The title of this post is the #1 question (comment) I receive on Twitter when I make a post about content on this site.
The answer to the question is a guarded yes. Most (in excess of 85%) cover basic issues in caregiving, healthcare, patient management, note-taking, self description, cognitive issues, case management, family management, and resources within the healthcare system. Some is specific to dementia (mind maps on types, treatments, research, experiences of those with dementia).
My expertise, research and personal interests, and personal theories derive from within the context of dementia in terms of my professional interests, experience as a caregiver for my mother and grandfather, research, test development and personal experiences. So I always present my ideas targeted toward persons living with dementia, their caregivers and medical providers, dementia care/case managers, and those adults concerned with improving and or maintaining their own cognitive skills or preparing for cognitive decline.
There are many applications of my ideas to many chronic and acute healthcare conditions. Caregiving issues are in many cases the same, healthcare management of different conditions may be fairly similar, and nobody has enough resources to do what they actually want to do.
Where I have great reservations in applying (or extending) my ideas about cognitive skills and quality of life is in understanding and intervening in cognitive and the other medical, and mental health issues of children and adolescents. ADHD, adolescent suicide prevention, youthful problem behaviors, dyslexia, and many other conditions require very specialized professional training. Caregiving by family members and paid trained-paid caregivers often requires different skills, knowledge, and emotional supports than it may for adult patients. While many trivialize the issues and state that declining older adults are like children, such a statement makes minimizes (in a way both pathetic and potentially dangers) the very real and large differences in the care of these groups at either end of the age spectrum.
NO posts or mind models in this blog are specialized for the very real unique needs of children, adolescents, and sometimes younger adults.
The mind model (aka mind map) below discusses my vision in developing the dementia focus on this website. I started to build the web site about two years after being diagnosed with a neurodegenerative condition (2012). Thus the entire blog is the work of a developer experiencing dementia while designing and preparing the content for the site. The site discusses my progression through cognitive impairment and decline into dementia. More importantly it discusses how I tried to help myself coordinate and use to full advantage the support and professional expertise made available to me by family, friends, the community, my doctors, and the general world-wide of patients and professionals the major issues.
Nothing in this blog post (or any other on blog post or page on the site) is intended to be, or promoted as medical, psychological, or any other form of treatment. The ideas in this blog are about using some commonsense note-taking and visual thinking methods to possible help you live better with dementia. I tried it on myself (only) and I am encouraged although I freely admit that full scientific study is needed.
These methods and comments will not substitute for medical and other professional treatments. They do not cure dementia. They do not slow down the progress of dementia. For me, at least, the methods have sustained and increased my quality of life and I do spend more time with my family and am more independent and in my opinion think better. But my dementia is not being treated and getting better; what I propose are methods that may make it easier to independently manage selected parts of your life, be in a better mood because you are trying to help yourself, be less of a burden to your caregivers, and report better to doctor what your experiences have been since the last appointment.
Many people are miserable almost all days when they have dementia. If simple, inexpensive cognitive tools can improve some or many of those days, the development of such techniques is a huge step forward.
I hope that others will examine the information here and use it to improve the decisions they, their caregivers, and their doctors and nurses must make about their formal medical treatment.
Here is what appears in the blog posts and elsewhere on Hubaisms.com.
Click on the image to expand it.
Click here to see Part 2 of My Vision in a separate window.
I expect to be adding a lot of posts about (or using) sketchnotes in the next few months to Hubaisms.com. Here is how to find the existing ones and the ones I will add. The information as a sketchnote. Click on the images to expand them.
I started this blog in the Fall of 2012. At the time I began, I was looking for something intellectual to do in retirement, wanted to talk about what I had learned over 35 years of evaluating health and social programs, and wanted to present many of my thoughts in mind maps.
And I had a hidden agenda.
In late 2009 I had been diagnosed preliminarily as having a neurodegenerative disease, probably progressive supranuclear palsy (PSP) or frontotemporal dementia (FTD); this was formalized in early 2010. In the years since my initial diagnosis, both working original diagnoses have been put in a related category of frontotemporal lobar degeneration (FTLD) with a number of other neurodegenerative diseases.My own dementia exhibits features of several of the FTLD disorders, something reported by both my own neurologist and a number of peer-reviewed publications as a common occurrence.
Over the years,I blogged, I spouted off about inequities and the denial of basic human rights. There was interest and my related Twitter following skyrocketed as I retweeted and commented about health-related issues and introduced the posts appearing on my blog.
