Diary: Bridges in a Group 2

Different strokes

Lemon Polenta cake, Scottish shortbreads and Malteser chocolate bunnies: I could get used to hanging out with stroke survivors, says Billy Mann

I’m only half joking. This outbreak of gluttony came at the start of the final session in a PhD study by Ella Clark at UCLH into testing Bridges Self Management for stroke survivors in a group setting. We were all stuffing our faces and grinning madly.

Bridges is a project pioneered by Prof Fiona Jones at St George’s hospital in Tooting, London. The mission is to help stroke survivors build their own step programmes to meet long-term goals set by themselves. These goals vary in the widest sense, but the Bridges approach seeks to find a series of baby steps by which big gains can become part of everyday life. It’s a method that will work for some but not always for others.

Motivation is a key player in progressive recovery and these four-week trials were part of a study to see if fellow group members (6-8) could play a role in the process by offering mutual support. In the three trials I helped facilitate, the goals of the group members varied depending on the individual, any support they might or might not have, and in the ways their stroke had impacted on their lives. In the second group I joined, one member wanted to try to regain some of the problem-solving skills he had lost. He mentioned crossword puzzles and arithmetic in particular. Another member defined as a goal writing and signing a Thankyou card for her daughter and her husband.

It is always fascinating to watch small-group dynamics unfold. You instinctively reach for the reality-TV stereotypes and make snap judgements about personalities, only to be confounded in the next session by behaviour in total opposition to your initial prejudice. Baddies become goodies and that bossy boots turns into a pussycat. The relationships between individual characters are thrown into relief and you sometimes end up siding with the person you thought at first you would dislike the most.

Group members respond in different ways to different types of stimuli. One identified her goal as getting back to cooking and entertaining. The stroke had left her unable to plan, organise and implement a dinner party for friends. Fatigue wiped her out and the mere thought of it built in her mind to become an impossible task.

By just talking about food, the group learned of some of her favourite dishes and the special ways she prepared them. All of this took place in the context of a natural conversation, so when it was proposed that she might cook a cake for the group, a competitive twinkle appeared in her eye. She wanted to show us she could do it. And she did. The lemon polenta cake mentioned in the opening paragraph is the proof. The zing of the lemon was a sensory delight.

But her determination didn’t stop there. She had also completed and fed friends with specialty dishes of lamb and salt beef. She was obviously on a roll. If we were giving out marks, she passed with distinction.

A recurring issue among members in all the groups I was involved with was whether the post-stroke difficulties they now face and experience were related directly to the stroke, or whether they were part of natural ageing. Forgetfulness was the chief example. This was especially the case among some of the older group members.

Balancing time with health needs emerged as a another challenge. Take on too much and it might end up costing you in terms of stress and fatigue. Take on too little and it seems like you are treading water, stuck in a rut, but all the time feeling you should be more dynamic, making more progress, just doing things.

One member talked about withdrawing from what was once his very active participation on neighbourhood committees and working groups. He had taken several steps back and, by rationing his time more selectively, was able to focus on and tackle a specialist academic mentoring role, which had proved far more personally rewarding and much better suited to the skills he had built over many years.

But in stepping back he also stepped forward to wrest control of low-key domestic aspects of his life from his children, who had intervened to ensure his comfort. He was calling the shots now and, bit by bit, nurturing a newfound self-reliance.

Towards the end of the final session, one of the group asked Ella if she had a title for the published study that would emerge from these eight group trials. Not yet was her answer, so cheekily I asked the group what might be the key words that would help Ella come up with a successful title.

Earlier in the session that day I had tried to summarise the essence of the past four weeks. In my notebook, I had written “the power/potential of peer support”. Looking at this now I am horrified by its inadequacy. In collecting the thoughts of the other group members, the word that won the day was “sharing”.

Throughout the final session, many of the group had identified in their own ways the importance of sharing. One member spoke of how rare it was for her to share her stroke experience with people who could readily empathise. She said she no longer “felt so alone”. Another talked about how positivity breeds positivity and that the group sessions had somehow almost magically instigated an outbreak of optimism.

Sharing is one of the enduring themes of the early 21st century, much of it enabled by the world wide web. Touch that SHARE button on your digital device and look at the ever-growing number of platforms across which you can connect with others: Facebook, Twitter, Instagram, LinkedIn…


Yet, yet, yet… sharing a traumatic experience with relative strangers is not easily done. The group found that doing it in person, face-to-face, with all the risk any kind of human encounter throws up, was overwhelmingly positive. One group member used the word “transformative” and, when pressed, explained how, as bad as having a stroke is, in some respects it offers an opportunity for renewal, a chance to become a new person. Another talked about life after stroke as an exercise in planting seeds. These, for me, were both fitting remarks to herald the onset of Spring and to end what had for me been a fascinating experience.

See the lemon polenta cake recipe

Headway: Memory

You must remember this

When he noticed that song lyrics seemed immune from memory loss following brain injury, Billy Mann got to wondering what it is exactly that stimulates our ability to recall and recollect

There are advantages to having a brain injury. At social and formal gatherings you are allowed to forget things. You can walk into a room, be introduced to half a dozen people and instantly forget their names. Then, when you bump into one of them later, they forgive you when you whimper, pathetically, “I’m sorry, but I’ve forgotten your name.”

