Hereditary hemorrhagic telangiectasia (HHT), also known as Osler–Weber–Rendu disease and Osler–Weber–Rendu syndrome, is an autosomal dominant genetic disorder that leads to abnormal blood vessel formation in the skin, mucous membranes, and often in organs such as the lungs, liver, and brain.
It may lead to nosebleeds, acute and chronic digestive tract bleeding, and various problems due to the involvement of other organs. Treatment focuses on reducing bleeding from blood vessel lesions, and sometimes surgery or other targeted interventions to remove arteriovenous malformations in organs. Chronic bleeding often requires iron supplements and sometimes blood transfusions. HHT is transmitted in an autosomal dominant fashion, and occurs in one in 5,000 people. SSTattler: and sometime a stroke e.g.Dan Zimmerman - Spokes Fighting Strokes.
The disease carries the names of Sir William Osler, Henri Jules Louis Marie Rendu, and Frederick Parkes Weber, who described it in the late 19th and early 20th centuries.
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic condition affecting up to 1 in 5000 Americans. It is treatable, but no cure is yet available. Watch this video to learn about HHT and what you can do to help. Visit http://www.hht.org for more information.
Low levels of iron in the blood are associated with an increased risk of dangerous blood clots that form in a vein, according to the results of a new study that included patients with an inherited blood vessel disease.
The findings suggest that treating iron deficiency may help prevent the condition known as deep vein thrombosis (DVT), according to the researchers at Imperial College London in England.
DVT typically occurs in the legs and can cause pain and swelling, and can be fatal if a blood clot dislodges and travels into the blood vessels of the lungs. Major surgery, immobility and cancer are recognized risk factors for blood clots, but there is no clear cause in many cases.
The new study included 609 patients with hereditary hemorrhagic telangiectasia (HHT), a genetic disease of the blood vessels that causes excessive bleeding from the nose and gut. Many HHT patients have low iron levels due to the loss of iron through bleeding.
Patients in the study with low iron levels were at increased risk for blood clots, but those who took iron supplements did not have a higher risk. This suggests that treating iron deficiency may help prevent DVT in the general population, the researchers said in a news release from the college.
"Our study shows that in people with HHT, low levels of iron in the blood is a potentially treatable risk factor for blood clots," lead author Dr. Claire Shovlin, from the National Heart and Lung Institute at Imperial College London and an honorary consultant at Imperial College Healthcare NHS Trust, said in the news release.
"There are small studies in the general population which would support these findings, but more studies are needed to confirm this. If the finding does apply to the general population, it would have important implications in almost every area of medicine," Shovlin added.
The study is published in the Dec. 14 issue of the journal Thorax.
About one billion people worldwide are believed to have iron deficiency anemia, according to the researchers.
The Stroke Association is building a digital self-management tool to support people in their recovery following a stroke.
My Stroke Guide has been designed by stroke survivors and carers, who have been involved in every step of its development. This ensures that their needs are at the heart of what it does.
Benefits for commissioners:
My Stroke Guide will help stroke survivors with self-management after a stroke, enabling them to monitor and improve their own health and well-being, as well as support others to do the same. Ultimately, we foresee that My Stroke Guide will reduce numbers of GP visits for stroke survivors, and contribute to the prevention of secondary strokes.
The personalised care that My Stroke Guide offers will mean users receive the right information, at the right time, in the right format for them. All of this information will be streamlined so that it is relevant to the user, their stroke, their local area and their support network.
My Stroke Guide can also act as a communication channel between user, carer, health care professional and community.
It will enable the capture of data and information which could give service providers and commissioning bodies valuable information about the care and services that they provide.
Benefits for stroke survivors:
We are creating My Stroke Guide to help make sure that stroke survivors are never alone in their recovery. My Stroke Guide will provide the practical tools to help them understand stroke and deal with its effects alongside peer support to combat isolation.
Most importantly, My Stroke Guide will be available online to users 24 hours a day.
My Stroke Guide’skey features:
Information tailored to the individual’s needs and local area
Peer-to-peer support, including an extensive video library and an online forum
Goal-setting tools and graphs which reflect the individual’s progress
Advice and signposting on the various issues people can face after stroke.
