Can You See ME?

The poem that follows appeared on Alzheimer's Reading Room this morning. It is on the mark. I also follow it with the comment I posted to it.
I am still working on my theme How to Face Fear with Knowledge. It requires research. It has to do with the professional community surrounding Alzheimer's World trying to categorize the class they assign to it in a workable definition to aid research in finding the cure. The more they can define what Alzheimer's Disease is not the more quickly they can refine the disease for research making it have less triggers that start or exacerbate it. This is helpful in finding the cure but does not do a damn thing for the person who has Dementia that does not fit in.

If the shoe doesn't fit you are screwed. Only Cinderella need apply!

Can You See ME?

I am sitting here with my eyes open, though you speak as if I am not here.

I am here! Can't you see me?

I AM still in here!

Touch me with your hand, Please, my skin still feels. Rub my arm and pat my hand. I CAN feel you. I long for human contact.

I AM in here.

Talk to me. I am alone and isolated in this chair. I am lonely but I cannot tell you. I feel helpless, I can't move by myself.

I sit here all day with no stimulation, only the sound of alarms and intercoms.

I am bored! PLEASE TALK TO ME!

This poem was written by Anne Marie a woman suffering from dementia. The poem was sent to us by Judy Berry, Lakeview Ranch.

Can You See ME

Read the poem “Can You See ME?” then tell me why! Why is Alzheimer’s Disease (AD) treated like leprosy and those of us with it­ shunned like lepers? This poem ­­tells it like it is.

Is there an answer for this? Is there any reason why?          

We have allowed sensationalism to be made of our disease, trusted others to make it's shock value such as to get response. That response is contribution of money to find the cure. The shock value is intended to create fear; afraid you might get AD if it you do not contribute and make it go away.

In this way we are used and abused for no good coming to us. Only the ones getting a financial return from raising money are getting a return on this characterization.

We are the losers in the poem. We are the losers because there is no hope. We get the disease; we are placed on the shelf where there is no notice of us, no programs to help us maintain our functionality in the Early Stage. When it is time for the “Home” nothing is done to keep the institutional cost within reason.

Why? There is nothing that can be done but to keep us safe and then be committed to the institution when this is no longer possible. This is what Dr Alois Alzheimer said in 1902. This is what too many professionals think and sat today.

Because of the fear of it as it is increases in number then melodramatically characterized as even worse no one wants to be in the same room with an untouchable.

How to Face Fear with Knowledge Part VIII

[A note to my reader: I have reviewed the last seven installments and find I have committed some redundancy in what I have said. I see this particularly as I quote Harry Johns in this post and have quoted him before. I do have Dementia and those of us with it are given to redundancy. There's not a hell of a lot more I can say!]

 When I joined the AD Club I assumed I would find a disease process about which there would be specificity and concrete recommendation on how to deal with it.  AD has a history reaching back to 1902 when Dr. Alois Alzheimer first gave it his last name. It has been around longer than Alcoholics Anonymous (AA). At the time I was diagnosed with AD I already had 31 years of intimacy with AA. I was a recovered alcoholic active in the AA program. I assumed I would find AD World much the same as AA World.

I quickly learned how wrong this was. As AA accumulated a massive data bank about alcoholism and an equally large mass of data on how to deal with it, stay successfully abstinent and learn how to rebuild your life; I found nothing similar in the knowledge base of AD.

My doctor did the standard take this and I’ll see you in 6 months. Giving him credit he did give me more than most doctors do. It is usually “take this and come back in 6 months or a year.” Giving my doctor the credit he is due, in addition to medication he told us what was out there able to give us help in dealing with it. He recommended I continue with the Occupational Therapy I was getting at Sister Kenny Institute and that I get a neuro-psychometric evaluation that I already had on order.

I was set to dive in and take care of myself. I did it once in my life with alcoholism; I knew the tools; I put them to work on AD. Within three days I was writing about it, then in a personal journal. My wife Diane and I started calling around for help from Alzheimer’s Association and from any existing support groups that might assist.

My experience with AA was this: They knew what to do; they knew how to do: they had specific guides and sign posts to follow in recovering from the acute phase of Alcoholism. One of the key tools was attending AA meetings. Equally important was their admonition: Turn your life and your addiction over to the care of a “higher power” who could and would take care of it for you.

I followed the rules closely and it produced a wonderful recovery of 31 years of sobriety now 37 years. I learned what works, what doesn’t and stuck with the plus side of that column.

Older brother AD had nothing of the same. In fact it was doing nothing but leaving us to swing in the wind with it. What few support groups there were 99% were for caretakers. I attended one early on, saw it through its limited run and tried to organize a permanent support group out of it. I found no help from the people running the program nor interest in the other of those early stage afflicted who attended.

I continued the directions of my doctor. As part of my of the occupational therapy we were interviewed by the Neuro-Psychologist who I first tried to see for a Neuro-Psychometric test but he was too booked up. I was nevertheless able to get in to have a consultation.

I arranged to have the narrative of the Neuro-Psychologist what had tested delivered to this second Neuro-Psychologist. I had it in his hands before the consultation and asked his office to have him review it before my appointment. I had the narrative accompanied by the test results a copy of the Raw Data taken in the testing process and all of my medical records sent him.

I had learned in dealing with Neuro-Psychologist and Neuro-Psychometric Tests in the Courtroom that the Raw Data was the most important data to be reviewed by another Neuro-Psychologist. Reviewing the Raw Data a second examiner could interpret the test and validate or discount the final conclusions and diagnosis of the initial tester.

