I'm a journalist writing a book about successfully surviving stroke. It's for stroke survivors, their caregivers, families, friends and communities. I don't have a publication date yet but hope to be in print within the year.
Before that, she was using a pseudonym on WordPress.com to blog about her experiences, share details about her life, and practice her writing. In 2007, shortly after New Year’s Day, Lee wrote the following in a blog post:
something in my brain burped. most of what i want to do is just out of my grasp. i feel like i know how to do them, but then when i go to do them, i just…CAN’T. day by day, i’m regaining my abilities, so i hope this is just temporary.
Lee’s commenters urged her to see a doctor, and the next day, she responded to them from a hospital bed: “I had a stroke! Will be better.”
The Wall Street Journal recently published an article http://on.wsj.com/1LmwVb3 on a new area of research — the surprising upside of surviving a tragedy — like stroke. In 2013 a young psychologist at Harvard surveyed 50 individuals who’d been paralyzed in accidents decades earlier, 50 lottery winners who took home about $6 million a decade earlier, and the same number of people who had experienced neither. The three groups reported about the same level of happiness, though the accident survivors were slightly happier than the others.
That probably amazes most people, but after reading posts on stroke Facebook groups, listening at support groups and interviewing people who’ve recovered from strokes, I’m not surprised. So many individuals have said how grateful they are and how happy they are with their “new lives.” They refer to the date of their stroke as their “re-birth” and throw parties. There is life after stroke, and it can be happy.
This is all part of a new way of thinking about and researching the aftermath of trauma. Working in the early 1980s, Richard Tedeschi and Lawrence Calhoun at the University of North Carolina, first coined the term “post-traumatic growth” to describe the positive changes that many survivors were reporting. I’ve seen a lot of evidence of this and would love to hear more about it. If you have comments or stories, please let me know here.
Over 30% of all strokes occur in people under 65. That’s not well known, even among stroke survivors and their families, much less the general public. Thirty percent is significant. That number is big enough to warrant services designed specifically for the under-65 demographic. And it means that financial, social and medical solutions must be found for this demographic, whose needs are different from their elders.
Thank God for Amy Edmunds, who had a stroke at 45, and organized YoungStroke to help enable her peers to survive and thrive. She has been recognized both nationally and internationally for her work with YoungStroke and her efforts to increase research, raise awareness and political lobbying. YoungStroke has a website and Facebook page that have become a welcome gathering place for young stroke survivors, who are so often isolated.
YoungStroke’s Fall Retreat is the second in a series of three programs given in 2015 for young stroke survivors. It’s an opportunity to listen to the newest in research from scientists and rehabilitation medicine experts. It offers a chance for those recovering from stroke to meet others in the community and exchange stories and learn from each other.
If you are, or someone you love is, a young stroke survivor, I think there are great resources to be found at YoungStroke.
YoungStroke’s Fall Retreat is almost here! Held at Sea Trail Resort, located in Sunset Beach, North Carolina, accommodations include breakfast and lunch and will begin October 16. Registration is now open at www.youngstroke.org/events.
Take full advantage of the exceptional beauty of this eastern shore community with special weekend rates and accommodations. You have until Wednesday, September 30 to receive discounted rates.
Here are some of the speakers:
Bob Mandell, young stroke survivor and founder of The Stroke Research Foundation. The Foundation’s mission is to improve post-stroke lifestyles by promoting a range of 21st Century therapeutic modalities. They also address the underfunding of rehabilitation research, develop media campaigns seeking to increase stroke awareness, and support its Stroke Recovery Fund which provides stroke rehabilitation therapy for people without the means to pay themselves. Learn more at http://www.StrokeRF.org.
Dr. Souvik Sen of the University of SouthCarolina Medical School will share outcomes of focus groups from the June conference. He will further explore potential gaps in knowledge. Attendees will be invited to preview his new assessment tool. The audience will be invited to participate in a focus group.
Lee Pearson of the South Carolina Institute for Medicine and Public Health will serve YoungStroke as the keynote of the Fall Retreat. He will address the current challenges of educating legislators about young stroke
Registration is open now!
