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social, health, political imagery through the lens of George J Huba PhD © 2012-2019

Search results for frontotemporal dementia

Imagine how difficult it might be for someone with cognitive impairment–dementia to look at a list of information types in a small front in the middle of a page text. Now imagine that there is a better way. Look at the two diagrams (click to expand) and see if you think that some graphics scattered around a web page or report might make it a little easier to understand what is being said. Even for a PhD with 35 years of experience in work directly related to dementia.

And the cost of creating accurate and compelling is not that much.

See my point?

2The ABC's of FTD (frontotemporal dementia) The ABC's of FTD (frontotemporal dementia)

The ABC's of FTD (frontotemporal dementia) Simplified Format

 

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Modern terminology for Frontotemporal Dementia (FTD) has been expanding. Now, FTD is included within a larger group of neurodegenerative conditions including Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), FTD with Parkinsonism, and FTD with Atrophic Lateral Sclerosis (ALS). The combined set of diseases including FTD behavioral variant and PPA is referred to as Frontotemporal Lobar Degeneration (or Dementia).

At the present time, a variety of factors (including the research literature, the interests of advocacy groups for individual diseases, and prior medical practices) continue to the nomenclature and typology of these diseases inconsistent in different places.

Types of Frontotemporal Lobar DiseaseDementia

In 2010, I was diagnosed with one of the variants of FTD (PSP) in part because I came into the neurology department after a very serious fall coming out of a UNC stadium (fortunately, 100 feet from the UNC Hospital Emergency Room).  Later as my gait stabilized, it became clear that the diagnosis of behavioral variant FTD would be a better one for me as the behavioral and decision making symptoms of FTD had occurred (initially, in the years before diagnosis after the fall).

I do have some significant issues with my short term memory, especially of verbal materials (I remember faces but not names), but these are not my primary symptom as memory loss would be if I had young onset Alzheimer’s disease rather than young onset FTD. I have about 500 posts on this blogging specifying what mind mapping (or my more sophisticated variant, mind modeling) does for me. I usually talk about how it helps my decision making and learning of new things, but the natural tendency is to speak of mind mapping as a memory maintenance and enhancement method, which of course it also is. Mind mapping is also extremely useful for understanding patterns of your own behavior and focus on positive reactions to others rather than negative ones.

Here are some of the disorders that make up Frontotemporal Dementia (Disease). All involve a loss of decision making, planning, and judgment (Executive Function). For some the initial symptoms are a personality change while others start by having language problems understanding or producing language. Eventually most people with FTD (FTLD) have all three sets of symptoms. The other diseases (PSP, CBD, FTD with Parkinsonism, FTD with ALS) have initial symptoms of motor-mobility difficulties followed later by the behavioral and language problems.

Mind mapping may be so effective for use with dementia (and specifically FTD) because it is a good way to plan and make decisions, and promote judgment. It forces you to make associations between words and pictures which helps both in producing words and understanding information provided as a mind map better than a written document or verbal instructions.

And it is fun and feels artistic.

A mind model explaining some of these connections is shown below. As a reminder, I only contend that this method works for me. It may or may not work for you and should you choose to try this you should remember that I am only discussing my own observations of me.

Please click on the image to expand it.

Types of Frontotemporal DiseaseDementia and Artistic Mind Modeling as Cognitive-Behavioral Assistance

 

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In 2010 I was diagnosed with neurodegenerative brain disease with the initial diagnosis being supranuclear palsy which was later amended to the highly related frontotemporal dementia, behavioral type. Some believe that PSP and FTD are variants of the same disease.

I started to examine Mac and iPhone/iPad apps that might be useful early in 2010. After I retired in 2011 I started to use a number of the apps for such things as calendars, task lists, alarms, reminders, and other business-like functions. The business-like apps failed to motivate me to use them continuously nor could they address executive functioning problems that were at the core of my disease. As early as late 2011 I had concluded that mind maps and other visual thinking methods could be very helpful.

As I read about every mind map book around by dozens of authors and bloggers, including the majority of those written by Tony Buzan who makes the claim he is the “inventor” of mind mapping (it is a silly claim no matter who makes it), I rapidly discovered that virtually all visual thinking work focuses on lucrative management consulting that few who use it have strong background in substantive areas like medicine, healthcare, psychology, and related disciplines. What little work exists in mind mapping and other visual techniques within the health and medicine areas indicates a total lack of understanding of visual thinking and is generally painful to read.

I wasn’t scared off by the fact that there was no clear guide to what a person with cognitive impairment and later dementia could do with visual thinking procedures and computer apps to try to improve the ability to cope with dementia. I had, after all, spent 35 years of a successful career as a (nonclinical) psychologist and much of my career had focused on developing new applications of psychological knowledge to addressing medical, psychological and social disorders. And much of the 35 years were spent studying the service care system for those who were least connected with society and traditional healthcare.

I am writing a series of posts (currently more than a dozen) evaluating my experiences during the last six years with a progressive brain disease. Each will focus on a specific test of methods and outcomes I think were achieved.

My studies are one-subject research (often called N=1). I will present results that I believe can be inferred from specific indicators. However, what I discuss is DERIVED FROM MY EXPERIENCE AND MY INTERPRETATIONS OF THE OUTCOMES OF WHAT I DID. I do not claim that any of what I write about is applicable to all people or that what I did should be considered to prove anything as opposed to simply observing it in myself validly or not. And, I see no evidence that the outcomes from what I did have done suggest I found anything to treat or cure or slow the progression of dementia: I never expected them to do so. What I do believe that I have demonstrated for myself is that these methods have helped me maintain a much higher quality of life. Not more days in my life, but many more good days while having dementia. I feel blessed to have received those extra good days.

Most of my “writing” is in pictures. That’s the point of visual thinking.

