Getting offline – the good old-fashioned way

Broken Brain - Brilliant Mind

I keep thinking about what life was like before the Internet. I know, it’s hard to imagine — especially as I’m writing this (and you’re reading this) online.

The Web has so completely altered how we do things, how we think about things, and what we think about, it’s very difficult to remember what it was like before.

But there was a time before the Internet. I can remember it, however faintly. And I remember how quiet my weekends used to be, when I would spend hours just reading, studying books I had, instead of surfing around online.

I feel very ambivalent about this, to be honest. I do love all the expanded access to research and interesting information that the Web makes possible. At the same time, though, it’s so full of distractions, that I’ve missed a lot of insights about much of the information out there, because something…

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Keeping safe, keeping sound, keeping rested

Broken Brain - Brilliant Mind

One of the major long-term issues I have, thanks to all those mTBIs, is that I tend to get tired… but I don’t realize it, until I’m so tired I can’t rest enough to catch up. When I’m tired, my thinking is off — as in off. I get more impulsive, and I also get angry quickly. It kicks off a self-fulfilling prophecy of lots of activity, followed by increasing fatigue, followed by lots of activity (to pump myself up with adrenaline), leading to increasing fatigue…

And before I know it, I’m so tired, I can’t rest.

I’m tired. I’m wired. And I’m unbelievably impulsive. As in – reserve a new domain name and launch a new online business impulsive. As in – push myself to make poor choices that pump me full of adrenaline that make me feel like myself again, even though I’m putting myself in danger…

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May is Stroke Month

Vangi Uribe's Stroke Blog

“It’s the fans that need spring training. You gotta get them interested. Wake them up and let them know that their season is coming.” Harry Caray

May is Stroke Month and some of these things about strokes I’ve noted before, but as I think about it, we just started the baseball season in the U.S. and Canada for Major League Baseball, which means we just finished the Spring Training season. I figure it’s alright to review these concepts. (If it works in baseball, why not with strokes?) It’s Spring Training for strokes! I think this is a great quote. Harry Carey was a sportscaster for several baseball teams, but I associate him most with the Chicago Cubs. I’ve always been impressed that professional baseball players get together before the season starts to review the basics of the sport, work on team attributes and try new plays in what they…

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Chronic Disease Self-Management Program (Better Choices, Better Health® Workshop)

The Chronic Disease Self-Management Program is a workshop given two and a half hours, once a week, for six weeks, in community settings such as senior centers, churches, libraries and hospitals. People with different chronic health problems attend together. Workshops are facilitated by two trained leaders, one or both of whom are non-health professionals with chronic diseases themselves.

Subjects covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, 6) decision making, and, 7) how to evaluate new treatments.

Each participant in the workshop receives a copy of the companion book, Living a Healthy Life With Chronic Conditions, 4th Edition, and an audio relaxation CD, Relaxation for Mind and Body.*

It is the process in which the program is taught that makes it effective. Classes are highly participative, where mutual support and success build the participants’ confidence in their ability to manage their health and maintain active and fulfilling lives.

Does the Program replace existing programs and treatments?

The Self-Management Program will not conflict with existing programs or treatment. It is designed to enhance regular treatment and disease-specific education such as Better Breathers, cardiac rehabilitation, or diabetes instruction. In addition, many people have more than one chronic condition. The program is especially helpful for these people, as it gives them the skills to coordinate all the things needed to manage their health, as well as to help them keep active in their lives.

How was the Program developed?

The Division of Family and Community Medicine in the School of Medicine at Stanford University received a five year research grant from the federal Agency for Health Care Research and Policy and the State of California Tobacco-Related Diseases office. The purpose of the research was to develop and evaluate, through a randomized controlled trial, a community-based self-management program that assists people with chronic illness. The study was completed in 1996.

The research project had several investigators: Halsted Holman, M.D., Stanford Professor of Medicine; Kate Lorig, Dr.P.H., Stanford Professor of Medicine; David Sobel, M.D., Regional Director of Patient Education for the Northern California Kaiser Permanente Medical Care Program; Albert Bandura, Ph.D., Stanford Professor of Psychology; and Byron Brown, Jr., Ph.D., Stanford Professor of Health Research and Policy. The Program was written by Dr. Lorig, Virginia González, M.P.H., and Diana Laurent, M.P.H., all of the Stanford Patient Education Research Center. Ms González and Ms Laurent also served as integral members of the research team.

