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!