It is now 12 years since I was diagnosed with having a neurological condition that results in a lot of brain damage and early-onset dementia. In my case it also resulted in the shaking and instability of Parkinson’s disease and what many would confuse with Alzheimer’s disease. In 2012, retired from 35 years of being a California-licensed research psychologist who had most recently worked evaluating more than 200 agencies that were affiliated with hospitals and community organizations and provided services to people were ignored in the larger health care system in the US. Together with my business partner Dr Lisa Melchior, our consulting worked with the patients-clients-staff-administrators programs funded through grants from Federal agencies in 42 states as well as State Departments of health, education, and research, and foundations, corporations, and individual donors.

When I was forced to retire because of my deteriorating health and my concerns that I would make a mistake and misinterpret data being collected in our research on innovative treatments for underserved and stigmatized people, I decided that I would spend my final years trying to develop some techniques assisting underserved people with dementia, their caregivers, and their medical providers to have the highest quality of life possible at their levels of physical and mental disease. As a side note, I cringed every time some well-meaning friend, colleague, or acquaintance suggested that I should develop a “bucket list” of all the places I never traveled to on vacations or in my work. Many thought the 6 million “miles” I had accumulated in my frequent flyer account meant I love to travel nonstop. Rather, 90 percent of the time, I preferred to be at home working on things important to me.

So I focused on developing inexpensive, easy-to-use methods one could use to find the good things in life and enjoy them, support family members and others in caregiving, and let doctors like myself see what it like to be living with dementia. My belief that is that those with dementia are capable of more than watching old TV shows all day, “abusing” their caregivers by because of frustration, and being “drugged” to a point where they lose focus and an ability to make themselves happy, productive, empathic, and content with their lives within a new reality that is confusing and frustrating. I think that some of the simple methods I have developed and expanded in the 999 blog posts before this one, can be used by many, far at times fun to do, do not require the help of others, and very inexpensive (you can do what I do with a pencil and the back of an used envelope.

I am now developing a second web site Huba.com that is much more direct in helping one to learn my techniques, determine if they are useful for them, and perhaps have an enhanced quality of life. Unlike this web site which more historical, scientific, and experimental, the new web site will be very focused on “just doing it” and enjoying the rest of your and not wrecking the lives of others.

I have done a lot of work which has been fun in the past 12 years. Work has also been my hobby my whole life, and most days at least most of the time I was happy.

Here is a summary of some of the major things that have been going on recently. And … the new web site will be fully operational within a few months.

To make the following mind map larger, you can double-click on the picture and it will expand.

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The past two months have been a time of great anxiety for everyone. At this writing, 170,000 have died from COVID, 25% of the American workforce is unemployed, and the USA is polarized beyond anything I ever saw at any time in the 69 years of my life.

On top of the great challenges of the past months, I deal with dementia and am alternately fairly calm (in no small part due to great medical care and appropriate medications) and anxious and confused and memory-challenged. 

Over the past 10 years as I dealt with early-onset dementia I have used the idea of comfort activities to help me get through times of great turmoil and confusion.

A comfort activity for me is one that is predictable, one I know will be pleasant, and one I have probably done many times before. So I watch the Hunt for Red October for the 51st time or rewatch all the episodes of the 2000s version of Battlestar Galactica which I have seen at least a dozen times. Recently I have rewatched the four seasons of the Expanse almost a dozen times. been revisiting all the albums of the Rolling Stones and the Allman Brothers, and reading lots of books I have read several times since I initially enjoyed it years ago.

With dementia, I sometimes have to watch a movie a few times (or more) to understand it. And every repetition thereafter I find things I didn’t understand the previous times or forgot. But I always remember that the activity is one I like, one that is calming, and one that will not confuse me.

If you have early stages of dementia or are a caregiver for someone with dementia, try to identify comfort activities and try to do some several times a day. And, if you do not have dementia, I bet this same strategy can help you deal with trying times of confusion and anxiety.

The following mind map explains my view of comfort activities. Click on the image to expand it.

… not that any year would be a good year to have dementia, but 2020 is a real doozy …

The mind map shows some of the things I experience.

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I just lived for the past six months in “stay-at-home” conditions because of the COVID pandemic. I also am living with dementia and my residence is a health-care living complex regulated by the State of North Carolina.

