Following redundancy 15 months after I had had my stroke, I decided to take a year out to discover how much of an improvement I could make, and to assess realistic and achievable goals. I used to work in IT and did a lot of infrastructure projects but I can't be as hands on these days, so I'm now focusing on cloud solutions. In doing so it has led to my passing 5 exams (AWS, Azure and Scrum) so far. Clearly, my brain still works.
After my stroke, I had aphasia and it was a struggle. I could form words and was able to pronounce them but it was only in the confines of my mind, and translating that process into physically mouthing and articulating the words was where I failed. I felt imprisoned.
Unfortunately, I had very little speech therapy while I was in hospital, and none at all when I had returned home, but the expressive aphasia has improved immeasurably, mainly due to my reading to my children and providing a running commentary on everything I did. (Apparently there’s a shortage of speech therapists and the one who was assigned to me post-hospital was on maternity leave, highlighting the absurdity of having a single speech therapist to cover a rather large area.) I have to speak a little slower these days, like a someone from, say, planet ‘Gary Barlow’, but my speech, I think, is deliberate and with purpose. Moreover, my brain chatter and internal monologue, which seemingly left me having to re-read work email 3 or 4 times in order to understand their meaning, has returned, and both my short-term and long-term memory returned goodness knows when.
Admittedly, there are words which I still find difficult. For instance, as I write this I’m aware that I have difficulty saying ‘negligible’, but the word ‘eligible’ seems ok (I've highlighted the letters as I had difficulty with word where the letter 'l' was preceded by another letter, words in which the letter 'r' was in or close to the middle, the the 'th' sound - the word 'thoroughly' took ages to master again). If I repeat the word ‘negligible’ five times every half-hour for the next day or two, I’ll more than likely nail it, meaning that the difficulty I have in saying such words is temporary. Also, if a word is made up of a lot of syllables, I have to mentally compose myself before I say the word, or I’ll find a substitute word. I think the delay when I do this is more noticeable to me as opposed to others. Overall, the scuffle that I have had with aphasia seems to be nearing its end.
My right arm feels heavier than my left arm but not nearly as much as it used to feel. After my stroke it felt that it was weighed down by 20 kilos. At the moment it feels like it has on-boarded about a couple of kilos. It’s also not as flexible nor as agile as my left arm, in that its movement is jerky, abrupt and choppy. Depending on the exertion or endeavour, I can experience the immense pain brought on by shoulder subluxation. This has happened a few times: once when I stupidly tried to ascertain how far across my lower back I could go with my arm, twice when yawning and stretching only to find my right arm trapped between the canvas and arm of a patio chair (yep, this actually happened - I seem to be devoid of spatial awareness where my arm is concerned, so much so that there is never a day where I don't catch it on a door handle when entering or exiting a room), and twice trying to kayak again in the summer of 2018. The kayak is a tandem with space for a small third. My partner was with me on both occasions and she did the paddling. When I did try a few strokes the shoulder subluxation kicked in, so I barely paddled. After a month, I tried kayaking again (again with my partner) and, well, let’s just say that I haven’t been on the kayak since!
In terms of my right hand, I did a DASH test with physiotherapists when I was referred to get a Saeboflex fitted and did another test 14 months later just before I signed myself off (with the option of returning should I feel the need to). The last test showed an improvement from 34% to 22% (less is better). (A reduction in “disability”! Yay me!) It sounds great but it is not as it seems. The truth of the DASH test stats means that I can with my right hand and arm physically move blocks that are 3cm3 as opposed to 4cm3, and solid cylinders that are 3cm in diameter as opposed to 4cm in diameter.
I’m not taking anything away from the physios and OTs work and results as it’s an obvious improvement, and it was their sorcery and magic that helped to walk and move my arm in the first place, but as a realist I recognise that I still have limited hand functionality. My fingers do not move independently from one another and I have tendency to grab things in a rudimentary way using the most simple grip, so much so that I do not trust my right hand to hold breakable items such as plates or glasses. When I try to carry plates, I find that I cannot maintain a flat palm for long. My fingers don't seem to relax and I end up bunching them, forming a fist with a tightening grip, meaning that what I’m carrying is no longer being carried. I also find that I involuntarily squeeze too hard when I’m holding flimsy things. For example, if I'm eating a pot noodle type thing I’ll slowly but surely start squeezing the pot until my left hand steps in to relieve my right hand. It’s an unintended crushing, and releasing my grip requires effort and concentration too.
My hand has also got increased sensitivity. Anything that can dig into my hand hurts more than it did pre-stroke. When carrying something like a plastic washing basket, the edge digs into my hand and it stings. Deciphering what is hot and cold using my affected hand/arm is also quite interesting, as neither register unless one starts to burn. (I was told by my OTs never to test a shower's temperature with my right hand.) In addition to this rather extensive list, I've also got atrophy in my right hand, which is more noticeable between my thumb and index finger but visible in the hand in general, and it is also at a very peculiar angle. When both my arms are outstretched in front of me with palms down and I start drawing them in close to my torso, whereas my left hand will remain palm down, my right hand stays at a 45 degree angle. All in all, I’m missing the intricate movements, the finer movements. Writing and typing with my right hand are both out at this point in time, and I can’t drum my fingers with it. Yet.
Initially, I was paralysed on the right side of my body and to learn to walk again. I also had spacitity in my right foot. However, I no longer have any spasticity – that, I’m chuffed to say, was fixed while in hospital. But when I walk I admittedly feel ever-so-slightly imbalanced. I also have neuropathic pain which is largely apparent in my right leg and foot than it is in the rest of my right side. It’s a numb prickly sensation, like chronic pins and needles, it feel like having an electric current running through my calf and foot. It's got better over time. The sensation is still there but it's not as bad as it used to be. However, it can get worse at anytime (when I'm sitting still and even when I'm walking and moving, it doesn't matter) and it does so a few times most days. Amid these moments, it’s as if the electric current has been turned up to a Spinal Tap 11 and I’m unable to move my right leg for around 10 minutes or so.
Going forward, as they in current jargon, there are times when I have doubts and think that I’ve plateaued and have reached the limit of recovery. But there are also signs that show the contrary. The improvements I'm making are small increments. While these small increments might be insignificant and imperceptible to other people, they absolutely are there. And they mean so much to me. They're achievements, however small they seem to be, and I remain encouraged. For example, I can now pickup dominoes (3.5cm x 2cm x 0.4cm). Sometimes I can pick them up straight away, other times it takes more than one attempt. But it's progress and that's a positive!