Inundation

Embrace three feet of snow. Follow with brilliant, clear skies. Notice that it is not that cold. See charming gigantic icicles, dripping. Watch little stream begin to freshen. See clear stream begin to muddy. Find cistern overflowing. Hear a dull "white noise" sort of sound coming from the now numerous rivulets of water. Recognize that puddles are turning to miniature lakes. Realize that there may be flooding in the rivers. Run to get day pack, scrap all plans, other than surveying the now once in 15 year water levels. Jump in car to see largest waterfalls in Baltimore and Harford County. Drive to every decent bridge, as the roaring of waters fuels the pulse. Start to encounter other maddened flood chasers, words tumbling out of their mouths, sputtering epithets and crude uses of the language now not only acceptable, but imperative, descriptions only misappropriated by the urgency of the need to capture, to fix in the mind what can't really be fixed, all is feeling and adrenaline, in the roar of waters and the knowledge that all too soon this too shall pass, like a life cut short, a knife dulled, the frayed edge of the Alz-affected, trying to fix what cannot be solidified, yearning for a way to make it stay, grasping for meaning, yearning for a way to make it part of my soul, to put another totem on the pole, interpreting the life that cannot be lived, the memory that cannot be retained, to find a reliable fixed point knowing all too well there is no fixity, there is no capturing the smoke of desire or the fecundity of water-soaked earth.

The Christmas Party

Ahhh, the Company Christmas Party. Obligatory? Dangerous? Perhaps a history of this annual event might be in order: in the early years...I'm talkin' the days of wine and roses, now...the massive quantities of alcohol delivered by suppliers, the fine black gooey hashish and the obligatory sex in the bathroom, or on the conference room table, the near disasters with cars gone terribly wrong due to substantial mis-judgements in depth perception and blurred vision. Someone always wound up crying or just passing out in the corner...later on, there was the patina of respectability, with only the truly alcoholic boor left slumbering on a little used couch somewhere. As times and morays changed, actual FOOD became the pre-eminent indicator of the worth of the party--if you weren't wolfing down the filet mignon, and the massive quantities of steamed shrimp, then you weren't at the right place. Chocolate became a significant element in the gustatory mix, the lousy sugary fountains of the stuff, and occasionally, some real lugubrious, deeply dark mud of a dark, dark bar of Scharffenberger 86% cacao...OK, I have revealed my chocolate addiction, but more on that later...of course, the frightening shift to playing games and using video game consoles and (hopefully), the occasional actual gambling opportunity still exists and can be intense enough at times to produce a fist fight or at least a spirits induced lapse in judgement...so gird thy loins, prepare for the battle, flame the shots, and don't come crying to me if mayhem lifts its bleary head. I'll be waiting for you tomorrow, happy in my boring, sober alcoholic life, bright-eyed and irritatingly bushy-tailed, with a welcome back to the living, and gratitude for friends far and near. Oh, I've got to go--I just brewed a pot of Papua New Guniea's finest beans and I think I'll go for a walk. Hic finis est.

Human Voices

As a boy, I spent eight years singing in the church choir of St. Paul's School for Boys in Brooklandville, Maryland. I began as a soprano and finally stopped singing as a bass. We had an amazingly warm, wonderful and savvy choirmaster that could coax even the roughest voice to an acceptable sound. We began as sopranos and most of us made it all the way through the vagaries of puberty to continue singing as either tenors or baritones. Our choirmaster, Don McDorman, bless his soul, dished up the perfect combination of discipline and overlooked mischief. If truth were told, Don used his position to maximum effect, by taking himself (for free) and us for the cost of cheap lodging, to several magnificent tours of Europe. We literally sang for our supper, usually waiting in drafty kitchens until being ushered into the castles of wealthy landowners waiting for the entertainment.

As we grew older, we somehow managed to make it so that we had to include Mr. McDorman's daughter and cousin to go along for these European junkets as well, and it must be said that wonderful Peggy McDorman, and her cousin just about sent us hormonal boys right over the edge. In fact, on one such day of exploration, we lost one of our group. He wandered into St. Paul's Cathedral in London, and wound up getting a personal tour of the belfry. There is always something to be said for eschewing the beaten path.

This post, in fact, is occasioned by a magnificent performance held yesterday, December 13, 2009, by the Girls Choir of the National Cathedral. The poise of the singers, the depth of feeling and flawless execution of this most difficult and complex piece seemed effortless on its surface, while it demanded the utmost in execution, timing, and an almost magical serendipity. Perhaps somewhere in some heaven, these girls and our now old boys of years ago may have had the spiritual backing that God sometimes offers the sentient. God bless us all!

Identity Theft!

