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Archive for June, 2016

Christy Campbell: 2016 Recipient of the Courage To Come Back Award

Christy served on the SRABC Board of Directors so we take special pleasure in sharing this story of life after stroke with you.

Christy Campbell

The average person draws upon a vocabulary of 10,000 to 20,000 words, but Christy Campbell was left with only one after a massive stroke when she was just 31 years old.

That word was “yes,” appropriate for what Campbell has been able to accomplish in the 10 years since. Her work to improve resources for stroke survivors left with aphasia is being recognized with a 2016 Courage To Come Back Award in the physical rehabilitation category.

Campbell, an aspiring biologist who had completed a Master’s degree and was working for Environment Canada, was left paralyzed on her right side, in chronic pain and unable to communicate after she suffered a stroke after a chiropractic treatment.

Through intensive therapy and rehabilitation, Campbell was able to learn how to walk and talk again, and ironically she’s become a spokeswoman for aphasia, a condition that “nobody really knows about,” she said.

“The problem with aphasia is that if you have it, you can’t be a spokesperson for it because you can’t speak, and if you can speak, they say, ‘What’s your problem?’” said Campbell.

The effects of her stroke aren’t readily noticeable, although she has limited use of her right hand and has had to learn how to write left-handed. She no longer is able to golf, hike, canoe or dance, and she struggles at times with words and relies on her husband and caregiver, Sean Standing, to help.

“When you lose your voice, you tend to retreat,” said Standing. “It’s unbelievably isolating. One’s ability to socialize disappears. People tend to recoil on themselves.”

But that wasn’t Campbell’s way.

She is unable to return to work, but three years ago she had a son, despite unfounded worries that she wouldn’t be able to read to him.

She and Standing attended intensive workshops and camps, which inspired them in 2010 to co-found the Sea to Sky Aphasia Camp in Squamish with a UBC professor. Over six years, 160 speech pathologists and survivors have attended the annual weeklong event.

Campbell has also volunteered on a number of advisory committees, is a peer mentor for stroke survivors and has successfully advocated to increase by 56 per cent the number of spots for students in UBC’s speech language pathology program.

“There is simply no better ambassador for living well with aphasia than Christy,” said speech pathologist Dr. Thomas Sather of the University of Wisconsin in his nomination letter.

Standing, who advocates for resources for caregivers, said Campbell’s recovery from her stroke has been an unexpectedly “wonderful” experience.

“Some of our dearest friends we met as a result of this horrible tragedy,” he said. “We wouldn’t have wished this to happen to us, but we’re truly blessed that this happened to Christy in B.C.,” where there was a willingness to improve recovery models.

And said Campbell in an email sent after the interview because she was unable to remember the quote at the time: “‘Sometimes the bad things that happen in our lives put us directly on the path to the best things that will ever happen to us.’

“I truly believe it,” she said.

For information on the gala, go to couragetocomeback.ca.

Slazaruk@postmedia.com

Twitter.com/susanlazaruk

The original article appeared in The Vancouver Sun

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Polar Bears and Other Scares: Surviving an Acute Stroke—Memoirs of a Survivor

With a blood clot in my brain—right between my ears—I began New Year’s Day 2014 paralyzed and unable to speak. When my eyes rolled back in my head, I stopped breathing, and my heart rate began flatlining, the medical team working on me believed I was dead. A few moments later, when a miniature vacuum device had removed the clot and shots of clot-busting chemicals cleaned the artery, I could move and speak again. A modern miracle of endovascular treatment.

The nurse in my stroke rehabilitation clinic learned that I was one of the first journalists to write about stroke and had been a communications consultant for the Heart and Stroke Foundation. She suggested I write my own story. Polar Bears and Other Scares

I couldn’t. Whenever I started dealing with my health, I got writer’s block. Brain cells that controlled my “fight or flight” reactions had been fried. Every time I confronted the subject of stroke, I went into flight mode. So I sneaked up on the topic. I wrote my memoirs, stringing together anecdotes about the most interesting things I had done in writing and communications since beginning my freelance writing career. I hoped that when I got to the subject of stroke, I would be rolling. Words would just spill onto the computer screen. It worked—the stroke section was still very difficult to write, but I had enough momentum to start with my first Globe and Mail articles on stroke and keep going through rehabilitation.

