El Loco Pasa
First, a quick note about the title. "El Loco Pasa" is intended to convey the passage of a locomotive in a railroad context, partly in homage to my lifelong hobby of model railroading. In a more subtle meaning, I have nicknamed myself recently as "El Loco" meaning "locomotive" and also a "little crazy." I have been humorously called a little bit crazy at different times in my life, and now is no exception. In the fall of 2019 I was diagnosed with Alzheimer's Disease, much to my surprise, consternation, and not a small amount of terror. So the name is a humorous approach to a sometimes serious subject.
The story leading up to it is not important, other than to note that it occurred over several subsequent sessions with my doctor, a geriatric physician, in Santa Fe who had been my physician since moving here in the fall of 2017. At each annual checkup a short cognitive test is performed as required by Medicare for seniors (I am 77 years old), and I performed the first two with flying colors. I also occasionally see a specialist who specializes in dementia, which has been very useful in gaining more information about what to expect. (Hint: The future ain't pretty.)
On one of these early medical occasions, I did not perform adequately, according to the cognitive
norms. I was quite surprised, and so we conducted some other tests with no problems. Subsequently, I took the tests again, with slight variations (one has the patient draw a clock with numbers and hour and second hands to correspond with a particular time the physician indicates and which you do not know in advance). On one of those tests I did not draw the hands correctly, to my great surprise.
Based on these and some other similar tests, I was diagnosed first with mild cognitive impairment, then cognitive impairment, then mild Alzheimer's Disease, and the final winning grand prize, full and complete Alzheimer's Disease.
I - of course - was in almost total denial, since to me I functioned effectively in all worldly matters, I thought, until my wife Liz said that she had seen similar memory issues in me but had not made a big deal out of them.
I am now beginning to notice that although I can handle all matters thoroughly, that sometimes I do forget things, or fail to notice some errors. This is highly difficult for me to accept, but there is the evidence, and after all, I am an evidence-based engineer, albeit a frail human (more about that later).
So I proceeded on a course of action on all fronts. I am now taking every vitamin supplement known to mankind (you'll note throughout these diaries that I tend to exaggerate for effect, in an attempt to laugh off bad news), since studies show that nutrition and exercise are two effective antidotes to memory issues, and I have greatly increased my use of and awareness of those remedies in the three years or so I have been in Santa Fe. I have become a nutritional supplement "junkie", if you will. In fact, I am in my best physical shape of my life by most standards (Body Mass Index around 23, where it used to be over 30), my lowest weight in perhaps forty years, far better than my pudgy self throughout my life to date, and feel great. It's just that I can't remember things sometimes. And I even sometimes revert to denial, but not overly so. And more often humor, as you will see, which is my primary coping mechanism. I also am now seeing that I am beginning to run out of the latter coping mechanism, but the reservoir of humor is replenished enough that I can mostly laugh, for now.
In addition, I am taking Aricept (donepezil), and Namenda, and Memantine and a few others thrown in just for good measure, all prescription medications. They are generally useful in the first few years of mild dementia, I am told. They mostly are designed to handle depression, and seem to be doing a good job. I'm thinking that when I emerge from my dementia, I'll not tell anyone so I can continue to take these medications, since I feel pretty good with them. Or maybe not.
I have no idea if they help my memory since there is no "control" situation, meaning that I don't know how I would be memory-wise were I not taking it. I do think that there is little effect, but I simply don't know. I suspect it would be worse, but then I've always been an optimist. The more, the merrier, has been my often-used remedy for discomfort throughout my life, a precept which I am now reluctantly re-examining.
As my entry into dementia seems to be increasing at the present time, I expect some perceived changes in my writing ability, and want to put down some record of this from the standpoint of the afflicted patient (a term I loathe and despise, but that is the most appropriate for the general Reader), as perhaps some way to contribute to the dialogue about mental health from a different viewpoint, while I am still able to do so. This has not been done very often, as far as my research shows, so it will be part of my legacy.
So what really is the purpose of this website? I thought it would be kind and generous of me to donate my wit and humor (and denial) to describe how one can come to accept and deal with this type of bad news. It's good therapy for me, I'm a passable writer, and rather than donate my body to science, I could donate this website to whatever use others may find for it, as long as Liz keeps paying the website tab.
I have no idea at this point what the outcome or direction or content will be, and will simply go with the flow and see what happens. Perhaps I'll discover something in me that could be useful to me or others, or not. I will "not go gentle into that good night," at least right now. I am currently in the "raging against the dying of the light" portion of my "illness." If these words are meaningless to you, Google Dylan Thomas. He understands.
I invite you to come along for the ride and view the somewhat irregular and hopefully illuminating diary entries that will follow as time and my whims and humor permit.
One final note: The cover page shows cairns (rock piles to mark the way) in a small canyon leading to an old grave site nearby. I was not trying to be wittingly morbid, but saw that as we get older in life, some look at their life and ask eternal questions about purpose and contribution and impact and meaning. Ultimately, the cairns of whatever type we leave on our path finally lead to the same resting place; the difference is perhaps one's view of their usefulness and value to those who share, or come after, our own journey. When we came here about three years ago, there was one cairn in that small canyon, and we ended up meeting the "neighbor" who placed it there. There are now five cairns there; the original one, and the four that Liz and I have now placed along that path, mostly on our daily walks. They are my silent sentinels, yet I can hear their whisperings to me when I pass by. One day the whispers said to me that I should consider writing about this experience; the only other book I read when I started this journey was "Still Alice" which was my first look at what to expect. I have not been disappointed, but have been terrified, and continue to be so to this moment.