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.
Two thousand and twenty. A leap year. A presidential election year. A year when some clear thinking is needed. Also a lot more civil discourse. And collaboration. And collaboration. And collaboration. Two thousand and twenty will be in the history books. Let’s hope the year is remembered as the time when we all came together.
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.
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.
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.
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.
Think how much easier it might be for a person with cognitive dysfunction (dementia or other) to understand and remember the elements of this mind map than “the quick brown fox jumps over the lazy dog.”
Of the course, this is just a little example of making a point. There are thousands of applications of such a method in the daily life of a person with dementia or a child with cognitive challenges.
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.
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.
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.
In the past week, the United States — based only on the Executive Orders of the President and not the Constitutionally mandated approval by Congress – withdrew US troops stationed in Syria.
The result was to allow Turkey to start a war of ethnic cleansing against Kurds who helped the US fight ISIS and whose families were living in Syria to avoid the conditions in Turkey. Russia also benefits from the removal of US troops from Syria.
Then the President shipped US troops to Saudi Arabia to protect its oil fields. This is while individuals allied or employed by the President or the US government are in the Ukraine intervening in the ownership and management of natural gas fields and pipelines. The same individuals seem to be collaborating with Russia (and possible the Ukraine, Chine, and North Korea) to influence the 2020 US elections in the President’s favor.
The President is violating both American values and US and International laws.
In addition to dumping Trump I would like to see the US government prosecute him and his crime family. They should get LONG terms of imprisonment.
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.
You cannot even try flying alone without the support and permission of your family and caregivers. Honor their wishes and judgments.
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.
Do not even go on the plane alone without a LOT of preparation. This is critical.
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.
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.
Want to get the attention of Big Pharma and patients who do not try to prevent common diseases? Require this statement or something equivalent on every bottle of medications (prescription and not prescription) sold. [Of course, filling in the blanks with numbers derived from clinical trials, longitudinal studies and other credible scientific information collected by independent qualified professionals.]
This drug works ___% of the time for ___% of the patients who use it, producing a ___% percent improvement for ___ months at a list price of $___ per month. Insurance typically pays for ___% of the cost. ___% of patients experience severe side effects.
This data — or some variation of it — is currently or should be collected by the FDA and confirmed by consultants independent of both the FDA and the pharmaceutical company.
Big Pharma will not like this proposal. Elected officials who have been “bought” by Big Pharma contributions to their election funds will not like this proposal. We should listen to neither group.
Consumers of medicines and treatments should know the approximate cost of their treatment and its efficacy when collaborating with their healthcare providers on a treatment plan.
Everyone should consider the relative costs of preventing diseases rather than treating them. The information provided by these labels could help individuals decide whether a healthy lifestyle provides financial benefits to them.
Question: Which groups of people are not doing their jobs by trying in a meaningful way to eliminate foreign influences on our elections?
Answer: Circle all answers which apply.
A) US Senate
B) US House of Representatives
C) President of the United States and White House Staff
D) Secretaries of Relevant US Government Departments
E) All of the Above
p dir=”auto”>Time to demand that the bozos you identified above are told by the US public to stop sitting on their backsides (and cashing the checks foreign influences are providing to some to promote their own careers and line their own pockets).
June 2 until July 12. That’s a long time for any person. It’s a much longer time for a person with cognitive decline. It is the longest time between posts on Hubaisms.com.
Typically, if you got back through my 800 posts since 2012, you will find that on average the gap between consecutive posts is about 3 days with flurries of activity when I post several times per day.
Why the big gap for the first time? Here are some of the reasons.
11 fantastic days in Spain (Barcelona, Majorca, and Madrid) with wonderful food, great museums, and immersion in another culture
working on a book
preventive activities on my part and that of my medical providers against the rate of increasing cognitive decline
feeling kind of lazy
“malfunctioning” of my personal clock (consistent organization of daily schedules)
video bingeing on The Expanse, Salvation, and Marvel Universe movies (all highly recommended)
working on some new methods of using visual thinking (see next post) to deal with cognitive decline
Here are some of the consequences of the “absent six weeks.”
very rusty on WordPress (blogging software)
very rusty on using the iMindMap program and others for computerized mind mapping
development of some new techniques and variants of old techniques for fighting cognitive decline and improve some of the methods I have been using
During the six week break I did conclude that my life is slowing down and it is getting harder, never easier, to keep a definite “work” routine going. Given that I was in a consistent and fairly invariant pattern of work and other activities, “relaxing” from that set routine has defiitely made it harder to re-establish the patterns that have been keeping me stable over the past eight years. Keeping on a regular schedule of cognitive exercise has been important for me over almost a decade. Time to get back on a regulated at the schedule. At the same time, I am going to try to get other things back to normal and establish
In the next few weeks, I will be posting a lot on mind mapping, improved techniques for effective visual thinking, experiences during my cognitive decline, and new ways to document your daily life (throughout your lifespan and during cognitive decline).
I use Grammarly with my blog and social media posts as well as everything else I type to check spelling and grammar. Grammarly works well with both USAish, UKish, and the English of the rest of the world.
Grammarly is an advanced editor that is extremely that catches most spelling errors and surprises me all of the time with its excellent grammar suggestions
Grammarly works well in virtually all programs I use such as WordPress, Twitter, Facebook, note editors, email, and many other apps.