Stroke became the last part of my memoirs. Putting an image from the MRI of my brain on the book cover had some appeal. My brainstem looks like a Rorschach inkblot. So why is the cover shot one of me crouching behind a blindfolded polar bear with darts hanging out of his shoulder hump? How did acute stroke get demoted to one of the “other scares” in Polar Bears and Other Scares: Adventures of a freelance writer?

People producing the book thought bears were more exciting and appealing than brain attacks. So I guess the excuse is that it is a marketing ploy. Get people’s attention any way you can.

The first four sections of the book are supposed to be exciting and amusing. Read them for fun—or for fantasy if you dream of adventure. You are unlikely to get a chance to do the things I describe: being provincial Director of Emergency Information in exercises preparing for terrorist attacks and nuclear accidents; writing more than 500 feature stories  for a national newspaper; being a skiing writer paid to seek offbeat adventures; babysitting authors from England during northern misadventures; writing speeches that actually saved the orators’ asses; roaming the Hudson Bay Lowlands on communications consulting projects; being Director of Project Development in the construction of the world’s largest solar farm; hand-feeding huge snapping turtles and, of course, tagging polar bears.

The fifth section of the book is about things that might well happen to you. Called “Cardiovascular Adventures,” it deals with heart and brain problems, the kinds of things that are highly likely to cause your ultimate demise. There’s no preaching; I happened to recover from catastrophic cardiovascular events more by accident, good luck, superb treatment and being in the right place than by my own efforts.

But there is potential learning—about the miracles that medical research has produced since I first began writing about stroke. If my cardiovascular problems had occurred in the 1970s rather than in the 21st century, I would be dead or severely disabled. Endovascular therapy in particular has made it possible for me to resume normal life after a medical event that would have meant certain death only a few years ago. Someday, your life might depend on advanced cardiovascular medicine.

Polar Bears and Other Scares: Adventures of a freelance writer is available at FriesenPress.com, Amazon, Barnes & Noble and other outlets as an e-book and in paper editions. Kindle offers a preview of the first 26 pages.

Ron Truman

rontruman@cogeco.ca

613 962 2766

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Connecting Online – A Look Inside a Modern Aphasia Group

http://tactustherapy.com/connecting-online-aphasia-group/

Tactus Therapy blogger Holly Fadie visits Emerson College to find out more about a life-participation model of aphasia group therapy that is connecting stroke survivors with family and friends through technology. Connecting Online –

For adults with aphasia, the combination of communication challenges mixed with inexperience with technology may result in missed opportunities to connect with family and friends online. At Emerson College, graduate student clinicians are tackling this challenge. By embracing online communication as an opportunity to improve the lives of clients with aphasia, clinicians are helping stroke survivors to re-join the two-thirds of adults who use online social networks.

 

Last year, the Robbins Speech, Language and Hearing Center pioneered a new kind of language therapy group for patients with aphasia called Connecting Online. It is the brainchild of speech-language pathologist Jena Castro-Casbon, MS, CCC-SLP. Ms. Castro-Casbon says the group was born out of a need to “bridge the gap between what people with aphasia wanted to do online and what they could do.”

Not only do clients with aphasia want to connect online – they need to. She argues:

“Many of the clients I work with live alone and have communication impairments, and often physical disabilities, that limit their ability to get together with family and friends. The ability to engage with friends and family via the Internet helps fight social isolation and can lead to the deepening or, at a minimum, the continuity of relationships that might otherwise not be possible.”

In fact, research suggests that social networks, offering social support and social connectedness, are associated with higher levels of “health, happiness, and longevity.”

Learning Technology in an Aphasia Group

The Connecting Online group consists of five people with aphasia and two speech therapy graduate students. They meet weekly inside a computer lab on the Emerson College campus in the heart of downtown Boston. The group has all the markings of a traditional aphasia group: diverse members, communication goals, homework assignments, speech therapists, and a sense of comradery.

But with the addition of a computer, tablet, or smartphone and an Internet connection, this group offers members something unique: the chance to transcend the group and reach family and friends in real time. The results can be instantly satisfying and bring a great sense of accomplishment.

One member, Steve, wastes no time proudly scrolling through the array of text messages labeled “Family” on his iPhone when given the opportunity to show what he’s been working on. You can see him in the photo above as he displays his iPhone with text messages.

 

Another member, Mike, tries to capture the perfect selfie for his Facebook message – a tool that has allowed him to reconnect with high school friends following a traumatic brain injury. He’s even used his tablet’s camera to digitize printed photographs to upload and share old memories with friends.

