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social, health, political imagery through the lens of George J Huba PhD © 2012-2017

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I hate clutter. I’ve always had far too much stuff around, usually that shoved in an unused closet, the garage, storage. Old questionnaires, old clothes, old pens most run dry by now, old external data drives (in case I need an email from 1990), old office supplies, old books from grad school in the 1970s that no current grad student wants for free (no grad students buy boor professional journals in paper formats any more), boxes of new file folders (which no one uses in the computer ages), old jeans (as sizes went up and sometimes down over the years), t-shirts from the 1980s, and who knows what else. I also inherited a bunch of family heirlooms (but mostly junk but including my treasured Eagle Scout badge and transcript from grad school) in boxes from my mother. The organization systems I have tried to implement since the early 1970s have never really worked that well.

And the reason “disorganized and cluttered” could dealt with easily was that I had a very organized mind and my memory was like a steel trap; if I had observed or read or heard it, the information was there. And, damn it, I never learned to clean up after myself because there were always more exciting and new things to do. And if I needed something the odds were extremely high I could find it the random box where it had been placed.

And this was before the Internet, before the Internet with Google, before the Internet with voice-controlled Google. Information organization needs have exploded.

And this was before I had neurodegenerative disease with memory loss, significantly lowered ability to multi-task and make decisions, a big temper when frustrated, lowered ability to separate perceptual field from ground (or the object I wanted in the clutter), and many other dementia symptoms.

Now clutter just destroys me. I waste much time every day trying to find things, organize things, decide what to throw out and what to keep, and putting things where I can find them. I get extremely anxious and agitated in clutter but cannot figure what to discard without then facing a world-shattering event without the one paper or piece of clothing or knife or key or medical records that would save the world.

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I have written a lot about techniques for maintaining or even improving your quality of life while you have a neurodegenerative disease or another condition causing dementia.

Ok, if for some reason or the other, you find that you are living a pretty good life of pretty good quality because you have been learning cognitive and behavioral methods to cope, there are lots of other things you can do. What are you going to do with all of that time? Here are a few suggestions in the form of a mind map. Click the image to expand it.

Living Well with Dementia Suggestions for Use of Your Time

 

The same mind map is shown as a presentation next. You can simply watch it with the automatic changing of slides or if you tap the pause button in the presentation you can use the right and left arrow keys to go through the slides at your own speed.

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While you still can do things for yourself, you should try to minimize the burden your dementia places on your family caregivers and those hired to help. No unnecessary requests. Caregivers are there to help you with your care, not be a maid, servant, counselor, whipping post, target for frustration, psychotherapist, or camp director. If you can still do it, make your bed and your breakfast and schedule your day instead of expecting someone to do this for you while you watch the morning talk shows or endless reruns of I Love Lucy or Star Trek. Appreciate caregivers, value them, thank them, help them. Later you won’t be able to help so much but they will know that you have always tried to be as a little of a burden on them as was possible.

Get ready for the later stages of dementia. At the present time you cannot stop the progression of dementia although you can certainly prepare for things to finally get worse.

Take advantage of neuroplasticity, the way the brain will rewire itself if there is outside stimulation. Organize yourself better getting boxes of photos and other life memories together. Try to learn to do new things that will help you better deal with the later stages of dementia. You will be surprised to find how the simple step of improving your handwriting will improve your quality of life later as you become more and more dependent upon sticky notes to yourself and others. Try to be creative with art or music or just continue to use your time experiencing new movies, museums, and restaurants. Organizing, learning, being creative — all of these activities may help you help your brain to make itself adapted to working around your dementia, although it is quite likely that adaptation will not occur for many. But if not, you may still find some of these activities enjoyable and you will be giving your caregiver a break from being the cruise boat director so it is still a winning situation.

Use the “good” time you have now to make the upcoming “bad” times better. The dementia is not going to stop without new medications or other emerging new medical procedures, but you can change how you feel about your life and interact with others for the better. And, you can make the life of your caregivers better in the future by learning ways to “help yourself” now. Your daughter or partner or son or siblings never signed on to put their own lives on hold for you. Try to minimize the amount you will be forced to ask them to help by using time during the early stages of dementia to be more self sufficient later.

You can do this. A lot of it can be fun or a way of realizing that you can still do things after a diagnosis and you can still do many of them well and learn new things.

You can do this.

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I recently celebrated my 65th birthday.

I realized that this was also the 5th anniversary of maintaining a good quality of life while having neurodegenerative disease.

They give people awards for five years without cancer remission or for five-year sobriety. So I thought I would give myself an award for having many bad things happen during the five-year period since “officially” becoming 100% disabled (according to the Social Security Administration) and nonetheless being able to maintain a good quality of life.

Obviously I had lots of help … nobody can survive dementia without a strong support system. For that I am very grateful.

I started out my period of retirement with the goals of maintaining quality of life for my family and myself and making a little difference in the world. I also wanted to stay relatively independent and minimize the number of times I would have to ask others to make large personal sacrifices to help me.

Don’t send me an email or comment on this entry to acknowledge that I did a good job — I know that. Do design programs and experiences for patients, clients, family members, friends, and anyone else with dementia to celebrate how hard they worked to try to stay independent and be as self-reliant and responsible as their medical condition would permit.

People with dementia can do much more and have a better life than most know. Help them learn this and celebrate their victories and achievements. Recognition that it is hard helps a lot. So does basic information that this is possible and some simple and inexpensive techniques for achieving as much independence as possible.