The following mind map is a general introduction to my work over the past six years. I call it Part 00. Starting with Part 01, I am going to start to present both observations and objective indicators of what happened for me.


Should you not be familiar with how a mind map is drawn and read, please search this website for posts on mind mapping using the search box. Or, go to the home page by clicking here and look at the list of pre-defined searches.

A very simple set of rules for reading a mind map is as follows.

  1. Start at the center of the diagram. Each of the topics (ideas or major branches) that come out of the center represents an issue. Important information about the main issues is given as a series of branches. The organization is in an outline or tree where large branches divide into smaller branches and smaller branches divide into even smaller branches.
  2. Think of the map as a clock face and start at the 1 o’clock position (upper right corner). Read outward from the center along the branches and sub-branches to see how ideas and information about the topics can be arranged in a hierarchical or tree structure. [If you could go up a huge fire truck ladder and look straight down, you would see a structure of tree branches that looks like a mind map. When we study or read a mind map, we are looking at a whole tree — set of information — and then seeing how small and more specific information spreads from the trunk.]
  3. Go around the map in a counter-clockwise manner (to 2 o’clock, 3 o’clock, etc.), following the branches down to their branches and their branches and finally to twigs. Remember that we are looking down at a whole idea [or tree] and its branches and their branches in order to understand how the information represented on these branches goes together and what the most important information is.
  4. The mind map is thus a picture of major ideas followed by its major subdivisions or branches and sub-branches. The “big ideas” are attached directly to the central issue.
  5. A mind map is a way of showing in an image how a set of data pieces or ideas go together.
  6. The pictures, color coding, and fonts are used to designate what is the most important information in the mind map. When you are trying to remember or organize or determine priorities, the pictures, color coding, and size of the fonts can help you store information in “visual” parts of the brain and then retrieve it by thinking about pictures, the color coding, or size-importance of the information.

Click on the mind map below to expand it and let’s start the process of understanding of what visual thinking methods help me to do.

I have frontotemporal dementia. Over years I have not responded well or appropriately when receiving gifts.

So I thought it would be a good idea to put together a mind model of things you might want to consider when purchasing a holiday or birthday gift for a loved one living with dementia.

Here are three mind models (mind maps) on the gift giving process when the recipient is living with dementia or cognitive impairment.

For each of the images, click on it to expand.

The first diagram shows a set of practical considerations you should think about when selecting a gift.

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The second diagram is a list of possible gifts that might also help both the person with dementia and the caregiver. Most of these suggestions are relatively inexpensive.

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The third diagram shows the primary consideration in gift giving for persons with dementia.

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Each of these mind models is derived from my own experience as well as my training in psychology. The models are merely ones that apply to myself and may not fit your situation. Hopefully, though, even if the models do not fit your loved one, these mind maps will get you thinking that a somewhat different approach to gift giving might be appropriate at this time.

My suggestions are focused toward gifts that might help the person with dementia and the caregiver deal with some of the symptoms of the disease.

Do realize that with certain types of dementia, there is a significant possibility that the person with dementia will not respond well to the gift. In that case suggest that you can return it, but don’t rush to do so as the longer reaction after a couple of days may be very favorable.

Happy Holidays and special occasions to all.

 

Part 1 of this series can be accessed in a new window by clicking here. Frontotemporal Dementia — often associated with young onset as compared to Alzheimer’s disease and its late onset — has been shown to a potential relationship to artistic creativity among those who have the neurodegenerative condition.

I see my own work on this blog as an attempt to combine artistic impulses with information to potentially help myself and others with dementia.

Click on the image to expand it.

The  Long  Hawaiian  Shirt  Journey

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Clip art used under license.

 

 

Nomenclature: FTD is an acronym for Frontotemporal Dementia, the most common form of young onset (before age 65) dementia.

Mind modeling is an advanced form of mind mapping.

Part 2 of this series can be opened in a new window  by clicking here.

If I had to use one newspaper article of general interest to describe my fascination with mind mapping while I have frontotemporal dementia, I would select one that appeared in the New York Times in 2008. Interestingly the article appeared while I was in the beginning or middle stages of FTD but before diagnosis.

You can open that article in a new window by clicking the image below.

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Here is another article that recently appeared in the Wall Street Journal. I literally just read this article for the first time this morning while doing final editing of this post. I say that this was funny to me because I have started wearing old Hawaiian shirts from vacations to the islands of Hawaii I made in the 1990s and 2000s. [There is a reference in this article by EJ Sternberg MD to a man who with FTD who wore Hawaiian shirts every day.] I do note that I wash the shirts after wearing them one time and that it is in the 90s all summer in North Carolina. Click the image to open the article and learn about Hawaiian shirts, art, and frontotemporal dementia.

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There are a number of similar articles on the Internet.

While I have only rarely (as an example of what you could do) set out to create a mind map that was “Art” (with a capital A), I think many of my thousands of mind maps in this blog can be viewed (as incredibly boring and elementary or interesting and mind capturing) “art” (with a lower case a).

I create mind maps as a way to organize thoughts, manage my life, communicate with others, and document the course of my neurodegenerative condition and methods of coping with it. As art, not really, but I greatly enjoy merging colors and shapes and especially fonts with information and VISUAL THINKING. But over five years, I have gotten pretty good (at least in my estimation) in applying the colors and designs and elements of paintings into my computer-assisted mind maps. As my conception of a traditional Buzan-style mind map has evolved significantly, I have also entered another plane of combining information with elements of art to express my conclusions better and worked out a theory of mind modeling that expanded the concept of the mind map. This blog has more than 750 posts and several thousand mind models/maps ALL created since I have had diagnosed with FTLD (formerly as the PSP variant and then as FTD).

