I Have This Terminal Disease,
It Moves So Slow It Is Killing Me!
One of 25 Best Alzheimer’s Blogs of 2012
Mike Donohue is a brave man. Courageous, direct, and bold, his blog energizes readers with a passion for action. Dementia Endured gives a hint in the title as to the nature of this talented writer: he will endure. And with a personality like Mike’s, it’s easy to believe that he shall overcome, as well!
His life experiences are opened to the reader, and his journey recovering from alcoholism to adjusting to Alzheimer’s holds its own fascination for visitors to his site. Mike’s strength and determination will remind readers that dementias are one area in which it’s best not to hold any punches.
Thursday, July 29, 2010
July 28, 2010, 9:00 AM
By DALE RUSSAKOFF
The National Council on Aging has released a poll showing that a majority of senior citizens are uninformed about the impact of the federal health care law on Medicare and Medicaid benefits.
The national survey of 636 men and women ages 65 and over, conducted by Harris Interactive for the council, were unaware that the new law gradually increases prescription drug coverage, does not cut basic Medicare benefits in the future, and provides for an annual wellness visit to a doctor paid for by Medicare.
“Seniors need to know the key facts about health reform so that they can be informed consumers and educated citizens,” said James Firman, the council’s president and chief executive. The organization, which lobbied for the new law, is introducing a national campaign to inform older people about its effects through town hall meetings and informational materials distributed through local agencies focused on aging.
The survey found respondents unaware of more general consequences of the law, too, such as projections that it will extend the solvency of the Medicare Trust Fund to 2026 and reduce the federal budget deficit.
Perhaps more surprising was that many seniors were unaware of programs that would benefit them. For example, only 33 percent knew about the free wellness visit to their doctor each year, beginning in 2011. (Currently, only the first visit is free.)
Most survey respondents gave the wrong answer when asked whether the law gradually closes the gap in Medicare prescription drug coverage — the so-called doughnut hole — and allots $250 to those caught in the gap this year.
Forty-two percent said, correctly, that the law does both. But 12 percent said it did not and 45 percent didn’t know enough to answer.
The poll and informational materials are available at the council’s Web site.
Wednesday, July 28, 2010
Nearly a year and a half later this still blows my mind! “Why can’t we get a bath or shower more than once a week?” asked I. “Because we would need to put on more aids to do this and there is not enough money!” she answered.
With the Nurse Practitioner I asked “Why can’t I consult with my own Doctor and have him send over a prescription both he and I know will care for this insufferable itching I get from the bedsheets?” She said: “Because we have an on staff a doctor who is salaried by us, paid by your fees. To have a doctor we are required to give him the exclusive right to treat patients while they are here.”
We went on in our exchange. “Why do I never see him?” In answer “Because he is too busy to see patients working the three days a week that he does. In this time he has so much research and records review he simply can’t take the time to see patients. That is my job and I report to him, if I can see him, which I can’t much of the time, he is too busy for me too.”
“Can I have my drug store deliver the prescription salve I have learned takes care of the skin condition my dermatologist diagnosed as contact dermatitis.” “No, you must get your drugs here and that is usually a five day wait if and after I tie down the doctor to prescribe it” went on the nurse practitioner.
“Why do so few of the aids and orderlies have any fluency whatsoever in our
English Language?” “They are all we can afford to get with the little money we have to hire them.” I was frustrated unable to communicate my needs through the language barrier. Although sounding xenophobic this was not. People immigrating should learn the language of the country but should have time to do so. But this won’t work if communication is part of their job
This was all told me after my Doctor sent me to what he and others described the best run “Home” in Minneapolis to recuperate from hip revision surgery until it was safe for me to go home.
As medical expense sky rocket and government funding dries up the purse for payment becomes smaller and tighter. Currently the climate for investment in Nursing Homes is good; 10 year ago it was not, the years before that it was bonanza city.
Regulation has become onerous, unified, one way serves all ways, our way not yours, the regulators say, what do you know? The companies Pay the best for the best administrators, lawyers, planners and investment counsel, keeping in mind it is the highest paid that are best because they are paying them the highest.
It is this circular reasoning that produces so much cost there is not enough left to pay the help.
A great article appeared today in The New Old Age Section of the New York Times entitled: One Way to Judge a Nursing Home. (Click on it to go to it in my Archive)
There are Homes; there are services responsive to the families who need them. You just have to look. The article I have archived, the reading of which I recommended, is a sure fire way of evaluation of a nursing home.
There of course are other factors that can be evaluated. Size, setting, orderliness, demeanor of people who serve and are being served, quality of care offered by people providing care, their attitude, attitude and more attitude, all of these matter so much. Also check what hours are worked, the server to patient ratio and of course the food!
Ours is a readily altruistic society. Perhaps one of the better ways of providing the service needed in the most responsible and efficacious way is to do so at the lowest possible level. Our synagogues, churches, mosques, our eleemosynary groups, like charitable, benevolent, social service organizations are the best equipped at the grass roots to serve those same grass roots.
Organizing large for-profit investment ventures, homogenized down to serve the widest possible field of need is not the answer.
We are at a critical time in our economic life as a society and as a culture. The old ways are no longer working. Communism started its failure process in Russia in the ‘90’s. Socialism has whimpered to nowhere in Europe, neither finding success nor failure. China’s brand of tyrannical capitalism under the guise of revised communism seems to be working, but would any one really want that. There are some bright lights in the world, like Brazil, Singapore, India, Canada and a few others. But not one to them has demonstrated enough to suggest a formula that might be followed.
The U.S. has always been the light brighter than bright. But that is no more. Ours as a culture has crashed. Government is deadlocked. The Cabal of Global Corporations control the money, the media, more subtly than Big Brother modulate how and what we think and how we vote, fueling the deadlock its control has made of government.