I may have become the victim of an identity theft. I am very concerned that the person I am is no longer the person that I thought I was. I look in the mirror, and out stares John the Baptist, bedraggled and disheveled, waiting for an outbound hound to take me over the divide and into an unfamiliar river system, filled with tiny leeches and limitless cobwebs. There are caves here, and none but the most lurid lights shine from somewhere up ahead. There is no wind, and the green and purple slime on the dripping walls keep me from the promise I made so long ago, the pact that forces me onward, to never turn back, to find the way, to take another bong hit, when to do so would be folly. I hear the ancient voices of children, the scream in the rigging, the sickening yaw and twist of the hull, the latent memory of hatches popping, ready to ditch, salvaging nothing but the last figurine, the one my mother held, just before the end of alabaster, the dull gleam and a still night, waiting to split an invisible sky, furious veins, erratically branching sulphurously yellow, and yearning for the alchemist. Could I say this day was grand? Or might I consign it to a footnote too long, the last one hundred pages of James Joyce's Ulysses, the Bloomsday celebration forming YES and asking no more yes and the grey dawn gritty on the eyes and yes the soot gone grey and the cold coming he had of it and yes the place where all souls meet sweet and sonorous, limping in, dragging one foot, perturbed and not placated. I look to another day for my succor, I walk without pleasure, unless this chord strikes a love beyond fear.

The Doctor Who Googled

Hold on to your Namenda! Watch your Aricept! Replace your Excelon Patch! This just in! I went to a new ALZ Physician this week. We began with the usual drills, counting backward by sevens, recall of objects and pictures and colors. I began to feel as if there was no hope, when my new physician began telling me all about myself. He had Googled me, and he was reviewing my achievements in business, my interest in birds, and all the other things one can find on the internet. It was a simple thing to do, but no one had ever done this to me. It was almost as if I was being treated like a person, rather than a patient. While it may not matter with regard to my disease process, it surely affected my mental state, and it gave me a strong shot of hope to be able to have a human interaction with my doctor, rather than a clinical description of my (possibly) gently declining condition. I recommend to anyone this simple "Google test" before any visit to the doctor. Another victory for the consumer, courtesy of a smart physician!

Every Eagle Has It's Stream

Bear with me. Somehow I will find a way to make this relevant. So yesterday, a Sunday, I got back from Church, which was uncharacteristically interesting---something about the physiology of death and what happens when you start messing around with ideas about what happens to your body and your soul, if there is such a thing...in any event, as a devotee of the natural world and all its mysteries, I decided to take my soul down to the river...not to pray, not to wade (a little too cool), but to see what I could see...I am an inveterate bird watcher, and as soon as I got to the spot where I could park my car, I hopped out and plunged into the trail-head. As soon as I got into the path, a fully mature Bald Eagle passed right over head, heading downstream--just an aside, I have now realized that every stream in this area now sports a Bald Eagle territory...I have not found the nests, but I am certain that there are defined territories along this stream as well as others in this headwaters of the Little Gunpowder stream AND its more commonly referenced Gunpowder river (larger and more commonly noted in Northern Baltimore County). So, we have a highly functional river system in this area, and the birds are as plentiful as they could be. Not a news flash, but maybe useful to some.

The real interest comes in the fact that this stream system is intertwined with a bygone transportation corridor of significant complexity. There are sizable earthworks that remain...100 foot track beds crisscross the area, with small tunnels at the base to let water through the derangement. In other areas, massive abutments show the way the railroad crossed the stream coming down and back to and from Harford and Baltimore Counties...I am not an historian, but this relic of a bygone "high speed" transportation corridor creates an eerie feeling of connection to the past, and a reminder that all is fungible, doomed to decay, and merely patiently awaiting the next whole-scale change in technology and progress. We know but a little, and what were certainties inevitably become relics. We do not get to choose our time. We cannot have perspective on our own future. Loose garments. The evolution of species. The way of the world in seconds, hours, days, years, decades, eons, and infinities. Look to thyself for a glimpse of eternity. Hic Finis Est.

The Early Alz Support Group

Last night's ALZ support group was the best in a while--there were some new folks, and there was a decent and funny conversation--I ran into someone who lives near my house, which was interesting but not awkward. The usual group was there, plenty of food, and some good laughs. The longer I have to get used to this odd label, the easier it becomes to carry. I feel no stigma, and I think it proper to go ahead and disclose my condition, if for no other reason than to help others accept the diagnosis, and better yet, to revel in the ability to think, laugh, love, spoof, wonder, despair, rage, cry insanely, and otherwise live the best life I can. I think that is the definition of NORMAL. And I am enjoying each moment as they come. I just received a call from a colleague who was sort of tentatively wanting to show his support --he was shy about his call, and he is a man much older than I, but when we had talked for a bit, as always, we realized that we are still the same people, trying to have a good experience, sharing the good times and the memories...I don't go maudlin, there is plenty of fun left in this life, and I think I'll get out of the office, head home, and see if I can scare up some birds to watch--it is the tail end of the fall migration, and as an avid bird watcher, there is no time like the present for catching the hawks. It was a good day.

