I was diagnosed with neurodegenerative disease in 2009.
There is a long-standing tradition in the fields of psychology and medicine of individual (or case) studies in the early stages of studying a disease, a possible treatment, a theory, or basic research studies.
Often these studies are done to open a new field for exploration or to “seed” progress in some new ideas. In psychology, many of the theories of learning and behavior change originated from studies of single or a few individuals. In medicine, most progress starts with a skilled clinician identifying a new symptom or pattern of symptoms and biomarkers or response to a drug in a single or few individuals.
Single individual studies are widely used and considered valid by many. But they are not considered to be valid (by themselves) by the majority of the professional community.
The Number 1 NO-NO in single individual studies is to study yourself. The reasoning goes that one cannot accurately describe oneself. The commonsense part of me says that rejecting such information is STOOPID but the well-trained methodologist in me says to eliminate the possible bias by having an independent party (presumably a physician or psychologist or equally qualified and appropriate professional) conduct the study.
So I ignored my commonsense and asked more than a dozen MDs and PhDs if they would like to take advantage of the fact that I had more than 35 years of experience describing behaviors and feelings and treatments and outcomes and also was taking lots of careful notes as I tried a number of techniques to deal with the disease. Most could have also found out on the Internet that I have hundred of peer-reviewed scientific publications and was myself considered one of the methodology gods. NO takers to date to use my information or expertise. I think all of the people I approached were scared off by what their professional peers, tenure boards, department chairs, journal editors, ethics boards, and the current Methodology Gods might say. Most just ignored the “demented” person and probably felt sorry for me. One proposed that I spend thousands of dollars (which I had lost due to the brain degeneration and its effects on my financial decision making) to come to the other side of the USA so he could examine me (he had lots of grants so I informed him that I knew he would have travel funds in his many projects and that if he wanted to do research on me I would go through the hassle of a 2300 mile one-way trip he could use his research funds to pay for the ticket). After that he never responded to my email.
Although I was ignored by the academics, I took solace from the fact that about 120,000 unique individuals in social media (Twitter, Google+, Scoop.it, Linked) choose to follow my tweets, blogs, and comments. They seem to place some confidence in my judgments and communication skills. I did not disclose that I had dementia until I had about 85,000 followers but I did not dramatically lose followers after I made the announcement. The community of those who follow me is heavily weighted toward medical and healthcare professionals and organizations, psychologists, social workers, persons with dementia, care givers, family members, and mind mappers. Many of the physicians who follow me are neurologists and psychiatrists and I have healthcare followers in more than 100 countries.
So I struck out on my own. As I think about it now, I do wonder if perhaps those who are self-proclaimed independent observers-researchers could, at this time, study a person with neurodegeneration-dementia with their academic and somewhat unreal methodologies and understand the experience of the condition. Having dementia and also being able to think well at least part of the time is not something these folks or the general public “get.” So far as I know, nobody with my level of relevant training and dementia has ever come forward and states that there are a lot of methods you can do to reorganize your thinking. I used them to improve my life and trajectory through the stages of the disease, so far as I can tell. Those without dementia or cognitive impairment cannot understand that while it is a difficult mountain to climb, it is not impossible to reach the summit at least in the earlier stages of neurodegeneration and that the goal is to have a “good and enjoyable life” for as long as possible, not to “cure” the brain with better ways of storing information, keeping notes and reminders, or decision making.
Once when I questioned whether I should share all of the information I present in this blog in front of so many people my neurologist at an appointment told me that if 100,000 people were following me I should not be concerned as at any time they concluded I was wrong they could (and would) unfollow and simply not follow the information I was presenting me. While I would never expect any of my own doctors to follow my blog, she admitted that she “looked in from time to time.”
So I acknowledge to the Methodology Gods that I have sinned but I am not very worried about being thrown in the volcano for the deviation. After all, somebody with neurodegeneration-dementia has to step up and tell the “experts” that experience (in my case the synergy of the professional training and personal history) counts for a lot and and I have used some real data I have carefully collected that they should consider and use to design more studies.
So that’s it. I sinned, I am not contrite about it, and you can judge from what I have written here on my blog whether I am delusional or a thoughtful scientist. My own judgment is that both characterizations are probably true depending upon the day of the week, phase of the moon, whether my dog has been insisting that I go out in the woods with her to chase critters or whether I am suffering that day from the horrible headaches caused by the drugs (never proven to be effective or approved by the FDA for treating neurodegeneration of the type I have) that I am prescribed off-label by well-intentioned doctors hoping that I could be one of a tiny group for whom the drugs might work, at least a little for a little while. Pretty much all of the time I am glad I conducted my studies using my accumulated skills from 35 years. I am very confident that I have accurately identified what works for me. The “problem” is that there is no guarantee that my experience will be your experience. More and larger studies may be able to determine how robust my findings are and whether they can be generalized to different types of individuals with various types of dementia. My own work does not lead directly to medical or psychological advice and you should ALWAYS consult a physician or other licensed medical provider to obtain treatment.
Click on the image to expand it.
The following slide presentation shows the mind map in smaller sections. The presentation will run automatically or you might wish to click the pause button in the presentation and manually navigate through the presentation using the right and left arrow keys.
Right from the beginning I figured that I should put my professional training and decades of experience observing behaviors of individuals, groups, and organization to use in understanding a little more about the usefulness of cognitive-behavioral tools. “Poor methodology” aside (in the environment of limited time and no research funding I faced), I think that my “research” needs to be continued by other persons living with dementia as well as skilled medical researchers (not living with dementia). I constructed the Hubaisms blog to serve as something of a roadmap and a repository of my work for the future as I expect that in 1-2 years (mid-late 2017) I will have degenerated enough so that I can no longer continue the work myself or the effects of living with the disease and a compromised immune system for a number of years will take their full toll.
This is my last research project of a very productive research career. I am proud of it. If you think the work is worth knowing about, I hope you will use the various forms of social media to point others toward this blog and specifically toward the dementia posts. I plan to continue the one subject study as long as I can.
One final note. Most of the methods of living well with dementia I test are relatively inexpensive (less than the cost of one cup of gourmet coffee a day in a coffee shop if you do not already own a PC or Mac or tablet computer which undoubted you do as you are reading this blog). If you own a PC or Mac or tablet, I estimate the cost to apply or use the techniques is less than the cost of one plain-ole old-fashioned coffee without the designer name or copper tubes. These costs should be within the means of most people with dementia or pensioners with at most, a small lifestyle change required.