The crash of 2008 was but the last in the stairway of lies and subterfuge which finally folded into irremedial failure.
Humpty Dumpty has fallen off the wall and broken his head. All of the Government Men and all the Corporation Hacks cannot put Humpty Dumpty together again.
We have depended on Capitalism for at least the past three centuries dating from the Enlightenment with its roots in the Renaissance following the fall of Medievalism. Capitalism boiled down carries this view:
Man is essentially greedy, competitive, out for himself and amoral in matters of money. Above all he cannot be trusted nor can he be depended upon.
If we are to be economically successful we require controls over man. We can subjugate him as has been true in history, or, we can apply technology to control there otherwise unsavory traits by empowering and directing them by commercial competition.
No longer should we issue edicts against many “isms” to prohibit man’s baser instincts. Instead we can control them using this formula:
Open the playing field allowing each man to compete with every other man. Leave him be free and unfettered to just compete. With all competing against all others they will control each other automatically. Man’s selfish ingenuity exercised as competition will control the same drive in those against whom he competes. Like Chaos is said to do, this will produce order and right.
A great idea this; it has worked for centuries. But, its fissure has been identified as it has been rent by all that which came together in 2008 and there is no hope of resolution or repair.
We as a society and a culture face a cataclysmic renovation and renewal. This will either end in control being taken by one or an oligarchy of more forcing its way on us as in China or an altogether new and different way of our living as an organized society.
This should start with the question we hear from young people who are opting out of competition. They are asking each other “How can I help?”
Sunday, July 25, 2010
An interesting discussion appeared in New Old Age in the New York Times. It is entitled: When Pneumonia Follows Severe Dementia. Click the hypertex’d title to read it on my Archive.
What is death about? Is it something we should avoid at all costs? Is it something we should long for? What in fact should we do with it? It is on your agenda and it will happen, the question is when, the question is how.
Contracting Alzheimer’s Disease (AD) is one way we accelerate the concept that death is in our future, in our nearer future in fact. Is this relevant, does it have meaning in itself? Not really. It was always there, its prospect just somewhat changed.
If anything one might say AD when it comes to your death certainly gets your attention!
As a culture, as a people, we follow each other often thoughtlessly. We operate under a hive or herd mentality consisting of no more than doing what the other guys do; doing it as we have always done it; following the current formula already the fashion or already in place for handling such a situation.
Accordingly Death in our style of living is not coupled with the limit that life has in us. We don’t think about it; we don’t include it; we put it off for later consideration. Invariably when it happens it catches all by surprise.
Does this style blend in with having AD? Dose it fit in with the transformation AD produces in nearly everything about us? For me it certainly does. But I have always been different. Death is a partner I have carried through life, knowing our ultimate and total communion coming at the far end of living.
I do now, always have longed for death. I am in no rush mind you; I want it no sooner than that time I am done in life; I have enjoyed life too much to want to waste any part of it. Nonetheless, having life completed and transitioned via death is an event I do look forward to.
There are many reasons one of which is the optimistic curiosity I have of what there is after I “Croak!” If there is nothing, if it is over, nothing lost, I will have no consciousness to evaluate its absence. If there is something that follows death of which I will be in some way conscious, like the boy looking for the horse under the pile of horse manure, convinced it must be there to have made all this “Shit,” I conclude there has to be something more and it will be better. What? Hey is there a God? If so is he a woman or is she a man?
I believe anyone who has AD, who has embraced the fact of it, is coping with it as well as possible; has to see Death differently than most others. In many as is true of myself, it is a welcoming prospect; it is a release from the sentence imposed on us by this disease.
In this framework I have become a believer in the sensibility of Euthanasia which we euphemistically call Doctor Assisted Suicide. At such time my cognition is gone, when my consciousness is no longer serving any purpose, it makes no sense to me to continue living.
If the plugs are not there to be pulled is there other recourse. If I still have sufficient cognition to make the decision to say: “Let’s call the Death Doctor” I have doubts about the spiritual/ethical rightness of such a decision. If I am in “La La Land” it is a tall order for a loved one to do although I have left such instruction in my HealthCare Declaration, (Living Will).
Pneumonia untreated can be the convenient ticket without having to make a decision Year or Nay about it. The only decision needed is the direction: “Let there be no mediation or treatment to thwart it.”
Saturday, July 24, 2010
The sensitivity of Kristi Huffman the writer of the article that follows about Caregiving to Caregivers was heartwarming. We hear much of the Caregiver, of course not enough. This offers another dimension to Caregiving. In the perception of one being cared for as I am an Alzheimer’s Disease (AD) patient it opens a new depth of concern and empathy for Caregivers generally and my wife Diane in particular.
AD introduces a change that transforms every aspect of life of those who are intimately involved. This ranges from those affected to those afflicted. It is totally transformative. Life is irrevocably altered, new time frames are introduced, new demands made upon it. I call it an absolute paradigm shift from all that we knew of life to the AD way. Like it or not it is!
For the Caregiver the change is grudgingly evident. It ranges from obligation, consumption of more time than there is to give, too often unappreciated kindness, particularly by those AD patients far into Moderate and Late Stage AD. The list of negatives to being a Caregiver is endless. The return in it is experience of loving, not being loved, of purely, fully and selflessly giving love.
There is a fullness of heart and fondness of purpose that can be experienced when giving the too often unrequited task of loving that is part of Caregiving. The experience of having it is a personal measure known only by the person doing it.