I did not disclose that I had neurodegenerative disease and had progressed into dementia. I did not disclose that I had great difficulty writing without the mind maps and other visual thinking methods to support the generation of words. I did not disclose that I had neurodegenerative disorder for two reasons. First, I simply was not ready to disclose this for my own sake and that of my family. Second, as a psychologist, I was curious to see if anything would change when readers realized that I was writing while having the dreaded Big D that most readers equated with total mental disintegration and Alzheimer’s in its very advanced stages.
I kept plugging along at about 20 posts a month and gaining several thousand Twitter followers each month who also receive regular updates about my blog posts.
At the beginning of 2015 I started to write about my neurological problems, diagnosis, and what I felt and how I perceived things. I started to emphasize that my prior writings about mind mapping in a theoretical way designed to illustrate a useful tool were in fact descriptions of how the blog was written and how the methods helped me.
My hypothesis that some professionals who had regularly retweeted my work before the disclosure of dementia would stop doing so after I disclosed my medical status. I understand that as many may be concerned with identifying with my positions. That’s OK, my ideas are no more or less valid than they were in 2014 in the absence of compelling empirical studies. A lot of individuals with dementia and their caregivers as well as healthcare providers have at the same time discovered my work and provided feedback that the information and methods are useful to them.
Had you asked me 2012 what I expected for the blog I would have estimated 100-200 posts in total and that by 2016 I would either be dead or “cognitively dead.” I believe that neither is true and that I have many hundreds of posts left. I am aiming for 1000 before before I stop. Because of the acts of producing the blog, and the support of the blogging and tweeting communities, and critical visual thinking tools pioneered by Buzan, Rohde, and others, I think I might hit that goal and I feel calmer and more centered and more productive than I did in November 2011 when I retired. My focus is now more narrow and I am channeling my energy into talking about what what I have learned about the experience of dementia and how to use tools that might allow you to live well with dementia.
The most important thing I have learned since 2012 is that you can live well WITH dementia if you can force yourself to stop denying the dementia or fighting to be like you were before dementia and instead focus on the reality of dementia and how to live the most productive, joyful, and useful way possible during that stage of life. Life does not stop at dementia if you acknowledge it, change how you approach life a little, and then go ahead and enjoy all the good things available to you.
The methods I present in this blog are revolutionary and evolutionary. While many claim to have invented or otherwise codified the pretty pictures of mind mapping, none have developed systematic ways of presenting, communicating, and understand healthcare and medical information that can be productively used by patients, caregivers, and care providers of many types. Along the way, I have modified a number of the methods (especially by greatly extending, clarifying, and revising the work of Buzan and correcting many mistakes) based not only on my experiences as a psychologist with dementia who has studied literally hundreds of healthcare facilities over three decades, but also as one who has studied cognitive psychology and cognitive neuroscience, especially in the past five years.
As usual, here is a mind map. Please click on the image to expand it.
And, THANK YOU.
The presentation contains a random assortment of images from the blog. These images are the best way I know to communicate knowledge in a way that is accessible to most.
A small upgrade of a graphic that has been on my home page for several years. iMindMap has changed several times since I did the original version, and my ideas on the best ways to make effective maps have grown far beyond Buzan guidelines.
As of today this blog has almost 500 posts. Since I usually employ mind maps to make major points, there are considerably more than 1500 on the site and the number is growing very rapidly.
If you see an interesting post (or mind map) when you follow a link to the site, use the search button on the site to find related posts.
Keywords which will turn up dozens of posts include #caregiver, #dementia, #cognitiveimpairment, #mentalhealth, #neurodegenerative, #neurological, #psychology, #neuroscience, #HIV, #drugabuse, #socialjustice, #disenfranchised, and dozens of others.
The search box is located near the links to my book on Amazon and iBookstore on the left margin of each page.
Also note that the book, released in early 2015, has a number of mind maps and issues which are not discussed on the web site including long justifications of why I think the mind mapping methods I propose will work well for many (although not everyone) as a means of improving quality of life.
There is a lot more on the site and in the book than just what is in my past dozen posts.
Please explore my ideas with the search box on the site. Oh … and of course please buy the book.
And … I am glad to report that the wizard, bandaid man, Frank, geek boy, the sage, superboy, R2D2, the turtle who won the race, and my dog Sabra all agree with me. Donald Trump does not.
I sometimes use the words your kids hear hourly (partially, but only partially, concealed under the scratch sounds) on your local Pop/HipHop radio stations.
I sometimes discuss topics often portrayed but not named on Prime Time broadcast television.
I sometimes use the slang words for fornication and excrement (as applied to government, especially in the USA) that your children probably learned at home or in first grade. They probably learned to use these words to describe government from you.