You can access my concept of the MIND MODEL by clicking the link. More important for an INDEX of my mind model theoretical writings, click this second link The results open in a new window.

Based on my experience — and my experience ONLY — I wonder if my use of organic mind models (AKA mind maps) with professional experience, observations, data, and my conclusions show how artistic impulses can be combined with mind models as a communication method during various stages of FTD.

Below are some examples of my recent mind models (AKA mind maps). Art is in the eye of the beholder and I hope you have a benevolent eye. Clicking on any of the images will expand its size.

The process of my mind models is described throughout this blog. In simple summary, it takes me 1-2 hours to create one of these mind models (now). When I walk away from the computer I often forget what map I am working on and an hour of two after posting it on my blog I have no idea what my most recent posts were and I have to go to the web site and look at the index. However, when I open a post and look at the map for even a minute or two, I can immediately recover my logic for creating it.

Yeah, it baffles me too even after 35 years of practice as a psychologist doing research on altered states of consciousness (drug abuse and its treatment), imagery and daydreaming, elder abuse and dementia, aging and nursing models, mental illness, neuropsychological testing, and evaluating healthcare and social care.

During this same period of neurodegenerative disease I have become a rudimentary sketch noter, doodler, and sketcher who spends several hours a day “playing” with pens and pencils and more recently watercolor inks and an assortment of typing papers and artist sketch pads. Am I any good at that stuff. NO. But, it does help organize my life and plan and remember. Most importantly, it makes me feel calmer and happy.

Click on the images to expand them.

What Does Living Well with Dementia Mean

Trust Findings from [Peer-Reviewed] Health Professional Meetings I Can Sell You Idaho or California.

Mind Model vs Organic-Style Mind Map

Persons with Dementia and Family Caregivers Partnership and Reciprocal Relationship

Adult Coloring Books & Imaginative Drawing & Doodling & MindModeling & Aging

To Live Well with Dementia You Need to Commit to Being a Life-Long Learner

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And I typically make between 10-50 like doodles like the following examples daily, often while watching TV or sitting in my bright kitchen looking out the window. It helps soothe the savage beast! And, I am especially obsessed with color shades.

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This post is about the hardest part of dementia for me to deal with. I present my ideas as a mind model (a simpler version of mind model is the mind map). Mind models (and maps) help me greatly in dealing with various parts of the dementia complex.

I have a type of dementia for which severe memory dysfunction does not appear until late in the course of the underlying frontotemporal lobar degeneration (FTLD). The earlier symptoms are personality change and decline in executive function.

By far, from my experience, the defining part of my neurocognitive disorder (dementia) is the experience of disrupted executive functioning. I often cannot decide what to wear, whether I want to go to a group dinner or not, what color ink to put in my fountain pens, how to efficiently schedule my time, how to prioritize what is most important, and other related tasks. I often cannot definitely evaluate information for its validity, importance, and veracity. This is especially true on new day-to-day tasks rather than professional information which I largely accumulated much earlier life.

Most of the highly developed skills I have great difficulty with are ones that tend to be associated with the behaviors and cognitions that allowed me to run a company, make professional decisions, develop long-term strategic plans, evaluate people and programs, and function creatively.

Not being able to at least perform executive functions at least moderately well can drive me nuts as performing them superbly was a huge part of my professional identity. Given that there is no current way of healing the brain and restoring these functions to their original level of effectiveness, the only alternative way to cope with these is to use alternate methods to make decisions, plan, evaluate, analyze.

I can deal with the fact that I may not remember your name temporarily if you are a family member and permanently if I met you yesterday. A good coping strategy is to simply ask the person their name. Another is to have information stored in various forms (pictures, lists, concert tickets, mind maps) so that you can recall information.

Executive functioning is a different matter. There are no established assistive methods for helping deal with the partial loss of executive function. So I have been experimenting and discussions of the results have become more than 400 of the 650 posts in this blog since 2012. So far as I know, my work is the only systematic attempt to supplement damaged executive functioning with alternate methods of manipulating information.

Here is a mind model (AKA mind map) about how a damaged set of executive functions makes me feel and some strategies — discussed in MUCH more detail elsewhere in this blog — that help ME. I feel a lot better when I use the tools I suggest and I believe I think much better too. Were it not for these alternate methods this blog would not have been possible nor many of my other projects.

I will however still face the “what to wear” and “which ink to put in my fountain pen” decisions tomorrow morning. But even partial control makes me feel calmer, more in tune, more my former self, and more productive.

I cannot guarantee that any methods I use will work for you or the person for whom you may give care. Many empirical studies are needed to test efficacy for large groups of people. I do believe they work for me, and I know that they are inexpensive. These tools are not treatment (your brain is not going to change) but rather potential assistive devices like a cane or handrails in the bathtub or a dog for emotional support. Trying some of what I do may be a good suggestion for you. I do not know if the methods will work but I do know that the methods are in most cases very inexpensive often requiring just a pencil or pen and some paper (the eco-aware can use the backs of enveloped).

A mind model of what is hardest for me to deal with in dementia and how I try. Please click on the image to expand it.

THE MOST DIFFICULT PART OF DEMENTIA FOR ME

 

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You have been diagnosed with a brain condition. Re-learn how to think. Learn new information and how to use mental tools. Learn how to relax and feel more calm.

You have been learning all of your life. Recommit to continue learning, even if it is hard. The benefits can be great. Even if you only have a few more good days with your family or feel better about yourself part of the time, that may still be a very big gain in quality of life for you.

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Click the mind map image to expand it.

To Live Well  with Dementia  You Need to Commit to  Being a  Life-Long Learner

Note 1: All of my posts in this blog and my graphics were prepared after I was diagnosed with a neurodegenerative condition in 2010. My most recent diagnosis was frontotemporal dementia.