My Stroke Guide is currently in development and is undergoing on-going user testing to create the best possible product, which will be ready for launch in October 2014.
For more information on cost, availability, features and functionality or user-led design, or to register for updates, please email mystrokeguide@stroke.org.uk.
Stroke Association would like to thank Nominet Trust for their generous grant enabling us to develop the content for the My Stroke Guide self-management tool. Nominet Trust is a social investor which funds new and innovative ideas that have the potential to make a big impact.
Since I published my book, Stroke After Stroke: A Rower’s Pilgrimage, on Amazon in September, I have checked the sales numbers every day – to one site for the number of Kindle editions, and a second site for the number of printed copies. I made it easy to do so by bookmarking the sites on the pages I needed. It eventually dawned on me that perhaps checking hourly was a little overkill, so I asked my older sister if she had done the same after publishing 2 novels the same way. Beth replied that she had at first, but then had shifted to closely watching for new Amazon reviews.
So I started checking the reviews. The first three were, not surprisingly, five-star reviews – one each by Beth, an old (sorry, Roland!) friend /former co-worker, and a stroke survivor I frequently correspond with who has been a staunch cheerleader. Then a new 5-star review appeared – by a stroke survivor who is a total stranger. Now, I love my sister and friends, but a 5-star review from a stranger who called my book a “must read” for other survivors, was precious to me.
Peter Levine (whom I’ve mentioned before as a well-respected stroke recovery guru in the stroke survivor community,) is the author of Stronger After Stroke: Your Roadmap to Recovery, a virtual bible for stroke survivors, and the blogger at recoverfromstroke.blogspot.com. In addition, Levine teaches seminars for physical/occupational therapists and anyone else interested in his topics.
I was watching On the Waterfront the other day when Marlon Brando laments and, dare I say, whines, "You don't understand. I coulda had class. I coulda been a contender."
Coulda been a contender. Huh. Brando's lines were about boxing, but my brain works funny now. I started to think about marathons (I was a runner, but never ran in any races) and that started me thinking, why not? My brain was going into hyper speed with the thought of being in a marathon and I missed the rest of the movie.
Anyway, I had a new physical therapist who used to be a fitness trainer and wasn't used to my weird questions, so I asked: "I want to be a contender," borrowing that line from Brando, "so could you train me to run in a marathon?"
If I live long enough I may need to go to a nursing home. Nursing home residents who constantly complain or who are hostile find themselves medicated so they are less "anxious." I do not want the aggravation of seeing my favorite sweater on another resident or being told "we do not do it that way here." Treating my volunteers with kindness makes it more likely they will continue to help so I can stay in my home longer. I use 7 strategies to keep my volunteers from burning out (11 years and counting).
1. Prioritize. I cut down on the number of requests by identifying need versus want. I need someone to get on a ladder to change the batteries in my smoke detectors. These detectors are connected to my electrical system that maintains an ear-splitting screech when the battery dies.
2. Build trust. People do not need special rehab training to know when they are being taken advantage of. When I ask for help I let my volunteers know I always do everything I can before I contact them. For example, when I asked Peggy to tape a bag shut so I could return a coat, I explained I had affixed the return label but did not trust my good hand to tape the end of the bag securely. People feel good about helping when they know they are really needed. This strategy builds trust.
Sandra Bond Chapman, PhD, founder and leader of the Center for BrainHealth at UT Dallas relates new scientific evidence that you literally can think your brain smarter and healthier. She debunks long-standing beliefs about what smart is and shares proven strategies to expand your brain span to more closely match the ever-increasing human lifespan. Whether you are young or old, Dr. Chapman will inspire you to test the limits of your own brain potential.
Your brain is your greatest asset and natural resource. It is the most changeable part of your entire body. However, vastly more personal attention and effort are directed at improving physical health than at strengthening and regaining the highest level of brain performance. Dr. Chapman's research taps into the secret of making your brain smarter, harnessing the CEO of your brain performance - your frontal lobes. Her techniques show how to engage your frontal lobes, ignite your passion and learn to be strategic about the way you expend precious brain energy.