When we were in for the appointment this doctor took a history, said he had reviewed my neurologist’s records and the records of Occupational Therapy including the driving test results and other test conducted by them. I asked if he had reviewed my Neuro-Psychometric records from Dr Holker who conducted my Neuro-Psychometric test. He said he was unaware he had the records. He checked and found he had them but no one had told him.

He did a quick survey of these while we were sitting there, set them aside and said “I have as much as they had to offer me and do not need them any further for this consultation.” He completed the consultation then told me: “You do not have AD!” He went on to say “I can’t say what it is you have. You have something that is some kind of Dementia. I could follow you, do my own Neuro-Psychometric test and see whether I can classify your dementia, but this I cannot guarantee. There are just too many Dementias out there to be assured I could find which one is the dementia you have.”

We elected not to have him follow me. His “Brouhaha” his quick consultation and his cursory review of Dr Holker’s records of me including the Raw Data of the testing received review by him of no more than 2 minutes if that.

Knowing what can be done with this accumulation of data by another Neuro-Psychologist from my experience with them in lawsuits I knew so much could be done with them. I had no confidence with this character. I knew he had no clue about this previous testing that had at least validated my complaints and should have been helpful. He was also too into himself and his opinion to be impacted by the view of another professional. This position was validated on return and review of it with Dr Terrell, my neurologist.

I went two years relying on Terrell and discounting the aberrant Neuro-Psychologist choosing to believe I had an atypical variety of AD which accounted for any difference in my symptoms for others at the same stage as me.

This lasted for 2½ years until I was tested by another Neuro-Psychologist. At the time I was seeing a partner of Dr. Terrell, Dr. Golden who was the clinics expert on AD. Dr. Terrell was the clinic’s expert on Stroke treatment. Dr. Golden wanted my condition updated and made the clinic’s Neuro-Psychologist available to me.

This third guy was not as arrogant and flamboyant as the previous one but he did agree with the conclusion of the second guy. He did not agree with the first Neuro-Psychologist.

This threw me for a royal curve. “If not AD what the hell do I have, what should I do about it?”

I carried this question back to Dr. Golden. He told me the two Neuro-Psychologists that followed

Dr. Holker were wrong I should pay them no attention.

He went on to say there were as many different kinds of AD as there were people with it. Not one of them is quite similar with any of the others. Most Psychologists rely on an agreed set of symptoms adopted by the Board of Psychologists. These are contained in the Diagnostic Statistic Manual (DSM) classifying all mental diseases into groups put there by their similarity of symptoms. This is periodically updated by the Board of Psychologists. Too many psychologist rely on matching complaints of a patient to the list of symptoms the DSM requires before making a diagnosis of AD. The DSM is rigid and too many practitioners are equally rigid in trusting the results of the comparison and matching as trusting their own clinical judgment.

He finished telling me I could rely on Dr. Terrell an expert on stroke who could tell my problems were not altogether stroke related. Dr. Holker in turn made a very detailed study of me and came up with the same thing the next two guys did, but called it properly atypical dementia of the Alzheimer’s Kind.

The field of medicine wants to be a science. In doing so they must adopt tests, make measurements, analyze tissue all with an agreed upon format and a range of results agreed to be significant in determining what a malady a given result is.

This is wonderful if it works. But, in medicine there are so many gray areas of a kind best described by:  “It could be this; it could be that!” It is in this the practice of medicine needs to be above all an art form depending on the expertise of the practitioner to take all of the data before her/him and draw a reasoned conclusion in diagnosing the condition.

The definition that accompanies the disease of AD is prone to error because it takes something general in character and tries to make it specific to the exclusion of anything that does not fit within the confines of that definition.

This of course is a purposeful result of a specific agenda. Unfortunately it is an agenda that has nothing to do with treatment or care of the disease process. It has everything to do with sensationalizing the disease in order to draw in contributions for research.

The disease is presented to the public in such dramatic ways to produce fear and alarm in the public about succumbing to it. As the people having it grows finding a cure becomes more urgent. The professional support network has maintained this melodramatic characterization to cause alarm intended to produce more funds in research.

This was dramatized by Harry Johns President and CEO of the Alzheimer's Association who, on January 27^th 2011, declared: "Alzheimer's is a tragic epidemic that has no survivors. Not a single one!" He made this statement which was accompanied by a journal giving the statistics of the rampant growth of AD as it has reached epidemic proportions. He went on the say there was nothing that could be done to arrest the disease or even slow it down. The only way to control the epidemic is to eradicate the disease by finding the cure.

This subject will continue in my next post consistent with what I have been saying as part of this topic, namely:

My topic is Alzheimer’s Disease (AD) and/or Dementia. My position is this: In Advocacy and Definition of so much about AD Dementia is simply all wrong!

There are too many other schemes going into the servicing of the needs of AD and those affected to produce competent and adequate treatment.

How to Face Fear with Knowledge Part VII

My topic is Alzheimer’s Disease (AD) and/or Dementia. My position is this: In Advocacy and Definition of so much about AD Dementia is simply all wrong!

There are too many other schemes going into the servicing of the needs of AD and those affected to produce competent and adequate treatment.

When I was re-born in Dementia World (namely diagnosed with atypical Alzheimer’s Disease) I was appalled by the confusion in definition of what in fact is AD what is Dementia and whether or not the two are the same, different, or one part of the other.

There was clarification of what it was that I had. I had a number of limitations associated with dysfunction in parts of my brain disclosed by history and validated by testing. It included primarily limitations in Executive Functioning, Multi-Tasking and Visual Perception. Memory and cognition had faults but were not abnormally low like the three preceding functions.

In many ways my diagnosis told me what my dysfunction was not. It was dementia; it was not typical dementia; it was not typical AD. The final conclusion was it was atypical dementia of the Alzheimer’s kind.