Note 2: I do not endorse any of the commercial brain training computer programs, nor do I use any of these myself. All techniques suggested in the mind map above can be used with a piece of paper and a writing implement. I do suggest that you may want to use a general purpose computer program for mind mapping and/or sketching on a computer (I do) and also note that basic programs can be obtained for free or at a very low cost if you just want to try the methods. Even the most expensive of the relevant programs have free trial periods of various lengths.

 

 

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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.

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I studied the Diagnostic and Statistical Manual, Version 5 (or DSM 5) of the American Psychiatric Association over the past week.

I have concluded that the terminology developed by the psychiatrists is superior to that traditionally used to describe different types of dementia in the medical literature and the International Classification of Diseases, now Version 10 (or ICD-10).

There is a direct correspondence between DSM-5 and ICD-10 (or the earlier Version 9) diagnoses so nobody is really being reclassified because of the newer DSM-5 terminology. BUT, the terminology is MUCH clearer and I think it will be much more useful for the general public, people with dementia, and other non-physicians to think about the conditions that cause dementia such as Alzheimer’s Disease, Lewy Body Dementia, Frontotemporal Lobar Degeneration (Dementia), Huntington’s Disease and many others in this framework which makes much clearer the relationship of the many diagnoses made of brain diseases and conditions.

The explanations available to non-physicians are much simpler using the DSM-5 terminology and the psychiatrists have done a better job of formulating neurocognitive disorder (major and minor) in their diagnostic model than the standard way of doing so. It is, of course, extremely important that psychiatrists and neurologists develop improved terminologies for brain diseases and conditions so as to guide public awareness, research, and communication.

Many more posts about this in the next few weeks. I personally believe that adopting the nomenclature of the psychiatrists will do much to decrease the confusion that can be caused by reading the information provided in books and on websites.

Labelling the neurocognitive diseases in the way that the psychiatrists have goes a long way to making the conditions understandable by those who have them, their caregivers, and decision makers who approve treatment and research funds.

More unfolding, much of it in the form of mind maps and other graphics. Stay tuned.

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So you’re in your fifties. One day the doctor diagnoses the cause of your crummy mood, personality changes, increasing social isolation, difficulty making decisions, memory loss, anger, or increasing financial instability as frontotemporal dementia (frontotemporal lobar degeneration), Lewy Body dementia, early Alzheimer’s disease, multiple system atrophy, ALS, corticobasal degeneration, progressive supranuclear palsy, Huntington’s disease, Parkinson’s disease, Parkinsonism, or some combination of the preceding.

Heck you have barely even heard of most of these. Pretty much you can say that in any of these conditions various parts of your brain are failing leading to the condition that more fear far more than any other medical condition, the Big D, for DEMENTIA.

You get some commonsense (and old wives’ tale) advice from friends, neighbors, newspaper columnists, the MD and PhD who work for Oprah, Oprah, a bunch of web sites, and probably at least some of your doctors — start doing crossword puzzles and practice arithmetic.

OK. Darn, I have always hated crossword puzzles as a waste of good time better used watching ESPN. I prefer matrix algebra and calculus to arithmetic problems, although I do like to watch how the cooks measure foodstuffs on Chopped using such honored traditional techniques such as “pinches,” “handfuls,” “looks like a pound,” “feels like a quart,” and other examples of the special mathematics of the kitchen including the definitive one of ratios so you can scale your cupcake recipe from one to 37 which are most often correctly applied on baking shows.

So you have what my own senior neurological consultant referred to as a “terrible, terrible disease” of the brain. Do you pull out your iPad and scramble to complete innumerable arithmetic games and crossword puzzles?

Hell no. You congratulate yourself that you have learned those useful and continuing visual thinking skills and tools and used them for the past 40 years to enhance your life and career and education and now you open up the desk drawer where you store your mind maps, concept maps, sketchnotes, photographs, and charts.

Get with the program. Perfect this skill.

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Want to learn more about my experiences with cognitive impairment and dementia and attempts to fight back using visual thinking methods and mind mapping to understand and communicate the problems and solutions?

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me and we will figure out a way to get the information to you some alternate ways.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of productivity and self sufficiency.

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It’s been five years since I was diagnosed with neurodegenerative disease (Parkinsonism; differential diagnosis between PSP and FTD; currently it looks like I have features of both these frontotemporal lobar degeneration syndromes which occur in virtually identical areas in the frontal and temporal lobes of the brain).

In those five years, I have adopted Buzan organic mind mapping as the primary way that I think, evaluate, communicate professionally, and set up even recovery “databases” so I can remember better both events and knowledge from my earlier career and things that happened earlier today. When I am not in front of a computer, tablet, or smart phone running ThinkBuzan’s iMindMap computer implementation of Buzan’s work, I am often using a small pocket paper notebook and a fountain pen to capture my thoughts and feelings and to then organize them.

So how does this make me feel? Look at this mind map to see my experience. Click on the map to expand its size.

I Feel Better  When I Mind Map

Organic mind mapping has been an integral part of my life since 2011.

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The focus of the blog is on the issues shown below. If you click on the image, it will expand.

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Click Links Below for Selected Posts

Dementia

Healthcare

Healthcare Reform

Mind Maps/Mapping/Models

Huba’s Integrated Theory of Mind Modeling/Mapping

Writing in Mind Map

Case Management

Self Care

Caregiving

Mental Health

Visual Thinking

Computer Program Reviews

Frontotemporal Dementia

Alzheimer’s Disease

Cognitive Decline

“Normal” (Typical) Aging

HIV/AIDS

Big Data

Statistics

Politics

Personal Story (g j huba phd)

Universal Human Rights

Stories from a Lifetime

Hopes and Wishes

Personal Favorites

Hubaisms Blog – WHY?