From teens to corporate executives to warriors to healthy agers, as well as individuals with brain disease or injury, Dr. Chapman and her team at the Center for BrainHealth have created strategies to increase creativity, energy and focus for people of all ages. In the junior high school classroom, these strategies take a new approach to education and have improved teen reasoning ability, showing 30% gains in critical thinking across socioeconomic status. Business leaders who have embraced these healthy brain habits report increased innovation and their employees demonstrate greater productivity and efficiency. Former military service personnel have used these brain-training techniques to bridge barriers to returning to civilian society, making home life and work life markedly better. One veteran described his transformational experience as "cognitive resurrection". Healthy agers and individuals debilitated by mild cognitive impairment, which is often the pre-cursor to Alzheimer's disease, showed increases in memory and other cognitive functions. Individuals with concussions or traumatic brain injury (TBI) exhibited brain repair and improved cognitive performance, even years after injury.
Dr. Chapman's dream is that you will act now to make an investment in your brain potential and build the cognitive reserves today to ensure that your best brain years are ahead of you, not behind you.
I don’t care who you are or where you came from, going downstairs and downhill is harder than going upstairs or uphill. This is because the muscles that control that motion are working very differently. The same muscles control the action of ascending and descending something, but descending is harder. Ever hear the expression “same shit, different day?” Well, here it’s “same muscles, different action.”
It’s kinda blurry but I really like that picture. It’s from here.
My mom says when her knee is hurting it hurts worse going downstairs. That’s because she using the quadriceps muscle eccentrically. When I climb stairs, it’s much harder and feels much less stable descending stairs. That’s because I’m using the quadriceps muscle eccentrically. If you don’t have a brain injury and tore your ACL or something, going downstairs will be harder. If you have perfectly uncompromised muscular and neurological systems, going downstairs and downhill will be harder. It might seem like it should be easier to walk or run downhill because of the momentum but you have to control the motion with eccentric contractions and they’re hard.
I always have loved to read in bed. I was the kid who hid under the covers with a flashlight reading long after “lights out.” In marriage, my tired husband complained: “How much longer are you going to have that light on?”
After the stroke I tried to read in bed but, with one hand, I couldn’t position the pillows comfortably behind my back; I got tired holding the book open single-handed, and frustrated trying to turn the pages. I gave up on physical books and started listening to audio books. After a year of buying audio books through Audible.com, I discovered I can borrow them free over the Internet from my local library. When I’m uncomfortable and can’t sleep, listening to an audio book is a good distraction. The major drawback is that many books I want to read aren’t available in audio format.
Recently, my husband and I went shopping for a new mattress. I was lolling on one when the salesman pushed a button that raised my head and knees. “Hey,” I thought. “This is comfortable. I could read an actual book in this position!”
We bought the adjustable frame in addition to a new mattress. The first night at home with it, my husband came into the bedroom and said, “It’s good to see you reading again.” It’s a piece of our old life rediscovered. He hasn’t even complained about the light being on when he goes to sleep.
Ever since I was an infant, I loved the sensitivity and tactile pleasures of things in my mouth. Fingers, toes, pencils and a few other things. This is one of the problems with my weight being so out of sorts. But since my stroke this love relationship has taken a turn, into a living need to get things done. My love affair has diminished over the last two years to become a semi pleasurable experience of living a life with one functioning arm and hand. My mouth has been my other hand.
This one is full of clothes
The UGLY SIDE...
It's the only way I've found to tie full trash bags tight. UGH! I use the cinch, drawstring bags. Holding it against my leg to tie it never ties it tight enough and getting them unfolded after they come out of the box is challenging at best because of the heat crimping that holds it together. Luckily due to recycling and composting it's only three bags a week.
The BAD SIDE...
Using my teeth to twist off stubborn caps like on toothpaste. Somehow, anything mechanically screwed on, that is supposed to be twisted off gets harder and harder to twist off. While I could position the tube at my waist, hold it tight with my belly, and twist it off that way, sometimes the tube just twists instead of the cap. Only five more tube in my pantry like this because the rest have flip tops.