As a result I knew I had limitation in the way I functioned which produced limitations in what I could do and not do. I could not drive. I could not ride my bike. I could not handle money or keep account of it. I became too anxious in reviewing financial matters, became too anxious in crowds, felt intimidated when I was with normal people as I tried to keep up with conversation, activity and normal social interchange.

At the same time my cognition remained good, my memory was good, my ability to read, to write, to speak publicly to generally care for myself with the help of my wife Diane remained good.

In the five years since diagnosis I have deteriorated some. I have difficulty finding words; my spelling which was near perfect has turned atrocious; I tend to become more anxious in a variety of instances. One of the instances is emotional upheaval; I cannot take it and get very depressed when it happens.

It is really typical of the residue of stroke damage. I have a history of mini-strokes (TIAs). It is for this reason I chose the neurologist I did. He had treated me for these strokes, and his specialty is stroke treatment. I am however told by my neurologist and the first neuro-psychologist although it had earmarks of stroke the findings were more consistent with atypical AD

Early on following diagnosis I was treated by a clinical psychologist who had specialty qualification in AD and Stroke. When I pointed out my cognitive acuity and questioned it as AD he told me I was just manifesting a high cognitive reserve. He explained that due to my basic intellect which was on the high side, coupled with my education and professional experience I had a large cognitive accumulation. The disease likely damaged my cognition but there was a lot left after this which I could work with. This is what accounted for what appeared as undiminished cognitive ability.

This made sense. It made more sense as I followed the recommendations about how best to retain and or increase cognitive ability. I adopted the formula for enhancing cognition the rule known as the BEST PRACTICES which consists of this: “Eat Right, Exercise Daily, Get Involved in Stimulating Intellectual, Social and Creative Activity, Take your Medication.”

I have endeavored to follow each of these admonitions, the hardest of course, maintaining a consistent exercise program. Reading and writing is probably the greatest of my involvement.

The writing I do on this blog and in other publication, which involves analyzing much of what I read has been an excellent activity for me. I write almost 2 – 4 hours a day. I socialize and advocate within AD circles. I attend the Gathering, an excellent one day twice a month program put on by Oak Knoll Lutheran church. I maintain my friendship with the four amigos, AD peers of mine. I do a lot of artwork, and work with and/or attend tours with two Art Galleries.

This not only helps me, it has made me an advocate for the overlooked needs of Early Stage Dementia sufferers who have been virtually abandoned by the professional community. Those, together with the high cost of care and the absence of economy in care, have been the two issues that have sparked my passion as a writer and an advocate.

This has effectively given me a cause with which to finish this final phase of my life. It could be depressing were I not to have it. In having it and learning to cope with it I have learned what is truly important in living. Before my diagnosis I was in charge of my future, I saw to my happiness. This is typical of all of us. An adage of mine has been: “A young person wonders what she or he will be.  A middle age person strives at what he or she has become.  An old person ponders what was its worth?”

I never found satisfaction doing this; everything always came up short! I crossed the river into Dementia World and this all changed. I recognized in what I was doing I had found my purpose in being alive. Everything that preceded this was foundation for where I was and what I had to and could do with what happened. I dedicated the remainder of my life to writing about Dementia from the unique position I was in, namely on the inside!

This background leads me to my next subject which will be in my next post. It will be a greater fleshing out of the two paragraphs with which I started this post, namely:

My topic is Alzheimer’s Disease (AD) and/or Dementia. My position is this: In Advocacy and Definition of so much about AD Dementia is simply all wrong!

There are too many other schemes going into the servicing of the needs of AD and those affected to produce competent and adequate treatment.

How to Face Fear with Knowledge VI

Is It a Disease of “The Alzheimer’s Kind?”

Thoughts:

• The practice of medicine is a form of art. It is a practice of seeking a solution to the reason for the symptoms a person has by identifying its cause and treating both the symptoms and the cause.
•  
• Its method as executed by the practitioner of it includes his/her taking the entire history of the person suffering  including the part of the history which brought the person in seeking medical care.
•  
• The practitioner than enters after the history a list of all of the possible maladies the symptoms could be.
•  
• The practitioner then orders any tests qualified to reveal facts about the complaints bringing the person in seeking information not otherwise evident from symptom history or manifested on presentation or during examination. He/she also performs any tests for the different maladies appearing on the list of what the problem might be.
•  
• Initially as the tests are able to rule out any of the maladies they are removed from the malady list.
•  
• The practitioner then consults and takes note of all the medical knowledge available concerning the history and complaints and the test results along with the practitioner’s own knowledge and experience concerning the suspected maladies.
•  
• Once all of this is completed the practitioner will then go back to whatever is left on the malady list not otherwise eliminated and consider anything left as a likely candidate for cause.
•  
• From all of this the practitioner is then able to analyze all of it and form a conclusion defining the problem so it can be treated accordingly.
•  
• Based on the foregoing procedure the practitioner can also make a diagnosis by default using whatever is left on the list of maladies.
•  
• The key to a good diagnostician in the practice of medicine is having an analytical mind that can take in all of the facts and circumstances and make a reasoned decision about what they signify, if anything.
•  
• In more recent time the medical field has been inundated with scientific tests that purport to give exact measures in the results of what they test.
•  
• These aids have been most helpful for those using them as an assist. They are fatal to the practitioner who relies on them and nothing else in the symptom collage the patient presents.
•  
• The unfortunate turn of events that has accompanied this testing availability is too many practitioners and most of the public see the practice of medicine as a science. They expect of it the exactness the system of science often is. They cannot tolerate the ambiguity offered by the dubious practice of an art form which in fact medicine is.
•  
• They want answers. A “could be this or could be that”, or, “take this and call me in the morning” are not satisfactory.
•  
• As a result more practitioners rely on dials and dip sticks rather than their training and experience.
•  
• It is in this that the Diagnosis by Default often occurs. The malady list, after all other possibilities are ruled out, can be determinative of diagnosis. Under the rules of “Good Medical Practice” and within the definition of “Medical Certainty” whatever remains on the malady list of can diagnosed the cause of the symptom complained of.
•  
• No independent knowledge or fact need exist to qualify this as a reliable reason. The medical schools call this Differential Diagnosis. It is taught in the first year as the primary tool for diagnosis disease. If the formula if followed flawlessly the practice of medicine says what remains is IT!
•  

