news

Hello.

At a recent conference on Alzheimer’s Disease, advocates were told the old/new strategy (justification for spending lots more money on research) is not necessarily to cure the disease right now, let’s at least discover enough pills so that if people will take them, and they can afford them, and there are side effects which people are willing to live with, and did I mention if they can afford them - then the symptoms of the disease will be sort of frozen - they won’t get any worse, they won’t get any better - folks just won’t have to deal with  more of them.

In the mean time, researchers will be working day  and night to discover the elusive cure for the disease(s). They will be working on ways to reverse the course of the disease. The goal is to live in a world without Alzheimer’s disease and a world with no one living with the symptoms of the disease caused before we discovered a way to cure it.

“Oh!” say I and 10 million people already living with the disease, “Why didn’t you just tell us what you wanted to do to and for us in the first place?”

So now the justification for lots more money = lots more research = more results is: “we won’t necessarily cure the disease, just halt its progress.” So a “world without Alzheimer’s,” while still the goal, will first become a world with lots of Alzheimer’s, only the progress, severity and number of symptoms will be slowed, or perhaps even frozen in place.

If we can’t figure out what causes it - maybe we can figure out how to slow it down to the point where we can maintain people in the disease (with whatever symptoms they are currently living with), perhaps even keep them at home for an extra year before they “must” be institutionalized (that would save the government big Medicare bucks).

What if folks can’t afford the twice a day hands full of pills needed to “halt the progression?” We can give them a tax credit.

What if the progression isn’t being halted, only the outward symptoms are being held in check? Isn’t this essentially what current medications claim? The disease progresses at about the same rate in everyone, but take these pills and it will be awhile before you quickly catch up (symptom wise) with folks who haven’t taken the pills. We can all be thankful they didn’t act as if they were getting worse.

Maybe, with the extra year or two we can “buy” with these pills we will discover a cure! Maybe we will discover how the brain works!

Maybe we will discover what happened the second before the big bang!

Former Speak of the U.S. House of Representatives Gingrich told us we are going to know five times more about the brain in the next six years than we know today. Surely more is better…or perhaps more is simply more. And….therefore….perhaps……

Maybe, maybe, maybe.

What about today, damn it! What about tending to the real needs of today’s citizens? Have we already done our best to figure out how best to live with the disease? How to find a new purpose in life living with the disease? How to be happy in a nursing home? How to convince families to honor, respect, and invite into their homes their own parents? Of course not.

Research, effort into these current problems of real people is not as glitzy as discovering the “breakthrough” that leads to the cure of the disease (if indeed it is a disease amenable to a cure in the sense that “here take this pill and you will be better, cured as it were”).

It’s harder to figure out - too many variables - too complicated. Well that doesn’t keep us from throwing more and more money at brain research. Save the brain and ignore the person, the family, the community in which the brain lives.

Maybe we will and maybe we won’t, figure out how the brain actually does and does not work. The point from my perspective as one living with the disease is how easy it is for people who don’t have the disease to convince themselves living with the disease for a year or two or three or four more beats not living with the disease for a year or two or three or four more because they died. Shouldn’t someone ask us? Shouldn’t we be included in these initial huge decisions being made by of all the people the folks who have the least to benefit from the decisions from the point of view of the consequences of the disease but the most to gain from it for a variety of mostly well intended but certainly with more than a teaspoon of self interest?

I don’t questions anyone’s motives, I question their 100 year history of failing to involve the people in whose name they act in the decision making process. Now we’re talking big bucks, now we’re talking about the survival of Medicare as we know it. Now, and always we are talking about adult human beings - not children, not beings, -human beings. This current national dialogue that has taken 100 years to begin, began with one person with dementia speaking up and then…..Let’s get back to “the experts.”

Let’s talk to knowledgeable caregivers, to M.D.s to representatives of organizations dedicated to funding the search for a world without Alzheimer’s, let’s talk about the NIH, let’s talk about waste and fraud. But first and last let’s talk to people who are living with the disease. Let’s get them on the committee. Let’s work with them.