"Wandering" is not a dirty word.

When I hear the admonition to make sure that ALZ afflicted folk shouldn't "wander" I bristle a bit. I get the point that at certain stages of decline it is sometimes dangerous to oneself and stressful for a caregiver to let the Alz afflicted family member "wander". But in my experience of wandering, I have to say that there is extraordinary therapeutic benefit to being out of doors, wandering, as Wordsworth put it, "lonely as a cloud." I have spent my life wandering aimlessly among the streams and hills and rocks, often wading in rivers up to my waist, in the cool days of Summer and the the crisp afternoons of Fall. From the standpoint of getting lost, in fact, wandering or meandering along a stream is one of the easiest ways NOT to get lost. The river is one way: you're either going up-stream, or down, which makes way-finding pretty easy. Of course, I always have a cell phone with me, and a day-pack with water, extremely dark chocolate, excellent binoculars, a Peterson's Field Guide to the Birds of North America, and a wad of bum-wipe, just in case!

Aside from the physical benefits of exercise, however, there are myriad joys from observing the natural world. When one takes time to actually see the minnows in the water, or the feathers caught in an eddy near molting geese, there is a sense of connectedness and the joy of creation.

Let there be backlight

OK. I am at work. Maybe I should be doing something productive for my employer. Oh, that's right, I am my employer...so this post is all about work. But not necessarily my work. It's about how PR works. I don't like PR. It tries to be something it isn't. Or is it? PR has been used to shape public opinion since God said let there be light...Oh, wait, just move a little bit to the left so you're not upstaging God,wait just three more seconds so the setting sunlight just catches the highlights in God's hair....that's it! Oh, so as I was saying, I don't like PR, because it is fundamentally based on the premise that I can shade the truth enough in my favor to make me look better than the devil. And that is deceptive, right? But my point is that sometimes we need to use these techniques for good! A little white lie, a shading, a spruce up, hooold it! Great shot! That captures it. Or not. It may be just a matter of intention. In order for you to really get the point of this ramble, I may need to heighten the importance of certain passages, and downplay some of the less meaty content. Intention takes a bad rap. Intention is what it's all about. I need you to get this message so you can notice it's importance. If I am not able to communicate the message beyond the clutter of our debris-field existence, then I will die! We must create nodes of unassailable importance. Island nations of reliable, transparent, effective, obviously important content that can shape the human conversation, that can re-create the forum of ideas AND be at play in the fields of the lord. There is no need for certainty in our post-Heisenberg world because it's all flow and play and engaging with other beings to find A truth, not THE truth. Bring on the O'bamanator! Release the hounds! All hail the Simpsons!

Fall Migration in the alzheimer world

I feel sorry for my neurologist. Most people are scared shitless at the thought of a decline in function, despite the fact that there is no cure for Alz. All the news is not fit to print. It’s basically the same story every time you go to his office...count backward by sevens from 100, do a little worse than last quarter, maybe try to get him to smile, try to make some sort of conversation—I try to joke with him, but it doesn’t usually work. It’s stressful for me, and for him it must be a total drag, as he presides over the inevitable decline that is the hallmark of the disease. I bet he didn’t really want to wind up here...in this backwater office, buried in the bowels of arguably the “greatest medical institution of all time...”. (reverb echo effect), (Johns Hopkins preferred bold type face)...maybe he likes it this way. You can’t blame somebody for not curing an incurable disease. You can make jokes during the exam, but the memory tests always seem to confound one, at some point...it’s a no win game, but at least I can go home and watch the Fall migration, with scores of hawks, the occasional falcon, an eagle or two, plenty of broad wings...I don’t care for rarities, and there is comfort in the same species every year, like returning salmon, or the last visit to a childhood fishing hole...even unseen, the wings and calls of the airborne river of thermal delight lightens my spirits and hints at the next life when I can turn the tables, looking down at the upturned binoculars, laughing to see so many avid eyes searching...for me and my friends. Until then, it’s chin up and pass the field guide.

Disclosure

My secrets are benign.