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NOTE: Version 11 OF iMindMap was released the first week of May 2018. At this time (7-1-18) I have been using the program for about two months. I will have a full review posted within a week or two. As a brief note, Version 11 includes a number of enhancements. The program remains the best one for mind mapping and the updates made from Version 10 to 11 are significant and worth the upgrade price.

I doubt that there are many people expert in mind mapping who would disagree with me that iMindMap is the most feature-laden of the more than 100 programs for mind mapping to be found all over the Internet.

Once a year — as promised when the program was first introduced — iMindMap has a new release that provides many new features and usability enhancements. And unlike others, they produce a great upgrade every year on time. And free from most bugs that live in Cupertino and Redmond.

How good is iMindMap 10?

Click on the mind map (actually mind model in my terminology) below to expand its size. For those of you with no patience or dramatic sense of the big build-up, you can skip directly to the “9” branch. iMindMap is the 8,000-pound gorilla.

As a note, my review was conducted about six weeks after receiving the program and using it exclusively rather than earlier editions. I use a Mac only, and my review was conducted on a 2013 MacBook Pro. I have worked with the program both on an internal 15″ retina MacBook screen and a 27″ external monitor. [I actually like using the MacBook screen rather than the larger desktop monitor.]

imindmap-10-review

Chris Griffiths and his team at OpenGenius have taken the work of Tony Buzan and in the process of developing a program expanded and formalized that conception in a creative way that is brilliant in its overall utility and ease of use. iMindMap 10 is my favorite mind mapping program, but most importantly my favorite and most useful thinking tool. For those of you who do not follow my blog in general, I live with Frontotemporal Dementia and iMindMap has served as a “brain assistance tool” for me since 2010 in daily living and in continuing my professional interests in a creative way. I can accurately say that the various versions of this program “changed my life.”

This is a tool formulated by expensive consultants who want to help corporations make more money while at the same profiting from that help. But the tool has come to greatly exceed the original vision and is intuitive to use and most adults and all children can learn to use the program for free using Internet trainings. Don’t be scared off by all of the publicity about a $3500 training and a certificate signed by a consulting firm (not an accredited educational institution). You do not need a course to learn this program and it is not clear to me that expensive courses help you learn to apply this program in the real world. If you are willing to invest a few hours you can be doing adequate mind maps; if you invest 10-20 hours you can be doing accomplished mind maps.

Get over the hype and realize that you CAN learn this program quickly on your own and even more rapidly if you study examples available without cost at many blogs including this one (Hubaisms.com), a depository of many thousands of mind maps at Biggerplate.com, and many other sites including youtube.com where many training sessions are presented.

While there are four “views” in this program, the primary mind mapping module is the reason for using this program. The other three views are largely alternate ways of looking at the same information and data. While they may be “quicker” ways to collect information together from a lecture or library research, at the end they feed their data into the mind mapping module where the actual thinking work, theory building, model development, and communication is done.

I have a few criticisms of the program, but these criticisms do NOT change my overall rating of the program as A+.

  1. The time map module is really just a Gantt chart of interest to but a few mid-level corporate managers and high level executives who have not yet adopted better ways of team management. As a Gantt chart the module is fine, albeit about the same as most existing software in that area. Unless you are like a friend of mine who manages 10-year projects to send landers to Mars with 10,00 team members, I cannot imagine why you would want to use a Gantt chart.
  2. In my view and that of many other potential users, a “time map” is actually a timeline that incorporates mind map features. While others have tackled this issue (most notably Philippe Packu and Hans Buskes), my formulation was the original. The resulting blog post (click here for a new window) has been the most read one about mind mapping methods on my blog site for FOUR years. I’d urge the iMindMap developers to look at my model of time maps which requires a lot of custom work that I am sure they could easily automate.
  3. For almost all mind map users, the future is using pre-made templates designed by content experts. Purchase a template package and then you can then create your own mind maps by adding your information to the pre-designed expert map for your area whether it be healthcare or project management or writing a term paper or designing a research project or selecting the right clothes for a 5 day business trip. At this time iMindMap does not yet have a way of protecting the intellectual property of template developers which provides little incentive for developing templates as a business and therefore stunts the growth of the mind mapping community.
  4. For this program and all of its competitors, the icon and image libraries are never big enough. On the other hand, you can purchase separate icon and image sets from third-party packagers on the Internet if you have special image needs. iMindMap allows you to use such external pictorial elements extremely easily. My favorite new feature is that you can add icons to their library and size the icons in a custom way. iMindMap’s included images should more fully capture the fact that users of mind maps and their audiences are much more diverse in terms of ethnicity, race, gender, gender-orientation, education, and age than the included image libraries. And hey OpenGenius folks, how about some icons for numbers in colors besides orange and lime so that the color schemes of my mind maps are not destroyed if I number ideas.
  5. More free online trainings would be desirable, and most importantly trainings that do not run at the speed of a bullet train. Two minute presentations that cover 20 minutes of material are somewhat counter-productive. The current videos run too fast for new users and at time for even the most experienced users.
  6. My experience — admittedly infrequent — is that Technical Support is fairly “rigid” in that there are lots of forms to fill out before you get a real chat session going and too many requests to send them esoteric files on your computer. All in all, as technical support goes, while everybody is trying quite hard to be helpful, they ask you to conform more to what is convenient for them than what a confused user can deal with. When I want help or to make a suggestion or make a request for a new feature or default, I want to just compose a short email so OpenGenius can get the right person there in contact with me. I most definitely do not want to complete an overly complicated form. Too much technocracy in that process.
  7. Besides the books of Buzan which are not all that useful for learning the program or how to do real visual thinking in real world applications other than rudimentary management, OpenGenius needs to develop some easier access, very practical books that act as “manuals” and present information in more comprehensive ways than is done now. Old fashioned manuals that are (or can be) printed have a lot of appeal to many.