Date | Start ✔︎ = DONE ----------------+------------------------------ Jun 29 Stage 1 | Anacortes, WA; 462 miles ✔︎
Jul 16 Stage 2 | Sandpoint, ID; 342 miles✔︎
Aug 03 Stage 3 | Cutbank, MT; 544 miles✔︎
Aug 17 Stage 4 | Dickinson, ND; 413 miles ✔︎
Aug 30 Stage 5 | Pierre, SD; 485 miles - ✔︎
Sep 13 Stage 6| Council Bluffs, IA; 559 miles ✔︎
Sep 28 Stage 7| St. Louis, MO; 570 miles ✔︎
Oct 12 Stage 8| Tishomingo, MS; 454 miles ✔︎
Oct 25 Stage 9| Mobile, AL; 570 miles ✔︎
Nov 08 Stage 10 |St. Augustine, FL; 533 miles✔︎
Nov 23 Stage 11| Ft. Lauderdale, FL; 189 miles ✔︎
Nov 29 End 12| Key West, FL; End of Ride ✔︎ Saturday the last day - Big Pine Key to Key West and then the job is done, finished, ended, concluded, complete, accomplished, achieved, fulfilled, discharged, executed,... Yay, Yay, Yay!!! Thanks specially for Dan and David for daily updates.
Sandy & I rode 22 miles & back to eat Turkey at Hideaway Café. Thank you John Gress, we took every one out for Tommy Turkey Day!! Beautiful day in Florida Key Marathon. Check out David click on journal my website www.Spokesfightingstrokes.org.
Attitude is 90% of life, think positive! "Fins Up" DanTrikeMan
Thursday Nov 27, 2014, 22 miles (35 km) - Total so far: 5,329 miles (8,576 km)
All ready to ride the final miles into Key West.
A day off here at Knights Key and it's Thanksgiving. So a Happy Turkey Day to everyone. Hope your day was as much fun as ours.
Our day started off with clear skies and mild temperatures. The wind blew all night but had settled down a little by sunrise. Dana fixed a nice breakfast for us but some of the group didn't want to eat too much in order to eat more at our luncheon later.
After a lot of discussion last night and again this morning, Catherine had decided to ride on into Key West today. She was going to try to connect with a group from a TV station although it was a long shot. She had found a place to stay tonight and Dana helped her pack a minimum of stuff for the ride. Just a few clothing items, personal items and a jacket. And with some snacks and a full water bladder, she left a bit before 10 AM.
He grasped me firmly, but gently, just above my elbow and guided me into a room, his room. Then he quietly shut the door and we were alone. He approached me soundlessly from behind, and spoke in a low, reassuring voice close to my ear, "Just relax.”
Without warning, he reached down and I felt his strong, calloused hands start at my ankles, gently probing and moving upward along my calves, slowly but steadily, My breath caught in my throat.
I knew I should be afraid, but somehow I didn't care. His touch was so experienced, so sure. When his hands moved up onto my thighs, I gave a slight shudder, and partly closed my eyes. My pulse was pounding.
I felt his knowing fingers caress my abdomen, my ribcage. And then, as he cupped my firm, full breasts in his hands, I inhaled sharply. Probing, searching, knowing what he wanted, he brought his hands to my shoulders, slid them down my tingling spine.
Although I knew nothing about this man, I felt oddly trusting and expectant. This is a man, I thought, a man used to taking charge. A man not used to taking 'No' for an answer. A man who would tell me what he wanted.
Forget stitches — there's a better way to close wounds. In this talk, TED Fellow Joe Landolina talks about his invention — a medical gel that can instantly stop traumatic bleeding without the need to apply pressure. (Contains medical images.)