And yet, it took a real act of courage for me to disclose to my colleagues at work that I have Early Onset Alzheimer’s Disease. I did not know what to say. I was afraid that I would be the cause of whispers in the break-room. I was worried that people would treat me differently, that there would be a hush when I walked by. I work in a warm and cordial environment…something that I am proud of, as CEO of a well-respected east-coast advertising agency. As you might expect, the decision to “go public” seemed, at first, like a big hurdle, but when I decided, with the help of my colleagues, to go public with this change in my personal fortunes, a great relief came over me, and I was able to confront the unpleasant prospect of this disease with an ”attitude of gratitude” (yes, it’s corny, but while I am disclosing, I may as well go ahead and own-up to my 24-year membership in Alcoholics Anonymous as well…the mother-lode of corny sayings…)

As many who face this kind of dilemma will attest, most people are interested mostly in themselves (and rightly so—you get sick, you treat your disease, and you walk on). So the real work is to participate in one’s own treatment, advocate for prudent attention to the disease, and use the experience to help others.

Mud Bath

Over the last few weeks, we in the Mid-Atlantic region have become accustomed to rain, rain, more rain and the mud that goes with it. Most people prefer to stay indoors when it is raining. But for me, the threat of a weeks-long stretch of dreary wet weather is an almost irresistible invitation to explore stream behavior when things are in flux. When was the last time you sank to your sternum in thick, black mud? You step, you step, and then, “voila” you are stuck up to your waist in heavy, boot-sucking black molasses, and realize that you are essentially immobile! There is a bit of consternation, a wondering if I will ever see again these precious boots, and a little space of time in which to fully realize the benefits of loss of control. Suction! The seemingly impossible physics of it all injects a thread of panic, but there is no need to become too alarmed. It just takes time, and twisting and a hard pull on the heel, and perhaps a bit of mud-surfing, in which you really—no REALLY—come face to face with the black thick cement. It has the odor of mud, the clean fecundity, the decaying leaves, and after Herculean measures, that extraordinary sound, the voice of the earth giving up its secrets! I suppose there are those who have never been completely inundated by the deep black goo, and I feel for them...but there is always time to branch out! Run toward the rain, sink deep in the flood, enjoy your second birth! Of course, there are certain barriers that must be overcome. In ALZ world, there is always the threat that one will wander off...I know that fills folks with fear, and for good reason. But frankly, and not to suggest a dangerous endeavor, it all depends on where you are on the continuum. I’m still here. Others that I know, are not. Apparently, I will cross the next threshold at some point, but today, I am able to wander to my heart’s content, just as I always have. I stay rigorously in contact with my family; as often as not, to just report an amazing bird sighting or an unusual rock formation...the cell phone is always charged and with me...but of course I don’t rely on it. More likely, I will be found meditating on the bank of a stream or an unusual nest left from last year...and I try always to file a flight plan with my spouse. So far, it’s working. Hic finis est: DONO

Observations of Nature

I would be remiss if I did not mention the extraordinary habits of the ruby-throated hummingbirds and the jewel weed cups their orange flowers offer, and create the need for the deep dive for nectar, as these amazing little irridescent foragers dip voraciously over and over to put on the weight of sugar that will enable these intrepid travelers to return to the sub-tropical realm for a long and richly deserved reward. I should hope to have occasion to follow these brilliant friends down the coast, hopefully all the way down to the tip of Florida, where the Ding Darling and Corkscrew Refuges await the sun bird…hoping to see the Frigate and the red-shouldered hawks, the warblers returning to the sub-tropical, the occasional bobcat, and the rare but possible black bear.  Just to put a point on it, from the vantage of my swampy meadow, I heard this past evening the whinnying call of the screech owl…not an unusual sound to be sure, but one that always brings a joy and a hope for the existence of healthy habitat and the subtle waning of day length. The motion of the spheres claims all as its purview. 

Invasives

Many of you have a lawn of some sort. Green grass, mown frequently in the Summer, a carpet richly manicured, monochromatic, a Scott's or MiracleGro situation...nice, but OH so boring. In my madman's estate, you will find no manicure, but you will be accosted by the piercing pricks of wild rose thickets, horrible blankets of "mile a minute" weed, and extremely pernicious Poison Ivy, masquerading as a "ground cover." On a positive note, these sometimes deeply stubborn invasives carpet whole fields, often actually choking out some of the worst offenders. If only some of these tactics could be applied to the ALZ. Perhaps there is a way to fight fire with fire...perhaps re-directing these "plaques" that were touted as major actors in the ALZ disease process to conflict and confound plaques...like lighting a back fire to put out a forest conflagration...I know it sounds weird, but hey, stranger ideas have become breakthroughs...

Always Worse, Never Better?