I tire over trying to think through some of the cock-eyed rationalizations self-interest groups think up to justify giving them more money, while ignoring their lack of progress and their lack of a consensus even amongst themselves that what they are doing is the “best” course of action. We won’t be here tomorrow. We won’t be the leaders. But, we are here today, and others will be here tomorrow. It isn’t right to expect people with dementia to be the “voices of reason” in the setting of National priorities concerning their disease. It also isn’t right to exclude them.

Wait a minute, at least a minute, perhaps even two or three before we rush off trying harder (this time with an adjusted justification), still  without a strategy other than more must be better, still without a consensus of where best to spend all these extra bucks we found somewhere, still without knowing how or even if we can deliver something we discover to the parts of the brain we have yet to identify, and now acknowledging the best we are now hope for is to freeze human beings in whatever state they are with the disease (no one dares to say we are actually going to “heal” the brain when it comes to dementia).

So here I am. Here are almost 10 million people living within one of the disease of dementia, trying to get through the day, around our symptoms. Watching a national debate from the sidelines about us.

Am I the only one who thinks “they” (whoever they is) keep making stuff up as they go along? Blind to the sides of the boxes they helped to build around themselves. Defensive when other stakeholders (dare I say the real stakeholders - the people with the disease) ask (increasingly demand) to be part of the process - not maybe/just advisors.

Is that what leaders do?

Richard

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As many as five million Americans are living with Alzheimer’s. The popular perception of the disease is that people who receive an Alzheimer’s diagnosis are lost to themselves and to those who love them-and that they have no future. But as John Zeisel, an innovator in nonpharmacological approaches to treating Alzheimer’s, makes clear in this book, this view is wrong. The disease often lasts ten to fifteen years-a time span that definitely constitutes a future. In I’m Still Here, Zeisel shows that during the course of Alzheimer’s, caregivers can have a vibrant and meaningful relationship with people who have the disease.

I’m Still Here focuses on connecting with individuals with Alzheimer’s through their abilities that don’t diminish with time, such as understanding music, art, facial expressions, and touch. Zeisel demonstrates that people who have the disease are highly creative and emotionally intelligent. By harnessing these capacities, and by using other approaches to treatment-such as building memory cues into their living environment, which encourages independent movement and helps eliminate sources of frustration-it’s possible to offer them a quality life with connection to others and to the world.

Hello!

So, if I cannot always say what I mean and/or I have trouble meaning what I say, can I find other forms of self-expression to let what is inside me out? Out, so others may better appreciate me and perhaps even understand me? Out, so I feel better about myself?

The answers are yes, yes, and yes. Those diagnosed with early stage dementia can slow their physical, mental, and psychological decline by taking part in therapeutic programs that combine counseling, support groups, researchers report. Some of the benefits of this approach are comparable to those achieved with anti-dementia medications! Close the pill bottle and open the paint cans!

The findings are detailed in the American Journal of Alzheimer’s disease and Other Dementias.

“Most of the research on dementia and most of the dollars up until this point have gone into pharmacological interventions,” said Sandy Burgener, a professor of nursing at the University of Illinois and lead author on the study. “But we have evidence now from studies like mine that show that other approaches can make a difference in the way people live and can possibly also impact their cognitive function.”

In the study, 24 people with early stage dementia participated in an intensive 40-week program. The intervention included biweekly sessions of cognitive behavioral therapy and support groups, along with three sessions per week of traditional Chinese martial arts exercises and meditation, called qigong (chee-gong) and Taiji (tye-jee).

A comparison group of people with early stage dementia did not participate in these programs for the first 20 weeks of the intervention.

Researchers are discovering that multi-disciplinary approaches - those that address patients’ physical, mental, and psychological dimensions - show the most promise in treating people with dementia, Burgener said.

“There’s a lot of support for multi-modal therapies for persons with dementia, especially those with early stage dementia,” she said.