Mike shares a selfie on Facebook

Mike shares a selfie on Facebook

Ms. Castro-Casbon says the group dynamic has helped members inspire one another to try new things. “While some members are very interested in learning how to use Facebook,” for example, “others were skeptical.” That is until they saw the success others were having. “They became more interested in using Facebook after watching their peers reconnect with old friends and distant family members.”

Building Confidence and Communication

One group member describes his gratitude for the group:

“I am really glad this place is there because I didn’t know how to do Facebook – ever. I’m getting there. Finally I saw people, family, friends – and I talk to them. It’s wonderful. It’s really wonderful for me anyway. I wrote things – funny things. I’m getting there. I’m really fascinated with the whole thing. It’s new for me.

Another member, Sam, says that he likes being in a group because, “we get to discuss the things we did; and sometimes when I make a mistake, someone is there to help me.”

Sam and Jeff

Sam and Jeff connect online and in person

Not only does the combination of an in-person group and online environment allow improved connectedness, but it can also provide an outlet for expression and confidence building that many people with aphasia might otherwise struggle with.

Enhancing Communication with Technology

Larry Marshall, another member of the Connecting Online group, touts the successes he’s had conveying messages through email, text, and the help of his iPad. He says, “I’m happy because I don’t know how to do these things. All of my friends use it and I don’t use it. And I want to.”

An information technology professional before his stroke, Marshall feels comfortable with technology and says he “loves” using his iPad to help with communication so that “people understand me.” Recalling a time when he struggled with expressing himself over the phone, or when he couldn’t communicate clearly with a store clerk, Mr. Marshall says, “Everyday [with aphasia] is different. With this [iPad], people are more patient with me.”Larry uses his iPad

Larry uses his iPad to communicate better

Because word retrieval and spelling are challenging for Marshall, he keeps a notebook to record key words he can copy onto his iPad later on. On this particular day, he copies “Halloween” onto the iPad keyboard and scrolls diligently through the emoji options in search of the ideal symbol to include in his message. Marshall is the emoji aficionado of the group, setting an example for others of how to use the colorful symbols to expand a message with emotion and context they might not otherwise be able to convey with limited words.

Smiley Pumpkin Heart

Targeting Language Goals

Though Ms. Castro-Casbon cautions that the group could look like a computer skills course initially, the digital domain offers many practical therapeutic applications for improving language. First, clients must generate language – retrieving the words and assembling the phrases needed to send a message or utilize a search engine. All this typing is a prime opportunity to practice spelling as well.

Simply using a social network site or app requires that clients must navigate menus, a skill that requires sustained attention and the ability to follow multi-step directions. For many group members, this also means practicing asking for help along the way. Fortunately, this is supportive environment with two graduate students available to support each member as needed with graphic organizers and aphasia-friendly instructions.

The online medium provides not only opportunities for language enhancement, but also tools for empowering members with information. And from that information comes greater independence.

Flexible, Functional, and Fun

The group took an unexpected departure from traditional communication goals when member Jeff Carlson took an interest in Pinterest. Pinterest is a virtual bulletin board for sharing and organizing ideas. The website helped Mr. Carlson, a former plumber, plan and execute several home improvement projects by allowing him to organize visual supports and directions. He’s been able to print out what he needs and bring it to Home Depot. He then uses the messaging feature within Pinterest to share projects with friends and group members easily.

Mr. Carlson says his next online challenge is improving his ability to send email and text messages, noting, “Texting and emailing are very similar. You have to write a sentence. But with text messages it doesn’t have to be a complete sentence, but you have to learn to text letters like ‘R’ and ‘U.’”Jena helps Larry

Jena helps Larry with his iPad

These sorts of seemingly small challenges are what keep the group moving forward and evolving. With each new skill the members master, there always seems to be a new goal to tackle. Ms. Castro-Casbon said she never expected to be teaching those now omnipresent emojis, but they have helped members “improve the quality of their messages” and gain more independence.

From simple tasks, such as copying and pasting to uploading a photo, it is clear that little things do add up to big impacts on communication. The Connecting Online group members boast jubilantly about their achievements, their connections with family and friends, and their newfound skills.