The assumption in Alz treatment is just that--always worse, never better. Yes, at this point in the history of recognition and treatment it may seem that this is the case. But I don't think we should count out the marvel that lies within that big sphere above the neck. Because of the strange ability of human consciousness to learn, adapt, assimilate, and synthesize, we can participate in our own healing. We can "work around" difficulties, adapt to new protocols, align our individual consciousness with those of similar experience and broader possibility. The medical model of disease treatment may need to consider that where consciousness, memory, emotion, and intellect are concerned, you are really looking at a continuous feedback loop that MUST involve participation in the ongoing experience of the subject. Our collective experience may very well provide the learning and evolution that we need to "get inside" the disease...and this exploration may open new pathways, both figuratively and literally, to mitigation, and eventually some sort of cure.

Message from Jupiter

Jupiter and her moons were as brightly visible and breathtaking as they could be last night. The brightest light was the planet herself, of course, but the most interesting and spectacular for me, was the astounding array of the planet’s moons. As any ancient astronomer might agree, they “necklaced” the planet in brilliant diadem, the moons intensely piercing, yet as only a pinprick in this gloom-benighted sphere. Easy to understand the effect on the ancients, to make a meaning of the phenomenon, to begin to believe that there may be other worlds, other forces at work. The confluence, or the uneasy truce that represents the mindsets of the poet and the scientist, have come a long way since these odd patterns in the sky became embedded in the primitive mind and beyond. In a way, the progress of human understanding is very comforting—it seems that the species does pretty well in finding ways to circumvent even the most heinous of diseases and conditions. Having lived through the horror of AIDS as an insider/by-stander, for instance, and considering how HIV is now a relatively manageable condition, it might be possible for just about any malady to be overcome, or at least managed. The people who worked so hard for recognition and understanding of the disease for so many years have in part been vindicated, with the caveat of course that the disease is NOT eradicated, and that there is continuous concern and hope for all who have or will have been touched by the disease. In my opinion, there are some helpful parallels between the AIDS epidemic and the fight to overcome Alzheimer’s Disease. The most fundamental, to me, is the way a large population can be motivated, through the tools of media intervention and issue awareness, and applied over time to create a “tipping point” of concern with public and private organizations. NOW is the time in our “war on ALZ” to make the funding commitment, the awareness commitment, and the PRIORITY to invest what it takes to do the job. The alternative is unacceptable...but it is up to those of us who are most affected and concerned to make the plan become a reality.

It's been awhile since I could post to this blog...mainly because I have been on vacation with my family. I went through the normal 3-5 day frustration of adjusting to a new living space (really hard luck...a condo on the beach in Fenwick Island, Delaware!) and am now ensconced in a wonderful ocean-side rental. I feel like I should be one of the many amazing novelists in the romance genre, but, alas, I am only a mediocre writer at best, with an unusual, (to most), problem—I have the ALZ…the dreaded Alzheimer’s disease.

At this point I am out of the closet, so to say. But when I was first diagnosed I was very protective of my status as an ALZ person. I wanted to limit disclosure to my best friends. I wanted to have first right of refusal to reveal my condition. I found that most people are sympathetic, and after a small flurry of gossip, you immediately get, “well I certainly haven’t noticed anything, you seem fine to me…”

Normally, by the time you get around to being ready to disclose yourself, everyone has heard some version of the reality already anyway.

It is extremely difficult to control access to information…(in other words, rumors travel fast, and the truth is normally found out way before any “official” disclosure.)

With “early onset” you are in a nether world. You get the wonderful, comforting experience of knowing how you will probably decline and die. So this is a benefit, right? You can plan. You can savor the joy of living, giving yourself that extra impetus to do those things you always wanted to do. Of course, many of these experiences that you are wanting to have some day, cost money. And if you can believe it, most of the time your plans and those of the economy, do not intersect very nicely at all. And if your luck has run sour, and you have already experienced some very inconvenient twists and turns in this most unpredictable economy of the 2009 variety, that is, an economy of scarcity, recession, and emotional turmoil, then you might not be so sanguine about theses turns of events.

But let’s be optimistic for a moment. Let’s say that this economic factor lessens and things go back to being “normal” for a moment. But hey, with the ALZ, there is no normal. We live on the edge, mark the little hesitations and mnemonic slips, and experience that life of uncertainty.

So we need a creed, a “12 steps”, a motto, a code, a syntax, a “coming out, a set of principles.” What is it only we of the “Sign of the ALZ” can do? What is the source of our power in our identity?

How will you know us?

ALZ Identity:

For starters, the current symbol of the ALZ association is truly weird and creepily dated in my estimation. It’s not the first thing on the list, perhaps, but it’s certainly within the top 5 needs. Something more hopeful, a mark that is not so abstract, not so dull, something that a younger person might not immediately shy away from, perhaps a palette that uses more primary colors…purple is pretty maudlin at times, and to borrow a phrase, “we are not a glum lot.”