Earlier studies have shown that such programs can work as well as anti-dementia drugs, Burgener said.

Qigong and Taiji combine simple physical movements and meditation. Qigong is a series of integrated exercises believed to positively affect the mind, body and spirit. Taiji is a type of qigong that melds Chinese philosophy with martial and healing arts, said Yang Yang, a professor of kinesiology and community health and a co-author of the study. He is a master Taiji and qigong instructor whose research focuses on the efficacy of Taiji and qigong for older adults.

Cognitive behavioral therapy is a form of psychotherapy that seeks positive alternatives to the beliefs and behaviors that can undermine a person’s health and happiness. Research has shown that cognitive behavioral therapy and support groups aid those who struggle with depression and other physical or mental health problems.

Participants in the program benefited in a variety of ways. After 20 weeks, those in the treatment group improved in several measures of physical function, including balance and lower leg strength, while those in the comparison group did not. There were also positive cognitive and psychological effects, Burgener said.

“We saw gains in self-esteem in the treatment group and pretty severe declines in self-esteem in the comparison group,” she said. “Those in the treatment group also had sustained and slightly improved mental status scores, which meant we were impacting cognitive function.”

Both groups saw increases in depression, Burgener said, but the increase for those in the treatment group was a fraction of that seen in the comparison group.

No additional benefits were seen after 40 weeks, but participants were able to maintain their initial gains.

The program was so popular that she and her colleagues have kept it going for more than three years, with many of the first participants and their caregivers still engaged.

“The clinical findings, from my perspective, go far beyond the statistical findings,” Burgener said. “People were happier when they were in the treatment group. Two men came in with walkers and left without them. One is in our Taiji group three years later and is still not using a walker.”

Burgener is an advocate for further research into non-pharmacological interventions for people with dementia, which she sees as co-therapies to the drugs that are given to many people when they are first diagnosed. We need to clone her, or at least encourage other researchers to speak up and out about the need to fund more psychosocial research for people with dementia.

“Funders and insurance companies are willing to put money into drugs, but it’s been a hard sell to get money for these kinds of programs,” she said. I agree, said Richard Taylor!

Richard

New Site Helps Elders Share Their Life Stories

The Life Story Center at the Osher Lifelong Learning Institute National Resource Center in Portland, Me., recently launched a new interactive site for sharing life stories. The site enables elders and others of all ages to join in creating what is planned as the world’s largest fully searchable life-story archives on the Web.

An easy-to-use format guides users through the steps of telling their own life stories — or helping others do the same. The site also makes it simple to contribute a life story to the online archive.

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This is an interesting training video for professionals on art and dementia. It’s free (my favorite type of site), it’s interesting, and it seems objective and up to date.

MetLife MindAlert Lecture Series: Art and Dementia

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Join this group of world renowned gerontology and dementia care experts on July 31, 2009 for this conference on the UNCG main campus!

The purpose of this full day conference is to provide innovative best practice methods to maintain an active lifestyle despite the cognitive, emotional and physical disabilities older adults with memory loss so often face.  A balance must be found between medical and lifestyle approaches. This conference will highlight the latest research along with best practices from around the world. The target audience is recreational therapists, nurses, rehab professionals, long term care administrators, and advocates for older adults. [Download a Flyer]

5.5 CEU’s will be available for Nurses

5.75 CEU’s will be available for Recreation Therapists and Nursing Home Administrators

A certificate of completion will be given to all in attendance.

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The Alzheimer Research Forum, founded in 1996, is the web’s most dynamic scientific community dedicated to understanding Alzheimer’s disease and related disorders. Access to the web site is free to all. Our editorial priorities are as diverse as the needs of the research community. The web site reports on the latest scientific findings, from basic research to clinical trials; creates and maintains public databases of essential research data and reagents, and produces discussion forums to promote debate, speed the dissemination of new ideas, and break down barriers across the numerous disciplines that can contribute to the global effort to cure Alzheimer’s disease.