I often use rare words and phrases like LEARN, TAKE RESPONSIBILITY, READ, and NEWSPAPER. Your child might ask you what these words mean.
I make it clear that even if you don’t like it, you need to EAT VEGETABLES, GO TO COLLEGE AND GRAD SCHOOL, VOTE, RESPECT DIVERSITY, EXERCISE, and stop worrying about Kardashians, Bieber, and Miley. I frequently endorse Lady GaGa, Miles Davis, John Lennon, and the Swedish Millenium (Dragon Tatoo) Film series as well as Yo-Yo Ma and Chris Thile. And although I think Obamacare is flawed (in that it does not go far enough), I continue to strongly endorse it.
There may be discussion and pictures of the human breast, vagina, and penis was well as brain scans, tooth decay, politicians, the effects of smoking, the destruction of the environment, and income disparities and poverty. I avoid the use of words like boob (for politicians and the breast), prick (for politicians and the penis), and asshole (for politicians and the anus), although your children may be more familiar with the slang than the proper anatomical terms or politicians’ names and responsibilities.
I support all religions that respect diversity and humanity and do no try to harm or forcibly convert those who practice other faiths.
Research has “proven” that gender, sexual orientation, race-ethnicity, skin color, place of origin, and organized religious group are NOT correlated with human kindness, human intelligence, human ethics, human fairness, human acceptance of other viewpoints, the search for peace, and the willingness to experience new cultures, knowledge, and friendships. The only people I rant about are those in the US government because observation make it clear that many (but I hasten to add not all) US politicians do not aspire to the ideals of kindness, intelligence, ethics, fairness, diversity, and peace. I also scream about lack of healthcare, mental health services, food, safety, peace, education, and respect for all groups in all countries. And I believe that all abusers of children, elders, minorities, and women should be housed in a special corner of Hell next to those who build or use weapons of mass destruction against anyone and those leaders who have attempted “ethnic cleansing.”
Want to get the attention of Big Pharma and patients who do not try to prevent common diseases? Require this statement or something equivalent on every bottle of medications (prescription and not prescription) sold. [Of course, filling in the blanks with numbers derived from clinical trials, longitudinal studies and other credible scientific information collected by independent qualified professionals.]
This drug works ___% of the time for ___% of the patients who use it, producing a ___% percent improvement for ___ months at a list price of $___ per month. Insurance typically pays for ___% of the cost. ___% of patients experience severe side effects.
This data — or some variation of it — is currently or should be collected by the FDA and confirmed by consultants independent of both the FDA and the pharmaceutical company.
Big Pharma will not like this proposal. Elected officials who have been “bought” by Big Pharma contributions to their election funds will not like this proposal. We should listen to neither group.
Consumers of medicines and treatments should know the approximate cost of their treatment and its efficacy when collaborating with their healthcare providers on a treatment plan.
Everyone should consider the relative costs of preventing diseases rather than treating them. The information provided by these labels could help individuals decide whether a healthy lifestyle provides financial benefits to them.
Question: Which groups of people are not doing their jobs by trying in a meaningful way to eliminate foreign influences on our elections?
Answer: Circle all answers which apply.
A) US Senate
B) US House of Representatives
C) President of the United States and White House Staff
D) Secretaries of Relevant US Government Departments
E) All of the Above
p dir=”auto”>Time to demand that the bozos you identified above are told by the US public to stop sitting on their backsides (and cashing the checks foreign influences are providing to some to promote their own careers and line their own pockets).
June 2 until July 12. That’s a long time for any person. It’s a much longer time for a person with cognitive decline. It is the longest time between posts on Hubaisms.com.
Typically, if you got back through my 800 posts since 2012, you will find that on average the gap between consecutive posts is about 3 days with flurries of activity when I post several times per day.
Why the big gap for the first time? Here are some of the reasons.
11 fantastic days in Spain (Barcelona, Majorca, and Madrid) with wonderful food, great museums, and immersion in another culture
working on a book
preventive activities on my part and that of my medical providers against the rate of increasing cognitive decline
feeling kind of lazy
“malfunctioning” of my personal clock (consistent organization of daily schedules)
video bingeing on The Expanse, Salvation, and Marvel Universe movies (all highly recommended)
working on some new methods of using visual thinking (see next post) to deal with cognitive decline
Here are some of the consequences of the “absent six weeks.”
very rusty on WordPress (blogging software)
very rusty on using the iMindMap program and others for computerized mind mapping
development of some new techniques and variants of old techniques for fighting cognitive decline and improve some of the methods I have been using
During the six week break I did conclude that my life is slowing down and it is getting harder, never easier, to keep a definite “work” routine going. Given that I was in a consistent and fairly invariant pattern of work and other activities, “relaxing” from that set routine has defiitely made it harder to re-establish the patterns that have been keeping me stable over the past eight years. Keeping on a regular schedule of cognitive exercise has been important for me over almost a decade. Time to get back on a regulated at the schedule. At the same time, I am going to try to get other things back to normal and establish
In the next few weeks, I will be posting a lot on mind mapping, improved techniques for effective visual thinking, experiences during my cognitive decline, and new ways to document your daily life (throughout your lifespan and during cognitive decline).
