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Archive for September, 2015

Book Review: Out of Darkness by Allison O’Reilly

OutOfDarknessOut of Darkness is a personal look at the overwhelming challenges of a brain stem stroke, the painstaking process of relearning everything, the meaning of patience and the responsibilities that fall to a loving husband who wants the best possible treatment for his wife.

In an inspirational memoir, Allison O’Reilly shares her encouraging story of stroke and the rare Locked-In Syndrome she experienced, and her miraculous recovery, despite enormous odds.

The physical recovery process is described in general terms. This reading does not serve as a ‘how to’ manual for recovery techniques and processes. Its value is in the demonstration that a positive attitude, a good medical team and a strong social and family network can overcome even the direst of situations. It is a unique opportunity for the reader to gain from the rare insight that comes in the form of a survivor’s voice.

“It is truly times like these that make you wonder about the meaning of life and why difficult times are often imposed on those that seem to deserve it the least.

One weekend in the fall of 2010, I was a woman engaged in a full time career, my family and the challenges of daily life. Then over what should have been a normal day, my life radically changed.

Out of the Darkness chronicles my massive stroke along with my will and determination to fight for my life and independence. It’s about what you learn about yourself when faced with adversity.

This is a story of inspiration, love and hope, as well as, sharing lessons learned during devastating time. I have been told that people think of me and how I am overcoming my challenges as a modern hero and invaluable role model for those with little aches and pains.

Every Stroke is different and every recovery is different. Out of the Darkness is not meant to downplay people’s motivation or willingness to recover; it’s my story of healing, as well as sharing lessons learned with others during this devastating time and to be a non-clinical voice for the Medical community, especially for younger Stroke Survivors.”

For more information go here: http://outofthedarknessbook.org/

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A Summer Camp for Adults with Aphasia

When Christy Campbell had a stroke in 2005, she lost her ability to ChristyCampbellspeak and was left with one word: “yes.” Aged just 31, Campbell was diagnosed with aphasia – a neurological disorder that impairs a person’s ability to comprehend and express language. While Campbell could understand what her friends were saying, she could not participate in the conversations.

Rather than be silenced by aphasia, Campbell worked tirelessly to regain her speech and find new purpose in life. In 2010, she partnered with Dr. Barbara Purves, associate professor in the University of British Columbia’s School of Audiology and Speech Sciences and co founded the Sea to Sky Aphasia Camp.

The camp’s recreational activities help people with aphasia learn new ways to connect with one another in an environment adapted to their unique physical and communication needs. It also provides opportunities for UBC’s occupational, physical and recreational therapy students to work alongside medical and speech language therapy students.

Today Campbell’s struggle to communicate isn’t conspicuous, thanks to the speech language pathologists who were not only instrumental in her recovery, but also encouraged her to become an advocate. “Christy’s advocacy in support of people with communication disorders has been crucial to raising awareness about aphasia and speech language pathologists,” says Dr. Valter Ciocca, director of UBC’s School of Audiology and Speech Sciences.

In September 2014, the BC Government announced a multi million dollar investment in UBC’s Speech Language Pathology program – increasing the number of spaces by 56 per cent by 2016. “It is people like Christy, and her husband, Sean Standing, who should take credit for the government’s decision,” said Ciocca. In honour of Campbell and Purves, UBC recently established The Campbell Purves Aphasia Education Fund to support aphasia education and increase awareness. For more information on the Sea to Sky Aphasia Camp visit www.seatoskyaphasiacamp.com.

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8 Ways to Get Your Memory Back After Stroke

Some degree of memory loss affects about a third of people who survive a stroke. But it’s good to know there are things you can do to help get your memory back.

EightWays

“Memory deficits after a stroke can vary,” says Melissa (Muller) Meyers, OTD, an occupational therapist. The extent of your memory loss can depend on how old you are, the severity of your stroke, where your stroke occurred, and even the support you have from family and friends.”

