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.