Advice for Starting a Connecting Online Aphasia Group

Ms. Castro-Casbon offers this advice to other speech-language pathologists considering starting such a program:

“Do it! Our clients have expressed a high level of satisfaction from participating in the group both during and in-between sessions. Many clients feel like they are becoming more independent online by practicing writing, following directions to complete tasks (like sharing links) and keeping up with friendships and relationships that have suffered due to their aphasia and/or physical limitations.”

She offers these tips to get started:

  1. Be open-minded with what you work on. Initially I thought of the group as working on email and Facebook only. We now have group members working on coming up with keywords for search engines (a difficult task with anomia!), composing text messages, following directions to copy and paste words, and even adding attachments to emails.
  2. Follow the clients’ needs/interests. It seems to work much better to have clients working on individual projects and skills that they are personally motivated to work on.
  3. Talk to students ahead of time about expectations for what clients should be able to do on their own and what types of supports are needed, given their level and type of aphasia.

Technology can be a lifeline for those living with aphasia. As professionals, we must help them learn (or re-learn) to use it so they can stay connected long after our sessions end.

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Poetry Writing – My Way to Recovery

Maple Ridge father of seven Barry Plamondon wrote a book of poems after he suffered his second major stroke in 2012.

Barry Plamondon needed an outlet after suffering his second stroke in five years.Barry Plamondon

The 57-year-old Maple Ridge resident found what he was searching for, through poetry.

In 2012, the father of seven suffered the second of two major strokes. This stroke, like the one he suffered in 2007, happened at his home. And it nearly killed him.

It was during his recovery that Plamondon wrote a collection of poems that became This ‘n’ That, Bric a Brac, a self-published book can be purchased online at http://www.friesenpress.com/bookstore, or amazon.com.

The poems, he says, are about things that matter to him (family), and things that interest him, (gardening, cowboy life, and nature). “As well it is about my search for answers in my own life,” Plamondon added. “I feel as if I had been writing this book in one way or another for most of my adult life.”

Plamondon wrote the poems to not only help his own recovery, but “to show others in similar situations that it is possible, there is hope.” While the first stroke he suffered left him with a limp, the second one was life-altering. It was June 2012 and Plamondon was upstairs in his home.

“The first time [in 2007] I managed to crawl over to the phone and they had to kick the door down because I had my little girls downstairs, and the second time I just kind of collapsed…,” Plamondon said.

Plamondon suffered a hemorrhagic stroke, caused by uncontrolled bleeding in the brain.

According to the Heart and Stroke Foundation, this bleeding interrupts the normal blood flow in the brain and kills brain cells either by flooding at the leakage site or by shortage of blood supply beyond the leakage.

After this stroke, Plamondon spent four months in Ridge Meadows, Royal Columbian, and Eagle Ridge hospitals, followed by eight months at CONNECT, a brain injury rehabilitation centre in Langley.

“I was lucky in the vocal department,” Plamondon said, about the after-effects of his second stroke, which all but paralyzed his left arm. “My face on the left may have sagged a bit and I might drool out of the corner of my mouth, but it was strictly left side – no vocal. I’m able to walk, just not as far and not as long.”

It was in the months that followed the 2012 stroke when Plamondon gave his brain a workout by writing prose, from one poem per day to as many as 11, depending on how he felt.

“I’d been home for three months and I just said, ‘okay, I figure I need to write some poems,’” Plamondon related. “Some were garbage and some were, I thought, acceptable. So when I had a bit pile of acceptable ones I looked into publishing.”

He won the The Maple Ridge Festival of Light Society’s adult (16-plus) poetry contest in February and just recently published his book of poetry.

Writing these poems have helped Plamondon on every level: physically, mentally, and spiritually.

“It was sort of a soul-searching thing, too,” he said. “I found out a lot about myself. I developed more of a belief system.”

Once he started writing the poems that would become This ‘n’ That, Bric a Brac, “they came out like a flood,” Plamondon said.

The words are in large print because Plamondon was nearly blind in his left eye for a few months, after his second stroke.

“I did have trouble reading and I wouldn’t have been able to write poems then,” Plamondon said.

Plamondon dedicated the book to his wife of 23 years, Sandi, and his children Danielle, Jarred, Dominique, Jakob, Desirée, Juliette, and Darian.

Plamondon continues to write poetry today. “Even if I’m having a bad day, I force myself to produce at least one [poem],” Plamondon said. Is there another book in the works? “That is up in the air,” Plamondon said. “I want to, badly, because I have a backlog of poems.”

Original article by  Troy Landreville – Maple Ridge-Pitt Meadows Times

 

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