Learn about other upcoming YoungStroke events and visit website at YoungStroke.
THIS A POST FROM ARC FACEBOOK BY CAROL DOW-RICHARDS. AND IT’S REALLY EXCITING NEWS. I DIDN”T EVEN EDIT IT…
Topic: FREE Accessible News for People with Aphasia
On your computer – using the web.
On Apple Products.
On Androids too!
Everyone should have access to news! And this makes a great resource for speech therapists or aphasia groups too – as it has questions for comprehension (or discussion). I can’t wait to use it with my Aphasia Lunch Bunch Group in Las Vegas!
How do you get your news? Many people with aphasia find it’s difficult to enjoy the daily news because television news anchors talk too quickly and print news articles are too long.
Lingraphica just announced its specialized news source called TalkPath News, made for adults with aphasia. With multiple categories of news, you can select what you want to read and follow along as articles are read aloud and highlighted.
You can test your comprehension by answering the questions at the end of every article – making it a great way to work on your skills and work on continued recovery. This is a GREAT app!
You can use TalkPath News for free on the web at http://www.talkpathnews.com
or by downloading the free app from the App Store or Google Play.
TalkPath News is Lingraphica’s first Android app.
Here are the links. Apple. Android. Web.
Check this out!
TalkPath News for Apple products: https://itunes.apple.com/…/lingraphica-talkpa…/id1019273875…
TalkPath News for Android products: https://play.google.com/store/apps/details…
TalkPath News on the Web: http://www.talkpathnews.com
We love this product!
Try it. Then share your thoughts with other ARC members.
Together – we can learn and share.
And now – you can CONNECT with the news.
Let others know about this GREAT product!
THANK YOU LINGRAPHICA TEAM.
I heard about a new service offered by Uber designed for the disabled and elderly . It’s a great step in the right direction. Right now it’s only in L.A. but hopefully it will spread! — Maureen
“Uber is launching a special service for senior and disabled passengers in Los Angeles, the ride-hailing company said on Tuesday on its blog.
“The new service, dubbed UberAssist, will “provide additional assistance to members of the senior and disability communities,” the company writes. Drivers for the special service are trained by the Open Doors Organization, a non-profit that works with companies to help them better cater to people with disabilities, and can accommodate for folding wheelchairs, walkers, and scooters.
“This isn’t Uber first attempt to cater to passengers with disabilities. In May, the company said it was testing a new feature in Chicago, Los Angeles, San Francisco, and Washington, D.C. for deaf riders. The recent lawsuits against Uber and rival Lyft for discriminating against disabled passengers have likely put pressure on both companies, though they’ve both denied any of the lawsuits’ claims.
“Nevertheless, Uber seems to be making an effort in good faith — UberAssist with cost the same as a UberX, the company’s cheapest ride service.”
I met Leigh Kost online and think she is full of great advice, humor and plain good sense. She does an online advice column for strokesmart.org. Her address is below in bold. Check it out. Send her questions. Send me questions and follow the blog. We’re really getting this thing going! — Maureen
Ask Leigh: Staying Positive After a Stroke
Posted by Leigh Kost Jul 17 2015
Dear Leigh: I had a massive stroke. Everyone tells me I need to be positive. I’m devastated, and really can’t see how I’m supposed to be positive. -James
Leigh Kost: No one would deny that you’ve been through something tragic. I am now 6 years post-stroke. I spent most of the first 2 years asking, “Why me?” People would also tell me I needed to be positive, but I resisted strongly. I want to share something with you that I hope will help you keep a positive mind and attitude. My progress improved exponentially when I stopped asking the why me question, and starting asking myself how can I conquer this. I still have a long road ahead of me, but after 6 years of having my stroke, I have far exceeded what the doctors predicted. You wouldn’t recognize the person I am today from the person I was back then. The turn-around round really started when I changed my perspective of my situation.
