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.
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.