Stroke Recovery Association of BC

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Archive for September, 2016

Sonnets and Stroke Recovery

Complex investigations were an everyday challenge for former private investigator Shelagh Brennand, but when she suffered from a stroke her brain was completely rewired. Focusing on minute details became next to impossible, while a sonnet would roll off her tongue with no effort at all.
It was a change that perplexed Shelagh, who had a 25-year career in the UK Police Service before becoming a private investigator in Australia in 2008. The stroke hit without warning on April 15, 2013, when a clot travelled through the back of her neck and into her brain.

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“It wiped me out – I felt ill and nauseous and put my head into the toilet to be sick and passed out. I came to in the ambulance and I was trying to tell (the paramedics) things but I couldn’t talk. I was aware, albeit I kept falling asleep and coming back again, so it was a bit scary. When I realised I’d had a stroke, I panicked that I would never be able to talk again.”
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Although she only spent a few days in hospital, the rehabilitation road began immediately, with speech therapy and physio.
“My speech came back right away and my leg was playing up a bit but the movement came back quite quick. Physically I was good. I slept a lot most afternoons for a couple of hours and would still sleep on a night – I couldn’t get enough sleep but I still felt very weak and [it was] just very difficult to concentrate, I suppose, for quite a few weeks. I felt like I’d climbed a mountain and every little thing was impacting on my body.”
With husband David working away and her son Patrick at school five days a week, being isolated at home while in recovery led Shelagh down the dark road to depression.
“I got post-stroke depression really badly, going from doing what I did to not being able to process things as quickly as I used to be able to. I was always a doer and a go-getter, and not be laid up in my bed, fatigued, thinking ‘What do I do now? Will I feel better? Will I feel more myself?”
Despite the threatening self-doubt and the struggle to come to terms with never pursuing the career she had once thrived in, Shelagh began to find a pattern in her thoughts – they worked better in “ode”.
“I knew that my brain would eventually function and I found it did function better if I thought in rhymes, so I would try to make each thought rhyme at the end of the sentence and I began writing them down. The poetry got me through my deepest, darkest moments and also through the frustrating and sometimes amusing times of my memory loss.”
At the insistence of her counsellor, Shelagh self-published the book and began to embrace the power of the words that were flowing through her.
“At first the poems were driving me crackers because I couldn’t sleep and they would come to me,” she said.
“But she said it was like my brain was full of cabinets and my stroke had closed of those cabinets. But there were new cabinets opening that had never been opened before. From then on, I looked at it like that and no longer fought the poetry.”
The poems have also resonated with hundreds of stroke survivors and others who have suffered trauma since Shelagh self-published her finest pieces in A Stroke of Poetry in October last year.

To contact Shelagh or find out more please go here: https://www.facebook.com/astrokeofpoetry/

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Home at Last

Written by Bonnie Irving

This article first appeared here: http://news.fraserhealth.ca/News/April-2015/Home-at-last.aspx

When Haresh Bhatt was dining out in Vancouver on May 6, 2014, he and his family would have had no idea that the sudden tingling on his left side would end up having such devastating consequences for all of them – or that it would take five long months before Haresh would sleep in his own bed again.

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That tingling heralded a massive stroke for the 50-year-old Coquitlam entrepreneur. Paramedics rushed the barely conscious Haresh to Vancouver General Hospital where he spent five days in the intensive care unit before being transferred to an inpatient ward, where he remained for the next two months, unable to communicate and with little or no movement on his left side. Once stable, on July 10 he was transferred to Royal Columbian Hospital (RCH).

Over the next month in RCH, Haresh showed some neurological improvement, but was still having difficulty communicating beyond one or two soft-spoken words. He needed help with all the activities of daily living – eating, toileting and grooming – and required two people to use a lift to get him up.
With these deficits, on July 31 Haresh was transferred to the high-intensity rehabilitation unit at Eagle Ridge Hospital (ERH) where his length of stay would be determined not only by his progress but also by a clinical assessment of his potential for progress. In this unit the care team, comprising nurses and allied health professionals, worked with Haresh to determine a rehabilitation plan of care including his goals to regain independence.
While his family naturally hoped he could regain much of his previous level of function, the rehab care team had a more modest goal at the outset – to help him improve his sitting posture and to propel himself in a wheelchair. If achieved, this would give him an important measure of independence for the future.
After a month of rehab at Eagle Ridge, Haresh did show some improvement, particularly in his ability to answer questions and to follow brief instructions. However, he still needed help with all his daily activities, and he still required two people and a lift to transfer to a wheelchair. His care team determined that he had progressed as far as he could on their unit.
The question now: could he go home given the amount of assistance he would need or was he more appropriately destined for residential care?
To find out, on September 3 he was transferred to the ERH Patient Assessment and Transition to Home (PATH) unit for an assessment. Depending on the outcome, this move might take him another step closer to home – where he wanted to be and where his care providers knew he would do best. If it was possible, the PATH team and their Home Health colleagues could help make that happen. After all, Fraser Health is the pioneer of the ‘Home is Best’ philosophy in BC.