The ARF team of professional science writers and editors, information technology experts, web developers and producers all work closely with our distinguished and diverse Advisory Board to ensure a high-quality of information and services. They welcome our readers’ participation in all aspects of the web site. I post comments here from time to time. They need to read more voices of people with dementia reacting to their research, their interpretations, and their discussions.

The Alzheimer Research Forum is an independent nonprofit organization. They are supported by grants and individual donations. The web site does not endorse any specific product or scientific approach.

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StoryCorps is an independent nonprofit project
whose mission is to honor and celebrate one
another’s lives through listening. By recording the
stories of our lives with the people we care about,
we experience our history, hopes and humanity.
Since 2003, tens of thousands of everyday people
have interviewed family and friends through
StoryCorps. Each conversation is recorded on a free
CD to take home and share, and is archived for
generations to come at the Library of Congress.
Everyone has a story to tell.

In 2006, StoryCrops launched an initiative to reach
out to people affected by memory loss with an aim
to support and encourage those affected by sharing
their stories. The project is guided by an Advisory
Board of nationally recognized leaders in the field of memory loss, and all interviews are facilitated by
their specially trained staff.

Millions listen to the award-winning broadcasts on
public radio and the Internet. StoryCorps is one of
the largest oral history projects of its kind, creating
a growing portrait of who we really are as
Americans.

Although this service is free, a donation of $25 to
help cover costs of recording, archiving, and
preserving each interview is appreciated.

It’s difficult to sing, and wander and/or be disruptive, all at the same time!

Hello

I’ve always liked to sing. I don’t do it very well, but that has never stopped me from doing it often, with great gusto, and loudly. I hum to myself when I am alone, and sometimes when I am around others. Sometimes it’s an old hymn (I don’t like the new hymns - I don’t know the words and they are hard to harmonize with), sometimes it’s a children’s song I can’t seem to get out of my frontal lobe.

Music has the power to bypass the mind and wash through us, triggering strong feelings and cueing the body to synchronize with its rhythm.

Researchers and clinicians are finding that when all other means of communication have shut down, people remember and respond to music. Familiar songs can help people with dementia relate to others, move more easily, and experience joy.

Music memory is preserved better than verbal memory, because music, unlike language, is not seated in a specific area of the brain but processed across many parts

There has been a crescendo of interest in music therapy for people with Alzheimer’s. Kate Gfeller, who directs the graduate MT program at the University of Iowa, published a study in the Journal of Music Therapy finding that activities like moving to music, playing rhythm instruments and singing led to more group involvement and less wandering and disruptive behavior among 51 patients with dementia in five nursing facilities.

For more information

Please Oprah, we are down on our cyber knees. Asking/pleading .for a moment, an hour, a week of your personal attention and subsequent air time!

Dr. William Thomas (geriatrician, author, and founder of the Eden Alternative and Green House), has created a YouTube video plea to Oprah Winfrey to discuss eldercare on her show.  Dr. Thomas was directed by Oprah’s producers to post the video to determine the popularity of the topic. Oprah’s producers want to be sure that there is a sizable, interested audience for a show on eldercare before proceeding. Please watch the video and forward it on. The number of hits and comments will (may) influence Oprah’s programming decisions.

This was my response to Bill and those promoting this effort:

Hello

Thank you for your efforts to gain access Oprah’s ears and eyes and mind. I am amazed, disappointed, and stunned that such efforts are necessary. It is the saddest of states that elder issues must first be voted upon by her viewers in order for her producers to seriously and comprehensively address them. If folks don’t respond to their own self interests, the interests of their moms and dads, the issues of their friends - I’m not real hopeful that utube responses will carry the self-centered day and open the minds and hearts of all of us to the issues of all of us.

I too have taken a couple of shots at getting Oprah’s attention, and so have a large number of my friends/supporters.

