Archive for the ‘My Damaged Life’ Category

Getting offline – the good old-fashioned way

January 2, 2018

Broken Brain - Brilliant Mind

offline no wireless symbolI 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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Chronic Disease Self-Management Program (Better Choices, Better Health® Workshop)

February 5, 2016

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.


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.

Speaking Out About Speech Challenges

February 3, 2016

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.”

The Power

October 2, 2014

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

September 24, 2014

“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

May 15, 2014

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

Volunteer Guide – make a difference from anywhere at anytime – America’s natural and cultural resources volunteer portal

American Red Cross – volunteer in your local community

United Way – we envision a world where all individuals and families achieve their human potential through education, income stability and healthy lives

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

March 28, 2014

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.


March 26, 2014

Yep, that was me. Moron.

I knew full well I had a family history of hypertension (high blood pressure), diabetes, and risk of stroke, yet I did nothing to control my extremely high BP. At the time of my stroke it was 254/170. If not moronic, then selfish, as my family was left to deal with my poor choices.

Fortunately (or unfortunately, as should be the case), I am not alone. The number of obese people in the U.S. (including children) is alarming. High blood pressure is rampant and uncontrolled. The rate of onset type 2 diabetes and associated risk for heart attack and stroke are higher than ever. The internet revolution has made more people sedentary. Good company? I don’t think so.

If only. If only I had known better. If only I had known the risk of too much sugar. Or carbs. Or too much of anything. And the consequences of too little exercise.

Excuses, I know. I hid behind them too. That’s what being human is all about. We all make mistakes. But do we learn from them? Apparently not, as the cost of health maintenance continues to spiral out of control.

Solution? It begins with education. And regular visits to the doctor. It also helps to have a physician who is well-versed in nutrition, and is willing to take a holistic approach to the practice of medicine and prescribe to the patient exercise and a healthy diet, along with necessary medications. At your yearly physical exam, request extended blood tests. If your doctor questions this, find another doctor.

In the meantime, educate YOURSELF. Keep up with the latest information. Read labels. Check for side-effects of medications. Understand how OTC medicines and vitamins interact with what you eat. Be proactive; be conscious of your body. Be skeptical of anything said or written about food, medication, and exercise. Science and research changes and improves daily. Items that were once thought bad for you are no longer, and vice versa. Doctors used to recommend cigarette smoking to “nervous” patients. My, how things change! Knowledge is power.

Despite significant advances, Medicine still has a long way to go in knowing the workings of body and mind, and proper treatment of malfunctions. My advice: stay current, as many in the health profession do not. Hearsay and legends still exist and are propagated without control, thanks to social media.

Just because I was a moron in my past does not mean I have to continue down that path to self-destruction. I learned the hard way what bad habits can do to me and, unfortunately, to my family. Now, through this blog and elsewhere, I try to make my damaged life an example of how not to live your life, if you care anything about yourself and your loved ones.

Life is what you make of it. Live and learn.

Grain Brain

March 20, 2014

What exactly is gluten, and why should we avoid it in our diet? I was wondering the same thing, and began reading Grain Brain by Dr. David Perlmutter to find answers. One can be allergic to gluten and not know it. Supposedly it causes inflammation of the brain. Not good for stroke survivors or anyone else.

Latest and greatest health craze? A farce? I thought the same thing. Then I read the book. Got me thinking. Not a fad or trend, more of an awakening, an adjustment. Celiac disease is real, although it is the most dire of gluten sensitivity. The book is full of success stories, historical references and clinically-affirmed findings, and makes a direct link between gluten and brain inflammation that can lead to dementia and other mental disorders, including epilepsy, Parkinson’s and ALS. The author is both a neurologist and certified dietician, and maintains a website with information and gluten-free recipes.

What makes this an issue now? Hasn’t man been consuming grain since his days as hunter-gatherer? True, but things are different now. Genetically, humans are still the same but no longer have to work hard to find food. Modern grain processing and genetic modification have increased the risk of gluten sensitivity, and this book lists the health issues and consequences of ingesting such foods. There are many that contain gluten; some surprised even me. Even cosmetics and shampoos contain gluten. And science is only now beginning to fully understand the significance of how certain dietary choices impact our health, and this information rarely is included in conversation between doctor and patient. A simple test for gluten sensitivity would go a long way to solve a lot of our ailments and render many drugs irrelevant.

The book lists many options for going gluten-free, and the immediate and long-term benefits of doing so. Simply removing gluten from your diet can improve your brain function and prevent or postpone onset dementia. It can alleviate dependence on medication for those who have type 2 diabetes. You will experience less fatigue and fewer headaches, and become less dependent on medication for illnesses such as depression, ADHD and bipolar disorder. All simply by making a change in diet. And best of all, it’s free.

A high fat, low carb diet. Something considered unhealthy just a few years ago. But times (and scientific research) change. I have nothing to lose but my brain fog and morning sluggishness in trying this for myself. I recommend you do the same.


March 11, 2014

As a stroke survivor, I have come to realize that there are many other survivors who had no control over the factors that caused their strokes. Yet, they feel guilty and carry shame and have troubled relationships with family and friends. That does not apply to me.

I knew of my family medical history – our tendency toward high blood pressure and susceptibility to type 2 diabetes and stroke. Yet I ignored this and avoided going to the doctor for help with my elevated BP, which most likely caused my stroke. Which makes my family victims.

I really have no way to make it up to them, other than to apologize for my behavior and do my best to prevent a repeat of my poor choices. They have gone through so much because of this, altered their lives because of me.

I fully accept the blame. My fault entirely. Fortunately for me, I have been forgiven. Many lessons were learned, though, not to be forgotten.

There are those survivors who have suffered needless guilt over their strokes and resulting lifestyle changes, who have not been forgiven for events not within their power to control. They have been neglected or abandoned by their families, gone through untimely divorces, and have to seek counseling for depression and related psychological problems. They may harbor anger and resentment, and consider themselves failures. They have my deepest sympathy.

My take on this – there really are no victimless strokes. Some may perceive themselves as “victims” while others truly are. All I can say is to accept responsibility for poor choices, apologize to those impacted by those choices, and practice Christian forgiveness, whether or not you are a follower of Christ.

But don’t forget the journey, or the ultimate goal.