For the AD patient with at least the degree of cognitive acuity I still have along with the empathy I can still garner it is Bitter-Sweet; no other words describe it. I feel so completely loved, vulnerable to little more than receiving it, and eternally grateful to have it. I feel so burdened by the pain engendered around me because of it, so stymied by my inability to respond to it. I do not know who hates it more, me or my loved ones, the flatness, the absence of affect, absence of emotional enthusiasm or spontaneity that trickles out of me.
Sadness describes best what I feel for those I love. What a raw deal for them! This sadness cannot be entertained rather I sublimate it with commitment to get through this labyrinth of change as gracefully and full of love as I can.
It is this commitment to love that I apply to my loved ones affected by my disease, and a willingness to offer to help others with it. This is a form of love I never knew could be as fulfilling as it is. It is bitter-sweet, wistful and so gratifying.
FRIDAY, JULY 23, 2010
Alzheimer's Reading Room
What is it like being an Alzheimer's caregiver? I Found Out
By Kristi Huffman
Sixteen years ago the Lord led me to something I never wanted to be -- an Alzheimer’s caregiver.
I was a licensed practical nurse and I wanted to be a hot-shot cardiac nurse, with all the excitement and “glory” that I imagined goes along with it. The despair I felt and sense of failure as I began my new caregiving experience I now am ashamed of.
I had no idea God was going to show me indescribable joy, intense frustration, humbling honor at being included in such an intimate time in someone’s life and a do-or-die pursuit of justice for the special population I was caring for.
Nothing compares to the feeling of a job well-done when a caregiver hugs you with tears in their eyes for giving them a much needed rest. Or when a couple asks you to sit with them to answer questions about what they will experience as the dementia disease progresses; to hold them and cry with them as you confirm what they already know, that there is no cure.
When a participant tells their caregiver that they aren’t ready to go home yet because of the activity they’re involved in or when we are able to preserve someone’s dignity while taking care of their incontinence situation; all these things and much more are of the utmost importance, and it’s why we do what we do.
I have been a caregiver for family members and now a professional caregiver.
I’m familiar with the guilt, frustration, sorrow and sense of loss caregivers’ experience. I’m also familiar with the joy, sense of humor, love and partnership that is on the other side of the coin.
I knew a man who had to finally place his wife in long term care. I wasn’t certain if she knew him but I was certain of his unchanging love for her. I would watch him sit with her, cheek to cheek and sway while the music played. Her face was permanently set in an open-mouthed stare but I knew he was only seeing the girl he married. How does one say goodbye to a spouse that’s still there?
The person they knew and loved is now buried deep and a stranger is at the surface. I knew three ladies whose husbands were in my care. They called themselves “widows in waiting.” They felt they were widowed once when their husbands no longer knew them and would be widowed again when their husbands passed away. These ladies did have joyful times with their spouses intermingled with the sadness of what the disease rendered. To help them through the journey they used the resources available; caregiver support groups, adult day service, home bath aide and then eventually, long term care.
I have realized after all these years the loss of what could have been needs to be mourned and the joyful times in the present need to be sought and celebrated. To the end we all need to be loved, touched, tended to and valued.
Caregivers need to be loved, respected, valued, and supported in their decisions, and allowed an array of feelings without being judged.
We’re all in this together. At anytime we could become the one to be cared for or the caregiver.
Kristi Huffman grew up in Oak Harbor, WA. She received her license in practical nursing 25 years ago, worked in long-term care, home care, and now in adult day respite care. Kristi is an executive director at North Whidbey Caregivers’ Cove.
Thursday, July 22, 2010
Is material like this relevant to anyone but seniors? I certainly hope so. It is one more element that needs to be considered foundational in all of our economic and societal planning.
This article presents irrefutable evidence that our future as a society is in serious jeopardy. It will not have the resources to handle what is soon to become.
We are currently in disruption in the way we have always done so many things. The economy has crashed and can’t seem to get off the floor. Politics have become petrified in their polarization. Those that have are holding cryptically to their gains. They are in irrevocable standoff with those who would do for others.
The system itself is in failure mode and will not overcome this chaos I believe until it produces a rejuvenated system capable of serving current needs.
Will we continue following the code of capitalism, namely trust to competitive zeal the automatic outcome of right? Will we instead take a second look at our humane side and start asking “How can we help?”
Rigid Capitalism has worked best since the Enlightenment, centuries ago. Like the golden age of the Roman Empire it too has its fault line. That line was finally rent in 2008.
Now where should we go?
Wednesday, July 21, 2010
Have you experienced enough of the limitations of aging to become frustrated and been prompted to simply “Stay Home?” Have you wondered where all the people went, at least those who haven’t died? Have you wondered have I developed an insidious stench such that I am being avoided?
It may be you are just getting old!
Nothing has surprised me more than the following since I have begun the process of aging, having Alzheimer’s Disease (AD) and growing infirmity. This has started to diminish my independence and vulnerability has set in. I never appreciated until now:
1. What little social care and consideration is provided us by our communities.
2. What little those managers professionally dedicated to serving our needs know of what our needs really are, care to inquire about them, or are willing to impugn their pre-determined opinions they already have in place as to what is and is not in our best interests.
Unless they hear from us it seems, too often, they miss the mark It seems they spin theirs and our wheels wasting time and money with programs that fit their formula, that are sufficiently uniform so every hand does the same. They do with without a thought to the value or effectiveness of the programs they put in place.
Does this sound like an ungrateful and strident indictment of the good purportedly done for us? I suppose it does.
Conversely it is this foundation of what is in place and continues to happen. It is what the professionals say about it which pulls the purse strings of all that is done continuing what is. Supporting that already in place produces their unwillingness to replace anything that might work better.