It is in this framework we have experienced the following:

• A 110 year effort to classify all dementia that can be called “of an Alzheimer’s Kind” into one illness. Each person diagnosed as stricken with it must have a similarity of symptoms to those the profession has predetermined to be the symptoms typical of one with Dementia “of the Alzheimer’s Kind.”
•  
• This reduces down to making a diagnosis of inclusion. It reduces the symptoms that might fit. It makes a surer diagnosis. It makes the class of the disease far more workable for the professionals.
•  
• This leaves the rest of the Dementias in the class of exclusion by default. It makes no determination as to what the symptom collage might be; it determines what it is not and leaves it swinging in the wind right there.
•  
• The purpose of all of this is to try and find the cause of the disease they have crowned with a name. The fewer different symptoms involved the more likely one mechanism can be discovered to be the cause and this be attacked with a magic pill if and when one is discovered.
•  
• This does nothing for the rest of the Dementias or the people suffering a similar disease that does not qualify as AD. Theirs is just as intrusive and damaging a disease. It produces the same limitations. It requires the same attention. It needs the same caretakers and support symptoms. It will affect families, communities and our country in all of the same ways.
•  
• Its only difference is it is not a disease of “The Alzheimer’s Kind” and therefore does not qualify for a name, support or and concern whatsoever. It doesn’t count!

How to Face Fear with Knowledge Part V

(We Have Come so Far these Past 80 Years, NOT!)

I AM USED, ABUSED, BUT MOSTLY CONFUSED! That is my view five years down the road to greater envelopment in Dementia World.

The articles listed below which I have posted on my archive each deal with the next phase in my discussion.

Click on each to go to my Archive to read them.

1.     Broader Definition of Alzheimer's Could Help Doctors Diagnose it Earlier

2.     Is Alzheimer's disease really curable?

3.     Alzheimer's: What if there's no cure?

That phase of my discussion bears on what to do until a cure is found for Alzheimer’s Disease (AD) and/or Dementia? The articles go a step further suggesting a cure may not be found. What then? The question then becomes even more critical!

To add to the discussion I refer you to How to Face Fear with Knowledge Part III which discusses a post to my archive entitled Challenges Accepted Approaches to Research in Senile Dementia (Alzheimer’s Disease. It is the context of these article and others like it that cause great concern in me. This together with what I consider the hidden agenda of the government and public support groups create my need to speak out.

We with the disease, our families and those who care for us, suffer more consequences of this disease than we deserve. We face an extremely unfair and high cost for care not given by our families. These costs produce profit for investors and drain our funds to nothing. If we received some of the attention given to raising money for the cure, if attention were also paid to efforts to find economy in care, we could all be better off.

It is costing us now. This will accelerate as the numbers with the disease increase exponentially. A quantitative increase will result as diagnosis is made earlier and as the “Boomers” enter their senior years as they have this year. Boomers will be reaching age 65 for the next eighteen years.

Costs currently are confiscating our personal funds. Once we are wiped out financially we will go on the “Dole” collecting public funds to care for us. As the number of those afflicted increase, this will obliterate public funds to the point of exhausting all backup funds for care.

This is serious! Absolutely serious, as we blindly follow yesterday’s path which led to nowhere and continues leading to nowhere now. It seems folly to apply more funds to research until the researchers produce some concept of cause of the disease more than the assumptions currently made that have produced no result in the past 20 years.

Is the foregoing no more than posturing?

I have been on watch for the past five years since my diagnosis. 


Fortunately I can still read, understand, analyze, draw conclusions and write about it. I have served on the National Advisory Board during 2008-09, appeared part of a panel before a joint fact finding meeting of the National Alzheimer’s Association and the Federal Agency on Aging in 200; I have been active at the local level of MN-ND Alzheimer’s Association and I served on a committee appointed by Minnesota’s Governor to draft legislation for an overhaul of services for AD in this state.

Throughout all of this involvement and all of this work I have become convinced that those of us with the disease who are called on to participate are called because we are specimens; we are something to wave as a sensationalized flag, piping “this guy has it, if you are not careful you will get it too, unless you give us money to fund research to find the cure, and we can make AD disappear.”

It is in this I feel very used, and abused by the use made of me and my disease. I have been interviewed by media locally, nationally and always my plea has been, give us more programs, more help, concentrate on finding Economy in Cost before we all individually, as a community and as a country are broken financially.

The four articles noted and posted are rife with statements of the futility and subterfuge of public support and governmental activity to deal with AD. They but deal with one issue, money on more money. “We do not have time for programs; we can do nothing about cost” they say. They say this as we suffer the cruel reality of it.

When we start to recognize the subterfuge of it, the use made of us to sensationalize their efforts, the way we are exploited, it is no wonder that we are shunned and abandoned in our community and circle of family and friends. As Dr. Alzheimer’s said in 1902 and doctors continue to say in 2011, “There is nothing we can do for them but keep them safe and institutionalize them when that is no longer possible.”