Last week, November 22, 2014, we started the Weekly Columnists or short is WC (for writing, sorry but NOT the British noun - water closet!). Before that times all people were Eclectic or Eclectic Stuff and the ordered for time is relatively random. But some people would write every week and the topic is, very often, close to the ⌘ Headline. The first is Jo Murphey - Sunday Stroke Survival, then TED Talks, ..., and so on. Now we have six WC (including, but dicey, Laid-Back Administration):
In science, cognition is the set of all mental abilities and processes related to knowledge: attention, memory & working memory, judgement & evaluation, reasoning & "computation", problem solving & decision making, comprehension & production of language, etc. Cognition is by humans conscious and unconscious, concrete or abstract, as well as intuitive (like knowledge of a language) and conceptual (like a model of a language). Cognitive processes use existing knowledge and generate new knowledge.
These processes are analyzed from different perspectives within different contexts, notably in the fields of linguistics, anesthesia, neuroscience, psychiatry, psychology, education,philosophy, anthropology, biology, systemics, and computer science. These and other different approaches to the analysis of cognition are synthesised in the developing field of cognitive science, a progressively autonomous academic discipline. Within psychology and philosophy, the concept of cognition is closely related to abstract concepts such as mind and intelligence. It encompasses the mental functions, mental processes (thoughts), and states of intelligent entities (humans, collaborative groups, human organizations, highly autonomous machines, and artificial intelligences).
Thus, the term's usage varies across disciplines; for example, in psychology and cognitive science, "cognition" usually refers to an information processing view of an individual's psychological functions. It is also used in a branch of social psychology called social cognition to explain attitudes, attribution, and group dynamics. In cognitive psychology and cognitive engineering, cognition is typically assumed to be information processing in a participant’s or operator’s mind or brain.
Cognition can in some specific and abstract sense also be artificial.
Recovering Cognition After Stroke (Stroke Recovery #4)
Uploaded on Nov 28, 2007
A person who has had a stroke may suddenly have trouble speaking, or be unable to recall names or faces. While normal, this is quite frightening, and requires treatment. Watch More Health Videos at Health Guru: http://www.healthguru.com/?YT
I wasn't exactly a "senior" when my stroke happened, but I did suffer with aphasia, affecting my reading and speaking. It took therapy and time to bring me back to a somewhat previous level.
"We have shown that language therapy has a positive impact even long time after stroke, and not only on language but also on general cognition, as shown by the positive changes in the default network," said researcher Ana Ines Ansaldo in a statement. "My hope is that these findings will change clinical attitudes towards seniors who suffer from language disorders, by providing intensive, specific and focused stimulation for these patients."
The study appears in the journal Brain and Language.
SSTattler: Re-published Saturday, June 14, 2014 IB aka F! WDMFG?
In 1848, in a report written by Dr. John Harlow, M.D., the doctor related the unfortunate, rock-blasting accident by a railway worker, Phineas Gage, who had a long metal rod blasted through his left cheek, through his eye, and out of the top of his head. Consequently, the accident caused damage to his frontal lobe.
Gage survived the accident and had his memory, speech, and motor skills intact, but he had well-documented changes to his personality. (The photograph is of brain-injury survivor Gage, 1823–1860, shown holding the tamping iron which injured him).
Before his misfortune, Gage was described as organized, respectful to others, and well-tempered. According to Dr. Harlow, following the accident, he was "fitful, irreverent, indulging at times in the grossest profanity, and manifesting but little deference for his fellows." In other words, he was disorganized, had hissy fits, cursed, and disrespected others. The cause? He had damage to the frontal lobe of his brain.
Interesting video, below, by one of my favorite neuroscientists, Dale Corbett. For the record: There is no one I know up doing a better job of translating what neuroscientists have to offer to stroke recovery. Have a watch. The insights really start at 1:40 in. I'll post my critique below the video.
The overall message is important. Exercise is essential. It is unfortunate that the message is sort of convoluted in this video. They're talking first about TIA, and how if you have a TIA you should use exercise as a way to lessen the chance of a full-blown stroke. Then the discussion takes an obtuse tangent into how exercise is important to recovery, and then with no real explanation doubles back to talking about TIA again. Still, while maybe the messages should have been separated, both are important.
I would expect this to be a great line of stroke research but there is no great stroke association to ask if this is being researched in humans. We just may never know the answer to such a simple question - Low Levels of Pro-inflammatory Agent Help Cognition in Rats.