Donald Trump should acquire copies for his own unsecured cell phone tweets and his speech writer. After all, what is an inane idea with spelling errors?. This problem is probably also driving the Russians and Chinese crazy, especially if they are trying to use Google Translate..
I think it a fantastic time of year for most of the things I like to do in spite of the inevitable 5:15 PM thunderstorms and the usual 5-10 days of 99 degree temperatures.
Row a boat, paddle a canoe, work on your paddle tennis game, walk in the sand of many bodies of water, drop an ice cream cone, and cheer at the baseball park. Take a vacation even if your travels are limited to local pools and nearby state and national parks. Go watch a little league game and take some pictures. Have a picnic. And never get frustrated by the amount of sweat you produce.
Although there is no account of the season in which G-d created the universe within the Torah, Koran, or Old Testament, it strikes me that summer is a most glorious achievement. I conclude it must have been the first season.
The joys of summer. Click on the mind map to expand it.
Think about entering the healthcare system as a patient. You get handed 5 pages of tiny font sheets to fill in with your address, person paying the bills, the medical history of yourself and two generations back every time you go in, You scribble out answers into tiny boxes and hand the forms back. Then they give you 3 small-font pages of legal disclaimers and conditions to read and approve.
Next a nurse takes you aside for a blood pressure reading, a weight assessment, and various other information. He scribbles all of the resuolts into a chart.
Next up the doctor enters. She scans all of the paper you filled out and what the nurse wrote down, and then starts asking you questions in a shotgun approach. When you comment that the answer is still what you wrote down 5 minutes earlier, she is not impressed.
Later the doctor gives you instructions. She goes fast but alo types the suggestions into an EMR (electronic medical record). You may lose the form (common with the cognitive diagnoses I have), not understand everything in the report, and not be able to read 2 point text. but at least you can recover what she wrote.
Don’t they always say a picture is worth 1,000 words? Don’t most people agree with that statement?
For the current aging birth cohort (boomers), images are a way of life. Photos were available when we were born and financially accessible to most by the mid-1960s. The number of pictures increased in newspapers and later on the Internet over the past 50 years. Immediate images and videos from the ubiquitous smartphones have been available to the majority of world-wide families for the past 5 years.
Home black and white television sets became very common in the 1950s and color televisions in the late 1960s.. By the 1990 many US homes had more than one television set. In the 2000s screen (flat panel) sizes at least doubled in size in most homes. 700 channels and 3 TV sets and and nothing on.
We all use images constantly and reading text is going down. We primarily get our news from pictures on the Internet, in print media, and shared with friends or on social media. Pictures are used to influence our attitudes, behaviors, preferences, and to sell us products.
I have been working hard at creating and using images in my own healthcare for the past 9 years after I was diagnosed with a progressive neurocognitive disorder.
About six months ago I had a PET scan of my brain as well as my fourth MRI since 2010. I now have two neurologists. The secondary one (a cognitive neurologist who ordered the scans) emailed me a one page written report wit the results. No images were shown on that report. At my following appointment she discussed the report with me. She commented that there were no images to see. I then asked her if she was going to correct the conceptual typo in the report. In the first summary paragraph of the report it said that my PET scan was normal; the remaining two-thirds of the report gave numbers that indicated portions of my brain were not functioning well. Then the first paragraph was repeated at the end but this time the summary was identical in all but one word which said that my scans indicated significant problems. The doctor sent an email to medical transcription while I was there pointing out the problem.
I asked to see the scan and was told that there was nothing for me to see. I was more than a little surprised by that (well a lot surprised!). I had thought that it would be cool to see which parts of my brain were goners and which were lighting up.
A month later I saw my primary neurologist who has been in charge of my care for more than 9 years. I asked her if she had read the report on my PET scan and last MRI. I explained that I was really surprised that the other neurologist told me that there was nothing for me to see. So she then went to her large clinical display, called up my file and showed me sequential MRI and PET scans. It was pretty easy to see changes in my brain over time. Nice pictures, too. I learned a lot about my treatment and disease progression over time.
A picture is worth 10,000 words. Five scans over 10 years is a treasure trove.
Visual patient-provider information exchanges can be aided by images. Self management and that by a caretaker can be aided by images. Memory can be enhanced with images. An understanding of the problem may be more easily achieved by family members and the patient when supported by images. This is a win-win-win-win situation.
The system I used for creating images to manage information allows me to manage myself better, relieve stress I put on caregivers, understand medical research better, and communicate with my doctors clearly. It primarily uses mind maps. Both neurologists have concluded that I use my techniques to compensate for some of my neurological (brain functioning) problems.
There are about 700 posts on this web site about issues in using mind maps, how to do it, my experiences, and “real” examples of using visual thinking methods as my cognitive functioning declined.
Oh … It should be noted I estimate that using visual methods of processing medical information for ONE YEAR are very inexpensive in comparison to ONE Emergency Room visit, ONE primary health care visit, ONE week of a patient’s period of acceptable cognitive functioning, ONE day of wasted homecare, ONE day out of work for a family caregiver. Now let’s multiply that by the number of Americans receiving healthcare through self pay or public insurance programs (Medicaid, Medicare, others) or private company managed health insurers.
Here’s another mind map about how the healthcare system might be made better (and less expensive) by incorporating health care information into mind maps and passing them around among patients, caregivers, family members, friends, physicians, nurses, and other healthcare professionals.