She usually does one show every year (or so) on Alzheimer’s, and it usually features her famous people friends who have Alzheimer’s in their families. As good as she sometimes is at exploring an issue through the lives of folks who are not famous, she has yet to put her mind/producers to a week on dementia in America, a week on the culture of aging in America and it’s impact on the aged, a week on nursing homes and dementia, a week on assisted living communities an their aging populations.

Stand up, speak up. It’s not just all we can do, it’s ALL we All should do.

What about those “other forms of dementia?”

Between 20% and 40% of all reported diagnoses of dementia are probably of some sort other than Alzheimer’s Disease. Unfortunately most of these human beings are ignored by organizations who seem more successful at raising money by using the term Alzheimer’s in their name rather than call themselves the Creutzfeldt-Jakob Disease and other related dementias Association of America.

If there are five and a half million folks living in the USA with the diagnosis of Dementia, probably of the Alzheimer’s type, there must be two to four million folks living with the diagnosis of Dementia, probably of something other than the Alzheimer’s type. Who speaks for them? Who represents them? Who is inclusive enough that when they use the word “dementia” they mean all the folks with dementia, and not just those probably of the Alzheimer’s type?

I have yet to discover that organization. Although I have swallowed literally thousands of web pages containing the words people with dementia on them, I have yet to come across one group who both talks and walks as if they care about, support, advocate for support services and research (both psycho-social and bench) for everyone living with Dementia, probably of this type or another.

Mention the words Alzheimer’s disease, and all the air is removed from the room. Replacing it is the smelly stigma, the myths, the unfounded fears of what it is like to live with Alzheimer’s disease. Try to also mention other forms of dementia, and the conditioned response of many folks, a response carefully (although sometimes unintentionally) crafted by the media, drug companies, and Alzheimer’s Organizations, is to hear the words Alzheimer’s when folks are actually talking about Lewy bodies, or Pick’s disease, or any of the other 50 to 100 forms of dementia floating around between the ears of almost 10 million Americans.

We all need to start correcting each other and ourselves when the say or use the term “Alzheimer’s Disease” as a sort of short hand for “Dementia.”

Richard

If you are from Texas please read this:

News release:

“Texans for Advancement of Medical Research (TAMR) commends Senator Ogden and the Budget Conferees for the decision to strip the ban on stem cell research out of the state budget. TAMR President Joe Brown said, “Legislators heard the message-loud and clear-from a public that supports this cutting edge research, and does not want to lose the benefits of having all forms of stem cell research being vigorously pursued in Texas. They know that research today often translates into life-saving treatments in the years ahead.”

In addition to the access to care issues, Dr. Bernard Weinstein wrote an economic impact study highlighting damage to the state’s economy that such policy would create. In this time of economic difficulty, with our world-renowned medical facilities among the most robust industries in the state and with the push to attract more bio-tech companies to Texas, TAMR applauds the wisdom of the Budget Conference Committee, and hopes that Texas will soon see legislation protecting all ethical forms of stem cell research. “

“How come you are not more like me?”

Hello!

A few “professionals” and a few more non-professionals have wondered aloud if I really have Alzheimer’s disease. “How can you be so like you are, so like me, and still be seven years into your diagnosis?” they ask, whisper, observe to others. When they ask me to my face I tell them this story:

Several months ago, I was introduced to a psychologist who had been diagnosed just about the time I was. She was even a proponent of rational emotive therapy. What she was not, was she not just like me. For her the first symptom of the disease had been the rapid growth of aphasic symptoms. She was only able to communicate with me after I sat down beside her and listened to her troubled and troubling attempts to make her body and mind work together and speak to me. After some period of time and much much effort on her part I was able to piece together what she was so intensely trying to say to me. “Why aren’t you more like me?” And even then we didn’t have a conversation, I just sort of understand what she intended to communicate to me, and then of course I probably overwhelmed her with words with my response.

We both  seemed to communicate our mutual frustration with ourselves and with her symptoms of dementia. Tears began to flow down both of our cheeks. I didn’t know what to say to her. I didn’t know an answer, much less the answer to her question “How come I’m not like you, and you are not like me?”