The process of the program was based on the experience of the investigators and others with self-efficacy, the confidence one has that he or she can master a new skill or affect one’s own health. The content of the workshop was the result of focus groups with people with chronic disease, in which the participants discussed which content areas were the most important for them.

How was the Program evaluated?

Over 1,000 people with heart disease, lung disease, stroke or arthritis participated in an randomized, controlled test of the Program, and were followed for up to three years. We looked for changes in many areas: health status (disability, social/role limitations, pain and physical discomfort, energy/fatigue, shortness of breath, psychological well-being/distress, depression, health distress, self-rated general health), health care utilization (visits to physicians, visits to emergency department, hospital stays, and nights in hospital), self-efficacy (confidence to perform self-management behaviors, confidence to manage disease in general, confidence to achieve outcomes), and self-management behaviors (exercise, cognitive symptom management, mental stress management/relaxation, use of community resources, and communication with physician).**

What were the results?

Subjects who took the Program, when compared to those who did not, demonstrated significant improvements in exercise, cognitive symptom management, communication with physicians, self-reported general health, health distress, fatigue, disability, and social/role activities limitations. They also spent fewer days in the hospital, and there was also a trend toward fewer outpatients visits and hospitalizations. These data yield a cost to savings ratio of approximately 1:4. Many of these results persist for as long as three years.*** Studies by others have reported similar results (see our bibliography).

How can my facility offer the Program?

Trainings for representatives of health care organizations are 4½ days. There are 4-5 trainings scheduled at Stanford University each year. Click “Training” on the menu to learn more.

NOTES

Seidel can be ordered from Bull Publishing.

**A complete report on the measures used and their psychometric properties can be found in Outcome Measures for Health Education and Other Health Care Interventions, by Lorig, Stewart, Ritter, González, Laurent and Lynch, Sage Publications, 1996.

***Outcome data reported in (more citations in our bibliography):

Lorig KR, Sobel DS, Stewart AL, Brown Jr BW, Ritter PL, González VM, Laurent DD, Holman HR. Evidence suggesting that a chronic disease self-management program can improve health status while reducing utilization and costs: A randomized trial. Medical Care, 37(1):5-14, 1999.

Lorig KR, Ritter P, Stewart AL, Sobel DS, Brown BW, Bandura A, González VM, Laurent DD, Holman HR. Chronic Disease Self-Management Program: 2-Year Health Status and Health Care Utilization Outcomes. Medical Care, 39(11),1217-1223, 2001.

In HMO setting: Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a Self-Management Program on Patients with Chronic Disease. Effective Clinical Practice, 4(6),256-262, 2001.

http://patienteducation.stanford.edu/programs/cdsmp.html

Speaking Out About Speech Challenges

Posted by Lisa O’Neill Hill – 29 Jan 2016

Montana resident Jerri Thueson had a stroke two years ago when she was 49. It affected her right side and her ability to speak.

“I could barely make a whole sentence,” she said.

Thueson went to speech therapy and found other ways to tell people what she was thinking or what she needed. She practiced using an app on her iPad.

Speech challenges after stroke are common, and there are different types:

Aphasia: A survivor with aphasia may have trouble understanding language, talking or may have a hard time coming up with the words he wants to say. Sometimes people with aphasia use the wrong words; it can also affect reading and writing. It does not affect intelligence.

Dysphagia: A stroke can cause swallowing problems, which can cause challenges with speech and with eating. Dysphagia can happen because of weakness and a lack of coordination between the muscles in the mouth and throat.

Dysarthria: This happens when muscles in your lips, tongue vocal folds or diaphragm don’t work the way they need to for clear speech.  A survivor’s speech might be slurred, mumbled, slow or choppy and can be difficult to understand.

Regardless of what kind of speech issue you’re having, there are things you can do.

“One of the things that seems to be overlooked is that there are ways that people can still communicate,” says Kathy Newkirk, a speech language pathologist in California. “Even if a person can’t talk, they might be able to write a message so you can understand or they can point to something on a chart.”

Apps for your phone or iPad can be particularly helpful, she says.

Newkirk recommends getting into speech therapy as soon as possible. If it’s not offered, ask for it. Speech therapy should begin as soon as a doctor clears a patient for therapy.

Every survivor is different, she says. For some, getting back to pre-stroke speech can take years; others come back much quicker. It’s important for caregivers to be involved and be supportive.