So how could this identity evolve?

How will other ALZ folk be able to recognize you?

How will other ALZ be able to help one another?

Online chat, etc. could be extremely valuable for ALZ folk, except that the difficulties of dealing with remote technologies—email, chat, etc., can be more than daunting for those unfamiliar or afraid to try “new” technology. Face to face moderated group interaction is clearly the most direct approach, but the problem of incidence of the disease puts a real strain on any sort of effectiveness.

In the Alcoholics Anonymous world, we have what is known in the program as a sponsor. This person is an Alcoholic, and he or she volunteers to help another person by being a reliable, somewhat experienced resource—a person who is able to communicate and share in the emotional and cognitive difficulties of at least early stage Alz.

In my experience, talking with and supporting other people in the same general condition as another Alz can produce good results, and the ability to gain perspective through empathy with other human beings going through the process of acceptance and learning new ways to function builds confidence, acceptance, and “right-sizing” of this extremely difficult condition.

What will you expect us to do? (WORKS)

Who will help us? (ALLIES)

With whom will we compete?

In what manner (if any) will we relate to spirituality?)

Why should anyone care about this relatively low incidence malady?

We, the keepers and destroyers of ALZ, hereby set forth these guiding principles for the benefit of all humankind:

Age is no barrier to ALZ

ALZ is no barrier to intelligence, wisdom, activism, education, persuasion, intellect or quality of life:

Given the facts of the disease and its progressive nature, however, ALZ folk currently live under grave threats of memory loss, impaired judgment, and the certainty of “loss of self.”

We who are diagnosed, can be a significant tool in the ongoing fight against this disease:

· Through financial contribution

· Through disclosing yourselves to others and to the public

· Through being willing to speak when asked

· Through the support of lobbying efforts

· Through donations of time and treasure, and ultimately, through your deceased body

A Dog's Life

It may be a trite observation, but there is certainly some appeal in the tongue-slapping, impulse driven, high-energy life of the loyal, sometimes manic, sometimes irritating family dog...or, in our case, DOGS. We span the gamut, from the occasional whiner, to the most fearless surf rider...and this summer vacation at the beach would be almost boring if not for Jackson, Buddha, Penny, and Mac...oh, whoops! Mac is not a dog, but he often plays one on TV, and he normally shakes vigorously when emerging from water. In any event, the dogs provide comic relief and other opportunities to create those most sacrosanct of vacation activities...the opportunites to hang out, play, laugh, and get out of hand.

From the ALZ perspective, the fondness of dogs and the presence of other living beings in and of themselves, are therapeutic. We are probably more alike than we think, when it comes to our fellow creatures.

August 5th, 2009 The "Support" Group

In theory, the Alz support group should be an outstanding and promising element of the treatment and management of people like us. Unfortunately, it just doesn’t work. Here’s why.

The greatest barrier to developing highly effective support groups isn’t the desire, the efficacy, or the creativity of those involved. It has all to do with numbers, with INCIDENCE. Fortunately for most, Alz is not a truly common condition. But because of that relatively low incidence, it is difficult to accrue a critical mass of people in any given location. In order to have effective support groups, you have to achieve a critical mass of those who have the disease. One might think that a phone-based call in scenario, but the cognitive limitations of the group would seem to preclude this.

I have been in face-to-face-support groups with a moderator/facilitator that worked well, but again, because of incidence levels, it is hard to get a critical mass of alz folk together on a very regular basis. The “catchment” area for alz participants has to be pretty broad geographically—I live in the suburbs of Baltimore County, and we have a fairly strong alz group that the association hosts, but we can’t get more than five+ active alz-diagnosed folk on a monthly basis.

If only the incidence level was that of Alcoholics Anonymous! As it stands, we are lucky to be able to meet every month. AA has done some very innovative  work using phone meetings, but again, the challenges with cognitive difficulties make it pretty unlikely that meaningful support could take hold.

Perhaps the hospitals in the region could provide some help with logistics and facilitation…but no I am getting in over my head.

I’ve got to go now—if anyone has thoughts or ideas, contact me at:

Chuck Donofrio

cdonofrio@cartondonofrio.com

August 4th, 2009 Talkin' Shop

One of the great things about Alcoholics Anonymous is the range of people you meet. While I have not yet encountered any fellow AA’s who are also in the ALZ club, to my knowledge, it’s probably just a matter of time. Lots of people think that alcoholism is related to Alzheimer’s, but that doesn’t seem to bear out in actual clinical practice, to my knowledge—and in fact it may not be germane at all. In general, I think that ALZ is not well understood in the medical profession (not clinically speaking within the ALZ specialty certainly, but one gets the sense that the day in, day out, of the Alz specialist may be something of a backwater.) It seems to be a distasteful discussion topic among physicians and other top-flite  medical personnel, probably because it is stigmatized as incurable. In my own experience, I have tried all the major medications for the disease:

Aricept: the first one I tried; made me drowsy and somewhat listless. I felt as if I was going downhill.

