I live a life of peacefulness. I'm not rich and don't want to be. I am a Goodwill addict. And I've never accepted the stroke fully, but I'm close, getting to recognize that I am competing with myself--one more step to climb, yet another minute on the bike, an additional hour standing.
I have solitude now, but I'm not lonely. When it's quiet in my apartment, I am thinking all the time--of this blog, another book to read, another book to write. And the ten things I learned about living as a stroke survivor. Here they are:
1. I find people staring at me, like an oddity of sorts among the "normals." I used to return their stare, angry and maniacal, but now, I like myself enough to not care.
2. I'm worthwhile, making a contribution, albeit small, to society at large, by giving my knowledge about strokes to anybody who affords me the opportunity to speak. There is always a stroke group who loves to hear the stories behind a stroke survivorship.
NOTE: This week YouTube is the same as last week. My code error in YouTube video and I lost 4 days last week. Please have a look at YouTube "Face-blindness" -- now it is done correctly. The other sections - Comics, Eclectic, Articles are new this week. SSTattler.
Dr. Sacks talks about people (including himself) who have neurological difficulty recognizing faces, and how they adapt and compensate. From his new book, THE MIND'S EYE.
In The Mind’s Eye, Oliver Sacks tells the stories of people who are able to navigate the world and communicate with others despite losing what many of us consider indispensable senses and abilities: the power of speech, the capacity to recognize faces, the sense of three-dimensional space, the ability to read, the sense of sight. For all of these people, the challenge is to adapt to a radically new way of being in the world.
Man Who Mistook his Wife for a Hat
Click above to get at Amazon
Here Dr. Sacks recounts the case histories of patients lost in the bizarre, apparently inescapable world of neurological disorders: people afflicted with fantastic perceptual and intellectual aberrations; patients who have lost their memories and with them the greater part of their pasts; who are no longer able to recognize people and common objects; who are stricken with violent tics and grimaces or who shout involuntary obscenities; whose limbs have become alien; who have been dismissed as retarded yet are gifted with uncanny artistic or mathematical talents.
If inconceivably strange, these brilliant tales remain, in Dr. Sacks’s splendid and sympathetic telling, deeply human. They are studies of life struggling against incredible adversity, and they enable us to enter the world of the neurologically impaired, to imagine with our hearts what it must be to live and feel as they do.
Dr. Sacks on Hat:
“Short narratives, essays, parables about patients with a great range of neurological and neuropsychiatric conditions, written in a lighter, more informal style than I had ever used before. To my intense surprise (my publisher’s too!) this book hit some nerve in the reading public, and became an instant best-seller.”
Praise for "The Man Who Mistook His Wife for a Hat":
“A provocative introduction to the marvels of the human mind….”
– Clarence E. Olsen, St. Louis Post Dispatch
“Dr. Sacks’s best book….One sees a wise, compassionate and very literate mind at work in these 20 stories, nearly all remarkable, and many the kind that restore one’s faith in humanity.”
– Noel Perrin , Chicago Sun-Times
“Dr. Sack’s most absorbing book….His tales are so compelling that many of them serve as eerie metaphors not only for the condition of modern medicine but of modern man.”
– New York Magazine
Prosopagnosia
Short clip of a woman with prosopagnosia -- the inability to recognize faces.
Faceblindness - Prosopagnosia
The Hour's Hilary Doyle examines the condition known has Faceblindness, or Prosopagnosia.
* For Better and For Worse" is a serious topic of stroke but with a very nice cartoons. It is all about Grandpa Jim had a stroke and 88 further cartoon "strips" that happened to Grandpa Jim. (See as well the author Lynn Johnston).
** I tried to get low or free price at the people http://www.UniversalUclick.com/ for the images for the cartoons. It was too high for Stroke Survivors Tattler i.e. we are not a regular newspaper and our budget is very low. Fortunately, you will have to do only 1-click more to see the cartoon image, it is legit and it is free using GoComics.com and Dilbert.com.
*** Changed from "Pickles" to "Betty" -- "Betty" is a excellent cartoon and Gary Delainey & Gerry Rasmussen are authors/artists/cartoon-strips and they live in Edmonton.
Recently I was asked by a funeral director to play at a grave side service for a homeless man. He had no family or friends, so the service was to be at a pauper's cemetery in the Alberta back country.
As I was not familiar with the backwoods, I got lost and, being a typical male, I didn't stop for directions. I finally arrived an hour late and saw the funeral guy had evidently gone and the hearse was nowhere in sight. There were only the diggers and crew left and they were eating lunch. I felt badly and apologized to the men for being late. I went to the side of the grave and looked down and the vault lid was already in place.
I didn't know what else to do, so I started to play. The workers put down their lunches and began to gather around. I played out my heart and soul for this man with no family and friends. I played like I've never played before for this homeless man. And as I played 'Amazing Grace,' the workers began to weep. They wept, I wept, we all wept together.