I quote from the four posted articles as a “teaser” of what content they have:

Although intensely investigated over the last three decades using cutting-edge technologies, the “pathogenic cause” of Alzheimer’s disease has not been found. While many research “breakthroughs” have been claimed and high-profile drugs trials carried out, why does the promised “cure” still seem to elude scientists?

[How to Face Fear with Knowledge Part III]

For the first time in 27 years, health authorities have expanded the definition of Alzheimer's disease.

The change, announced last week by the National Institutes of Health and the Alzheimer's Assn., is intended to help doctors diagnose patients in the very early stages of the neurological disorder, including those who have yet to develop any outward symptoms. The new approach could ultimately help millions of older Americans spend more years with their mental faculties intact.

By the time a patient becomes demented, it is "too late" for medications to be of any help, says William H. Thies, chief scientific and medical officer of the Alzheimer's Assn. in Chicago. So researchers are trying to develop drugs that could slow the progression of the disease, for which there is no cure.

[Alzheimer's: What if there's no cure?]

The decision by health experts to separate Alzheimer's disease from age-related dementia and deem it potentially curable "opened a Pandora's box" and may have misdirected research for decades, a team of scientists suggests in a new analysis of the field.

Despite great efforts to find treatments to stop or slow progression of the disease, there are only a few medications for Alzheimer's disease and they only help mitigate symptoms, not the disease process.

[Is Alzheimer's disease really curable?]

Dr. Ming Chen at the University of South Florida suggests that "tremendous social pressures" have pushed scientists to target Alzheimer's as a curable disease. Despite all the research, however, they say the cause of the condition remains unknown and "there seems no major progress expected any time soon." The researchers are not proposing giving up on treating Alzheimer's. In fact, just the opposite: They believe scientists should refocus efforts from searching for an underlying villainous pathogen to manipulating neurotransmission in the brain.

In other words, to deemphasize the quest for a cure and to look instead for effective prevention and treatments that focus on dementia as part of the aging process. They stress the importance of controlling risk factors, such as diabetes and hypertension, that are believed to make people more vulnerable to developing Alzheimer's, and energizing the aging brain through social activities.

As the baby boom generation ages, dementia will become a larger social and healthcare problem.

Scientists would be remiss if they weren't constantly reevaluating their mission and direction and reconsidering funding priorities. They should certainly seek more effective treatments for Alzheimer's, and there's every indication that they are

[Broader Definition of Alzheimer's Could Help Doctors Diagnose it Earlier]

How to Face Fear with Knowledge Part IV

Quality of Life IS Possible After a Diagnosis of Dementia

 So says Judy Berry on life after dementia. Judy is the operator of Lake View Ranch in our state. She has national recognition for running an operation caring for the difficult behavior patients afflicted with Dementia. Click on the title to go to the Judy’s article on Alzheimer’s Reading Room or click on Archive to read it there.

Judy starts the article with a number of key affirmations that caught my eye:

Importance of early diagnosis. It is EXTREMELY important for anyone experiencing any of the symptoms of dementia, for example, memory loss, confusion, personality changes--to seek an appropriate medical diagnosis. Some diseases--uncontrolled diabetes, some thyroid conditions, medication side effects and many others--mimic symptoms of dementia, yet are completely curable and reversible.

Moreover, the early diagnosis of Alzheimer’s disease, vascular dementia or other types of dementia facilitates early interventions that can maintain the highest possible quality of life and considerably delay the onset of debilitating symptoms.

Dementia as a family disease. As a long-term caregiver for my own mother, I absolutely understand the tremendous disbelief, denial, frustration, fear, and anger associated with being a caregiver for someone with a disease that appears to rob us of the person we have known and loved because they lose the ability to communicate in a way we understand. I know first-hand how hearts are torn and emotions worn thin trying to deal with feelings of helplessness and hopelessness. Dementia is a family disease: as a caregiver or family member

She then goes on to advice for caregiving which is good in all cases, superb when dealing with behaviors that are difficult to happen. There is so much that can be done for us at all stages other than dealing only with those in Early Stage.

Judy’s Lakeview Ranch operation concentrates on this and offers those who would not otherwise have quality of life a full quality of life. Her’s is affirmation and direction in the field of the many needs we have in living day to day that are currently so vastly overlooked.

In my next post I should get back to what I said in my last post, namely:

“This leads me to the next topic I will deal with in my next post. Well-meaning as all of the professionals are, particularly the fund raisers, something fundamental seems awry. I have believed a silent agenda exists that is the reason for the singular approach of the Alz.Assoc. I am deeply troubled by the sense of being used as one afflicted with this disease. We are listened to appointed to serve in an advisory way on a variety of boards, but we are not heard. We are patronized, patted on the head and made available to the media to give personal testimonials in the nature of “A Day in the Life of One Afflicted by Alzheimer’s”

How to Face Fear with Knowledge Part III

Alzheimer’s Disease, since first identified in 1902 by Dr Alois Alheimer, was not then understood. It is not understood much more today. Generically it is a name given to common symptoms of brain damage or brain dysfunction that starts out gradually and progresses to the point that it takes the mind then the body and then the person afflicted with it. When it is done wreaking its vengeance the person dies.

It falls under the class known as Dementia. There are other kinds of Dementia, the most numerous diagnoses is of those said to have AD. The process is nonetheless the same. The brain and the body go than goes the person with it. In the later stages little can be done for the person with it other than trying to make that person comfortable. In the earlier stages much can be done to secure the person afflicted with a good quality of life, and keep her/him functional and out of institutionalization as long as possible. This adds to quality of life and saves society the cost of care which is intolerably high.

The history of AD treatment and diagnosis is checkered. Until the late ‘60’s and early ‘70’s little was known or discussed about it. It was an old people’s disease, contracted only by the person old enough to have it, and then it was considered more likely senility, a simple aging breakdown of the brain’s ability in cognition. No great attention was given it, if you were “lucky” enough to live long enough it is something that came with that geography.