“Motivation is a huge issue as is family support. It kind of does come down to the extent they are willing and able to practice and work for it,” Newkirk says. “The brain is sometimes forming new connections. It does take a lot of effort.”

Thueson’s advice to stroke survivors struggling with speech challenges?

“Do therapy. Don’t give up. Plan to stick with it and go to a support group. Mainly, don’t give up.”

http://www.strokesmart.org/Speech-Challenges

Review of The Dark Craft

The Dark Craft by Wesley Fox; paperback, 368 pages, published in 2012 by CreateSpace

RATED: 3 Stars out of 5

https://www.goodreads.com/book/show/18072495-the-dark-craft

The Dark Craft offers an interesting, terrifying look into the haunted world of Amber McCall. What begins as a fairly typical life of a New England college student takes an ominous turn when she buys her first house, three centuries old, with a mysterious and malevolent history.

Almost at once the hauntings begin. Otherworldly noises and dark apparitions take their toll on Amber’s sanity. She discovers an old book with a pentagram on the cover buried in the basement, that despite her best effort to keep locked in a trunk, mysteriously reappears in different places in the house. She is then encouraged to contact Lee and Janice Monroe, husband-and-wife paranormal investigators and demonologists, with close ties to the church. The Monroes were not available to investigate immediately, so instead Amber contacted her friends back in her hometown in Arkansas.

Once the friends arrived and toured the house and experienced its intimidating phenomena, they all agreed it had a most unwelcome presence, very likely demonic in nature. When the Monroes returned to town, they sought Amber to help with her plight. They began by reading the curious old documents found hidden in her attic, including a diary written by a young woman back in the 1690’s, telling of a man with a terrible secret and supernatural abilities.

After further paranormal incidents occurred in the house, a priest was called to investigate and gather evidence to convince the Catholic Church to perform an exorcism. He was unsuccessful, so more spiritual people were called in and finally chased away the evil entity.

The old house now knew peace — unheard of since it was originally inhabited after the unfortunate conclusion of the Salem Witch Trials.

The Power

Today, I had The Power.

Stroke and TBI survivors know what I’m talking about. That frustratingly rare occasion to fully function, to multitask, to knock out items on my to-do list. Just to think clearly. The Power – decreased due to brain damage, preventing me from functioning on a level as before. Thank goodness for neuroplasticity, the brain’s ability to construct new neural pathways lost to damage.

On days when I experience The Power and take action, it usually comes with a cost. Fatigue sets in sooner. Concentration breaks down. Memory goes out the window. Mistakes are made. Taking frequent naps can help, or getting more sleep at night to refresh, to fight and conquer the struggle tomorrow! Because that’s what seemingly simple chores are to many TBI and stroke survivors – a struggle, just to complete.

Patience is key when using The Power, on the part of yourself and others around you. Don’t set your expectations too high. Start slowly, accomplish what you can. Next time, expand your goals, remember (or write down) how things went, and adjust accordingly. Sometimes you hit a home run, sometimes you strike out. Don’t expect miracles. Pace yourself. Housework – like healing – takes time and energy. Don’t forget to eat a good meal beforehand.

Make a to-do list, and share it with your family. Accomplish your tasks and ask candidly how you did – request feedback both positive and negative. Learn from your mistakes (if you are like me, there will be many!). CAUTION: never attempt projects that you are physically or mentally unable to do. Ask for help. Your mind and body are taxed enough in the healing process.

It’s a good feeling, having The Power. Just wish I had it more often.

On My Own

“We’ve done all we can. It’s up to you from now on.”

I reached a point in my recovery where I was released from therapy, either due to completion or insurance coverage limits. Kind of like stepping off the end of a gangplank, unsure of where I might land in the World of Normal. But I cautiously took that step, and rarely looked back. It really was up to me now, with assistance and encouragement from my family and friends.

A roller coaster ride at first, my life eventually leveled out. I continued physical therapy at home, with the aid of a guidebook provided by my therapists, a TENS unit to stimulate the muscles in my affected leg and foot, an AFO for support, a blood pressure monitor, and a diabetic blood test kit.

It was a huge struggle just to get out of bed every morning, much less do the prescribed exercises. I became lightheaded and passed out frequently. I was lost, anxious, and had frequent panic attacks.