I use Grammarly with my blog and social media posts as well as everything else I type to check spelling and grammar. Grammarly works well with both USAish, UKish, and the English of the rest of the world.
Grammarly is an advanced editor that is extremely that catches most spelling errors and surprises me all of the time with its excellent grammar suggestions
Grammarly works well in virtually all programs I use such as WordPress, Twitter, Facebook, note editors, email, and many other apps.
Donald Trump should acquire copies for his own unsecured cell phone tweets and his speech writer. After all, what is an inane idea with spelling errors?. This problem is probably also driving the Russians and Chinese crazy, especially if they are trying to use Google Translate..
I think it a fantastic time of year for most of the things I like to do in spite of the inevitable 5:15 PM thunderstorms and the usual 5-10 days of 99 degree temperatures.
Row a boat, paddle a canoe, work on your paddle tennis game, walk in the sand of many bodies of water, drop an ice cream cone, and cheer at the baseball park. Take a vacation even if your travels are limited to local pools and nearby state and national parks. Go watch a little league game and take some pictures. Have a picnic. And never get frustrated by the amount of sweat you produce.
Although there is no account of the season in which G-d created the universe within the Torah, Koran, or Old Testament, it strikes me that summer is a most glorious achievement. I conclude it must have been the first season.
The joys of summer. Click on the mind map to expand it.
Think about entering the healthcare system as a patient. You get handed 5 pages of tiny font sheets to fill in with your address, person paying the bills, the medical history of yourself and two generations back every time you go in, You scribble out answers into tiny boxes and hand the forms back. Then they give you 3 small-font pages of legal disclaimers and conditions to read and approve.
Next a nurse takes you aside for a blood pressure reading, a weight assessment, and various other information. He scribbles all of the resuolts into a chart.
Next up the doctor enters. She scans all of the paper you filled out and what the nurse wrote down, and then starts asking you questions in a shotgun approach. When you comment that the answer is still what you wrote down 5 minutes earlier, she is not impressed.
Later the doctor gives you instructions. She goes fast but alo types the suggestions into an EMR (electronic medical record). You may lose the form (common with the cognitive diagnoses I have), not understand everything in the report, and not be able to read 2 point text. but at least you can recover what she wrote.
Don’t they always say a picture is worth 1,000 words? Don’t most people agree with that statement?
For the current aging birth cohort (boomers), images are a way of life. Photos were available when we were born and financially accessible to most by the mid-1960s. The number of pictures increased in newspapers and later on the Internet over the past 50 years. Immediate images and videos from the ubiquitous smartphones have been available to the majority of world-wide families for the past 5 years.
Home black and white television sets became very common in the 1950s and color televisions in the late 1960s.. By the 1990 many US homes had more than one television set. In the 2000s screen (flat panel) sizes at least doubled in size in most homes. 700 channels and 3 TV sets and and nothing on.
We all use images constantly and reading text is going down. We primarily get our news from pictures on the Internet, in print media, and shared with friends or on social media. Pictures are used to influence our attitudes, behaviors, preferences, and to sell us products.
I have been working hard at creating and using images in my own healthcare for the past 9 years after I was diagnosed with a progressive neurocognitive disorder.
About six months ago I had a PET scan of my brain as well as my fourth MRI since 2010. I now have two neurologists. The secondary one (a cognitive neurologist who ordered the scans) emailed me a one page written report wit the results. No images were shown on that report. At my following appointment she discussed the report with me. She commented that there were no images to see. I then asked her if she was going to correct the conceptual typo in the report. In the first summary paragraph of the report it said that my PET scan was normal; the remaining two-thirds of the report gave numbers that indicated portions of my brain were not functioning well. Then the first paragraph was repeated at the end but this time the summary was identical in all but one word which said that my scans indicated significant problems. The doctor sent an email to medical transcription while I was there pointing out the problem.