After meeting literally thousands of people living with and in the symptoms of dementia, and after spending time talking to and listening to many of them I know for sure if you have met one person with dementia you know some of what dementia is like in that one person, and you have a tiny, tiny, ever-changing set of behaviors with which to catalog everyone else who has the same diagnosis.

Having earned a PhD, after spending much too long in school, and living now for the past eight years with the diagnosis of dementia, probably of the Alzheimer’s type and a variety of measured and tracked declining cognitive skills; I am by nature interested in the cognitive reserve theory.

It explains why I am not like some other folks I meet who are 5-10 years into their early on-set (I was 58 when diagnosed). Some even question if I have Alzheimer’s disease at all. When that is whispered behind my back, regardless if it was with the best of intentions or not, it most times makes me angry. I do not really know why I become somewhat and occasionally defensive about the reality of the diagnosis. I do know the occasional questioning raises old, small, but still intense rays of hope in my spouse that perhaps I do not have “it” after all. I do know I need enabling and supportive friends and professionals rather than ones who are always trying to “figure me out.” (”Oh but isn’t that what you did for a living?” I ask myself.

I wish others would accept me as I am, accept the judgments of three and a half neurologists, two plus (neuro) psychologists, at least 36 hours of psychological tests over the course of the last eight years. But some seem so sure of their own opinion of how someone with dementia should and should not be acting they wonder to others if I really have “it,” Alzheimer’s disease, Dementia, you name the condition.

One person wondered aloud if it was right for me present myself as an example of what a person with dementia can sound and act like, eight years into the diagnosis. Perhaps I was setting an impossible standard to meet for others who are just diagnosed. Well (a deep subject in and of itself) perhaps we will someday cure swine flu, go to the moon and back, figure out what happened just before the big bang, and break the 4-minute barrier for running a mile. No way! So many people have tried to run that fast they would die if they ever ran that far and that fast.

I do not question that I have the syndrome of dementia symptoms shared by some, but not all persons diagnosed with dementia. Just why whatever “it” is has not progressed as fast as others expect it to I do not know. I do know I have a purpose to my life (advocate for people with dementia and our issues connected to the ongoing quality of our lives. I do know that almost daily I speak from my heart and of my heart. It is (still?) easy for me to find those words! I do know I have maintained and have in fact expanded my social network of friends, support, and stimulation from the thoughts, conversations, and presences of others. I do know I am scared of what most probably lies ahead for me, and I devote most of everyday to running in place as fast as I can to slow down the apparent progress of my condition, and my arrival at the point in my life where I have lost my sense of self, my sense of family, my sense of who I was and who I am. I refer to the progress of my symptoms as “apparent” because I believe the process of non specific dementia probably runs about the same pace in everyone who has some form or another of “it.” But it reveals itself through behaviors that are still under the control of the whole brain, not just the parts immediately effected by “it.” Now, at last I get to cognitive reserve. It’s not a reserve in the sense it is an extra gas tank we all have and only lots and lots of teachers can fill it up, so you have to spend years at the gas pump while they each pump an overpriced drop or two extra into the reserve tanks.

It is more like my brain has been operating like a hybrid auto before its time. I am getting more MPG, and I have a few more drops of gas than others do who decided to “drop in” and get a job, while I was “dropping out” and bouncing around universities who continually offered me scholarships. I do not make this fill-er-up happen, or even knew it was happening.

Formerly I thought I knew a lot about a lot, and then as I aged I realized I knew a little about a lot. Now it turns out I seem to know more than some others whose brain is under attack just as mine is. It’s not really that I know more, I seem to know how to do more with what I have, to get around barriers ‘it” produces; I am as a result of my personality driven to have and live a purposeful life, despite my condition.