As usual, I developed a mind map over the past few weeks to summarize what the issues were (are) in dealing with both of these “problems” at the same time.

Most of the information is best explained by the mind map below because it shows, in a summary fashion, what it meant to deal with the pandemic. Here are some bullets to cover things.

1. The condominium building I live within has 18 units with either or two occupants. There is a trash pickup a few times per day. The units each have one or two bedrooms and several bathrooms, a small kitchen, a living room, and a very large number of windows in units.
2. During the last six months, everyone was in a quasi-lockdown condition with residents asked to not leave the large campus with lots of green space and several dozen buildings and about 50 single or duplex homes. No visitors were allowed inside buildings and the social interactions I had were with family members sitting on chairs I would bring downstairs to the grass where we would sit 12-20 feet apart, eat bag lunches together, talk.
3. Most weeks residents were encouraged to stay in their units and to only go out to get the mail or exercise in a socially distanced way. One meal per day per resident usually served in a communal dining room was delivered to each of the homes. Most of the time residents used grocery delivery services and online stores like Amazon. Most prescriptions were delivered by mail or picked up at a local pharmacy where you could call and pay and they would set your prescriptions outside when you arrived for you to pick up.
4. The complex of about 400 persons has had no cases of coronavirus among residents and five cases among staff members. A related small residential intensive medical building has had two positive cases of coronavirus.
5. Within my building, I am the youngest resident (at 69) and most of the other residents are in their late 70s or 80s with all still fairly mobile. I have not talked for more than 5 minutes to other residents in a day. One thing that I have observed is that most of my fellow residents cannot maintain social distancing because of cognitive difficulties or lifestyle issues like their cultural norms, poor hearing, and loneliness.
6. I have also observed that I am probably the only resident of my building taking advantage of bringing chairs out to the lawn and sitting far apart from 1-2 visitors at a time.
7. I often (more than half of the time) do not formally see other people in a day; our interactions are limited to my identifying them from the door peephole and conversations through an unopened door.
8. I love Facetime. My whole family uses it and I log many hours each week on it with family. My goal is to increase my use of it or another video call app with friends.
9. I have canceled several medical appointments that were not urgent. I am waiting until the virus is under more control before getting cataract surgery in both eyes. I had one online (voice only) appointment with a neurologist I see for cognitive issues. I recently had a video appointment with another neurologist I see for movement symptoms and overall management of neurological issues.
10. The two online appointments (one each with two different neurologists I consult with every six months that I had worked well The video format was much more effective than the audio-only one I had early in the pandemic before video equipment had been installed in the offices of the Neurology Department.
11. When I had my appointment with the movement disorders expert, I found that we could accomplish much of what we did in an in-person visit. For instance, I adjusted my video camera a little and then walked up and down the hall for her to observe in the same way she had done for 10 years at her office. I help my hands up to the camera so that she could look at tremors and movement acuity. Surprisingly, I also found the interactions with a doctor I have worked with for years to be as relaxed and thorough as those I experience in person.
12. As someone who had early-onset dementia and neurodegeneration diagnosed before I was 60, I have watched myself decline in functioning level for a decade. Over that decade, the level of the decline from year to year was fairly constant although getting a little faster as I got older as would be expected. During the pandemic, my rate of cognitive decline as been dramatically greater.

Click the mind map to expand it.

Sections of the mind map. Same map as above.

I believe you can live well with dementia. I believe I live well with dementia.

Here are some of the rules I made for myself to help me stay focused on the goal of living as well as possible 10 years after being diagnosed at age 59. I have been using these guidelines for myself for many years.

I hope they are as helpful to you as they are for me.

Here is a mind map of rules and guidelines I do my best to follow. If you have dementia, trying to use these guidelines for a few days or weeks may help make you more skilled in dealing with your dementia.

Note. The information in this post is not a treatment or medical advice. These are just a few thoughts about living well while having dementia that have been helpful for me.

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When discussing the COVID-19 pandemic with a loved one who has dementia, it is important to be matter-of-fact and honest but with a respectful, loving, calming, and warm voice, touch, and style.

Don’t make the conversation about the pandemic too detailed. Do discuss the issues in a general way and be honest. Don’t make it too graphic. Try not to trigger anxiety, agitation, and anger.