This is particularly true as society has entrenched itself solidly in its world view that seniors are second class. They are seen as offering no benefit, completely burdensome, and a group to be tolerated nothing more. If you throw dementia in among them they are then seen as unreliables, drooling, standing in the corner trying to find their way out. No way should they get any attention or regard, much less listened to.
It is best to “Warehouse” them. Nothing else can be done for those kind but provide them with minimal and least expensive palliative care (care that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure[Wikipedia].)
That is true unless programs and infrastructure can offer some entrepreneur a profit!
It is because of this forgoing belief I read the following article in the New York Time entitled: A Fast Paced City Tries to Be a Gentler Place to Grow Old (I have posted it in my archive for you to go to it and read it. Click on the title that is hypertext’d)
What wonderful thought and good purpose given seniors by the people of New York City! They are undertaking to make the City, including the very Urban part of it, such that a senior can grow older and not have it be the most painful empty period of their lives.
Our culture has victimized us too much. As children we are organized and forced to grow up in order to produce and contribute. As mid-lifers we are acculturated to sacrifice all to provide for family, loved ones, and, save enough for retirement. No time is allowed to be simply yourself or feed your soul.
If our retirement kitty survives the financial sharks, we retire to the dubious joy of serving ourselves. That is until we start aging.
There is nothing fun about involuntarily surrendering to the limitations of the body progressively losing its ability to function as we have become used to its doing.
It is at this point our world turns on us. There is no free pass, it’s uphill all the way and you are on your own baby!
How nice to see a city, not any, The City, adapting its infrastructure to make being limited by age compatible with living in comfort feeling some security and togetherness. It is time for our culture to dispense with the “Shun” given the fragile and infirm.
It is time for all cities to adopt similar programs and change their view that we as seniors are here, we remain, we are vital; we want to be part and do have much to offer. Other cultures value our sagacity. I is time our culture does the same.
Monday, July 19, 2010
Of interest the article sets out the following comments which I quote:
….The truth is, we are all one tick away from terror and triumph, from exultation and annihilation. In a nanosecond, your carefully calculated savings can be multiplied or drained, your health decimated or restored.
Human vulnerability is made no more terrifyingly visible than in those people with dementia….
Dementia forces us to grapple with the reality that no one is a fixed entity…
What if we begin to conceive of God as abiding, dynamic presence rather than distant, rational ruler? A God who is just as present to the post-dementia person as to the pre-dementia person? A God whose relationship with the person changes as the person changes?
…In the struggle to understand what it means to be human with dementia, we need the contributions of those who regularly traffic in the spheres of the intuitive and ineffable, who understand the value of someone as transcending linear, hyper-rational formulations of identity. This is why we so desperately need the wisdom of poets and painters, dancers and drummers, sculptors and singers.
We… must sit at the knees of our mystics, those teachers of the cloudy realm of unknowing. We need the insight of these prophets -- who point us toward different ways of knowing and experiencing the world, one another, the holy -- every bit as much as we need good doctors, drugs, and living wills.
Read the foregoing then read it again, until it sinks in. It says so much about the experience of Alzheimer’s Disease (AD) as it is seen from my side.
Diagnosed with this tragic disease we are placed in the direct and imminent path of our vulnerability. If nothing else caused us to really grasp that fact AD does. It has changed, through no fault of our own, by no action or choice, it just happens, a streak out of the mist. It is nonetheless real, beyond belief; it is transforming; it doesn’t give back!
When the paradigm shift occurs with your life you are given but two choices. Either, accept it or deny it! To deny it produces a downward spiral going quickly into the oblivion that it has to offer. In lieu of denial is a corollary choice which is to simply not deal with it, try to work around it. This does not work much better.
Acceptance offers satisfaction; it provides the fulfillment of dealing positively with events over which you have no power to change. It is through this ultimate and final actuality that you can touch the spiritual propensity the irrevocability of which AD has to offer.
We are not of this world in which we dwell while filling space passing through time. If life, living, were to be defined in but one word that would be “purposeful.” We operate with purpose, probably assigned before, tasked for here, intended for harvest hereafter. It is difficult to get around this fact.
Recently I was amongst a group talking of others. The discourse was about a person unabashedly wealthy. A genius with computers who had earned more money than he could ever hope to spend. Flamboyantly generous he showered his wealth on family, close friends and endless spending.
The group discussing it had in mind the question of pride and purpose of all of those in the orbit of this beneficence. We were also mindful of what could be done with money which could not be done without having it. Just what would that be like?
I listened and wondered how off the mark all of us were.
What value was it to one with the money, one getting the money or one discussing what it is like? To each the value is found not in having it, playing with it, spending it, but, rather what good can be done with it whether or not you have it, receive it or wish for it.
The lesson comes in recognizing the futility of it all. Things material are illusory. They are not permanent. They are not in themselves genuine. There is nothing inherent in them to enhance one’s purpose in simply having them. It can be damaging when they are given priority over the real things of life. The one good they can offer is the frustration upon attaining them finding them to be in actuality empty.
Life seems to be continuing lessons between striving for things of this world, as against using them to transcend this world.
If nothing else has done so before, it is AD that removes all question about the tension. After you have AD the tension is no longer. The only alternative left you is what you do with a condition which steals you mind, then your body and then your life.
You got AD, it is ultimately terminal, devastating preliminarily, and there is no going back. It is final, you are dying in slow motion. The beauty of this is being given all the second chances of doing something good with it starting with accepting it!
It is in fact the most wonderful second chance!
Saturday, July 17, 2010
A raft of material is coming from the AAICAD, namely The International Conference on Alzheimer’s Disease (ICAD) about the latest in research, technologies, care and treatment of Alzheimer’s Disease (AD).
A general review of the material being produced can be found at the Alzheimer’s Association WebSite for the ICAD There is so much being reported it is worth going to this website to see the variety and study those issues that interest you.