I am different, but I am not special. I am in the end just me, and thank heavens I spent so many years as a graduate teaching assistant, thank heavens I changed my majors a three or four times over the long course of my college career, thank you Dad for taking my brother and I to the library every week of our young lives to check out and read actual books. Thanks for my insecurities that have driven me to be so involved with others, so seeking of others approval, so varied in my social and love life (although I finally settled down in love in mid life). Bravo for cognitive reserve. I think it is the wrong characterization of the development and condition of my brain, but I guess I will just have to feel uncomfortable with the characterization until someone is able to label it and describe it using words I am okay with as self-descriptors.

There is an old gospel hymn (why are they always old and always gospel?) that goes “Farther along we’ll know all about it. Farther along we’ll understand why. Cheer up my brothers (and sisters), live in the sun shine, we’ll understand it all by and by.” I think the writer was referring to death as the moment when we know everything all at once. Until then I am satisfied to live my life as I am: Trying my best to be all of me, trying to be the best of me, trying to stay connect to this moment. Living with or without cognitive reserves. Just living each day as best I can, and increasingly with the enabling support of others.

Doubters from Thomas to whomever will just have to live with their own doubts, until they too “understand all.” Until I “understand all,” if indeed such a state of being is possible and/or desirable, I’ll just continue being me.

Wow, did this ever get longer than I thought it would or should!

Richard

John Mackey, The Mackey family, Mike Ditka, and Richard Taylor

Earlier this month I was the recipient of the Mackey Award for my “(their words not mine) outstanding contributions to educating and supporting caregivers of patients with dementia.”

The Johns Hopkins University School of Medicine selects the recipient and gives the award. I have posted my remarks at the ceremony in my blog on my web site.

John Mackey was the first, and most people (except for Chicago Bear’s fans such as myself - I am a Mike Ditka devote), remember him as the first and best tight end ever to play football. I met Mrs. Mackey the night before the ceremony.

John is living with frontal lobe dementia. He and his family have engaged his condition with love, understanding, and acceptance. Last month John moved from his home to another home. A home filled with loving, professional, and medical caregivers. His son, daughter, and wife visit him every week.

They decided to create this award in John’s honor.

John’s wife, Sylvia, became an advocate for former NFL players who end their lives living with declining cognitive abilities. A special program to assist the players who suffer from dementia and Alzheimer’s was named the Number 88 Plan, after John Mackey. Sylvia was instrumental in getting the NFL to address the issues.

She is an Angel, perhaps even an Archangel.

I do not receive awards in my name, but in the name of the life I am living, the purpose I have accidentally created for myself, and the blessings of having a family and friends who support my efforts to speak up and speak out. This award is not about me. It is about family, enablers, friends, and speaking up and out.

Folks attribute courage to what I do. I am not courageous; I am just me, talking about what is happening to me and in me. I am thinking aloud about dementia and my life. I want others to join me in the process of speaking up and out about what it is really like to live with dementia.

Richard

This was “lifted” from the home page of the book The Myth of Alzheimer’s. The authors have become friends, enablers, supporters, and fonts of wisdom for yours truly.

“In his book “Modern Love” A Memory Magically Interrupted”  Robert Leleux is quoted as saying that people with Alzheimer’s can “heal themselves of their diseases. Because they forget they have them.”

Yes this can happen, but more profound changes can occur as well. Insight into our own thinking abilities varies widely in all of us and particularly in people with age-associated cognitive challenges. And eventually a person with dementia may forget he or she has a memory problem. So often memory loss is more of a challenge for the caregiver, who maintains the recent memories for two, although the couple can often share long term memories together.

But the most profound healing (making whole) comes when my patients and caregivers recognize that they write their own stories of brain aging, not doctors or pharmaceutical companies. Since Alzheimer’s and all the so-called dementias have very variable courses, no two people’s journeys are alike.  I tell all my patients that for a given degree of memory impairment, quality of life can be affected a little or a lot depending on their attitudes, behaviors, and relationships. There are even opportunities for the story line to “improve” through relationship enrichment as life priorities and activities change with aging, as is pointed out by Leleux in his book about his grandmother.