Dear Leigh: I have children, and since I can’t play with them the way I want, I’m afraid this will affect how they are as adults. -Lisa
LK: I guarantee this will affect them as adults, but not in the way you are thinking. My children were young when I had my stroke, so I’ve spent a lot of time thinking about this topic. I’ve come to realize that there are many things my children will learn from this that will make them stronger and more compassionate adults. They are my ultimate inspiration. Everything becomes worth it when I hear “Mom, we are proud of you.” Given that they are teenagers, I do not hear that often. I am confident that will change as they grow older.
Dear Leigh: I would like to attend a support group, but I don’t know how to find one. -Susan
LK: National Stroke Association has a website with several, helpful resources. There is a Find a Support Group link which will list support groups in your area. There is also information regarding how to start your own.
Leigh Kost is a stroke survivor who wants to help people within the stroke community cope with the emotional and lifestyle changes that can occur following a stroke. She gives advice based on her own personal experience. She is not a healthcare professional and cannot give medical advice. You can submit questions for Leigh at AskASurvivor@strokesmart.org.
The material provided in this column is designed for entertainment purposes only. The views expressed reflect those of the author and do not reflect the opinion of National Stroke Association. You should not rely on any information on this page to replace consultations with qualified healthcare professionals to meet your individual medical needs.
People often ask me why I’m writing about stroke. They assume I’ve had a stroke, or that someone close to me had a stroke. Actually a friend of mine, a doctor, told me that when her mom had a stroke she knew what to do for her in terms of medical help. But she and her family had no idea how to help her go on with her life after the stroke. So, they did what most people do. They googled. They went to the bookstore. But they found very little a family could use. She thought it would be a good idea for me to write a book for patients, families and caregivers.
I knew from my work as a reporter and writer that most people are helped by stories about other people that they could relate to. So right away I knew I had to interview lots of people and get lots of stories. I started to listen to stories and I was amazed at how many different kinds of individuals have strokes. I was fascinated with how they recovered and went on to live lives — not the same lives as before — but good lives, happy lives.
I also learned that stroke neurology has advanced, particularly in the last twenty years. I couldn’t find those improvements explained in one place so that people could read in layman’s terms about the new life-saving advances in the field. There’s a lot of new ideas, from the clot busters that have been proven safe and affective to neuroplasticity which means the brain can learn to compensate for lost abilities. It’s now known that patients can continue to improve for years after stroke. It’s these ideas that I want to write about, and how they affect every day peoples’ lives so that anyone who has suffered a stroke, or their loved ones, can learn more about how to successfully survive stroke.
“…once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in. That’s what this storm’s all about.” ― Haruki Murakami, Kafka on the Shore
This quote from the Japanese novelist Haruki Murakami has everything to do with surviving life’s trials and certainly strokes. I think about this a lot as I interview successful stroke survivors.
I found these online and thought they were good basic tips for communicating with people with aphasia. I’ve been interviewing aphasic people, their caregivers and therapists and reading a lot of research. One comment I hear often is that we tend to talk down to people with aphasia or forget to include them in a group discussion.
Aphasia is a big subject in my book so I’d appreciate any comments or direction you might have for me in the comments. Thanks — Maureen
Make sure you have the person’s attention before communicating.
During conversation, minimize or eliminate background noise (such as television, radio, and other people) as much as possible.
Keep communication simple but at an adult level. Simplify your own sentence structure and reduce your own rate of speech. You don’t need to speak louder than normal but do emphasize key words. Don’t talk down to the person with aphasia.
Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
Give the person time to talk and let them have a reasonable amount of time to respond.
Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.
Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.
Encourage them to be as independent as possible. Avoid being overprotective.
Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible.
Keep them informed of events but avoid burdening them with day to day details.
Hi, I’m a journalist writing a book on surviving stroke. I’ve been researching and writing for over a year and have a way to go, as I have to make my living while working on the book. Also titled Successfully Surviving Stroke, the book (and the blog) are written for people who’ve had strokes, their families, caregivers, friends and communities. Though neither are intended for doctors, nurses or therapists they both owe a great deal to the professionals’ collective expertise and wisdom.
The blog is a way to keep in touch with all the people I’ve interviewed and others who are interested in my progress and what I’m learning about stroke, especially what makes for successful survival. I intend to write regular entries and hope you check back often to read, make comments and ask questions. Welcome and thanks — Maureen