My interest was instantly drawn to a report found at that Site: Early Detection, Diagnosis & Care Management for People with Dementia May Reduce Healthcare Costs
This report has already received a series of reports by news agencies and columnists interpreting the findings that constitute the basis of the report. The research and findings were submitted by Dr Riley McCarten
The research findings stripped of embellishment said this:
The Dementia Demonstration Project (DDP), an interdisciplinary effort led by the Geriatric Research, Education and Clinic Center at the Minneapolis Veterans (VA) Medical Center, found that early detection, diagnosis and care management for people newly diagnosed with cognitive impairment and dementia can reduce outpatient costs by almost 30 percent. Veterans in the study who were diagnosed in the DDP clinics saw their average outpatient healthcare costs decline by an average of $1,991 in the year after diagnosis of cognitive impairment compared with the year before diagnosis. In the DDP clinics, following evaluation, the dementia care team met with the patient and family to review the results, discuss the diagnosis, and outline treatment recommendations. Informational material, assistance in identifying needed services, and direct support and training from team members was provided, as needed.
Reports from the media ranged from disservice by the Wall Street Journal:
“I think the importance of this demonstration model is that we saved costs in the first year," said Dr. McCarten. "People are afraid that if you implement this screening model, it will break the bank."
The effort is the biggest study so far to examine the reduction of costs by identifying cognitive dysfunction early, according to William Thies, chief medical and scientific officer for the Alzheimer's Association. He said the data show the program is "clearly cost-effective."
The cost savings are likely due to reduced hospitalizations and visits to urgent-care centers because families no longer bring their loved ones to these facilities as frequently as when they didn't understand what was going on, according to Dr. McCarten. The reduced costs may also be related to having a caregiver step in to help the patient better manage chronic health conditions, he said.
"If you know that dad has a terminal disease, you're not going to be dragging him into the hospital for everything," said Dr. McCarten….
It's unclear still whether these "really important" findings would apply to patients who aren't part of the Veterans Affairs system, or who go to clinics without specialty training in Alzheimer's disease, according to Howard Fillit, executive director of the Alzheimer's Drug Discovery Foundation, who wasn't involved in the study.
To Bloomberg News Service Report who nuanced their report of the same material opposite to that of the Wall Street Journal:
“Our study showed reduced costs in the short run, but we also anticipate that screening would save money in the long-run as well, since we would no longer sink costs into aggressive treatments for other conditions during end-of-life treatment when the patients already have an invariably terminal disease,” McCarten, a University of Minnesota physician, said in an interview yesterday….
…Despite such hurdles, for patients whose dementia is properly diagnosed, health care may become more efficient, McCarten said in the interview. That’s because they can receive chronic care such as phone checkups with nurses, he said. Before diagnosis, patients may be “lurching from crisis to crisis,” undergoing tests and treatment for many possible maladies, after coming to the hospital repeatedly with vague complaints, he said.
“If you can detect and diagnose the disease earlier, then one can implement care sooner, so that the hope would be that the individual would have a slower progression of the disease and therefore extend the time before they would need institutionalized care,” said Molly V. Wagster, chief of the behavioral and systems neuroscience branch at the National Institute on Aging, in Bethesda, Maryland, in …
… McCarten said. “Right now the health-care system cares about every other organ system, but almost completely ignores the brain.”
The bottom line is what has been said almost too often this Blog:
Early Diagnosis leads to Early Care for those of us in Early Stage prolongs us in theAD Early Stage. This has a panoply of benefits starting with our remaining functional longer, costing our families and our communities less. Above all it enhances the quality of life or our family and loved ones as well as ourselves.
Medication, Eating Right, Exercising Daily, Stimulating us with Creative, Intellectual and Social Activity, all aid in prolonging our process in Early Stage.
Doing it is Worth It!
Wednesday, July 14, 2010
The New York Times reported this morning in an article entitled: Welcome News! Rules Seek to Expand Diagnosis of Alzheimer’s which I have posted in my Archive and is available to be read in the New York Times. (Click on the hypertext of either the title or NYT to go there and read.)
I have left the comment that follows, the 87th comment posted. I encourage a look at all of the comments which not to my surprise raise the specter of runaway health care cost, drug sales, and disservice hanging the label AD on too many people, too early, at the risk of mis-diagnosis. This underscores the concern of those who suffer this disease and have received treatment help prolonging us in early stage with a quality of life not otherwise available to us if we were not diagnosed.
This report set out in the article offers those already diagnosed with Alzheimer’s Disease (AD) more hope. I am in its early stage diagnosed four years ago. I was an Early Diagnosis. The early diagnosis has been of great benefit for me, my loved ones and the public at large. I have treated the disease with medication and with our AD Mantra for Care: Eat write, Exercise daily, Stimulate with social, intellectual and creative activities.
These work, they keep you functional and able to care for yourself with less need of Caregiving. This has enhanced the quality of my life far beyond anything I expected, particularly consigned to the fate of having this tragic disease.
It opens the door to greater treatment concentration on the disease itself rather than looking only for medication to prevent others getting it or curing it altogether. Currently there are so many programs that fail being done for lack of funding and attention. These programs are within the three AD Mantras. We need to become very serious about these; they work and are a wonderful supplement to the medication that delays symptoms.
This has been stymied too long by a public and professional belief that finding a medication that will prevent or cure the disease is the only method it counter it. Early Diagnosis leads to the care that can slow it and increase the quality of life having it.
The article finishes with the statement of Dr. Doraiswamy which I believe does us all a huge disservice:
“We ought to be cautious that we don’t stimulate all this testing before we can give people something to manage their disease. There is no point in giving them just a label.”