[I got the idea for this approach when my dermatology clinic congratulated me on the fifth anniversary of a skin cancer they had removed which did not re-occur.]

Celebrate people with dementia who “survive” and “thrive” during the time of their disease. Encouragement goes a LONG way.

Click on the map to expand it.

5 YEAR SURVIVOR

The following presentation breaks the map down into smaller pieces so it is easier to see the clusters of ideas. If you would like to manually go through the presentation, click on the pause button and then use the arrow keys to go back and forward.

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Live Long and Prosper

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The infectious disease of the month is Zika. A few months ago it was Ebola. Before that MERS. In between we have seen some reports of a small number of Avian flu cases along with sprinklings of other emerging health problems.

There is a simple statement that describes what happens when an infectious disease hits a poor nation or nations.

When a new infectious disease outbreak occurs in a poor nation, (tens of ) thousands can become infected and potentially die before we, in richer nations, hear about the disease cluster or alarm is expressed by our government officials. As soon as a few cases occur in the USA or EU or other richer nations, a few thousand stories are immediately broadcast on the global, television satellite network and the richer nations proclaim the seriousness of the problem. The CDC of the USA is a good example of this very reactive strategy.

If we know anything about outbreaks of infectious disease, it is with rapid worldwide transportation systems and pervasive international trade, the disease vectors and active disease cases will arrive in the richer nations and cannot be confined to poor nations (not that this should EVER a poor nations only problem). And we also know that the poor nations do not have the health system infrastructure to prevent the emerging disease within their own countries nor to treat their citizens with state-of-the-art techniques and medications nor to confine the disease within their borders.

Perhaps thousands of television stories can be broadcast about the need for a real and responsible whole world health system instead of the fairly unresponsive and overwhelmed system represented by the World Health Organization.

Or maybe television outlets do want to run stories like the terrors of the “Disease of the Month” because they might lose advertiser revenue from broadcasting the scary stories of rampant infectious disease of the week (month). Or maybe governments are worried about not being able to hold the poorer nations in their “proper place” if they receive the benefits of an effective world wide health system.

Makes you wonder, doesn’t it? The following mind map shows some of the issues. Please click the image to expand it.

 

WHY DO WE NEED A GLOBAL HEALTH SYSTEM

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Have dementia? I do. Care for someone with dementia? I used to. Have a family member with dementia? I used to.

There are many things that you can do to help yourself (and others you meet along the way). Among others, stop worrying about appearing dumb or disabled; if you have a problem ask someone to help you. Practice what you should do in various situations. Try to be empathic (or at least aware). Learn to be patient and take your turn even if you want to break into a conversation or a line because you might forget what you want to say or you think no one is listening to you. Keep trying to learn new things or ways of behaving or ways of thinking. Respect others. And focus on enjoying your life in a way that does not take away from another’s enjoyment of life.

Click the image to expand it.LIVING WELL WITH YOUR OWN DEMENTIA (more…)

The 1985 Chicago Bears are considered by many to be the best professional football team of all time.

The coach was Hall of Fame player and coach “Iron Mike” Ditka. Ditka was the ultimate “rough and tough” player and coach. The 1985 team he coached won Super Bowl XX handily.

In 2015, Ditka was interviewed on television by Bryant Gumbel. In the interview Ditka admitted that if he had an 8-year old son he would not want his son to ever play football. Gumbel answered the same way. With a lot of emotion, Mike Ditka stated that his career as a player and coach had made football a major part of his entire life. But there was no way he would want a family member to play the game. (more…)

My book, Mind Mapping, Cognitive Impairment, and Dementia (published in 2015) has been reduced in price to the lowest amount allowed by Amazon.com and Apple. While I would have made the book free for a limited time period, I have to sell, rather than distribute without cost, the book because of its size and cost of electronic distribution and the fact that the two stores require identical pricing.

The book is ONLY available in electronic formats (iBooks for Apple devices; Kindle for all devices for which there is a Kindle reader app including Apple devices). The price is identical for either version in the United States. The price should also be the same in your country unless the two stores are using different conversion rates or dealing with VAT in different ways.

To order you can click on one of the book cover icons on the left side of the pages on this site depending upon whether you would prefer to purchase the book in Kindle or iTunes format. You will be directed to the appropriate web site.

The two books are identical except for very small features required by their respective formats.

Available at the low price for a few weeks. Notice of February 5, 2016.

This book is the first in a multi-volume series. The second and third volumes will be released in the first half of 2016.

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Note: The book is not available in China and several other countries because intellectual property rights are not respected in those markets. If you are in China and wish to obtain a copy, try to purchase it from the store in another country. Don’t blame me for the fact that your country is creating new billionaires at the fastest rate in history and has created the world’s almost biggest economy and still refuses to play fairly with the rest of the world and respect property rights and make aid donations to support basic human needs and rights in the poorer nations.

When you get diagnosed with neurodegenerative disease — or any time thereafter — you have a choice.

You can wallow around thinking life is over and you are sick and you will never live well again because everything is changing.

Or you can go with the flow and let yourself be happy and live well, albeit differently than before.

I try to flow into what is possible every day. And enjoy it,

These are my criteria for living well with dementia. These work for me. Maybe they will work for you. Or maybe you will develop your own criteria, a very good idea. (more…)