An author's Stroke Journey

We are grateful to author 'Gordy7766' for taking the time to share his journey after suffering a stroke while at home back in May 2024. Gordon initially submitted his well written story to us at Care Opinion but unfortunately it didn't meet our publication word count of 'word count less than 1000'. Care Opinion agreed to publish a shortened version which could be sent through to staff at NHS Tayside: My Stroke Journey'. 

Care Opinion offered for the full story to be shared via our blog so everyone could read the whole story, and what a journey it has been!

A year at a stroke:

Retired journalist Gordon of Perth reflects on life after suffering a haemorrhagic stroke in early May 2024. IT WAS A bright spring Saturday afternoon. I'd been doing one or two small back garden jobs – tidying borders and weeds, nothing major – and was making my way towards the house. A strange sensation suddenly washed over me, a sort of tingling accompanied by a feeling of disorientation. I went into the kitchen and started speaking to my wife about the odd sensations. It was the last thing I was going to remember for days, if not weeks. Even today some details have been sketched in by family and friends. I collapsed into my wife's arms, the result of a major haemorrhagic stroke.

Fifteen minutes later I was below the blue flashing light of an ambulance en route from my Perth home to Dundee's Ninewells Hospital and the care of their emergency stroke team. I was under their 24-hour watchful treatment and expert supervision for two weeks before being transferred into the hands of Dr Nair's specialist team at Perth Royal Infirmary's highly-regarded stroke unit – by a strange coincidence just minutes from my own front door. I was to remain as an in-patient for six weeks as my recovery and rehabilitation began and as I slowly became aware of the actuality of the events about to dominate my world.

The bleed in my brain had impacted the thalamus, the key mental organ which governs the distribution of sensory nerve activity throughout the body and the instructions which pass along these pathways. It resulted in my losing all sense of touch or feeling throughout the entire right-hand side of my body. Major limb movements, for example raising an arm or bending a leg, were not wholly compromised but were initially limited. However, holding a pencil or knife or fork in the right hand could not be managed even with care. Daily activities like washing, cleaning teeth, shaving and dressing, essential tasks such as writing, drawing or in my case typing or playing the occasional tune on the guitar or piano, had to be either transferred mainly to the left-hand or abandoned altogether. Lots of items ended up in pieces on the floor. The word “disabled” crept into the shadows of my vocabulary. And a unusual new word entered my personal lexicon: Proprioception: it means the sense of awareness of the various parts of the body chiefly through touch and without actually having to see them. When the nerves which control these basic sensory functions are damaged, you are unable to identify where a limb is in space – from a finger to a foot – without seeing it directly.

My entire right side simply wandered off on its own whenever it felt like it. I found myself humming an old Beatles Help! album track – Suddenly, I’m not half the man I used to be . . . How are you today, asks your doctor or therapist? And countless friends. All inquiring kindly and with the best of intent. Fine, you reply. Actually 12 months on, I still find it tricky to retain a mental picture of the extent – or relative progress – of my wellness. None of the medical staff seem able to offer anything other than their best guess as to precisely how “fine” I am. They can assess how I appear, what activities or tasks I can execute and compare them with how I was six, nine or twelve months ago.

They can examine the reports of the professional colleagues and therapists who regularly examine me to assess cognitive abilities and stand guard over my shaky balance, occasional disorientation and other physical attributes. What they can identify are unquestionably significant changes for the better. I can discriminate between various textures of materials; pick out objects from a bowl of sand; use a spoon – if I have an accompanying large napkin on my lap; brush my hair. Or what remains of it. I walked into, around the city centre and home again unaided the other day – three miles or so. I could not have done that even three months ago. Nor could I have attempted the stairs in my house which I can now safely negotiate several times a day unsupervised. Simultaneously, however, many attributes which I believed were making huge progress last autumn seemed to take a nose-dive in late November after muscles in my normal and unimpaired left-side went through a period of pain as if they had all been hugely over-stretched and injured. I can remember no major incident or trauma. And my right-side numbness, general loss of memory and shaky balance seem to me to have reverted to a level reached perhaps six or seven months ago.

If I was to turn the question around and ask the medics: how am I? They would instantly rely on documented notes and statistical evidence. If 100% represents full health what proportion of recovery have I reached? The answers become somewhat less precise. Am I fine? Well my self-confidence, rightly or wrongly, suggests: Yes. Actually half of me has no idea. If your stroke has seriously damaged your system’s ability to govern your sense of touch and fine motor movements in perhaps, say, half of your body, you will understand. Can’t see that hand or foot with your own eyes? It might as well not exist because you are unable to feel or sense it any longer. Weird. I find myself in a strange limbo where I no longer feel able to judge pain, discomfort or wellbeing, to assess accurately risk or benefit over time – past or future – as I used to do. Why? Because it is very difficult to judge what is caused by the after-effects of the stroke or some other medical issue. I can imagine I've been the victim of a stage magician and presented to myself in a mirror as a human chopped in half right down the centre. The rest of the world sees an ordinary, normal human. What has been unimpaired, thankfully, is the admiration I bear for the 24-hour specialist care and nursing attention I received from NHS Tayside – initially at Ninewells in Dundee and thereafter while an in-patient for six weeks at PRI's stroke unit.

From simple tasks like helping me cut up food so that I could re-learn how to feed myself, assist with early morning washing and dressing, to more physical challenges like practising regaining a sense of balance and tackling steps and stairs. All were dispensed with a professional authority but without generating any feeling of inferiority that I was somehow a “poor auld soul.” Quite the opposite. I was engaged with endlessly cheerful and positive staff who always seemed to remember every small detail of my condition or be aware of the next careful step in my treatment programme and how to encourage me positively to face up to it. No small feat when you looked around you at the diverse range of trauma they faced hourly.

One of the stroke unit’s unexpected assets was not the daily attentiveness of all the staff, nor the admirably well-equipped wards, gym and therapy rooms, but its volunteer-maintained garden looking out over the city rooftops to the distant expanse of the vale of Strathmore. It regularly delivered me peace, tranquility and a genuine sense of timeless progress to which I could aspire. Returning home, however, I came face-to-face with perhaps the most serious rehab challenges lurking for this stroke sufferer – all of them psychological.

If there is one area of care which I felt could, and should, have more attention, it is how I might have been better educated and prepared for tackling the huge mental stresses of life for the foreseeable future awaiting those with major disabilities like mine. One example will suffice. I encountered the issue by accident – an overheard conversation – because it was not a subject that I had considered or discussed. But it meant facing head-on the blunt reality that my wife was sacrificing so much of her personal life to take care of me and our home; discovering that she had informed her friends that for the time being she would be unable to join them on small holiday breaks away because she did not feel comfortable leaving me to look after myself. Love and kindness at home and throughout the care community deserve to stand head and shoulders above all else, but instead I now am painfully aware that I’ve been drowning out choruses of praise and applause with regular outbursts of angry frustration at my own clumsiness, ponderous approach to routine daily tasks, forgetfulness and general loss of independence. From life as a fully active, fit and youthful senior citizen to a tottering, mumbling, grumpy old pensioner unable to hold a pen never mind write his own name, is a difficult transition to come to terms with.