was fired up ! I was booked for Corbett Hospital Stroke Rehabilitation unit for the following week, and Andy Bright was to take me. I was scared and thrilled in equal measure.

In Pt 3 I will discuss my extended rehabilitation journey, and lift up the amazing team there.

 Number 14 - Mister Lacunar Stroke ! (stroke journey part 1) 

A stroke of luck - Part 1

Sat here now, 27 months on from having a stroke and looking at this photo taken some 8 hours before I had a stroke, , I see now that I had been preparing for mine for several years. Who knew that being overweight and stressed on and off for twenty years was unhealthy? No-one ever told me!

Looking back I’d had a stressful decade at least: work, personal relationships, and other stresses were self-medicated by food and alcohol. A big, indestructible fella, just kept on making people laugh while criminally neglecting my own physical and mental health.

The best thing in AGES happened to me when I got a job role at Blue Prism – my first practitioner role in 20 years, sexy new technology space, no impossible budget to carry, nor the personal futures of dozens of good people in a fading giant business. I’d dabbled in readying a few startups for acquisition in the recent

years , but I was aching to retire early. The BP role was a breath of fresh air.

Had a wonderful team around me, a great mentor (cheers Em!) and I got contributory quickly. Unfortunately I had already done the damage. After a very busy three months, and just a day after celebrating my probation period being passed during an hilarious and beery evening with Olly and Jacob at a residential sales course,

I went to bed very happily.

I woke for the loo around five in my dormitory room… and I could neither move nor feel my right side properly. Looking back, incredibly, I knew what it was and I was never scared. I just though " Ohh SHIT ! Here we go"...I just treated it like any critical problem I’d encountered during my 20 years as an executive troubleshooter. I knew innately that panic is a useless response to a crisis.

I had the presence of mind to throw on clean sportswear as I KNEW I’d be messed around by medics later,and I tried to make my way to reception. Remember when the landlines in hotels used to be connected?

Me too! Bouncing off the walls I got to reception. My speech was going as my stroke was ongoing and worsening.

A US colleague,Rich Salerno, saw me in reception and he kept me company until the ambulance arrived. I will never forget that kindness.

I was lucky in so many ways: the National Stroke Centre in High Wycombe was only a half hours ride away.

I was MRI’d, cannulated and clotbusted in double quick time. I’d suffered whats called a Lacunar stroke in my left brain stem. A couple of desperately uncomfortable nights connected to a dozen electrodes, drips and whirring machines ensued while the stroke consultant, the wonderful Mrs Tuna, explained very clearly exactly what had occurred and what the best plan of action was. It was gonna get worse before it got better. She explained that my blood pressure had been 227/140 on admission, and that at 20 stone (126 kgs) I was on a collision course with another stroke. Nature has this gentle way of telling a person his body has been abused enough. A photograph taken during the previous day’s course tells an awful story. I look like I’d given up. Thats the one accompanying this post.

The day after I got home the Occupational Therapist visited my home and my rehabilitation started immediately. Kayla , my clever missus had worked as a stroke nurse in the eighties. She locked in step with the OT to resolve my diet and repetitive flexibility exercises. I cannot praise Kayla and the many NHS folks involved in my recovery enough. Hard work physically and emotionally.

In the next part I'll cover my slow crawl out of the hole the stroke had left.