Although inflammation is frequently a cause of disease in the body, research from The University of Texas Health Science Center at San Antonio indicates that low levels of a pro-inflammatory cytokine in the brain are important for cognition. Cytokines are proteins produced by the immune system.
Jennifer Donegan, graduate student, and David Morilak, PhD, professor of pharmacology in the School of Medicine, found that neutralizing the cytokine interleukin-6 in the brain impaired reversal learning in both stressed and nonstressed rats. Reversal learning is a form of cognitive flexibility that is diminished in psychiatric diseases such as depression, schizophrenia and post-traumatic stress disorder. Cognitive flexibility is the ability to change previously learned thoughts and behaviors in response to changes in the environment.
“When we started the project, we thought cognitive flexibility would be impaired by stress-induced inflammation in a region of the brain called the prefrontal cortex,” Donegan said. “We decided to block interleukin-6 during stress to prevent the cognitive deficit, and to our surprise this made things worse. This suggested that it may actually be beneficial to maintain a low level of this pro-inflammatory cytokine in the brain.”
As a key next step, the scientists were then able to fix the cognitive deficit caused by stress by restoring a low level of the cytokine specifically in the prefrontal cortex. Both scientists caution, however, that there is still much to learn about interleukin-6’s role in cognition and in diseases like depression. “We’ve replicated just one piece of a very complex disease so we can understand the biology,” Dr. Morilak said. “We found that, in one brain region, one cytokine facilitates cognitive flexibility and is beneficial after chronic stress. But we delivered the cytokine specifically into that brain region using a virus, which we cannot do in people. And its role in inflammation may be very different than in normal conditions. There’s still a lot of work to do.”
Source: University of Texas Health Science Center at San Antonio
I have reviewed some research evidence documenting the adverse effect of obesity on cognition.
Dementia rates do appear increased in obese populations but the mechanism and issue of causality remain unclear.
If there is a direct effect of obesity on brain function, one might expect weight loss to improve cognition.
There have been a series of papers examining changes in cognition following bariatric weight loss surgery using the Longitudinal Assessment of Bariatric Surgery study.
At baseline, about one fourth of the sample showed impaired performance on at least one neuropsychological domain.
When I forgot to pick up a friend who has a brain injury I felt guilty. She blamed herself because she thought she had remembered the wrong date. This painful experience taught me that memory aids have to be in my face. I can repeatedly ignore a stack of reminders sitting in an out of the way place. I use classic memory aids in some unusual ways.
The current month sits on my kitchen table where I eat breakfast. I used to highlight important events, but the page of bright colors was distracting by the end of the month. Now I use 2 colored tabs to mark important dates and move the tabs when the events are over. I fold the page for each month in half and put future months in the napkin holder on the right. Every piece of paper is stuffed in it's respective month. The arrow is pointing to a month that has a postcard from my dentist reminding me to make an appointment. I got that postcard six weeks ago. If I had put the postcard on my kitchen counter who knows where it would be now. I also tear a page from an amusing day-to-day calendar before I start to eat which tells me what the current date is. Remembering can be fun. Breakfast = funny joke = date.
When I open a new month I put the papers in chronological order. First I have to schedule blood work. Then I have to pay a bill and use a ticket for a dance performance. This table is where I sit to tie my shoes. I put the papers on a cheap picture easel so they are in my face when I sit down. I also keep sticky Post-It notes and a pen every where I sit so I can write notes and stick them on my shirt. If I leave the note on my shirt too long it falls off when I walk. When that happens I stop what I'm doing and do what's written on the note.
A word of caution about memory aids. What helps one person remember doesn't make a bit of sense to another person. The memory aids I use are only examples that may help you discover memory aids that work for you. There are also lots of places that meet the "where you sit down every day" criteria. Negotiate with your family to find a prominent place that you can put your memory aids. It requires others to adjust to a few changes, but they will appreciate your improved memory. Readers of my blog have said how organized I am. I fooled you. My memory is on paper.
.JPG)