Memory problems are very common among people with brain injuries. One day a week, I attend Headway East London in Hackney. Some of my fellow members there cannot remember my name from one moment to the next. One of them, Sharon, who I have now been happily greeting each week for around two years, stares at me, her face screwed up in quizzical concentration.

“It begins with a B...” she says.

“Yes,” I answer, and wait a few beats.

“Bobby?"

"No. Billy."

That we have arrived at B in two years is, I like to think, some kind of minor miracle.

Another member I see regularly is Stuart, who also suffers from acute memory problems. Stuart and I have a part-share in a backstory. We are both a similar age and we both lived in Liverpool during the late 1980s. Like Sharon, Stuart greets me each week with a confused and inscrutable look. He will then take a guess at my identity.

"Scouser?"

What both Sharon and Stuart share, other than their difficulties with short-term memory, is a love of music. In Sharon's case, this comes down to a girlish infatuation with The Osmonds, an American family group popular in the 1970s. They were five brothers — Alan, Wayne, Merrill, Jay and Donny. Other Osmonds (Mormons, big family, etc) also enjoyed some commercial success on the 1970s music scene, notably Marie with a memorable song, Paper Roses, and Little Jimmy Osmond with a cheeky number titled Long Haired Lover from Liverpool. The Osmond Brothers themselves had many hit records, but the one that comes to mind right now is 1974’s Love Me for a Reason. It comes to mind because with those five words Sharon's memory is thrown on to some kind of neurological dancefloor and the words come flooding back:

Don't love me for fun, girl
Let me be the one, girl
Love me for a reason
Let the reason be love

In 1995 the boyband Boyzone attempted their own version of the song, but as Sharon is quick to remark, it was nothing on the Osmonds’ rendition. She might have put it less politely.

The routine with Stuart is similar. In his case we have an ongoing exchange relating to music from 1970s-80s Liverpool (Stuart was a performing musician in the city then). Our first meeting point each week normally involves an exchange of lyrics from a band associated with Liverpool called The Scaffold, a trio that actually started in the heady days of the 1960s and enjoyed notable success during that swinging decade. They were a performing ratatouille of comedy, poetry and music featuring Mike McGear (real name Peter Michael McCartney and brother of Paul McCartney), Roger McGough (he’s that Poetry Please guy off the radio) and madcap funnyman John Gorman. Each week Stuart will smile brightly in my direction and say “Thank you very much for the Aintree Iron” (a line from the Scaffold song Thank U Very Much), to which I will reply “Did you get your medicinal compound, Stuart?” (from the Scaffold song Lily The Pink). Stuart catches on to this game without hesitation and answers with another lyrical reference to Lily The Pink.

“Yes, most efficacious in every way.”

Clearly both Sharon and Stuart have a thing about song lyrics that makes words stick in their heads. It is a joy to witness, and obviously a potential open door for therapists. But part of me wonders what other memory triggers are sitting hidden in damaged brains everywhere. Could I, for example, attempt a not-so controlled experiment in which I appear casually to mention the character Boss Hogg from the 1980s US TV show The Dukes of Hazzard while actually fishing for a bit of anecdotal evidence on the importance of popular culture in understanding a badly misfiring memory.

Memory is a strange fruit. It is part of that thing we would like to call our soul, but we know little about it. At best I am prepared to stick my neck out and say that memory is the slippery customer that skates the thin ice that separates the neuro from the psycho. There is also something about memory that repels fiddling. Mess around with it and you risk the wrath of the gods, etc.

Which draws me back to where I started. There is another advantage to having a brain injury. I call it the Automatic Exit Strategy (AES). When you are at a social or formal gathering and starting to glaze over with boredom right in front of someone, you can just say, “Sorry, I have to go now” and they won't turn to the person next to them and say, “How rude was that?” I have an agreed version of this with my wife. I say, “I’ll just go and sit down and shut up, shall I?” to which she replies, “Yes, please.”

OK, then, that's my cue to leave the table. Bye for now. And don’t go trying to tinker with any of those memories while I’m gone.

Sharon is not her real name.

Diary: Speech after stroke

Speakeasy

'Finding words' after brain injury. The process of discovery can be both bewildering and endlessly challenging, says Billy Mann

I read a report recently with the headline Comedians’ ‘gift of the gab’ linked to differences in brain activity and it occurred to me that as I have recovered from the effects of a stroke more than two years ago I have become more articulate. I have no idea whether the two are causally related. In fact, I have no idea whether I have actually become more articulate (my wife is doubtful), and I am not sure how this could ever be measured. All I know is that the words seem to flow more easily, if that is a definition of articulacy. I cannot be certain how easily they flowed before my brain injury, but I do recall incidents in which I felt “tongue-tied” or “lost for words”. Now, instead I sometimes feel verbally incontinent. The experience of not finding the right word at the right time is not unusual. Who has not emerged from a stalled conversation and not reflected later that “I wish I had said that…” Not now. Not for me, anyway. In fact, I suspect sometimes that my brain injury has left me with a special variant type of Tourette’s in which I can’t stop saying what I think.