No medication is known to help reverse memory loss after a stroke, Meyers says. But where drugs won’t help, you can take steps with activities, therapy, and rehabilitation to help recover your memory after stroke.

  1. Stimulate your brain. “Games that require you to use your brain, whether as simple as checkers or complex as chess, can help you regain your memory,” says Allen Kaisler-Meza, MD, medical director of the Good Samaritan Hospital Independent Rehabilitation Program in San Jose, California.
  2. Work with rehab specialists. Speech-language therapy enhances recovery. It helps by stimulating the brain to make neural connections from uninjured parts of the brain to those parts affected by stroke, Dr. Kaisler-Meza says.

Bob Mandell, now 71, who had a hemorrhagic stroke in 1996, credits various types of therapy, including speech therapy, with getting his memory back. Right after his stroke, Mandell of Naples, Florida, couldn’t get three words out and his memory loss was frustrating. But his determination to recover worked in his favor, and he believes others can do the same. “I worked really hard at therapy,” he says. He wrote about his recovery in the book Stroke Victor. “I did what psychologists called engaged therapy. I went all in, and that jarred my memory and my mind.”

  1. Post reminders for yourself. Leave notes in key areas, such as a sign in the bathroom reminding you to brush your teeth, says Stephen Page, OTR/L, PhD, an occupational therapist and associate professor at the School of Health and Rehabilitation Sciences at The Ohio State University College of Medicine in Columbus. Use the alarm on your smartphone or even an old-school clock to remind yourself of appointments and when to take your medications, Page adds. Once you form a routine, it will help you re-establish your memory. Meyers agrees that in her work with patients as a therapist, “creating a routine that is repetitive and consistent can help.”
  2. Make up mnemonics. Mnemonics are creative ways to remember things. They often take the form of an acronym, like the popular RICE: rest, ice, compression, and elevation — a shortcut to remember how to treat a sprain. You might make up your own mnemonic for the steps to cook a familiar meal, Page suggests. Rhymes also work, that associate a name with an object, like: “Shirley is the woman withcurly hair.”
  3. Get organized. Making it easy to see items you need for daily activities will help you remember what you need to do and when to do it, Meyers says. For example, lay out your clothes for the morning before you go to bed at night. Put your toothbrush on the sink where you’re sure to see it.
  4. Repeat and rehearse. When you’re given new information, repeat it to yourself several times, the American Stroke Association recommends. Go over the material as many times as you need for it to sink in. Don’t be afraid to repeat back, in your own words, what you’re told to be sure you understand it correctly. If you have to make a presentation or give a speech, break up the material into smaller segments. These will be easier to remember.
  5. Stay active. Get out of bed and move as much as possible, Kaisler-Meza says. A six-month exercise training program for patients promoted not only memory but also attention and conflict resolution in a small study of stroke survivors. And aerobic exercise promotes the recovery of brain function after a stroke, according to a study done on animals and published in the International Neurourology Journal.

Mandell, who was paralyzed on his right side after his stroke, believes exercise helped him regain his memory. “I always feel better after exercising,” he says. Exercise helps relieve stress and stress relief is important to brain health, he adds, noting that he tries to exercise almost every day.

RELATED: The Best Diet to Prevent Stroke

  1. Feed your brain. A brain-healthy diet includes lots of fresh fruits and vegetables and fish rich in omega-3 fatty acids, according to the American Stroke Association. Eating this way will help your brain recover optimally, Kaisler-Meza says.

A healthy diet and smaller portions helped Mandell lose the 30 pounds of excess weight he was carrying when he had his stroke. He believes that helped his mental recovery. He felt better, and feeling better improved his mental outlook.