I was shocked while waiting to eat my breakfast!

Hello

So there I was standing in line at the breakfast buffet in my hotel in Singapore when a tall electrifying person (Hilary Lee) approached me in line. I had met her at the Gates conference in Detroit a year ago. Hillary and her colleague, Jane Verity (a living legend in the field) have developed a program they have titled the spark of life.

Spark of Life is a simple, proven approach for enhancing the lives of people with dementia.

It’s a simple step-by-step guided approach which boosts quality of life for both the carer and the person with dementia. It works as well in the home as in an aged care facility. Spark of Life provides the practical ‘how to’ combined with the vital personal and emotional support needed by both the person with dementia and their carer.

Based upon their experience working with folks in Australia and Jane’s experience with Person Centered Care and the Eden Alternative, the Spark of Life Approach has been adopted in the US, Scandinavia, Europe and Australia, with outstanding results.

They have a short video showing the transformation of someone from a disinterested, disengaged, eyes closed non-participant - into an engaged and engaging individual who is obviously living in and fully enjoying the moment. These two authors/leaders/mentors/trainers are on my all-star angels list!

Visit the web site and add more sparks to your life and those around you.

Richard

Death by Tau: The Movie - Go Fish!

Hello

So what are researchers doing with the dollars (and little sense) that are currently being thrown at them by well intended, and mostly well-off individuals who are swept up by the current “race for the cure” hysteria created by other well intended and mostly well-off individuals?

Researchers in Christian Haass’ lab at Ludwig-Maximilians University in Munich, Germany, have devised a method for creating zebra fish models that express neurodegenerative disease proteins and can be imaged live as disease takes hold and claims affected neurons.

Now, their paper appears in Journal of Clinical Investigation, complete with two movie sequences. One movie shows how a mutant human tau-expressing neuron inside the live fish’s spinal cord bleeds and dies over the course of several hours.

The other movie shows how fish expressing this mutant form of tau in their spinal cord are too lame to escape after being prodded.

Why we haven’t trained more fish to express complex ideas, I don’t know. I do know I’m sending a pound of fish food to the next email appeal I get (from you-all know whos because you get them too) to fund bench research for “the cure” that some see just around the corner!

In the mean time, before we “turn the corner and actually see the light at the end of the tunnel of cures”, what about funding more psycho-social research to support those living with the declining cognative decline? Go Fish!

Click here!

Hello

After listening to the experiences and reactions of people living with dementia, this is what the good folks at the local chapter of the Alzheimer’s Association in NYC heard/discovered/learned:
Click here!

Tell other people what you are experiencing

Different people have different reactions to being told they have dementia. For some people the first reaction is to tell someone else, perhaps their partner or child. Other people keep it to themselves, perhaps because they feel there is no-one they can tell or because they don’t want to upset people they are close to.

It is very important to talk about it.  Once your family and friends know about the diagnosis they can then support you. They might find it hard to believe at first and may be upset by the news. This will make it even more difficult for you. Try to discuss matters in a calm way.

When you talk to your friends and family see one or two at a time. Find a quiet place to sit down to talk.
Your family and friends may feel privileged to be given the opportunity to help. Try to share what you are experiencing: share your diagnosis, explain about dementia and how it affects you, share your feelings of anger, anxiety or helplessness. Others may have feelings they would like to share with you as well.

You may want to tell other people what they can do to make your life easier. For example, ask them to give you time to find the right word, or take you grocery shopping once a week if you can’t drive. You may also find it helpful to tell them what you don’t find helpful, such as you might not like people doing everything for you.

Many people feel relieved after the diagnosis, because now there is a reason for their memory problems.
There may be things that you want to say to certain people or you may have things to ask of them in the future. It helps if people can know what your wishes are but do not ask for promises from people that they might find hard to keep.

“Telling people about your diagnosis is a healing experience and can only come about with acceptance of your situation. Acceptance removes the stress of the need to remember what you have told or not told people. It is the most empowering thing you can do.”

Richard