In summary, this is an amazing program that is much more than a program for mind mapping. It is unsurpassed among mind mapping programs. Additionally it is what I call a “visual thinking environment” or VITHEN. My “criticisms” are minor and do not in anyway diminish my overall evaluation of the quality of the program.

My blog at Hubaisms.com on which you are reading this review was designed and “written” largely in “iMindMap.” Most of the mind maps I use to guide my own “complicated” life were developed in iMindMap.

Exemplary job folks at OpenGenius. Version 10 is an additional large step in the evolution of the program and mind modeling.

If you do not use visual methods to enhance your memory and powers of decision making and ability to prioritize and methods of communication you are a fool.

How do I know this? Do I look like a fool to you? Have you seen all of the visual stuff on this blog site?

DGS_Monsters-13

Do You Have Visual ...

I have started to add this logo to many of my posts.

2015-04-07_11-33-24

Here is what it means.

In 2010 I was diagnosed with a very rare neurodegenerative disease that also includes dementia. I have a mixture of symptoms of Progressive Supranuclear Palsy and Frontotemporal Dementia (many neurologists do not think that these are separate brain diseases). The dementia has features that are different from those of Alzheimer’s Disease in that general memory loss is not as much of an issue in PSP/FTD at the early stages but loss of executive functioning, personality change, social isolation, and other cognitive-personality-motor are more pronounced at the early stages (like all brain diseases, eventually all of the brain functions are severely affected, although the order of appearance of severe impairment in different brain functions differs among diseases).

Given that most of the diseases that cause dementia have no cures or even a pharmaceutical means to slow the rate of disease progression (including mine), I concluded that I should use what I had learned in the 37 years since receiving my doctoral degree in psychology to try to employ behavioral-cognitive tools as a way of assisting me in dealing with the stages of disease and dementia. I tried 100s, if not a thousand, apps on my iPhone, iPad, and Mac to list to-do items (tasks), calendar, ring alarms when I should swallow pills, recall the names of long term friends and their children, remember what I had for lunch, and run a continuing social life in a university town with great restaurants and concerts and theater.

Forget the traditional To-Do Apps and Fancy Calendars and Alarms Apps going off in tandem on my Mac, iPhone, and iPad. Forget what people (especially developers) call “dementia assistance” apps.

For me, the one thing that worked was Buzan-style organic mind mapping which in its more general form is really a method of using visual objects (pictures, drawings, tree-like diagrams) to shift to critical visual thinking to retrain the brain to use techniques and areas of the frontotemporal lobe that are relatively unaffected by the brain disease.

I think mind mapping worked very well for me. It did not cure my brain disease (how could a technique of drawing pictures to enable better thinking change the anatomy of nerves and neurotransmitters?). I don’t think it slowed down the progression of my disease (again, how could a cognitive procedure affect how fast nerve cells become dysfunctional and die?). But I do know the mind mapping greatly improved my quality of life because it allowed me to think better, create more than 300 blog posts since 2011, obtain more than 95,000 followers on Twitter, 350 friends on Facebook, more than 2,000 connections to other professionals on LinkedIn, have 750 individuals following my PinInterest boards, and hundreds of re-Scoops from my Scoop.it boards on neurology, mind mapping, and my quirky sense of humor. Oh, and I also WROTE a book about the the mind mapping techniques and how I used them and why I think these worked FOR ME.

If you want to see about all of my work, ideas, experiments on myself, and conclusions about the efficacy of mind mapping in increasing my own quality of life during stages of increasing cognitive impairment and dementia, LOOK TO YOUR LEFT and click on one of the “book cover buttons” to order the ebook on the iBookstore (for Apple hardware) or the Amazon Kindle Store (for non-Apple hardware supported by a Kindle app). Read the book and you will know the why and how in a very integrated way that transcends this blog. After seeing the hundreds of images, you will also understand why this book could not be published in a paper format and why the materials all need to be presented together.

More importantly than any of the professional achievements that are more quantifiable mentioned above, I think that mind mapping helped me feel far less anxiety because I could still understand information at the level I had been trained, sparked my creativity, help me behave better in social situations by planning them in advance, and enhanced my ability to function in family and larger social networks. It is the positive effect of being able to better interact with my family for which I am the most grateful.

Here’s a few more thoughts in a mind map. Click it to expand the map. I am very glad I used mind mapping in the five years I have been coping with cognitive impairment and dementia. I did and still do enjoy a very high quality of a life I greatly enjoy.

Every Day I Use Mind Maps to ...

Oh, and one final note … You only get the full benefits of these techniques if you use Buzan-style organic mind maps. Those “maps” you have seen with thin lines, little color or curvature, and a half sentence on each branch, are not the “real deal” and do not produce the same good results as do the Buzan style organic mind mps.

I have started to add this logo to many of my posts.

2015-04-07_11-33-24

Here is what it means.

In 2010 I was diagnosed with a very rare neurodegenerative disease that also includes dementia. I have a mixture of symptoms of Progressive Supranuclear Palsy and Frontotemporal Dementia (many neurologists do not think that these are separate brain diseases). The dementia has features that are different from those of Alzheimer’s Disease in that general memory loss is not as much of an issue in PSP/FTD at the early stages but loss of executive functioning, personality change, social isolation, and other cognitive-personality-motor symptoms are more pronounced at the early stages (like all brain diseases, eventually all of the brain functions are severely affected, although the order of appearance of severe impairment in different brain functions differs among dementia-syndrome diseases). Over the years, my symptoms have shifted and now the working diagnosis is FTD with Parkinsonism or FTLD.