I asked to see the scan and was told that there was nothing for me to see. I was more than a little surprised by that (well a lot surprised!). I had thought that it would be cool to see which parts of my brain were goners and which were lighting up.
A month later I saw my primary neurologist who has been in charge of my care for more than 9 years. I asked her if she had read the report on my PET scan and last MRI. I explained that I was really surprised that the other neurologist told me that there was nothing for me to see. So she then went to her large clinical display, called up my file and showed me sequential MRI and PET scans. It was pretty easy to see changes in my brain over time. Nice pictures, too. I learned a lot about my treatment and disease progression over time.
A picture is worth 10,000 words. Five scans over 10 years is a treasure trove.
Visual patient-provider information exchanges can be aided by images. Self management and that by a caretaker can be aided by images. Memory can be enhanced with images. An understanding of the problem may be more easily achieved by family members and the patient when supported by images. This is a win-win-win-win situation.
The system I used for creating images to manage information allows me to manage myself better, relieve stress I put on caregivers, understand medical research better, and communicate with my doctors clearly. It primarily uses mind maps. Both neurologists have concluded that I use my techniques to compensate for some of my neurological (brain functioning) problems.
There are about 700 posts on this web site about issues in using mind maps, how to do it, my experiences, and “real” examples of using visual thinking methods as my cognitive functioning declined.
Oh … It should be noted I estimate that using visual methods of processing medical information for ONE YEAR are very inexpensive in comparison to ONE Emergency Room visit, ONE primary health care visit, ONE week of a patient’s period of acceptable cognitive functioning, ONE day of wasted homecare, ONE day out of work for a family caregiver. Now let’s multiply that by the number of Americans receiving healthcare through self pay or public insurance programs (Medicaid, Medicare, others) or private company managed health insurers.
Here’s another mind map about how the healthcare system might be made better (and less expensive) by incorporating health care information into mind maps and passing them around among patients, caregivers, family members, friends, physicians, nurses, and other healthcare professionals.
When you have (or have a family member or a patient under your care has) a long-term medical or behavioral condition, it is important to monitor how the disease symptoms change over time.
Individualized treatment in dementia can consist of attempting to control the illness through medications and behavioral techniques to slow the progress of the disease. While in many cases the condition cannot be eliminated, often it can be slowed. There is no cure for dementia and very few medications have been demonstrated through clinical trials to work. The medications that work usually do so with only small changes in the functioning and quality of life and are only approved for Alzheimer’s Disease, only one of the conditions that are accompanied by dementia symptoms.
For a patient or healthcare professional, an important means of summarizing changes in medical and psychological functioning can be through a comprehensive mind map (or other visual display) summarizing the current status of symptoms of the disease. A huge benefit of documenting change over time is that it can “force” both the person with a disease and healthcare providers to view the condition in a wholistic way.
The visual display can also provide information useful suggestions for individualized behavioral and non-pharmaceutical interventions to help alleviate symptoms.
Face it. You are going to age. You could have an accident and injure your brain. You might develop a brain condition due to disease or environmental toxicity.
Learn the mind mapping skills that can help preserve your memory and thinking processes. Learn it as early in your life as possible. Develop mind maps about your life experiences. Save the copies and computer app setups should you have cognitive decline and wish to reference them.
Mind maps and related methods can help you use visual thinking to fight against cognitive decline and dementia. These methods can also help you maintain physical and mental health by maintaining control, making good decisions, remembering key information, and planning. Or, maintaining self-sufficiency, control, and independence so as to retain an acceptable quality of life.
This is post is part of a projected series of at least 20 posts. Searching for any of the keywords given above in the search box for this site will list all of the tweets in this series. The search box is located in the upper left corner of each post. The most accurate search should come from TGVTM or #TGVTM.
In the three prior posts (Prologue, Part 1, Part 2) I have discussed a general model of cognitive information processing for improving thinking. It is my belief that the model can be used by adults with typical patterns of aging as well as those with cognitive impairment and dementia. The model is characterized by several major features. These are
a large percentage of the input and process and outcome information are in visual form;
the model uses a unique blend of methods of processing combinations of primarily visual materials.
I call the model The Great Visual Thinking Machine™. The acronym is TGVTM™. The TGVTM is not a physical machine like a computer or automobile. Rather it a combination of procedures and knowledge as well as computer and commonsense algorithms that allow you to easily process large amounts of visual and verbal information. The key to the TGVTM is a way of using “pictures” to organize information, thoughts, and the results of processes. It can aid in better understanding related information, coding complex information into high-information images, an advanced way of increasing the likelihood that the information can be retrieved. The intent of the TGVTM is to produce generally better overall thinking.