In 1970 the numbers grew enough to create concern in the professional community. As related by a charter director of the National Institute of Health (NIH) in an address of his I attended he stated that it was around this time the government started to fund the NIH with the directive that they deal with AD. Getting into the field the NIH found research deficient as to identification of the mechanics of AD and/or how to deal with it from a care stand point. They were particularly concerned about the total absence of knowledge about what happened in the body to bring the apparent brain cell damage about, and how to arrest its progress in doing that.

He explained that the NIH did not have the mandate to do research. Research of AD was horribly deficient. They could not expend their funds to do research. Therefore, in conjunction with another group trying to form a group to deal with AD, they formed the Alzheimer’s Association. They gave it the direction to become involved in raising money to fund research on AD.

Very quickly the funding activity narrowed to that of raising money to find the cure. This is why they were formed; (according to the rep from NIH) this is what they were charged to do. They have been doing that ever since.

I was floored when I heard this. I have found nothing to validate this statement and serve as another source until doing research for this article. I found a published article entitled New Study Challenges Accepted Approaches to Research in Senile Dementia (Alzheimer’s Disease). You will find it in my Archive by clicking on the title.

Noteworthy portions of the article said the following:

Although intensely investigated over the last three decades using cutting-edge technologies, the “pathogenic cause” of Alzheimer’s disease has not been found. While many research “breakthroughs” have been claimed and high-profile drugs trials carried out, why does the promised “cure” still seem to elude scientists?

In an effort to address this question(the  author’s) undertook an independent and systematic analysis of the underlying research assumptions against the established scientific principles.  This analysis led them to hypothesize that perhaps the main problem is the research community’s perception of the disease.  

…the authors suggest that when the National Institutes of Health separated out dementia from other senile conditions and redefined it as a distinct and “curable” disease — Alzheimer’s – in the 1970s, it opened a Pandora’s box and may have misdirected research for decades.  It triggered the search for pathogenic factors and cures, and disregarded the role of demographic change and its diverse end results in the elderly. 

The authors argue that senile disorders – diseases occurring after age 60 and eventually affecting the majority of the elderly, such as tooth, hearing or memory loss – are caused by aging, thus differ fundamentally from distinct diseases by origin, study paradigm and intervention strategy…

…  “Lifestyles and other risk factors are the key.  So we think that senile dementia may be explained by ‘advanced aging plus risk factors.’  This model points to a new direction for prevention.  This means we must support the elderly in healthy lifestyles.  And we should develop medications to extend the lifespan of old neurons, rather than looking for ways to inhibit far-fetched ‘pathogenic’ factors.”

…Since they have not taken into account the fundamental roles of aging and risk factors, it is clear that these theories, though highly appealing to the public and researchers alike, are of little relevance to the scientific nature of senile dementia.”

“The two overwhelming concepts, senile dementia as a distinct disease and the Ca2+ overload hypothesis, have effectively blocked any meaningful progress in senile dementia research, and have inhibited the self-correcting mechanism of science,” concludes Dr. Chen.  “An independent scrutiny on the field may be helpful.” 

The agenda of the Alz.Assoc to raise money to fund research is a wonderful mandate to follow.

Nevertheless it should be stated by them openly instead of sensationalizing the disease as they do in an effort to raise funds. Each of the state satellites of Alz.Assoc is charged with raising money, was required to pay over 40% of what they raise which has now been increased to 60% I have read . (See: The Local Versus National Alzheimer's Presence by clicking on it and go to my archive where I have an article discussing this by a person from Wisconsin)

Not disclosing the cut and the singular agenda raising funds is tantamount to fraud. Worse than that it is exploitation of those of us with the disease to work for the funds and wave our limitations before the public.

Never do we hear from the Alz.Assoc “Let’s help out the folks afflicted by the disease remain functional.” The absence of such comments and the further absence of meaningful programs for early stage validate this. There is no attempt to attack the cost of institutionalization or find economy in care. They are just too busy with fund raising activities.

Some local chapters becoming aware of this discrepancy in activity have been withdrawing from the Alz.Assoc and refusing further funding to them. This seems be heard because all of a sudden we are seeing activity starting to fill this gap.

As recently as January 27^th of this year Harry Johns President and CEO of the Alzheimer's Association made the following comment as a news release:

Alzheimer's is a tragic epidemic that has no survivors. Not a single one,

As part of that release he went on to say, almost quoting Alois Alzheimer, there is nothing we can do for them but keep them safe and make them comfortable when finally we must institutionalize them. Based on this supported by a publication of the Assoc. that stressed the numbers and the coming epidemic level that AD will reach, he stated only option to stave of the negative affect is raise more money to find the cure.

In my career as a trial lawyer I have heretofore stated I learned a lot about medicine. One case I handled in upper New York State was that of a child with a pre-natal developmental disorder. My friend the doctor who worked with me put me in contact with one of the top experts in the country at Harvard. His field was Pre-Natal Developmental Disorders. I retained him, sent him all the information he needed and asked his advice and direction. I wanted to know what I was dealing with.

He told me there were as many different pre-natal development disorders as there we children born with them. Each one was different than the others. The medical practice dealing with them tries to categorize them under similar symptoms. He used Down’s syndrome as an example. Everyone believes this is one illness. It is not, each one is different. There are similarities like so-called Mongoloid eyes, short lifespan, limited cognitive ability etc. But each one is different from all the others. These disorders do not have a singular source of cause and singular way of treatment.