I respectfully submit Doctor Doraiswamy, there is a point to giving us the label. It allows us to treat the cause and perhaps find greater acceptance in a society that shuns us now expecting us to do no more than stand in the corner and drool!
Monday, July 12, 2010
No two are alike is so true, but... The man's story that follows is close to mine. Nonetheless there are as many kinds of Alzheimer's Disease as there are folks who have it.
Trying to classify it for statistical or treatment reasons is nuts.
Even with medication: It works for some, not for others and many differently.
Recently, getting tired of trying to fill the donut hole in the Part D Insurance Coverage that is euphemistically called legislation reforming and relieving the prescription drug cost for seniors, I went off my Namenda prescription.
Many reasons prompted this: First the nearly 200 a month I shelled out for it. Second, I started it 4 years ago on diagnosis and neither my wife Diane nor I saw a difference. Then I added Aricept 9 months later and the change was dramatically for the better. My Third reason was the reports we hear from the media that these drugs effectiveness is temporary at best, about 6 months temporary, made me wonder was I wasting my money and that of the Government?
After a week and a half off Namenda still on Aricept I knew there was a difference. My acuity went out the window. I developed a constant sense of calamity, a symptom I get occasionally but never as constant and intense as it was. I went back on and, viola, it was gone. Me and acuity are back to normal.
In this case, my experience was the same as the following Doctor’s experience. Is this significant? Yes, I have been on Namenda more than 4 years. I added Arricept 3.5 years ago. It has been working all of that time, it continues to work.
The classification of these drugs by the process that classifies and makes all the data uniform, homogenizes it, says there is insufficient proof to find these two drugs separately or together are effective beyond six months. From that the statistical method determines these drugs are not effective for more than 6 months.
What do you believe?
Alzheimer's as seen by a patient who is also a doctor
A retired physician and an emeritus professor of medicine at UCLA shares his insights and even tips for coping with this difficult and growing problem.
June 27, 2010|Arthur Rivin
I am a retired physician and an emeritus professor of medicine. I also have Alzheimer's disease.
Before my diagnosis, I was certainly familiar with the disease, having seen patients with Alzheimer's over the years in my internal medicine practice. But I was slow to suspect my own affliction.
Now that I've been diagnosed, I can trace my problems back some 10 years, to when I was 76. I had been chairing a monthly program in medical ethics, and I knew most of the speakers and found it easy and enjoyable to introduce them. Then, suddenly, I found I had to rely on prepared material to make the introductions. I started to forget names, though never faces. These kinds of lapses are common in aging brains, so it was easy for me to write them off to "senior moments."
In the following years, I had coronary surgery and then two TIAs (transient ischemic attacks), or small strokes. My neurologist attributed my problems to them, but my mind continued to deteriorate even though I had no more strokes. The final blow was the occasion one year ago when I was receiving a citation for service in my hospital. I stood up to thank the presenters and found that I could not say a word.
It was my wife who insisted I go to the doctor for a diagnosis. As much as I was in denial and tried to dismiss my lapses as normal aging (doctors are often not willing patients), she knew something was wrong. My internist put me through a few memory tests in the office and then ordered a PET scan of the brain, which predicts Alzheimer's with 95% accuracy.
After the diagnosis, I was started on a medicine called Aricept, which has been used for many years and which has many side effects. I had two of them — bad diarrhea and appetite loss. I'd had a few Alzheimer's patients in my practice who had taken this medicine with no benefit, so I wasn't expecting much. I wanted to abandon it because of the side effects, but my doctor urged me to continue. The side effects disappeared and another drug, Namenda, was added. These drugs are by no means miracle cures, and in many patients they have little effect. I was one of the rare lucky ones.
In two months I was much better, and I am now close to normal. At my worst, I had difficulty speaking, did not know the names of my grandchildren or my doctor, could not add or subtract or find my way home. Now I can do all these things.
Saturday, July 10, 2010
An interesting article appeared in The Tangled Neuron recently entitled “What's the Best Alzheimer's Care? Disappointing Results from a French Study.” (Find it by clicking the title or it or the Tangled Neuron both in hypertext)
The article starts with the following summary statement:
A recent French clinical trial found that a standardized special care plan at memory clinics did not help people diagnosed with Alzheimer’s maintain functionality.
This result comes as no surprise. The overall reason in my view is this:
Attempting to prescribe uniformly for Alzheimer’s Disease (AD) when the last thing it can be called is uniform. In its manifestation in the persons having it is infinitely variable. There are as many kinds of AD as there are people who have it. Each person having it is in a different stage of it from day to day, different from all others bearing a similar diagnosis.
Uniformity is the giant fault of our modern data dependent culture that needs to classify before it can concern itself with anything. I call this the sin of “Homogenization!” Like the inverse of Murphy’s law we homogenize all or our programs into their lowest denominator of ineffectiveness.
Treatment of AD, particularly in the Early Stage of it, when a person can be kept there longer by it, needs to be measured by the positive response of the person getting it. Does the patient respond? Does it help? Does it improve? That which works is what should by utilized.
Reducing treatment to a data friendly consistent formula decreases its possibility of being effective. Homogenization is the inverse of efficacy.
In its classification process while decentralizing treatment modality we ought to centralize diagnostic criteria. We should broaden the class of symptoms so more fits into the ambit of AD. This would force treatment to recognize difference in type of AD a person suffers by reason of the generality of what is known as AD.
It puzzles me why it seems impossible to get any positive kinds of treatment of this devastating disease. Currently there are but two modes:
1. Indifference to outright apathy of those who remain functional but classified by the mark of AD resulting from their Diagnosis. Mostly we are simply shunned.
2. Warehousing in Uniform Services from Nursing Home to Day Care, prohibitively expensive, ineffective and degrading of Human Spirit.