Given that most of the diseases that cause dementia have no cures or even a pharmaceutical means to slow the rate of disease progression (including mine), I concluded that I should use what I had learned in the 37 years since receiving my doctoral degree in psychology to try to employ behavioral-cognitive tools as a way of assisting me in dealing with the stages of disease and dementia. I tried 100s, if not a thousand, apps on my iPhone, iPad, and Mac to list to-do items (tasks), calendar, ring alarms when I should swallow pills, recall the names of long term friends and their children, remember what I had for lunch, and run a continuing social life in a university town with great restaurants and concerts and theater.

Forget the traditional To-Do Apps and Fancy Calendars and Alarms Apps going off in tandem on my Mac, iPhone, and iPad. Forget what people (especially developers) call “dementia assistance” apps.

For me, the one thing that worked was Buzan-style organic mind mapping which in its more general form is really a method of using visual objects (pictures, drawings, tree-like diagrams) to shift to critical visual thinking to retrain the brain to use techniques and areas of the frontotemporal lobe that are relatively unaffected by the brain disease.

I think mind mapping worked very well for me. It did not cure my brain disease (how could a technique of drawing pictures to enable better thinking change the anatomy of nerves and neurotransmitters?). I don’t think it slowed down the progression of my disease (again, how could a cognitive procedure affect how fast nerve cells become dysfunctional and die?). But I do know the mind mapping greatly improved my quality of life because it allowed me to think better, create more than 300 blog posts since 2011, obtain more than 85,000 followers (now up to 100,000 followers 8 months after writing this originally in April 2015) on Twitter, 350 friends on Facebook, more than 1,500 connections to other professionals on LinkedIn, have 750 individuals following my PinInterest boards, and hundreds of re-Scoops from my Scoop.it boards on neurology, mind mapping, and my quirky sense of humor. Oh, and I also WROTE a book about the the mind mapping techniques and how I used them and why I think these worked FOR ME.

I like to think of myself as a working, ongoing experiment in maximizing the value of neuroplasticity.

If you want to see about all of my work, ideas, experiments on myself, and conclusions about the efficacy of mind mapping in increasing my own quality of life during stages of increasing cognitive impairment and dementia, LOOK TO YOUR LEFT and click on one of the “book cover buttons” to order the ebook on the iBookstore (for Apple hardware) or the Amazon Kindle Store (for non-Apple hardware supported by a Kindle app). Read the book and you will know the why and how in a very integrated way that transcends this blog. After seeing the hundreds of images, you will also understand why this book could not be published in a paper format and why the materials all need to be presented together.

Ongoing work is posted on this blog and the work has gotten increasingly more complex in the past 12 months.

More importantly than any of the professional achievements that are more quantifiable mentioned above, I think that mind mapping helped me feel far less anxiety because I could still understand information at the level I had been trained, sparked my creativity, help me behave better in social situations by planning them in advance, and enhanced my ability to function in family and larger social networks. It is the positive effect of being able to better interact with my family for which I am the most grateful.

Here’s a few more thoughts in a mind map. Click it to expand the map. I am very glad I used mind mapping in the five years I have been coping with cognitive impairment and dementia. I did and still do enjoy a very high quality of a life I greatly enjoy.

Click on the image to expand it.

Every Day I Use Mind Maps to ...

Oh, and one final note … You only get the full benefits of these techniques if you use Buzan-style organic mind maps. Those “maps” you have seen with thin lines, little color or curvature, and a half sentence on each branch, are not the “real deal” and do not produce the same good results as do the Buzan style organic mind mps.

I’ve been writing a lot recently about rare and orphan diseases, especially those that are associated with dementia (which is NOT synonymous with Alzheimer’s disease). Dementia is (obviously) a huge untreatable condition with a huge impact on the healthcare system, both for those with dementia and their caregivers, and those who provide and fund care.

I looked at YouTube today to see how much video information was on the Internet about conditions — Corticobasal Dementia CBD; Frontotemporal Dementia/Degeneration FTD; Progressive Supranuclear Palsy PSP. These are very rare diseases both in the USA and world wide. There are no treatments for any of these conditions although pharmaceuticals are sometimes used off-label to attempt to control symptoms and various behavioral assistance (physical therapy, occupational therapy, speech therapy, case management, support groups, caregiver education and supports) is often offered to improve the quality of life of patients and caregivers.

Most physicians in non-neurological specialties have not studied these conditions nor know much about them.

For the three conditions I examined there were dozens if not hundreds of videos of clinical symposia, caregiver observations, patient interviews and observations, and timelines of the disease progression of individuals and especially a few celebrities.

Especially with rare diseases, where there is not a lot of information in the media for the public to consult, videos on YouTube can make a great contribution to patient-caregiver-professional education and an improvement through education of the quality of life for patients and their caregivers.

What is NOT on YouTube?

I see no assessments of the quality (validity, reliability, applicability) of the videos.

Why not have some professionals look at the videos, and rate them for accuracy. Really. And then create a video.

There is some awesome information currently on YouTube about rare and orphan diseases. There are also huge holes in the aggregate collection of videos in that many important topics are not discussed. And some of the videos are just plain not reflective of current medical standards or state-of-the-art knowledge.

I’d urge professional groups and #YouTube to look at getting a rating system for these videos of all diseases-conditions, and especially the rare and orphan diseases. There are huge benefits of this information but also some errors that need to be fixed so that patients and caregivers in search of a cure where there is none available at this time are not misled.

#YouTube is a huge resource to individuals and their caregivers who must deal with rare and orphan diseases without effective treatments. Hopefully, the videos will be used to educate and support, but incorrect information may unrealistically raise the hopes of patients and caregivers that these diseases can be treated with unapproved medical treatment or ineffective alternative approaches. Or, videos of late stage sufferers from a disease can be extremely scary to patients and caregivers and not permit them to focus on maximizing the quality of the left before the late stages of a disease.

