Washington DC
In my last
post I wrote about the possibilities for error that lie in the fuzzy
borders around each of the current diagnostic criteria for Alzheimer’s. I’d like to tie together some loose ends from
that post.
New Diagnostic Criteria Involving PET Scans and Other
“Biomarkers”
The diagnostic criteria for Alzheimer’s are becoming
more precise and reliable as new laboratory and x-ray tests for physical
evidence (called “biomarkers”) become available. The current definitions (that I examined in
the last
post) use only the outward symptoms of the disease. Once biomarkers are added to the diagnostic
criteria, the diagnosis becomes more reliable. The PET brain scans
now being evaluated, for instance, can see the amyloid protein deposits in
the brain that are directly associated with Alzheimer’s. Analysis of cerebrospinal fluid can detect the
tau
protein that is similarly associated with Alzheimer’s. Much research is still being conducted to
determine exactly how to incorporate
these biomarkers into the diagnosis.
Some things are already very useful. If the PET scan for amyloid is negative, for
instance, you almost certainly don’t have Alzheimer’s. (If there is amyloid, it’s not so clear since
about 20% of those people apparently do not have Alzheimer’s.) But the several biomarkers that will soon be
available in clinical practice will make the diagnosis of Alzheimer’s much more
reliable.
The Trouble with Anecdotes
My experience of the past sixteen months is a good
example of the problems with anecdotal evidence, that is, individual stories that
cannot be statistically evaluated. Over
the past year, friends and readers have recommended dozens of different
treatments (sometimes even suggesting that doctors or drug companies are hiding
them from us). These sincere recommendations
have usually been based on stories of individual patients who took the
treatments and got better. I responded
to the comments (here
and here)
that I probably wouldn’t even look into the suggested treatment because,
basically, I trusted medical science to look into any reasonable possibility
for cure. If medical science wasn’t looking
into it, I wasn’t going to bother, either.
I keep myself healthy with diet and exercise, but I haven’t taken any
special treatments.
What might have happened if I had taken, say, coconut
oil, as a treatment? How many would
interpret my “cure” as “proof” that coconut oil worked. In reality, it would have been just a coincidence. The purpose of rigorous scientific testing is
to make sure that coincidences, improvements based on the placebo effect, original
misdiagnoses (as in my case) or other issues are not involved.
Isn’t it possible, some of my friends ask, that a new
untested treatment works and will later be scientifically justified. Of course.
I criticize no one who wants to try one of the many suggested treatments. But I wasn’t personally willing to spend my
emotional energy going back and forth trying one or another on the basis of the
latest anecdotes. I know some readers
will jump on me for this, but, before you comment, please at least go back and
read the two posts (here
and here)
that I wrote on the subject.
It’s a Miracle Anyway
In spite of all I’ve written above, I still experience
this “cure” as a miracle. It’s not that
the natural laws of the universe have been overruled or suspended or that
something scientifically impossible has actually happened. Finding myself free of Alzheimer’s is a
miracle because it’s something completely unexpected, something that I would
have considered impossible a year ago, something that gives me hope, something
that returns my life when it seemed to be disappearing. Sure, I can go back and explain each step scientifically,
as I have over the last several posts.
What has happened broke no laws of science … but it’s nevertheless a
miracle.
A New Title for My Blog
Given that I don’t have Alzheimer’s and that my
cognitive impairment is not progressing, the title of this blog, “Watching the
Lights Go Out,” seems to me a bit inappropriate, so I’m inviting suggestions
for a new title (or, perhaps, reasons to keep this title). My son-in-law suggests “Stop Playing with the
Dimmer.” What are your suggestions?
How about "Trying to keep the lights on"?
ReplyDeleteI would suggest "Seeking Light." It would be in keeping with your theme of lights, and "light" works on so many levels. It would also fit in with your previous entries. I never read your blog as written by someone passively watching his light disappear, but rather by someone who was seeking an understanding of all aspects of life.
ReplyDeleteD'accord. "Seeking Light" covers such a range of arenas, which we all face in whichever stage of life we find ourselves. Great. Sodium
DeleteI am pleased despite the anguish it caused, that you were misdiagnosed. This is a cautionary note. As you observed somewhere around 20 percent (the highest figure that I have seen is 30 percent) of people have a substantial amount of amyloid in their brain but probably do not have Alzheimer's disease. The reverse may also be true. Eli Lilly who has had little success with amyloid antibodies and who has an imaging agent for amyloid found that 25 percent of their participants in their study who they thought had Alzheimer's disease had no amyloid in their brains. Their conclusion was that they probably did not have Alzheimer's disease. But since amyloid contributes to Alzheimer's disease but does not cause it, it is quite likely that most of these people had Alzheimer's disease.
ReplyDeleteAlzheimer's Disease without Amyloid Plaques
The pathway that leads to the formation of the amyloid precursor protein is the same pathway that leads to the formation of the cause of Alzheimer's disease: peroxynitrites. Everyone with Alzheimer's disease will have at least the precursor protein in their brain.
Amyloid plaques have long been thought to be the cause of neuron loss in Alzheimer’s disease. Now researchers report that excess of mutated amyloid precursor protein (APP) inside the neurons is sufficient to induce neuron death. The report challenges the notion that amyloid deposits outside of the cells are necessary for neuron death in Alzheimer’s disease.
Their results also indicate that by reducing the amount of APP within neurons it may be possible to rescue them.
Amyloid oligomers and plaques, though, require the release of intracellular calcium, and some common compounds such as caffeine and heparin can inhibit this release. Thus, there are people with little or no amyloid in their brain that still have Alzheimer's disease.