I often wonder if professional opinion and treatment are shackled by the “Hive Mentality” that permeate the greater part of thought process in our society. We too often are victims of “Group Think” measured with the standards invoked by the “Cult of Mediocrity.”
This is another facet of Homogenization of our Culture. We sacrifice creativity for fitting in. To be creative is to stand out, to be different, to challenge others with thoughts they would rather not think about. They would rather not think about them because they entail risk, they can’t be sure, they might be wrong. Therefore let’s stick to the tried and true and not be so silly as to doing something new.
It is more important to remain acceptable in the group as risk being shunned by reason of failure. Therefore new ideas are Verboten!
The safest course in any direction is one that has been tried before, has had some success, and even more importantly has not backfired. It is therefore nuts to do any differently than the other guy.
This is true in our culture individually, in groups, organizations, corporations, governments, groupings within each. We do what the other guy has done. We shun someone who tries something different.
This cancer infects and permeates judgment and treatment on AD. So like everything else it is the tragic victim of Homogenization.
As a result all programs and all people creating them and administrating them suffer the same thing that didn’t quite hit the mark when done before, but good enough to escape criticism. They are safe for the doer, not necessarily affective for the receiver.
Thursday, July 8, 2010
The worst thing that could happen to me said a friend is to get Alzheimer’s Disease (AD)!
Well I have it, so now, what to do?
I have posted an article entitled “Drinking Apple Juice Improves Mood in Alzheimer's Patients” taken from Alzheimer’s Reading Room (click on the hypertext’d title or the reading room to read it)
Like one of too many recommendations, take this product, it is proven…. I normally pay little attention. This one does catch my attention.
When I was first recovering from Alcoholism 35 years ago I started eating apples daily. They relaxed and tranquilized me somewhat. I truly became a believer, “Hey, this really works!”
I have believed this ever since. Funny now as I read validation of that belief as I suffer a second disquieting disease.
The article sets out:
In addition to changes in memory, there's a distinct change in mood that often accompanies Alzheimer's disease," explains Dr. Shea. "We found that people receiving apple juice displayed fewer of the associated behavioral symptoms. They were calmer, less agitated, and at the end of the day, they had a better quality of life.
Much is going right for me having this disease. On the down side I still have my triumvirate of substantial limitation: Executive Function, Multi – Tasking and Perceptual Vision, are all seriously deficient. These I have lived with since and before diagnosis.
A new anomaly of this has been deteriorating emotional balance like depression which I believe to be organic at least in part and secondary to AD. It comes and it goes with a repeating collage of symptoms.
I get anxious and agitated, can’t sit still, don’t want to see anyone, sit and hide out. Sometimes this is preceded by a very agitated night; I wake a lot my mind churning. I dream weird and sometimes nightmarish dreams. This can be accompanied at times, precede or followed by periods of extreme fatigue, my two nap days.
I am subject to intermittent days of feeling “under the weather,” an old colloquialism that aptly described just what I feel like. Some times stomach nausea, other times intestinal distress or general malaise accompanies these periods. I lie low and it passes.
I can plan on this once or twice a month.
For all of this I have doctored to distraction and it defies diagnosis. I have altered, added to, quit, various medications, particularly the Zoloft I have taken successfully for years for anxiety and depression. The Internist, Neurologist or Gastroenterologist can not find a reason. I have done Psychiatrists and Psychologists to no avail.
My life is interesting, I enjoy it, am quite engaged, so engaged that I haven’t looked at TV excepting for the health care debate and the last National Election in some years.
Unable to get a better diagnosis I give it my own: Shit Happens! Part of the disease is this. My prescription: live with it, accept it; tolerate it socialize and stay engaged.
Perhaps an apple a day, juice and apple sauce will help too.
Tuesday, July 6, 2010
A significant report was headlined in CNN on yesterday’s net. It is entitled Depression may raise risk of dementia, Alzheimer's, study says. I have posted it in my Archive; click on the hypertext’d title to go there to read it.
I suspected this to be true of myself long ago. I was diagnosed 4 years ago, and in retrospect to that diagnosis was able to see events going back 5 to 10 years that were somewhat isolated at the time, many repeated nonetheless. These symptoms had no other explanation. They were understandable when I looked at them as coming form Alzheimer’s Disease (AD).
I had a period commencing 14 years before diagnosis that I believed responsible for many symptoms that could have as easily been AD starting then. The event 14 years ago was the end of a 3 year argument over the future of the firm that I mentored, was the primary rain maker and hands on manager. I was 43 years a trial lawyer. The ten years leading to the event were spent as National Counsel for a major chemical company handling cases all over the U.S.
I was exhausted, burned out, at the end of my rope, and arguing with my junior partners about my resigning from the National work and where to take the firm thereafter. The only solution was to both resign the National work and sell the firm. This would allow me to get out of the caldron of strain that I was in.
The loss of my firm, my baby, founded by me when my life was bleakest bottomed out in Alcoholism, was extremely traumatic. The firm grew right along with my sobriety. In spite of a good return on its sale it hit me like nothing other. I was depressed, stayed depressed through therapy and medication for years.
The symptoms which I later attributed to AD seemed as they happened to be no more than the outgrowth of the depression already well established with me.
Where the depression ended and the AD started I have no clue but this: My AD is certainly associated intimately with the depression that overwhemed me before AD did.
Sunday, July 4, 2010
My mission is that of Alzheimer’s Disease (AD). It comprises my commitment to all of us affected by it. If you are right in the middle of it you know what you have to know.
You are part of my audience, part of the group I hope to reach. You see what you have to see and know there is just no way around it. Like me you journey on in the midst of it.