The TRUTH but gently. How the pandemic will affect the person with dementia and you and your relationship. But do so gently and with concern and with a positive attitude that “we can get through all of this but it will take a lot of hard work by us.”

Click on the mind map to expand its size.

In retrospect, the most difficult time in dealing with my dementia was the first few (about three or four) years. In the beginning, the symptoms of dementia hit me like a jackhammer and everything in my life became a crisis because I did not have the skills and tools to deal constructively with my new limitations, cognitive reality, and my shrinking universe. With a lot of help from family and friends and caring agencies, I did build up skills that have permitted me to learn how to “control” my new medical reality.

I write a lot about how I dealt with the problems caused by the dementia constellation of symptoms. I live well 10 years after the recognition of my neurodegenerative disorder(s).

Here’s where I was in 2010 before I learned how to approach the control of dementia. My message now is that it is possible to learn skills and tools that can improve the quality of life with dementia.

Click on the image to expand its size.

Also, see your pharmacist and ask her concerns about any of the drug combinations you take.

I have always been quite concerned that with a number of different conditions being treated including dementia symptoms and underlying brain disease, it was quite possible that some of the medications might be counter-indicated or redundant (and thus giving me an “overdose” of certain brain pathways. Your physician(s) can help you resolve this.

NOTE. MANY OF THE MEDICATIONS PRESCRIBED FOR DEMENTIA SYMPTOMS AND CAUSES NEED TO BE WITHDRAWN GRADUALLY AND SLOWLY TO AVOID COMPLICATIONS FROM STOPPING THE DRUG QUICKLY. ALWAYS SEE A PHYSICIAN ABOUT DISCONTINUING A MEDICATION OR CHANGING THE DOSAGE.

It takes dozens (if not more) people to help a person with dementia live well. With great gratitude …

When people look at and try to interact with people living with dementia, they often misunderstand what is being expressed. People with dementia cannot control facial muscles and may appear to be angry or disinterested even when very happy. They may talk slowly and then come out with something brilliant which you will miss if you stop them mid-sentence. They tire easily and may expression or irritation, not because of the behavior of others but just because dementia can make one very “mentally tired” in a way that I never experienced prior to dementia.

I’m there much of the time, I just don’t look the same way I used to. Be patient.

Click on the image to expand the size.

There are lots of assumptions in the healthcare world. Some of the assumptions derived from the individual healthcare providers and/or their professional and accrediting agencies. Other assumptions arise from biases long-held by elected officials who must approve the use of public funds for selected services and deny them for others. Additional assumptions arise from major stakeholders in individual and corporate income and profits. Amo g the stakeholders are the pharmaceutical and healthcare supplies manufacturers (often, by the way, subsidiaries of Big Pharma companies), doctors of different specialties, insurance companies that manage healthcare facilities, and research universities that expect public sources to pay their overhead for operating the entire institution and not just the parts that cover healthcare research and medical treatment.

To develop a better healthcare system for everyone,j and in the area of dementia services where I focus my concerns, various kinds of cost-benefit studies are necessary. For instance, should dementia patients add a new, but generally unproven expensive drug to their treatment plans or instead receive a package of social services including care management, reimbursement of costs for services currently provided for free by their family members, respite services for caregivers, and patient and caregiver education. Should dementia patients get training on how to better make decisions, solve problems, and understand others better rather than some more medications purported to improve (but only slightly and only for some) their cognitive functioning.

For dementia patients, I strongly believe that cost-benefit studies need to be conducted to determine whether more cost-effective improved outcomes can be achieved with cognitive-social interventions, increased use of pharmaceuticals not fully proven to produce effects at this time, or combinations of the two.

It is very unlikely that at least within the foreseeable future there will be enough final resources to provide “perfect” treatment for each patient. Hence, it important to know the best combination of imperfect treatments that can be made available for different types of patients.

The following figure discusses some of the issues. Click on the image to expand its size.

https://www.facebook.com/groups/234459813650644/

While having dementia, I realized that I could not always depend on myself to be able to remember what had happened to me over time. Symptoms? Mood? Problems? Successes?