On the other hand, if a person has a good internal antioxidant system, peroxynitrite levels will be reduced and the damage that they do to the brain will be less even as amyloid accumulates. Their mild cognitive impairment may never convert to Alzheimer's disease.
The key to preventing and treating Alzheimer's disease is to inhibit the production of peroxynitrites and to scavenge them. A Mediterranean or diet from India contains a variety of spices, herbs, and other plant polyphenols that inhibit the formation of peroxynitrites. They also scavenge peroxynitrites, so that according to one study a Mediterranean diet on average extended a person's life with Alzheimer's disease by almost four years.
Neurology. 2007 Sep 11;69(11):1084-93.
Mediterranean diet and Alzheimer disease mortality.
Scarmeas N, Luchsinger JA, Mayeux R, Stern Y.
3.91 years' longer survival...Adherence to the Mediterranean diet (MeDi) may affect not only risk for Alzheimer disease (AD) but also subsequent disease course: Higher adherence to the MeDi is associated with lower mortality in AD. The gradual reduction in mortality risk for higher MeDi adherence tertiles suggests a possible dose-response effect.
In my experience, anecdotes and case studies often turn out to be proven true through clinical trials. The best peroxynitrite scavengers have not only stopped the progression of Alzheimer's disease, they have reversed some aspects of the disease (see study by Jimbo with rosemary, lemon, orange, and lavender essential oils via aromatherapy, Akhondzadeh using a carefully prepared tincture of lemon balm essential oil, and Heo using heat-processed ginseng). The failure to follow up on these studies in the United States is inexcusable.
Many thanks for your detailed comment.
DeleteI had been aware that good diet might have an impact in slowing at least the symptoms of the disease, but I had not been aware of the specific work done on the Mediterranean diet. Checking the Internet, there seems to be a fair number of scientific studies (although I have no expertise in determining the rigor of such studies) that demonstrate a positive impact of the Mediterranean diet on symptoms, although mostly over a fairly short period of time. While those results are obviously important, they are very short-term studies that don’t purport to investigate the long-term impact on the course of the disease itself.
But the specific study you referenced from a 2007 journal Neurology appears, as you say, to show an average increase in longevity of almost 4 years. As I’m sure you know, one such study doesn’t prove much (there are many other variables that could have affected the result), but the study certainly points to the importance of replicating the study and other scientific follow. on the basis of what I’ve learned today from a moderately extensive search of Google, the failure to follow up on these studies seems, is hard to understand. Given that one study published seven years ago, I am very surprised to find no other similar studies anywhere.
The Mediterranean diet, although I have no experience with it myself, seems to be a sensible, recommended diet for general health anyway.
The evidence for aromatherapy is, as you imply, less scientifically impressive, but, again, is not something I’m very competent to judge.
"Watching the Lights"
ReplyDeleteBecause the lights were not.
Blessings David.
In this beautitul day, Valentine's Day.
Just because the lights came back on does not mean they did not go out for a short period of time. Which is implied in your SIL's suggested title but, I think, is not as clear. I'm comfortable with you staying with your original title as this is still about watching the lights to see what they will do next. We all know they will not stay at full brightness forever.
ReplyDeleteDavid,
ReplyDeletei like the dimmer concept.
i once used word play on rheostat to title a sermon : "theo-static"
it's there if you find it at all amusing or helpful.
most of all, thanks for a continuing witness to the wonder and even miracle of facing up to each day with gratitude, humility, perspective and faith.
some might agree that theology is the consideration of God in the midst our human relationships to what is divine, holy, true, good, &/or eternal. we are all in some sense limited by time, fear, health, imagination &/or tradition. we are all living in the light of God, but most of us are lucky / blessed to have the switch turned on at all, and even then things are rheo-statically dim.
your blog has value to me, and to other readers, I'm sure. thanks. I'm pleased for you that the process of living, loving and learning continues without the probability of Alzheimer's.
so, you leave the group with a specific diagnosis and rejoin the majority of us who live trying to make sense of our own label-less frailties and foibles. there is often quite a bit of static in living with enlightened meaning and purpose, always.
cheers.
Jeff Barton
denali ac 73
Rage against the dying of the light
ReplyDeletereflections on aging, slipping and sliding vers dottage, Sliding towards SENESCENCE
ReplyDeleteHad to laugh at your son-in-law's suggestion -- reminds me of the thousand times I've told my son, "It's a light, not a toy...."
ReplyDeleteI kind of like the phrase "an uncertain mind," which is already in your subtitle.
Watching the light.
ReplyDeleteas time goes on, it's what we All do anyway.....Alz or not.
Sharing The Light of Later Years. (Each season has unique patterns of light)
ReplyDeleteStop me if you've heard this one, but perhaps a new title could be, "How many doctors does it take to change a light bulb?"
ReplyDeleteBTW, thanks for sharing your story and experience. I suppose I should explain my title suggestion somewhat. My sense of dealing with the medical community over the years, through various types of disease (including my dad's diagnosis of Alz many years ago) is that you must advocate for yourself. Not a new idea at all, but one that until you are faced with a difficult and personal medical situation, you may not fully appreciate. Despite the professional certifications and long years of training that is required of doctors, nurses and others it ultimately is up to you to do the research and push through the barriers to get to an accurate diagnosis and appropriate treatment. It is natural to trust in those charged for your care and well being, but it is equally necessary to question, press your case and make changes in your care choices as required.
ReplyDeleteBest wishes to you and your loved ones as you adapt to this new chapter in your life, and in finding that your days are brighter ahead!