Category: Advice For Stroke Survivors

Surviving a Stroke at 33 (and Blogging About It)

Surviving a Stroke at 33 (and Blogging About It)

WordPress.com News

Christine Hyung-Oak Lee suffered a stroke when she was 33, and she has written about her experience in an inspiring personal essay for BuzzFeed.

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.”

I spoke with Lee about her experience, and…

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New Research Says Tragedy Can Bring Positive Change And Happiness

HAPPY STROKE SENIORS

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.

Maureen

UBER Will Offer a New Program, To Assist The Disabled

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

 

the-first-new-uberwav-ride-in-toronto-from-jan-7-2015

 

“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.”

Story appeared in Fortune.com

A Great Advice Column You Should Know About

 

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.

Why Write a Book and Blog About Stroke?

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.

Some Tips For Talking With People With Aphasia

Senior Couple Going Over Bills --- Image by © Ocean/Corbis
Image by  Ocean/Corbis ©

 

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.

 

(Source: National Aphasia Association, http://www.aphasia.org).