One of the most effective ways to improve medical treatment is for the healthcare provider(s) and the patient to work as a team. Notice that one of the first things your doctor asks is “how are you?”

How you answer that question will greatly determine how much you and healthcare providers can accomplish during the appointment.

When friends ask you how are the automatic response is “fine” for most people. Same thing for when doctors ask that at the beginning of an appointment.

Let’s be real here. When you have dementia, things are not going to be fine ever again. By just replying “fine” your friend or healthcare provider might infer that you are avoiding answering honestly or even worse, they will believe that you are “fine.”.

About a year after my diagnosis 10 years ago, I stopped just answering “fine” and adopted the following response.

“For someone who has dementia, II am doing as well as anyone can realistically expect, and many times even better than that. I am eternally grateful to my doctors, family, and friends.” Or something more informal but expressing the same thoughts

Now, if you want to get the most out of your doctor’s appointment, you need to quickly, fully, and accurately tell your doctor what “fine” or “terrible” means to you..

Doctors are scientists trying to use all of their skills to determine what they can do to make your life better and more comfortable.

They need DATA. Not just data that comes back from a blood test or your blood pressure or weight but data on how your medications are working, how you get through your day with dementia, events that may have happened like a fall, and side effects you get from your medications.

I know how to deal with the need of the doctor for DATA to fine-tune your treatment. You figure out what she needs to know and you start to document what is going on.

So I started to prepare for the appointments by spending a few minutes developing a mind map that would help me remember what to say in my appointment using the mind mapping techniques I talk about in this blog. This helps me capture in more detail how the 3 or 6 months between appointments had been going. And it helped me understand how the things I did and the environments I faced determined the outcomes of my treatment.

II started collecting some data about myself and I brought some mind maps to my doctor appointments regularly. It got much easier for me to explain how I had been doing since my last appointment. How well did my medications work? Did they have side effects? How did I structure my day and how did I get along.

Several doctors saw me consulting a bright and clear mind map on my lap. In several cases, they (my neurologist and my internist) almost grabbed the display from my hands. I now have dozens of mind maps scanned into my medical chart.

The mind map below shows some of the data I collect and how I present it to my doctors.

Expand the image by clicking on it.

I’ll be creating many more blog posts on how to work with your healthcare provider and provide her with data that helps her understand what works well for you. Watch this space.

Neurodegenerative conditions progressing in typical ways can cause many different type of altered psychological functioning. Psychiatric medicines may help control some of the psychological conditions caused by brain disease or create additional psychological problems as side effects.

You need to discuss psychological problems that you experience every time you see any of your medical care providers.

Psychiatric drugs used for those with neurodegenerative disorders may be prescribed differently than they are for psychiatric patients without neurodegenerative conditions. Hence if you are being prescribed psychiatric medications for a neurological condition, try to see a healthcare provider who has been trained in both neurology and psychiatry.

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As soon as you are diagnosed with dementia, it is important to start to use techniques of “living smart with dementia.”

• Time Frame: reorient yourself to the ways things are now, not what they used to be.
• Medications: work with your doctor on drugs that can help with your symptoms and follow your doctors’ instructions.
• Anxiety: ask your doctor for help.
• Gratitude: Appreciate and acknowledge all those who help you.
• Communicate: Use appropriate methods for your current cognitive strengths not necessarily the way you have done it in the past.
• Apathy: Take steps to actively reorient yourself when you just don’t feel like doing anything.
• Think Small: Your goal is to live well and make as few problems for others as possible. You are not going to rebuild your career or Rome. Identify what you can do and work hard to do.

The mind map below shows a synthesis of these ideas. Click on the image to expand it.

Click on the images to expand their size.

Over the weekend I did something I have not done since I retired from my job because of dementia in 2011.

I flew a round trip on airplanes including two legs in each direction and four hour connection times both outbound and inbound at the Philadelphia airport.

I flew unaccompanied.

It was a lot more difficult than when I travel with family and almost a night-and-day experience in relationship to the 20 years I flew between 100,000 and 150,000 miles each year without leaving the lower 48 states of the USA.

But I did it.

Should you be inclined to do what I did and fly unaccompanied, I have some very important pieces of advice.