When I finished I packed up my bagpipes and started for my car. Though my head was hung low, my heart was full. As I opened the door to my car, I heard one of the workers say, "I ain't never seen nothin' like that before and I've been putting in septic tanks for twenty years."
A single guy decided life would be more fun if he had a pet.
So he went to the pet store and told the owner that he wanted to buy an unusual pet. After some discussion, he finally bought a talking centipede, (100-legged bug), which came in a little white box to use for his house.
He took the box back home, found a good spot for the box, and decided he would start off by taking his new pet to church with him. So he asked the centipede in the box, "Would you like to go to church with me today? We will have a good time."
But there was no answer from his new pet. This bothered him a bit, but he waited a few minutes and then asked again, "How about going to church with me and receive blessings?"
But again, there was no answer from his new friend and pet. So he waited a few minutes more, thinking about the situation.
The guy decided to invite the centipede one last time. This time he put his face up against the centipede's house and shouted, "Hey, in there! Would you like to go to church with me and learn about God?"
.....
you are going to love this ...
This time, a little voice came out of the box,
"I heard you the first time! I'm putting my shoes on!"
Introduction: I am a nine year stroke survivor on my long journey back to recovering as many abilities as possible and finding my new normal.
(Gary's site help to formulate SSTattler. Many thanks Gary!)
Help Make It Better
Just a quick note to let you know about ; - SOMETHING SPECIAL! You know stroke is all about awareness, education and prevention. (or at least that has been mostly the case in the past) While awareness, education and prevention are of utmost importance (even for secondary stroke prevention) there is a need that has been largely ignored in the past.-Stroke Survivor Support! A few years ago (Nov 2007) I met a researcher from a university in Montreal at a stroke workshop in Charlottetown. Her name was Dr. Nancy Mayo and her focus was on finding ways to support stroke survivors to get the most out of life. She gave a presentation titled"Getting On With The Rest Of Your Life After Stroke". (45 minute video on the community based stroke support program)
Charlotte Comrie, Dr. Nancy Mayo and Gary Gray (2007)
In her presentation she talked about a research project that was about to be rolled out in a number of communities in Canada. As part of the project there was a booklet published also titled"Getting On With The Rest Of YourYour Life After Stroke". It talked about acceptance, attitude, setting goals, getting involved and generally building aNEWlife after stroke. Can You Help? It is interesting and sad to see in the above video just how technology challenged our health system is.Unfortunately when it comes to long term support for stroke survivors it is just as challenged. We must be grateful for The Canadian Stroke Network and their support to Dr. Mayo in conducting her research which shows the need for project based stroke support in communities throughout the country. It is a painfully slow process to engage minds and resources within communities, to adjust attitudes and build the kind of support network needed to give a reasonable level of community project based meaningful activity to stroke survivors everywhere...editors note (Gary) Last year a stroke survivor posted a comment on this blog asking why everything was geared to awareness and prevention and asked why the focus was not on support for survivors. That got me to thinking and I just couldn't get that question out of my mind. So, I created a Facebook page and a blog. and called them"My Life After Stroke" These sites were designed to support us as survivors by providing a place to meet other survivors and tell our stories, discuss questions that are important to us, share photos, pages, groups, videos, books and blogs taken and written by us and post research information about stroke recovery that may be helpful to us. So far there are 152 fans following the"My Life"page.THANK YOU EVERYONE! In late September 2011 "The Canadian Stroke Network" launched a new website designed to provide support for survivors and help us and our families rebuild our lives based on the original Dr. Nancy Mayo model of"Getting On With The Rest Of Your Life After Stroke" The Website iswww.lifeafterstroke.caand it can be a huge step forward to supporting us in our recoveries.. I encourage you as a stroke survivor, caregiver, family member or healthcare professional toPLEASE:FIRST: Go to the new site and take a look around.SECOND:Click on the contact link and tell the people at theCSNWwhat could be changed and/or added to improve the site to make it a place of support forUS. Gary Gray Stroke survivor since 2002
Goverment House Tours -- Ongoing Sundays and Holiday Mondays.
An opportunity for a guided tour of Goverment House; tours from 11:30 a.m. to 4:30 p.m. Built in 1913, this way the official residence for the first six lieutenant-governors of Alberta and is currently a Goverment of Alberta conference centre. Learn about Alberta's history, view original artifacts dating back to the early 1900's, plus see an art collection by Alberta artists. No reservations required and tours are free. 12845 - 102 Ave. Further info: 780-427-2281.
NOTE - SSTattler got a e-mail this week about Alberta Goverment lists Pradax™:
Hello – Some good news that I thought you might like to share with your members either on your blog or newsletter.
The Province of Alberta has recently listed Pradax, an oral blood thinner, onto the provincial formulary for the prevention of stroke and systemic embolism for Albertans living with a heart condition called atrial fibrillation or AF. Atrial fibrillation affects about 30,000 Albertans and if not managed properly, it can lead to severe and debilitating strokes.