I would not have progressed this far without my family. They were my lifeline (literally), my coaches, my critics, my cheerleaders.

But, ultimately, they could only do so much in my journey to recovery. It was up to me to get myself motivated, even through the cloud of frustration, depression and grief.

Through it all I relied on my belief in God and the power of prayer. I was told that while in the hospital ICU, I was administered Last Rites. I was that close.

I remember absolutely nothing of that first week of my hospital stay. My wife never left my side. She was my guardian, my protector, my intermediary with the doctors and hospital staff. My earthly angel.

When I recovered enough to move out of ICU, my therapy began. Simple stuff, like learning how to eat, swallow, walk and talk. Things I used to do without thinking. I was too weak to be embarrassed or regretful. I felt like a human pincushion, when I felt anything at all. Then came awareness, like the world was opening up to me. Sort of like being born again.

It is very difficult to describe the stroke and recovery experience to someone in terms they can understand, especially when I still don’t completely understand it myself.

So, my journey continues, on my own. My advice to those on a similar path? Stay focused. Be patient with yourself. Do everything you possibly can, learn from your mistakes and how to graciously ask for assistance. Adapt what you cannot fully get back; be inventive. Recovery can be a life-long journey, never give up. Believe in yourself, even when no one else does. Celebrate your victories, no matter how small. And most of all, have faith in what you can accomplish when you set your mind to it. Love your family, even when they don’t seem to love you back.

And remember, you are never truly alone on your path to recovery. There is always Someone looking over your shoulder. Rely on that Higher Power.

Slow and steady wins the race.

More information on therapy and rehabilitation after stroke.

Making a Difference

Feeling out of touch with your community or the world at large? Happens all too frequently to people who have retired or can no longer work due to disability. Many require ways to stay motivated, to keep engaged with the community and maintain a sense of worth.

Are you looking to create new challenges and set new goals? Volunteerism is an option. It allows you to give back, to contribute to those in need, and feel better about yourself.

Do you have:

• specific knowledge and life skills? – become a docent, mentor or teacher
• tech experience? – offer to create and/or maintain a blog or website
• organizational abilities? – volunteer as a bookkeeper or librarian
• leadership qualities? – become a scout troop leader
• D-I-Y savvy? – work for Habitat for Humanity or similar organization
• a vehicle and able to drive? – deliver meals to homebound persons
• communication skills? – populate phone lines for charities
• lack mobility? – help organize from home

Locating an opportunity to volunteer in you area may seem daunting. If so, there are organizations that can pair you up with a group that can best use your abilities.

Volunteer Match – provides links between people and causes
http://www.volunteermatch.org/

Volunteer Guide – make a difference from anywhere at anytime
http://www.volunteerguide.org/

Volunteer.gov – America’s natural and cultural resources volunteer portal
http://www.volunteer.gov/

American Red Cross – volunteer in your local community
http://www.redcross.org/support/volunteer

United Way – we envision a world where all individuals and families achieve their human potential through education, income stability and healthy lives
http://www.unitedway.org/take-action/volunteer/

Volunteering – doing so will let you help others and make a difference in the world, and in your life as well.

We’re Here for Each Other

Recovery from any injury takes time. Time spent in reflection. Could I have done anything to make the outcome of my trauma any different, or to prevent it? What will become of me, and my relationships? How will I cope with my new reality? So many unanswered questions. Life is complicated enough without additional baggage.

Specialists in psychology call it grieving. Perfectly natural emotion. Grief expressed at the loss of part of you that cannot be gotten back. Everyone grieves at some point in time. How we react to it can make all the difference in the world. Most of us need some help in dealing successfully with grief.

Professional counseling is recommended to many who survived physical or emotional trauma. Most are helped by this, though some are not. They feel lost and alone. Abandoned. Trivialized.

Many require medication to overcome temporary mental issues such as depression, a common problem faced by survivors of trauma. Hopefully with additional counseling they can be weaned off anti-depressants over time. Some find solace among those who share common problems, as in support groups, meeting either in-person or online.

Support groups provide positive conversation in mutual life experience – understanding, sympathy, empathy, encouragement, information, advice, humor, and an occasional admonishment when you lose focus.

Bottom line: you don’t have to be alone, if you really don’t want to. Someone will be there for you. A family member, friend, co-worker, counselor, clergyperson, or fellow survivor will help sort out your frustrations and get on with your life.

No man is an island. We’re here for each other.