Home is Best in Action

Like all families in this situation, Haresh’s wife, Hema, and their two daughters were struggling to come to grips with the effects of the stroke on their lives. They didn’t understand why their husband and father had been discharged from the rehab unit before he had recovered.
Those concerns brought Haresh and his family into contact with PATH Manager Irene Cheung. “I explained to Mrs. Bhatt that what was best for her husband was not more time in hospital, with all the risks for someone in his condition,” says Cheung, “but to go home and work with a plan to improve his function as much as possible.”
Gradually Hema Bhatt came to accept that home would be the best place to continue his recovery. “Patients need to go home to be near loved ones and that alone jumpstarts the healing process,” she says today.
Although Cheung was sure Haresh’s chances of improving would increase at home rather than in residential care, she was not sure she could actually get him there. “He was assessed as functioning at a residential care level and he still needed two people to lift him,” she says.
“But the PATH and Home Health teams were determined to get him home,” says Cheung, “and everybody just did whatever they had to do to make it happen.”
Together the PATH and Home Health occupational therapists assessed one of the areas of greatest concern – the modifications Haresh’s home might need to accommodate his changed circumstances. They concluded he needed a non-standard wheelchair to fit narrow doorways, a ceiling lift, a special mattress, a commode, and a bathroom renovation. The solution: the Red Cross could lend the equipment as part of the HELP program and the family would do the necessary renovations.

As well, the community care professional managing Haresh’s discharge planning had determined that Haresh’s extensive care needs would not fit a regular home support schedule. Fortunately, thanks to a government funding initiative called Home First, Fraser Health was able to augment the hours of home support needed for his daily activities. Private services would be needed as well, and the costs of those would fall to the family.
The Home Health program also brought in Fraser Health’s Acquired Brain Injury (ABI) program. Depending on the needs of the patient, ABI’s health professionals and life skill workers can assist patients in their recovery.

Home At Last

By October, every detail had been worked out to facilitate Haresh’s return home, and on October 8, 2014, he was discharged into the care of what Irene Cheung describes as “his strong, supportive family.” His level of function remained about the same as when he was admitted to PATH, says Cheung, but he appeared unfazed by his situation.
For Hema Bhatt, “the fear and all the uncertainties of bringing Haresh home and how we would manage was difficult,” she says.
“But it helped that we had a structured plan and that Fraser Health had helped us organize all the items required – from food to diapers to other health care items including equipment. Having a case manager to listen and guide us was also very helpful.”
Haresh left hospital with an exercise plan created by the PATH physiotherapist as well as information about safety systems such as Lifeline Medical Alert and community resources such as HandyDART.
The family immediately hired a private company to provide physio three times a week until Fraser Health was able to step in three months later. “From then on he started to build strength,” says Hema, “and was able to sit on the side of the bed with the support of a pole.”

Within a few days of discharge, a community care nurse from PATH visited Haresh to assess the home support plan and to adjust the hours of support if necessary. This service is being piloted to ensure the patient and family are coping and to prevent unnecessary readmissions. Within two weeks another Home Health outreach worker visited Haresh to assess the overall situation.
Since he has left hospital and returned home, Hema says there has been a “significant change” in her husband, which she attributes to “the familiar home setting, where children and family and friends come by, chatting and laughing with him.”
Says Hema: “We would have breakfasts and dinners together as a family and encourage conversation with him. He could see us around all the time and we took turns using the iPad and computer with him to watch videos of our vacations and birthday parties, and look at photo albums. Best of all, he could smell the food that was cooking and say ‘Smells good, I’m getting hungry.’”
The community care professional who oversaw Haresh’s case was present six months later when Haresh stood for the first time since his stroke. “It was pretty emotional for the family, and for me,” says Julie Ott. He is now able to transfer without the use of the lift and is able to lift his left leg.

Looking back

Hema Bhatt wishes the events of May 6 had never happened. At the very least she hopes Haresh will regain most of his functions over time. But this journey has taught her that happy endings are not always that neat. For her and her family, having Haresh home is happy ending enough for now.
Says Hema: “In theory it is an overwhelming process for the family, but with help and home health services provided, it all comes together.”

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My Love Affair With the Brain: The Life and Science of Dr. Marian Diamond

Enrichment, plasticity – capabilities of the brain we now take for granted – were the scientific battleground where Dr. Marian Diamond decisively challenged the old view and changed forever our paradigm for understanding the brain … and all our lives as well. What she revealed about the brain allows us to get the most out of our brain, not just as children but for our entire lives.

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Her YouTube lecture series has almost 2 million hits.

She did the first-ever scientific analysis of the most famous brain ever, Albert Einstein.

She is a beloved professor, worthy role model especially for women and girls in science, and all round brain-whisperer.

The documentary My Love Affair With the Brain: The Life and Science of Dr. Marian Diamond is part biography, part scientific adventure story, part inspirational tale – filmed over 5 years. Catherine Ryan and Gary Weimberg’s film follows this remarkable woman over a 5-year period and introduces the viewer to both her many scientific accomplishments and the warm, funny, and thoroughly charming woman herself, who describes her 60-year career researching the human brain as “pure joy.”