I remembered this when I encountered AD. It seemed to me AD was as generic as Dementia. The fact the Dementia included AD, this made it larger in number than AD but little else made each person having it different from all the others. It struck me that it each case has no common cause. Some of the causes are genetic predisposition, early onset, later onset, different limitation and different courses of the disease.

How could the professionals hope to find one medication that would get at the core of the cause of the disease in order to put an end to it?

This leads me to the next topic I will deal with in my next post. Well-meaning as all of the professionals are, particularly the fund raisers, something fundamental seems awry. I have believed a silent agenda exists that is the reason for the singular approach of the Alz.Assoc. I am deeply troubled by the sense of being used as one afflicted with this disease. We are listened to appointed to serve in an advisory way on a variety of boards, but we are not heard. We are patronized, patted on the head and made available to the media to give personal testimonials in the nature of “A Day in the Life of One Afflicted by Alzheimer’s”

How to Face Fear with Knowledge Part II

In my professional career, that of a trial lawyer, I learned a lot of medicine. Particularly in the ten years I was National Counsel for third largest chemical company in the world. It was in that period that I had a Doctor with certification in the field of Industrial Medicine who was assigned to give me 100% of his time. He was charged with teaching me the medicine of each case we handled, researching the medical issues of each case and connecting me with the top specialists in each field of medicine to help and to testify on the medical issues raised in the case.

We travelled together from state to state, case to case, and had a lot of time to discuss medicine. I took advantage of the source and learned all I could. It was this background and training and the balance of my 43 years of practice with which I came to this new world of Alzheimer’s Disease (AD).

When I arrived I was appalled by the confusion in definition of AD, the explanation of what it was that I had. Definition was all over the board, supported by the biases of the person having an opinion and giving a definition. It also seemed loaded with hidden agendas.

I did the usual thing I did then and continue doing now. I totally immersed myself in the field participating in every way I could. When first diagnosed my wife Diane made contact with our local Alzheimer’s Chapter. As follow up I met with an officer who had recently been appointed and charged with organizing their outreach program.

Starting there I was put in contact with other’s carrying the same diagnosis as mine. Soon I was participating in a meeting given to investigating ways and means of helping people diagnosed in the early stages of the disease. Most of the social service groups in our metro area wishing to provide services for us were in attendance. Those of us with AD were there as the real live specimens.

We learned a lot. Out of those meetings I met 3 other guys with AD who participated. We started to pal around together and formed a support group of the four of us and our wives our caretakers. Three of us were ex-lawyers, the fourth an officer with an international construction company. Above is a picture of us showing the "Three Amigos." First is Jerry, second Earl, I am on the right. At that time our number dwindled to 3 Alan, the fourth having deteriorated very quickly and had to enter a Nursing Home. His disease had the genetic component which in his case produced a whirlwind of deterioration. The others of us are going more slowly.

We were contacted by a representative of a group who did Day Care Programs. She met us at the meetings held at Alz.Assoc. The particular Day Care Program was conducted at Oak Knoll Lutheran Church in Minnetonka. It was known as the Gathering. It was operated by a Lutheran Group formed by congregations in the metro area. We were told it would suit us well, geared to Early Stage folks. We became involved and found it was no more than a baby-sitting service.

Not given to sitting back we objected and started meeting with the director. I was one; the construction guy was the other. Our point of objection was the operation was geared to mid and late stage AD, not to those of us in early stage. For us sitting in a chair doing exercises, watching reruns of “I Love Lucy” having one of the volunteers go through the morning paper explaining the news articles and a variety of other infantile activities were boring and insulting. They were not consistent with the program as represented to us when we were asked to join.

The director had us meet with all of the volunteers to discuss our concerns. I am pleased to say they all heard us and started to modify the program. They also invited us to join in the program planning which we have done enthusiastically.

That was more than three years ago. Now the program is excellent and every one of us looks forward to attending every other week as it is scheduled. There is plenty of activity involved in the meetings, that include field trips, one of our favorites is going in group to a program called “Feed our Starving Children” which prepares and packages food for starving children in Africa. We go there and spend a half a day packaging the dried food for shipment.

We are offered the opportunity to conduct programs as well. I am actively involved doing computer art. Jerry, the construction guy, and I put together a program demonstrating doing art on computer with Photo Elements, an easier form of Photo Shop. We arranged computers for everyone and we went to work as artists.

One of the volunteers is an active graphic artist. He often leads us in activities in the graphic arts. We have 4 year olds from the day care program conducted by Oak Knoll come in every time we gather and spend an hour with us. Each child brings a craft. We work one on one helping them complete the craft project.

We have grown to love these kids. Last Christmas we put on a Christmas party for them. We had games, a little gift exchange, trimmed a little Christmas Tree and I gave each of them a copy of my children’s story entitled “How Philip the Firefly Saved Christmas” which was also read to them at the party. For anyone interested the book is available on amazon.com, click on How Philip the Firefly Saved Christmas to go to Amazon to look at it.

For May Day we put together a program for the kids making May Baskets. We put together a simple paper cup, silk flower and pipe cleaner kit for each of the kids and they made this:

Jerry built a May Pole and we conducted a May Pole dance with the kids:

  

My purpose in detailing the Gathering is this: It fits our needs so well. It came from our involvement in working within the system to help ourselves and getting the system to help us. In the five years I have been involved in AD World I have seen many changes for the better. Nonetheless there is so much in which they are missing so many good things that can and need be done.

This introduces the next phase of my topic. That is the history of what has not been done and the confusion I have for one person as to why this happens to be. 