Let’s get some professional video comments from established experts who CAN talk to REAL folks in a way they can understand up on YouTube. Great information should be widely disseminated; incorrect or damaging information should not be allowed to be presented under “freedom of speech” laws without professional comment about probable inaccuracies.

Correct and supportive and understandable videos would go a long way to help patients for whom there are not established and efficacious treatments have the best possible quality of life.

Now that would be a huge contribution. Heck, I’d even give Google a tax deduction (and you will never hear me mention such a suggestion in any other context) for getting accurate and REVIEWED video content on rare and orphan diseases available to all in a number of different languages.

Click on the images to expand.

How YouTube Can Be Even More  Helpful to Those Impacted  by Rare and Orphan Diseases

psp_youtube cbd_youtube ftd_youtube

As I age (and have time during my retirement), I have been reading a lot about the neurodegenerative diseases (Alzheimer’s, Parkinson’s Lewy Body Dementia, FTLD) and upcoming crises in the healthcare system as people live longer and are more likely to experience one of these conditions. At the same time, I have reading about the absolutely brilliant work being done in neuroscience and medicine (neurology) on the functions of the brain. I am totally in awe at the quality of the science going into brain research.

As a consequence, I am starting this page of citations to publish bibliographies of basic science articles that provide possible mechanisms for studying the efficacy of mind mapping and other visual information techniques in neurodegenerative conditions (Alzheimer’s, Parkinson’s, Lewy Body Dementia, Frontotemporal Dementia or FTD or FTLD, CBD, PSP, and other conditions).

Searches of medical databases tend to produce a highly technical bibliography. NONE of the articles proves a neurogenesis mechanism is stimulated by mind mapping or even that one exists. NONE of these articles proves that mind mapping is effective. What the articles do is to present a selected bibliography of research into brain plasticity and neurodegenerative conditions. Science is all about reviewing prior work (original research, summaries, meta-analyses, theory) and seeing where we go next. Translational research is about taking the results of basic research and developing better treatments, diagnosis methods, and care management.

My own belief is that after degeneration the brain is probably still somewhat plastic and can recode information into alternate forms. Visual learning methods may be helpful to stimulate or guide recoding and shifting functions to less affected areas of the brain. Visual learning methods CANNOT treat a brain disorder, but they may be valuable assistive aids to slow the degeneration of the individual’s quality of life and independence even though they will never be a treatment to slow actual brain deterioration. I believe that it is possible to stimulate relatively less affected areas of the brain to take over some of the functions of those areas that are shrinking. Visual learning and data re-organization (with mind maps being a primary method) probably help to slow the slide of individual patients into stages where they are highly dependent on a caregiver and cannot participate in many formerly enjoyable interactions and activities. NONE of the studies in the articles in my literature searches proves that I am right.

We have learned a huge amount in the past THREE years about how the brain works. This is just the beginning. Until such time as there are truly effective medical treatments (developed from research) that can prevent or “fix” neurodegeneration, well-established, visual cognitive tools may provide help in slowing the fall in the individual’s quality of life. And in future decades we will have a much better understanding of the synergistic roles of formal medical treatment for neurodegeneration and visual methods of learning, memory retrieval, and decision making.

This is going to be a cumulative set of database searches. I will periodically add searches of public access (free) medical databases. At those times I will republish the page with the date of revision and version number.

The results of the searches are not medical treatment advice. The results are not suggestions for future research. The results are not exhaustive. No guarantee of the quality of individual research articles is made or implied by inclusion in these searches.

Search PubMed for information on human research on brain plasticity neurodegenerative

Literature  Search 1

Help support the continuing evolution of our understanding of the brain, medical treatments, and useful visual learning and cognitive methods for slowing the deterioration of quality of life by learning about the scientific research going on. (And yes, I support stem cell research.)

I think it is fair to say that most individuals will immediately mention loss of memory (specifically Alzheimer’s Disease) as the major component of neurological decline. But there is much more to neurological decline than just grandma forgetting the names of all of her children and forgetting to take pills. Neurological decline is actually a very complex phenomenon and can include such problems as loss of executive functioning (decision making, planning), the inability to communicate through words, losing the ability to track events in time, decrease in mental flexibility and creativity, and general inability to quickly understanding something being said. Some of the diagnoses associated with neurological decline are Alzheimer’s disease, Parkinson’s disease, Dementia with Lewy Bodies, Frontotemporal Lobar Degeneration (Frontotemporal Dementia, Progressive Supranuclear Palsy, Multiple Systems Atrophy. Corticobasal Degeneration and others) as well as accidents and resultant brain trauma from such sources as automobile accidents, football, and failing to wear head protection while on bicycles.

Individuals with neurological impairment have much more complex arrays of problems in brain functioning than is captured by saying that memory is failing.

Since the technique of mind mapping has been associated with learning and memory and creativity, it has been suggested by many as a way for neurologically impaired and those with normal aging to “retain and increase memory.” However the loss of neurological functioning is very general as discussed above, and it is quite likely that methods of mind mapping will prove effective when applied to many different issues encountered by the neurologically impaired.

This mind map shows some types of loss of mental-cognitive functioning that might be helped by using mind mapping techniques both before and throughout the increasing stages of neurological impairment.

Mind maps can be used for much more than just enhancing memory for the memory-challenged. The techniques are also useful for improving communication, decision making, cognitive flexibility, multichannel information processing, calendaring and  maintaining daily schedules and self-care, generating new thoughts, understanding the “big picture” (context and subtext), and many other problem issues.

I am going to write MUCH more on this topic in the coming weeks. Next up will be a mind map showing the relationship of types of neurodegenerative conditions.

Please click on the image to zoom.

what neurologically-impaired individuals might gain from mind mapping