Below, you’ll also find the news release issued by the Integration of Care in Atrial Fibrillation (ICAF) project announcing the provincial listing. ...
I look forward to hearing from you!
Alberta Government lists innovative drug therapy to reduce devastating strokes in Albertans
EDMONTON, May 1, 2012 /CNW/ - Your heart races or beats out of rhythm for no reason. It may not seem like a big deal - but you may be at risk of having a serious stroke.
Atrial Fibrillation (AFib) is a common heart rhythm disorder that causes the heart to beat irregularly. Stroke is one of the leading causes of death globally, with Atrial Fibrillation accounting for one in six strokes. In Alberta, 30,000 people have been diagnosed with this condition, but many more have gone unchecked.
Today, Alberta Health and Wellness added dabigatran etexilate, known as Pradax™, to the Drug Benefit List for the prevention of stroke and systemic embolism in patients with Atrial Fibrillation. This innovative drug therapy was approved for this specified use by Health Canada in October 2010. "For over 50 years there has only been one real option for effective blood thinning to prevent stroke in atrial fibrillation - warfarin, says Dr. Russell Quinn, a leading Atrial Fibrillation cardiologist at the Libin Cardiovascular Institute in Calgary. "After recent large clinical trials we are finally now seeing new agents being released, such as dabigatran, which may be more effective at reducing the risk of stroke and have significant advantages for some patients."
It is estimated that nearly half of all patients diagnosed with AFib are actually on blood thinners. "Although warfarin is effective, it requires very close monitoring to ensure it is working at optimal levels", said Dr. Ashfaq Shuaib, Director of the Stroke Program at the University of Alberta Hospital. "Through the innovation of Pradax, there are significant benefits to patient health and safety, especially in the prevention of stroke.
Pradax™ is the first new treatment that has been offered for Atrial Fibrillation-related stroke in decades and will fundamentally change the way patients with AFib are treated in the prevention of stroke. One out of every four people over the age of 40 will develop AFib. After the age of 55, the incidence of AFib doubles with each decade of life. After age 60, one-third of all strokes are caused by AF1.
Alberta is positioning itself as a important leader in the diagnosis and treatment of AFib. The Atrial Fibrillation Clinic in Calgary is Alberta's only clinic devoted to AFib and is a partner in an innovative new initiative called the Integration of Care in Atrial Fibrillation (ICAF) project. Through this project, the Foothills Primary Care Network (PCN) is demonstrating that a simple pulse check can identify patients with undiagnosed AFib and these patients can then be assessed for their risk of stroke. Nearly 20-30% of people who have AF don't have any symptoms, but have the same risk of complications as those who have been diagnosed. "It's essential that we identify patients who have Atrial Fibrillation and offer the best treatment to minimize the risk of stroke," says Dr. Richard Ward, a family physician involved with the ICAF Project.
English as a Second Language and Learning Disability Materials
When dealing with stroke and aphasia, we found that the English as a second language and learning disabilities resources were as good as or perhaps even better than some of the activities designed for people with aphasia. You can find learning disabilities resources geared to your particular interests. The English as second language materials are geared to interests and designed for adults. You may want to check out the adult literacy courses in your area. Some are geared to improve reading and writing skills and others are designed to improve your math skills.
This week, I am going to provide a few different websites:
English as a Second Language Websites
English Express On this website, you can read articles on your computer screen. You can also print articles. Would you like to listen and read along to articles? Press the listen buttons. Some articles have videos to watch too. If you want other resources, designed for teachers and tutors click on the menu button on the left for teaching resources and also the resource link button for more teaching resources.
Accidents At Work—this is about worker safety. It is easy to read and has some excellent advice if you are returning to work.
Curriculum Express for Parents Want to know what children need to know by grade level? This website, for parents who are English language learners, provides the Alberta curriculum for Kindergarten to Grade 3.
Lumosity – This is their ad: “At Lumos Labs, we believe in improving brains — and lives. That’s why we created the most effective online tool for cognitive enhancement. Drawing on the newest developments in neuroscience, Lumosity.com offers brain training exercises that work. Regardless of your age, Lumosity can make you smarter and more mentally fit. If you want a brighter brain, join Lumosity today.”
Posit Science -- This company works with Dr. Merzenich featured in Dr. Norman Doidge’s book about recovering brain function, The Brain That can Change Itself.
This link will take you to free domain for audio books. They can be transferred to your Sony Walkman2, or Apple iPod/iPad. They are available in MP3 format & iTunes formats.
Periodically most people with stroke likely wonder if stem cells can fix stroke. While there is lots of research hype about the possibilities for a “stem cell cure for stroke disability”, the research progress is seems slow in Western countries. Ads are popping up on the Internet about stem cell treatment. CBC radio just did a story about the International market for stem cell treatment and interviewed researcher Tim Caufield about the stem cell hype.
I have solitude now, but I'm not lonely. When it's quiet in my apartment, I am thinking all the time--of this blog, another book to read, another book to write. And the ten things I learned about living as a stroke survivor. Here they are:
