How strokes affect mental health

In September 2019, three weeks after I retired as a senior lecturer at Leeds Beckett University, I suffered a stroke. I started writing about my experiences from my hospital bed as a way of trying to come to terms with what had happened to me.

After I stopped writing about the stroke, I started receiving emails and text messages asking me to continue penning them. I asked why. Stroke survivors said I had helped them come to terms with their condition and their partners, family and friends said the posts had helped them better understand what the survivors were going through.

Four weeks ago people have asked me how the stroke has affected my mental health. It’s easy to talk about the physical aspects, people can see what effect that has had on me, but writing how you feel is altogether a different matter. For one it’s deeply personal, and if truth be told, I’m a bit of an introvert and loner.

However, I’ve decided to pen two blogs to cover the psychological impacts of a stroke and recommend some texts and sources for further help that I have found particularly useful to aid my recovery. I hope they are of help.

But first a recap first of why this is such an important subject.

Stroke is the largest cause of disability in the UK, 100,000 people have strokes each year and it’s the fourth biggest killer. Every two seconds, someone in the world will have a stroke[ii]. The annual cost to society of new cases of stroke is ￡5.3 billion, of which ￡1.6 billion (30%) is the cost of NHS care[iii]. The upside is that due to advances in medicine there are now over 1.2 million stroke survivors in this country.

According to the Greater Manchester Integrated Stroke Delivery Network[iv]?"around two thirds of stroke survivors are left with some form of physical, mental or emotional disability - often completely life changing."?

I had an intracerebral haemorrhage (sudden bleeding into the tissues of the brain) is the cause of 1 in 10 strokes. About 44% of those affected die within a month. A good outcome occurs in about 20% of those affected[v].

I constantly remind myself that I was very, very lucky. I got into hospital within four hours of having my stroke thanks to my wife Caroline, a former London intensive care unit nurse, who spotted the symptoms.?

Fortunately, I never lost my speech or cognitive ability. Many patients do, and unlike me they are left in limbo, locked into their own bodies. I had my stroke barely three weeks after retiring from university teaching.

The more common type of stroke, an ischaemic stroke is usually caused by a blood clot that blocks or plugs a blood vessel in the brain. This keeps blood from flowing to the brain. Within minutes, brain cells begin to die, but can be resolved through surgery nd/or rehabilitation the brain can repair itself.

The mental anguish of strokes – Part 1

I have this recurring dream that I am lost inside a nondescript multistorey hotel and am trying to find where my room is.

I am wandering down dimly lit corridors trying to remember did I take the left or right corridor from the lift to get to my room? Am I supposed to be on this floor or the one above? All the floors look the same - the same dreary purple carpeting, the same beige walls, the same brown simulated-wood doors.

I get increasingly desperate as my electronic door key doesn’t have a door number on it and I’ve lost the key pouch with the room number. This being a budget hotel chain the reception desk is now closed.

Then I wake up with a start and realise that it’s half past three in the morning and rather than standing lost in a hotel corridor I’m in bed at home with my wife Caroline. But I just can’t get back to sleep. I’m too worried. I feel like some aimless soul stuck in the middle of ‘Insomnia’ the song by the English band Faithless. I can hear lead singer Maxi Jazz intoning: “And here we are, Half past three in the morning, I can't get no sleep.” I know just how he feels!

I get this dream intermittently interspersed with memories of my post World War Two childhood in Berlin, Hamburg, Osnabrück and Singapore. The dreams are so vivid that I can picture my German nanny[vi] guiding me down the Ku'damm in Berlin and past the bombed-out Kaiser Wilhelm Memorial Church with its still standing spire the “der Hohle zahn” (the hollow tooth).

In my dreams I also recollect attending reunion ‘parties’ between parents and their children who had been placed in convents, orphanages, or with foster families during WW2. These were the Kriegskinder, or ‘war children’ because they grew up in Germany during the war.

I came to Berlin in 1948 with my mother on one of the last trains to cross Germany before the Soviets blockaded rail, road, and water access to Allied-controlled areas of Berlin which then led to the infamous Berlin Airlift.

My wife Caroline says she sometimes hears me murmuring in German in my sleep - the only language I could speak until the age of six and which I haven’t spoken since then.

It’s all very weird and unsettling, but I was interested to learn in a Zoom meeting with fellow stroke survivors that I am not alone in having flashbacks to my early childhood. It’s as though our strokes have opened secret drawers in our brains. Such are the odd things that happen to your mind following a stroke. My stroke left me temporarily paralysed down the left side of my body. I had to learn how to walk, feed and wash myself – just like a child.

I then compounded the situation by falling down the stairs at home in January 2020 fracturing my tibia and fibula which necessitated a plate being inserted into my right leg. At least when we get to fly again or travel by Eurostar I will have reason to be stopped going through the airport body scanner.

The psychological impacts of a stroke

The psychological impacts of a stroke are difficult to quantify. The more I try and rationalise the images I have in my dreams, the more mysterious they become. It’s like I’m living through a supernatural thriller.

I can’t make sense of it all. Is my brain trying to play tricks? Or is it simply that the left-hand side of my brain is just having a good old fashioned face-to-face discussion with the right-hand side of my brain to come to a consensus of how they are going to play it with me when I awake??

It's reassuring that post stroke depression is recognised by physicians as being pretty common. It’s strangely comforting to know that as a stroke survivor you are not alone.

According to Dr Amanda Woodward[vii], associate professor, School of Social Work, Michigan State University, depression comes about for a number of reasons. “A stroke is a traumatic event and because it affects the brain there can also be a physiological change that leads to depression.” I also find that my attention span has got much worse.

According to Dr David Chiu[viii], medical director, Houston Methodist Eddy Scurlock Stroke Center, Houston, there’s a high prevalence of “mood disturbance after stroke” caused by changes in the brain’s chemistry.

He says that there is a “very strong link between this alteration of neurochemistry and disturbances of mood.” About 70% of patients experience physical and mental tiredness or exhaustion after a stroke and 50% find tiredness to be their main problem[ix].?Changes in mood, such as depression, can occur in as many as a third of patients after a stroke.

This says Dr Chui “may become apparent only later, so it’s important to watch for it[x].” That’s what I found. Depression has kicked in with a vengeance since the start of 2021 and it has little to do with lockdown under Covid-19, because I was getting used to being housebound since my stroke in 2019.

Now that I have come to terms with my physical disabilities – a constant fizzing in my left hand and cramp in my left thigh – I seem to spend an inordinate amount of time worrying about my future. What do I do know, how long will I continue to feel tired and exhausted, when am I going to regain that zest for life that I had prior to my stroke?

I’m using my background in public relations and experience in handling crises from a communications point of view to resolve the psychological and physiological problems. Analysing the issues by asking the who, why, what, where, when and how questions. Then try to find answers and solutions to them.

Part 2 - Anxiety and stress, Self-esteem and self-image, MyWellbeing College and recommended texts and books on strokes to follow

Sources

[i] Maxi Jazz and Sister Bliss (1996). Insomnia. London: Cheeky Records.

[ii] Stroke Association. (2018). State of the Nation. Available: https://www.stroke.org.uk/sites/default/files/state_of_the_nation_2018.pdf. Last accessed 11 February 2021.

[iii] Anita Patel, Vladislav Berdunov, Derek King, Zahidul Quayyum, Raphael Wittenberg, Martin Knapp. (October 2017). Current, future and avoidable costs of stroke in the UK. Centre for Primary Care & Public Health, Queen Mary University of London and the Personal Social Services Research Unit, London School of Economics and Political Science for the Stroke Association. 12.

[iv] Greater Manchester Integrated Stroke Delivery Network. (2021). Available: https://www.gmisdn.org.uk/. Last accessed 12 February 2021.

[v] Caceres, JA; Goldstein, JN (August 2012). "Intracranial hemorrhage". Emergency Medicine Clinics of North America. 30 (3): 771–94

[vi] My father a career soldier was posted to Berlin at the end of the Second World War. Although born in Doncaster in February 1948. I was barely three months old before I travelled with my mother to Berlin. The U.S., British, and Soviet military forces divided Berlin and occupied Germany into occupation zones. Berlin was located far inside Soviet-controlled eastern Germany. The United States, United Kingdom, and France controlled western portions of the city, while Soviet troops controlled the eastern sector. The wartime alliance between the Western Allies and the Soviet Union ended and relations turned hostile leading to the first Berlin crisis of the Cold War. The United States and United Kingdom responded by airlifting food and fuel to Berlin from Allied airbases in western Germany. The crisis ended on May 12, 1949..

[vii] Mike Dow, David Dow and Megan Sutton. (2017). Chapter 11: Recovering You. In: Healing the Broken Brain: Leading Experts Answer 100 Questions About Stroke. London: Hay House UK. 222.

[viii] Mike Dow, David Dow and Megan Sutton. (2017). Chapter 11: Recovering You. In: Healing the Broken Brain: Leading Experts Answer 100 Questions About Stroke. London: Hay House UK. 222.

[ix] Tom Balchin. (2020). Chapter 4: Effects Resulting from Stroke. In: Had a Stroke? Now What? Hospital Rehabilitation and Beyond. Lingfield, Surrey: Bagwyn. 221.

[x] Mike Dow, David Dow and Megan Sutton. (2017). Chapter 2: Stroke Treatment. In: Healing the Broken Brain: Leading Experts Answer 100 Questions About Stroke. London: Hay House UK. 222.