1. You cannot even try flying alone without the support and permission of your family and caregivers. Honor their wishes and judgments.
2. You should talk to your doctor and take seriously their advice and concerns about flying. If your doctor says you cannot do it, recruit someone to go with you. Or don’t go.
3. Do not even go on the plane alone without a LOT of preparation. This is critical.
4. The most important thing you can take if you travel alone is a smartphone packed with lots of travel apps, and web clippings of important information like your air travel documents, key contact lists, an full itinerary, possibly a bank card integrated into your smartphone, and pictures of important information like your ID card, pill warnings, where you are going, who you are going to see, and much more. You cannot ever have too much information on a smartphone. But do make sure you can find it quickly when you need it! Note: I believe that you cannot leave your ID at home. Security checks require a physical ID card.
5. As a rough estimate, I think that probably less than 5-10% of all people with EARLY STAGE dementia should be traveling unaccompanied. Forget traveling alone if you are in one of the advanced stages of dementia.

Here is a small mind map I made up while sitting in the Philadelphia airport a couple of days ago.

Click the image to increase the size of the mind map.

The most difficult part of the trip by myself was to get through security screening. Pray for a world where terrorism is no longer a problem.

As neurodegenerative conditions progress, obviously behaviors and feelings and symptoms also undergo negative trajectories. Here are some things that are happening to me. While the issues grow over time I think that the visual thinking methods this blog presents do slow down the problems. 

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A simple tool kit of methods that you already know all or can learn in an hour or two provides opportunities to maximize your brain function even after years of neurodegenerative disease and dementia.

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I have written about this topic more than a dozen times since 2012.

I know that adopting visual thinking rules has made it much easier for me to weather the storms of cognitive decline and neurocognitive disease. I know that the same techniques are useful for caregivers and healthcare providers.

Think about making a small investment in time to explore the methods I recommend. Your initial attempts require no more “equipment” than a couple of pens or pencils and the back of a used envelope.

Click the image to expand.

I made the following mind map at the end of the day yesterday to document what I had done that day. The source of information was a small notebook I carry to scribble incomplete thought during another day of living with dementia. This mind map took about 5 minutes for me to draw (I have a lot of practice) with a pen and a medium-sized page from my sketching pad.

Click on the image to expand it.

To make the ideas on the mind map identify streams of color. You can just take your map and go over it with color pens of various types. Like this …

While you see my computer-assisted mind maps on this blog site, I find the hand-drawn maps adequate for simple applications.

Try to draw a similar small map. Do you think you might remember the organized information better and encourage your mind to create associations or brainstorm new thoughts? That’s how it works for me. Using a few colored pencils makes the hand-drawn map even more useful.

When I want to capture and organize more information I use a computer program (either starting with a hand-drawn first draft) or just creating the map from scratch in a computer program.

Here is a computer-assisted map drawn from the first-draft above. It took me about 15 minutes to draw; I added a little more formatting because the map was going into a blog post rather than being just for my use. I could have drawn the computer-assisted map in 10 minutes if it was just for personal use.

Click on the image to expand it.

After you experiment for free and with materials you already have in just about every room you have in your house — and possibly already in your pocket — you might want to try to develop some maps in free programs or free demonstrations periods for more expensive programs. Programs are available for notebook computers and mobile devices. There are many apps for Macs and PC and iOs (Apple) and Android mobile devices.

I hope this post gives you a little better understanding of why I mind map with dementia to improve my ability to continue to think well. I have found over 10 years that I have been able to retain quite a bit of my cognitive functioning in spite of neurodegenerative disease.

Will this work for everyone? No. Is it worth a try? Well, it costs nothing to try as you already have that pencil and an old envelope around. And you could always work on a mind map during the television commercials instead of running to the refrigerator.

Give it a try.

Your inner clock is extremely important. It helps you go to bed and wake up at a time that matches the rest of the world. It signals you when 15 or 60 0r 90 minutes passes. It helps you get to appointments on time or to the grocery store before it closes.

My internal clock has been broken for the past six months. It’s more of a problem than it might seem it should be.

Click on the image to follow the journey through the warped time-space continuum.

Click to expand the mind map.

Had I not developed mind mapping for use with neurocognitive disorders, the past eight years of my life would have more difficult to deal with and LESS FUN.

#mindmap

#dementia

#casemanagement