Namenda: No change to speak of. But the most heinous aspect of this particular drug is the incredibly stupid name they gave the drug. I mean, think about it for minute…Name Ender…just what you want in an outcome, the loss of identity, the disappearance of self, the decay of memory and function…Please,  someone hire a copywriter! (My ad agency will do the job for a mere 10 percent of sales!)…

Excelon Patch: The difference between the others and the patch is like night and day for me. First of all, it gives me a sense of participation in the regimen—that might sound weird, but I want to be responsible for my own care to the extent I can be. With the patch there is a nice little routine that develops. First of all, you can adhere the patch to any part of your body. Of course, you don’t want to jump in the shower just after you do it, necessarily, but the morning prep regimen quickly becomes a ritual. You’re supposed to change the site of adherence daily, but I haven’t found that to be an issue. Occasionally you get a little bit of skin irritation, but it is minimal. It comes with a small cutter made just for opening the  “Patch Pouch” (sorry, couldn’t resist), and there is something satisfying about using the cutter…it also leaves a trail, of sorts, so if you get confused, the pouch debris can sometimes help you remember whether or not you already opened one.

The only problem with this alternative is the cost. If you are constrained by money, it can be a difficult nut to cover. On the other hand, what’s it worth to continue to function at a normal level? If I were Excelon, I would be addressing the cost issue, but that’s a discussion that is out of my league.

I think the marketing of these drugs needs to be taken up a notch. There is plenty of money in this category, and if the consumer were to be able to participate in their own care decisions and perhaps design a group discount for locking in a “contract” of sorts, the patch might be more available to a wider range of people.

Sunday August 2nd, 2009 - Sorry Game

Tired of the same old boring test of memory acuity that your alz physician has you take every 4-six months or so? Counting back by sevens, the colored balls, the intersecting circles, the same old shapes and their order…well now, there is an all new test, guaranteed to ascend to the gold standard, the mother of all memory tests, if you will. It is the “Sorry” Index of Mnemonic  Acuity (most people in the know just shorten it to the Mnem-Cat of general memory acuity)

As an aside, you may remember that the Sorry® Index was actually invented by Milton-Bradley…yep, the very same folks who gave you the Board games, and given their pre-eminent place in the diadem of all board (sometimes cynically known as “bored” games) you can see just how integral the family friendly movement has been to their success AND to the thousands of family members who are just now beginning to understand why some of our friends and relatives are just not winning as often as they should be.

On something of a” downer” note, it was several years ago now that the innocuous little “Sorry” game helped reveal my own cognitive deficiencies, and so I have a bit of love/hate for this particular way to pass the time.

This post was generated, however, by coming home to the rare occasion of being asked to join with my 11th grade daughter and college-age daughter and her beau for a late night game. Bottom line, however is this: I certainly don’t miss the board games. I participate in a wide range of activities. I am an avid reader, and for now, all is well.

Caffeine Effective Alzheimer's Treatment

So did ya see the news! Coffee drinkers and alz sufferers unite! This just in!

“Researchers Find Caffeine Effective Alzheimer’s Treatment”

U of Fla  researcher Gary Arendash believes coffee drinkers “are not just protecting themselves, but actually treating symptoms that might appear.” Love the java! I knew the coffee shop around the corner could do something for me other than empty my wallet! Perhaps mandatory coffee breaks are just around the corner. Maybe we ‘ll see an up-tick with regard to artisanal whole bean consumption. Better coffee makes a better world.  In fact, fine whole bean consumption may become mandatory…a new drug delivery system that people actually enjoy using…(alright, I know that some of you are saying to yourselves that I’ve gone too far, but really, you know you are already addicted, why not revel in your new found acuity borne of King CAFFEINE!!!

I can see that I am, like Donnie in the Big Lebowski, now well over the line, so I’ll just stop this thread…for now.

Whoops, I can’t really stop. You know, it may be no coincidence that the growth of fine coffees from around the world is mushrooming, it may be a self-fulfilling prophecy borne of the need to reduce alz type cognitive maladies and get everyone addicted to coffee. It sure beats end stage outcomes! OK, that’s too much of a bummer, but who knows, with interest gaining all the time, perhaps there is hope. But regardless, the new wave of medicinal caffiene  applications should at least amp up the  neutra-ceutical field. Kona Gold for everyone!