Adapted from an article By Beth W. Orenstein that first appeared online: http://www.everydayhealth.com/news/8-ways-get-your-memory-back-after-stroke/

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Film Review: My Beautiful Broken Brain – a moving study of life after stroke

FilmReview

My Beautiful Broken Brain is the story of stroke survivor Lotje Sodderland. She suffered a catastrophic brain haemorrhage in 2011 at the age of 34; eight days later she contacted filmmaker Sophie Robinson to ask her to help document the aftermath. The pair initially filmed 150 hours of footage, most of it self-shot by Sodderland on her iPhone, which was edited to create this documentary piecing together Sodderland’s recovery. Sodderland and Robinson have made a beautiful film which at turns is frightening, as it reveals how close we all are to losing our essential selves, and hopeful. Studies and research are constantly striving to find out just what makes the brain tick and how we can help those who have had a severe brain injury come back to us; perhaps not as we knew them before but, as Sodderland puts it, with a new life, full of endless possibility.

The story begins with her friends and family recounting the event, then moves on to Sodderland’s first attempts to film herself. Her struggle with speech and obvious confusion and frustration are shocking and moving. Sodderland’s initial recordings express her delight and relief that she is alive at all, and given that stroke is the UK’s third biggest killer, and affects around 150,000 people each year, such feelings seem well founded. It is not unmixed delight however: although the blood clot was successfully removed, Sodderland’s neurologist explains that the damage to the brain was already done and is likely to be irreversible. Having to move back in with her mother, losing her independence and becoming “disabled”, is a struggle; at one point Sodderland says that she feels like a baby.

Sodderland eventually spends three months as an inpatient in Homerton’s neurological rehabilitation unit, working to improve her speech and deal with the demands of everyday life. Good humour and determination keep her going, even though we see her distress at getting her words wrong: the stroke has left her with aphasia, making it impossible for her to read and, at first, write. Part of her rehabilitation is to try and help her re-calibrate her brain hemispheres. Her neuro-psychologist explains that the pathways for reading and writing are slightly different: you don’t have to see to write, but you need the visual connections to read.

Sodderland’s desire to create her own narrative, to fix memories and move on with her life, leads her to join a research study into transcranial stimulation at University College London. This non-invasive brain stimulation technique aims to speed up language recovery. Sodderland dutifully goes to daily sessions and practices at home; she has her brain stimulated whilst hearing and seeing words on a screen, trying to help her make new neural pathways.

One of the most arresting features of the film is its visual style. The stroke caused impairment in Sodderland’s right eye; something her ophthalmologist says probably cannot be repaired. Robinson says that when Sodderland first started speaking to her about the “trippy” other-dimensional views she had from her right side “it became very important to use that and make the film feel a bit different so we can feel what it’s like in Lotje’s head”.

Indeed, the experience is very dreamlike, sometimes terrifying. Sodderland initially describes it as being like another dimension, which can make her feel euphoric and give her a new experience of colours and sounds. As the story continues, however, it is clear that the impairments haven’t remained quite so awe-inspiring, becoming instead “an exquisite painful nightmare” taking place in her head.

This is an absorbing study of how our sense of self is defined by our personal narrative and the memories we write each moment, and what it means to lose the ability to make those memories. It is also a reminder of the nature of personal independence. As Sodderland points out, when you are unable to communicate and tell your story, you can’t live your life in an independent way, you’ll always need someone to help. With her sense of time removed, and unable to remember things, the sense of the significance for Sodderland of making the film and preserving her story was palpable, despite her admisson after the screening that she no longer watches it. The audience is implicated in Sodderland’s story; we will remember even if she can’t.

My Beautiful Broken Brain is a moving film which deals with the philosophy of who we are and what makes us a person, alongside showing us just how fragile our understanding of the brain is. It’s significant how often the physicians involved in Sodderland’s care use the phrase “I don’t know”. The brain remains a mysterious place.

For more information please visit www.mybeautifulbrokenbrain.com

Adapted from an article that first appeared in The Guardian newspaper in the UK:

http://www.theguardian.com/film/blog/2015/jun/10/my-beautiful-broken-brain-review-documentary-moving-study-of-life-after-stroke

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