There are so many others who could be such a help, but they see only what they want and know what they want to know. Too often they know better; their manner of understanding cannot reach the reality from which I speak; they believe what they have been led to by a variety of methods that guide them. That which motivates, inspires and incites them has not yet reached into the realm of what we with AD require to get through this progression of debilitation.
The leaders of movements have their programs already in process and limit their attention to what needs to be done to their accomplishment. They do not have time to think or devise new activities or read between the lines of what more might be done. Their plates are full and that is enough.
The market place is fat and happy. Entrepreneurship is turning a wonderful profit on servicing need just as it is, no need to change, in fact to do so would cost them.
People simply do not hear when need is pointed out.
This is one of the greater frustrations I have in dealing with this universe that impinges on my disease AD. I have worked with the people who purportedly support us. I have talked to people who are honestly concerned about us. I have written endlessly of the needs, the pitfalls, the shame, and the challenges of living with this disease. I have not moved mountains; I have hardly scratched a track over some sand.
AD needs more attention, in so many different ways, than it is getting. There is so much concentration on raising money to find a cure, little more than lip service to the universe of needs of those suffering the disease. This is almost a mantra with me that I believe requires I go no further.
The subject of this post is the why of it!
Finding a cure is of benefit to those folks yet to get this disease and the drug companies that are seeking the cure. We need the organizations that manage this to re-direct more effort into other avenues of help. Part of my mantra of needs are the following list of some of them:
1. Programs to bring Early Stage AD patients together to help them and for them to assist each other. So much can be done to prolong Early Stage, save institutional cost and above all improve quality of life for the patient. Socializing is essential for them.
I have listed many ideas in the past. One of the underlying factors of importance is to create the desire to prolong their current state by improving its quality for those who are otherwise shunned by friends, family and community and have no other cause but to slip silently into the next stage of the disease process.
2. Something needs to be done about the cost of care. As a culture we are in an intractable escalation of costs encountered at every turn in dealing with this disease. It affects us; it affects the public at large.
We have come to excuse the intolerable cost of care. We have become inured to it because of the futility we have found in fighting it. The profit picture produced by the health care, medical, pharmaceutical, insurance, nursing home, construction, banking, investment, entrepreneurial and associated industries purportedly providing the care for this disease is in fact servicing itself.
It is using those of us suffering to justify investment for their own gain. I have written often of the absurdity of the exploitation for profit that occurs in all of the facets of health and medical care that does not need repeating.
What is needed so badly is an organizational, collective and individual effort to glean through the chaff and find the wherewithal to provide Economy of Care for us. This services our quality of life, it assists our families, additionally this serves our culture and community.
It initiates a new and a different kind of grass roots effort to accomplish group goals. These grass roots were once the province of politics, but no more. Political process has become so insular and self serving it is in no way able to relate to the real mess that has resulted.
Left with nothing done the cost of care of the disease which is striking an exponentially increasing number of people will fuel a calamity into a National Crisis of Cost quick to become.
3. Re-education is screaming for concentration to change the public stereotype of who we are and the medical profession in how we are treated. Early Diagnosis and Early Treatment are key to containing the public and private cost of this disease as well as foundation for sustaining quality of life for all of those affected by it.
These and so many others are not on our cultural priority list and they need to be.
I believe this is so not because of some great plot or secret strategy. It stems from our process of group thinking in which we communally plod our way from concept to cause the result of which the burgeoning disaster is simply not recognized.
Why, because people collectively do not think that way. For some reason we, acting as groups are in need dissemination of knowledge to us, direction, suggested conclusion, and above all impact us with our failure to grapple and grasp the hazard of it all if we are fool enough to do so.
We do not think for ourselves, we do not rise above our fellows, guided by our cult of mediocrity, the need to be like everyone else, we shy from independent thinking. We do what the other guy does. In like manner in our corporate world corporations and groups with within corporations, non-profit groups, issue oriented groups, government and its parts, all of them, do what the other guy does as try something new or different on their own.
Media in our country is the reservoir of expertise in the field of forming opinion and changing opinion within the frame work of group thought. Give it to the talking heads on cable. They can create controversy, concoct calamity, and anticipate the pitfalls of the most innocuous topics better than any media outlet in our country.
We need through the talking heads and what ever other means we can employ to somehow to stimulate opinion-makers and convince anyone we can of the benefit to be obtained by placing this need on active public priority.
If we do not we will continue doing no more than everyone else is doing, which in the case of this need addressed here is not a hell of a lot!
Friday, July 2, 2010
It details the way it is for those of us who are Alcoholic. I’ve been one, still am. The Gospel works, it is none as Alcoholics Anonymous (AA)
I have spent 35 years of my life experiencing the benefits of working the AA Way. Turn it over, step back, get out of the way – then, let your life happen to you. Recovery from Alcoholism is that simple. What’s even better is using the AA Way in every undertaking of your life. It works as well as it does for recovery from Alcoholism.
It changed my life, gave me choices I never believed I deserved or would ever have. I was a hopeless drunk. 30 years after learning and applying the AA Way I was diagnosed with Alzheimer’s Disease (AD). After recovering from the shock and the despair of learning this I thought of and applied the AA Way. Today, 4 years from the very date of my diagnosis I can say, “Yes, another successful result of using the AA Way!”
I still “got” it, AD does not go away, it creeps inexorably to its goal of robbing you of your mind, body and life. It nonetheless has become quite tolerable to have it. Having AD is a lot less painful than worrying about getting it.
If any one reading this has an interest I have written a short book entitled “From AA to AD, a wistful travelogue” (Available through amazon.com) that explains this. It was written primarily for my AD peers. It talks about acceptance and discusses why it works as it did for me in AA.