PICKING UP THE PIECES

Yesterday turned out to be a bad day. I wrote a fantastic piece for the blog here, if I do say so myself, and then promptly had a Force Five alz meltdown that sent my pearls back into the aether. Yea, yea, it can happen to anyone, but when you f**ck up as a member of the Alz club, any mistake can bring into excruciating focus the knell tolling from the top of the hill…banging away at the one irrefutable reality of this disease, which is continual reinforcement that I’ve got it, and everyone else is damned glad they don’t. Enough Whining.

Looking around my office, I became acutely aware that I hadn’t spoken to quite a number of wonderful colleagues in a long time, and  I discovered an under-utilized resource…you’ll never believe it! They’re called friends! You know, people who like you, sometimes even love you, that have your best interests at heart, that are interested in you for your own sake, people that would sacrifice to help you, point out positive ways of dealing with difficult situations…well I don’t know about you, but that is about the last thing on my mind, proving that the last thing on my mind might need to be moved up to the front of the class, so I can remember that my own happiness is a legitimate concern. Alright, I am now too close to Stewart Smalley on Saturday Night Live, because I can hear the dulcent tones of “you’re good enough, you’re smart enough, and gosh darn it, I love you!”  I promise not to continue this thread for too many posts!

Thank you dear, forebearing, reader. HFE

JULY 28, 09 THE CLOAK OF INVISIBILITY

Harry Potter’s got it right. In fact, everyone should have a cloak. But if you have Alzheimer’s, relax. You’re one step ahead! You’ve already got one.  People with Alzheimer’s come equipped with the ability to be invisible to all but the initiated. I can certainly spot one…but then, I’m already on the inside.  I see the nervous glances when a word or phrase eludes me. I wince when it becomes clear that I just repeated myself. The land-mines are everywhere, and once you’re a confirmed case, there is just no turning back. The expectation is a self-fulfilling prophecy. And by and large, the prophecy is doom.

Hi! I’m from the Alzheimer’s Association and I’m here to help.

NOT.

This organization is ineffective at best. Of course it is under-funded, but then again most non-profits are.  I tried to get some information at the national level. Hello! Anybody home? I would love to have the responsibility for the marketing communications for the national organization. Real people, doing real things---situations that baffle and frustrate, u-tube videos by medical and psychological experts, “average Joe” testimonials and just plain straight out information and conversation with those of us who are in the thick of it. We don’t need a memory walk. We need a here and now movement to focus on the disease: the research, the drugs, the funding, and MOST IMPORTANTLY, the will to tackle this baffling, frightening, frustrating, and eventually yielding puzzle , the solution to which will give us a major step forward in the overall quest for breakthroughs in brain science and beyond.

PS: I do not expect to live to see the day when this malady becomes a distant memory, but you never know!

CATACLYSMIC DELUGE

 

Yesterday’s actual, not metaphorical, deluge of truly cataclysmic proportions here in rural Maryland (locally, Glen Arm) provided the ultimate objective correlative for the emotional and “adrenalized” terrain that all of us Alz’s experience from time to time. For some reason, the extraordinarily energetic and chaotic backdrop of a force five mini-burst of hail, falling and flying trees, flooding and just good old, all out mayhem puts one in mind of the way my brain processes the terror, the mania, the fury and the frustration of an all out “why do I have to have Alzheimer’s“ fit.

 

On the other hand, there is nothing like the fury of nature to put me in my place…I am a small speck, my life is a nano-second, and the only intrinsic value of my life is the gathering in of energy, experience, love and immersion in the now.  In a sense, this appreciation for the moment can be an extraordinary gift for the alz sufferer—we know as no others, the peculiar horror, poignancy, and concentrated love that can only be experienced by those who can watch with eyes wide shut as we see god relentlessly perfecting an experience designed to concentrate our feeling, our love, and the certain knowledge that we walk in the valley of the shadow, and allow ourselves to experience the inexorable decline. It’s all good…but sometimes it doesn’t feel that way.

GLITCHWATCH 1000

Greetings from within the diseased mind of an Alzheimer’s sufferer!

If you want to stay out of the locked ward, just follow these simple instructions:

1. Remember to wear a belt. You may not actually need a belt with which to hold up your pants, but if you go out without a belt, chances are you are in for a raised eyebrow, confirming decline and lack of awareness. Stay spiffy!
2. Eat well, but don’t overdo it—slim, fit and well-groomed is the order of the day. So go easy on the carbs; and never let anyone see you wolfing down potato chips while standing over the snack drawer!
3. Common courtesies go a long way, especially with women your age or older.
4. Keep a small notebook handy…not just for mnemonic assistance, but to jot down the extraordinary thoughts and ideas that are worth saving for later. You never know when a great idea will wander onto the scene….but, then again, don’t hold your breath!