To find out more and see clips go here:

MY LOVE AFFAIR WITH THE BRAIN: The Life and Science of Dr. Marian Diamond (sample)

 

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The Defiant Mind: Living Inside a Stroke

“What is a stroke?” This is the question that plagues Ron Smith. In his new book entitled The Defiant Mind: Living Inside a Stroke he explores that question in depth from his perspective as a stroke survivor. The Defiant Mind is a necessary book for stroke survivors still dealing with the effects of their trauma and for caregivers, vital to the process of recuperation, who feel hampered and harried by concern and confusion. For medical professionals, the book offers insights into the workings of the brain, the power of the brain to heal, critiques of conventional limits imposed on therapy and suggestions for ways to improve care. We interviewed Ron recently to find out more.

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How long ago did you have your stroke?

I had my stroke on November 19, 2012, a day, as a stroke survivor, you never forget and your family never forgets. So many people are affected.

What was your first thought when you were told you had suffered a stroke?

Disbelief. I was in denial from the onset. I had what the emergency doctor referred to as a stuttering stroke. I think what he meant by this is that I had a series of smaller strokes before the bigger stroke hit. After the major event, which happened in the waiting room of emergency, I wasn’t having thoughts that registered. I inhabited a place I can only describe as ‘limbo’.

What main challenges did you face and how did you overcome them?

Paralysis. My right side was paralyzed. This was frightening. Initially my speech was impaired but this righted itself fairly quickly. With a little effort, people could understand me after a few days. Perhaps the biggest problem was that I didn’t feel like I belonged to the world anymore even though I felt my cognitive powers were still intact. The combination of loss of physical and emotional control and the sense of no longer belonging to the everyday world resulted in severe depression. After a week and a half I decided I could either wallow in self-pity or take action. In combination with physical therapy I decided to meditate. Eventually I was able to travel to the injured parts of my body. I also decided, very deliberately, that I needed to take a positive and proactive approach to my recovery. I have never stopped therapy. I have read as much as possible by other stroke survivors and a number of books on the brain, brain plasticity and new forms of therapy. I also used memory to find my way back to myself, to the person I had been. Patience is vital to the stroke survivor’s well-being because recovery can be very slow.

Please tell us about your writing.

Before my stroke I taught English and Creative Writing at the university level; I owned a publishing company; and I wrote and published books (poetry, fiction, non-fiction and children’s books). I was lucky, writing was my life and was a vocation to which I could return with relative ease. Too many stroke survivors can’t return to what they did in their former life; to something they loved doing. Eight months after my stroke I decided to write about my stroke experience. My only handicap was that I had lost the use of my right hand. I typed my book, The Defiant Mind: Living Inside a Stroke, over 300 pages, with the index finger on my left hand. The Defiant Mind is a book about the wonder that is the human brain, both before it has been damaged and after, when it’s struggling to pick up the pieces and make some sense of the muddle it has become ― the jigsaw puzzle of scattered recollections, unidentifiable objects, inexplicable emotions, impenetrable ideas. I hoped the book would be useful to other stroke survivors, care-givers and therapists. I also hoped it would help the general public understand what a stroke is, at least from my perspective. I felt that most people simply didn’t understand stroke; I certainly didn’t before my brain attack. I think most people see stroke as heart attack’s lesser cousin. But if my book doesn’t achieve these goals at least it will have been another form of therapy for me; another way to explore my own experience. Writing also puts my brain to work, which seems essential to my recovery. I still write poems and I’m now plotting a novel that has been nagging me for years.

How did having a stroke affect your daily activities?

As with most stroke survivors, in some ways my life has changed dramatically, in other ways not much. I’m still handicapped so there are many activities I can no longer do. I used to play golf. I no longer can, although recently I have gone with a friend to try to hit balls. Most of our time is spent sitting on a bench talking about Tai Chi and various other exercises that might help me. He’s a martial arts expert. Being in an old familiar environment is simply good for my spirit. I tire more easily than I used to; I take a nap at least once a day. I can’t work in the garden which I used to love doing, my hands in soil. But I still enjoy the plants, so I sit amongst them and the trees. And there are a few little things like tying my shoes I can’t do, but my ultimate goal is to care for myself. I’m determined to do as much possible for myself. Yes, I get frustrated but then I think about how far I’ve come. At least three to four times a week I go to a local pool. I can exercise in water with abandon. I love the water’s primal feel and wish it had been a part of my therapy from the beginning. Otherwise I try to do as many of the things I used to do, with a little less rush.

If there’s a message you could send others who are recovering from a stroke, what would you say to them?

“Expect full recovery,” Jill Bolte Taylor advises. I agree. I have experienced new neuro pathways forming, literally. There is no time limit on changes. They may be slow, very slow, but they happen. As the Irish proverb says, “When God made time, He made plenty of it.”
Are there any ways in which your life is better now?
In some ways I feel I’m more productive now than I was before. As hackneyed as this sounds, I appreciate life more than I did before. I’m happy to have witnessed the birth of a new grandson; this was pretty special.

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