How to Face Fear with Knowledge

I was diagnosed with Alzheimer’s Disease (AD) in 2006. The only quasi objective testing conducted was a simulated driving exam I took at the Sister Kenny Institute at Abbott Northwestern Hospital in Minneapolis MN where I live. Outside of that test the neurologist we consulted finished our interview that included his taking a very detailed history with a diagnosis “You have AD!” The neurologist we saw was the one who treated me for two of the five or more mini-strokes, (TIA – Transient Ischemic Attack) I had. We went to him fully expecting a diagnosis of some Dementia from the TIAs.

Both TIAs for which I sought treatment involved the temporary loss of sight in my right eye. Amorosis Fugate they called it. The other three TIA’s I was conscious of occurred prior to the two affecting my eyesight.

Having dealt with the Neuro-Psychometric Test in lawsuits when I was a trial lawyer I knew immediately I wanted one. In fact knew it so well that I had set it up and had it scheduled before I saw the neurologist. After sitting through 4 – 5 hours of neuro-psychometric testing, after the evaluation of the “Raw Data” by the Neuro-Psychologist by the name of Erin Holker, at the U of M Hospital she diagnosed me as having atypical dementia of the Alzheimer’s kind.

In the course of reading the exam results she ruled out other dementias including vascular dementia which I expected it to be. She diagnosed it as atypical because I did not have the memory deficit typical of normal AD. There were other limitations, such as, very low score in Multi-Tasking, Executive Functioning, and Visual Perception, giving cause to assessing the problems described in my history as AD. It wasn’t limiting enough on memory to be able to call it a typical AD.

My wife Diane and I left the hospital continued on testing and another consultation with the neurologist, Ron Tarrel, started taking Namenda and we were off on our merry way to learn what we could about AD and what we should be doing about it.

It with on this undertaking that we entered the Sea of Confusion about AD.

The first element of confusion in what I had been diagnosed as having. I had a second neuro-psychometric a couple of years later to mark progression of my deterioration. This time we went to the psycho-neurologist at the clinic where Tarrel practiced and where the neurologist I switched to in that clinic practiced. I switched to Dr Richard Golden, who was considered the AD expert in our area.

After the second Neuro Psychometric exam the Neuro Psychologist said I probably did not have AD although he could not rule out A-Typical. I received another negative determination from a Psychologist, considered the expert on AD in the Abbot Northwestern (aka, Allina) system, shortly after the exam at the U of M. I very carefully made sure this second neuro psychologist had the test results and the raw material taken down in testing. I wanted him to have the benefit of what was done when I couldn’t get into see him earlier, which prompted me to go to the U of M to an examiner who carried an excellent reputation.

When I saw this second guy who started sounding off with my wife and me, I asked if he had received the material from Dr Holker. He didn’t know. He did know that he had not reviewed it. He then checked and found it in my file which he supposedly reviewed before his exam of me.

I suggested he take the time to review it. He said he did not need to, he could see enough from Dr Terral’s notes and the corresponding history. From that without further history from us he could conclude I did not have AD. I had dementia but it was not AD.

I left this guy quite upset by his supercilious review and off the top of his head diagnosis. I gave no credence to it whatsoever. Then two years later, the second exam and the same diagnosis this put me in a quandary. I had gone quite public with my disease advocating, speaking and writing up a storm about my experience having AD. If I did not in fact have it as two practitioners now opined, was I perpetrating a fraud with all who listened to me and read my material?

I therefore went back to Dr Golden who had ordered the second exam and who had reviewed both the first and the second. I wanted to know was I duping all who listened to me or read my material presented from the foundation of someone experiencing the disease and able to relate the experience and write about it.

Dr Golden said I should pay no attention. Everyone in the health care field wanted definitive findings before declaring they were AD. Diagnosis is still an art form not a science. Based on his background, education, treatment of patients, etc. he put it altogether into making a diagnosis. He went on to say there are as many different kinds of AD as there are people who have it.

He said everything I have fits an AD diagnosis. Keep writing, keep speaking and pay no further attention to experts spouting away demanding absolute criterion before diagnosis. This put me at ease on issues of honesty, but still left me swinging in the wind.

I am so different than my peers with this disease. This continually puts me in quandary. My cognitive skills remain fairly intact; I read well, I am told I am a good writer. I can speak and retain organization of what I have said and want yet to say. I have been writing almost daily the past four years. My writing skills have improved telling me I am learning from what I am doing.

Time and again I am told “You can’t have it, you are just too with it to have it!” This is disconcerting each time it occurs and always puts me into the dilemma I periodically have with my diagnosis.

I still have the limitations I had when I started this path. I am prone to fall. I did so recently, simply lost my balance. It took multiple sutures to stop the flow of blood. I still can’t handle money well, can’t keep a check book, can’t drive or ride my bike; I can do but one thing at a time if I try more I lose my way on both tasks. I do forget, not nearly as bad as other of my peers but it is progressing right along.

Nothing has changed and I am severely limited from the guy I was who conducted a National Trial Practice, managed and office of 60, spent ten years living in hotels and airplanes doing my trial work across the country and managing my office by telephone and fax. A good trial lawyer needs to be able to balance many balls in the air all at once and continue to be up on the case he is trying. I was a master at this known as Steel Trap Jaws, so-called because I never let anything slip by.

Now, all of this is way beyond me…

What I have written is prequel to my primary topic which will be covered in the posts that follow. The topic will be that of the screwed up field of AD Advocacy and Professional Definition of what in fact AD is.

It is my position that there are too many other agendas going into the servicing of the needs of AD and those affected to allow the making of a competent and adequate treatment plan.

I have posted an article by Deepak Chopra entitled: Alzheimer's Disease: How to Face Fear with Knowledge (Part 1). In the essay Chopra describes what AD is in his view. The article is well written, fits the mainstream of opinion on AD and is a good starting point. I will follow with issues raised with the so-called mainstream view.