| Hello
My name is Richard and I am living with the intrusive and most times frustrating symptoms of dementia. Thank you very much for opening this email up and reading at least this far. This mail contains bits and pieces of my life and interests over the course of the past month. It was a good month for me and a bad month for my symptoms. I didn’t beat them, but I feel as though I stayed just one step behind them, and that is how close I will ever get to overcoming them. I managed to contain/cover up/ignore most of my symptoms, and those I could not avoid I was surrounded by enabling carers who filled in most of my cognitive voids.
Each month I’m going to expose some National conference to the readers (all 14,221 of them). For years I was dependent on the National Alzheimer’s Association to provide for me what they provide so well for researchers. Unfortunately that has yet to occur so I have turned my attention and limited dollars to attending other organizations’ National conferences.
Next month I’ll write about the Pioneer Networking conference in Little Rock, Arkansas, and the following month about the Alzheimer’s Foundation of America conference in Chicago, Illinois.
Thanks for sticking with me. I’ll continue to stick with you as long as I can chew gum and type at the same time.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw
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“Hang in there Richard.
We’re working on it!”
Hello
Time to stop studying-studying, and to start action
The year long awaited report of the Newt Gingrich, Sandra Day OConnor, et. al Alzheimer’s study group/commission/committee is out! They proposed the creation of The Alzheimer’s Prevention Initiative(perhaps they will form another study group/commission/committee to study The Initiative).
The USA stands alone with it’s insistence to characterize dementia with a sub group of individuals living with dementia and who are diagnosed with dementia, probably of the Alzheimer’s type. Alzheimer’s disease does not encompass all folks who are living with the symptoms of dementia. Seven years ago, it was claimed 60% of those with a diagnosis of dementia probably had the Alzheimer’s type. Four years ago, the percentage was raised to 70%. Now I just read those invested in a majory way with the name  Alzheimer’s Disease are claiming 80%. Whatever the percentage, the term Alzheimer’s Disease does not equal or mean the same or include all who are clearly living with significant declining memories and other declining cognitive abilities. The word everyone in the world, except for the USA uses is Dementia. But, as usual, I digress - on to the report of the study group.
Alzheimer’s Prevention Initiative is focused on “developing the capability to delay and, ultimately, prevent Alzheimer’s disease.” This initiative is designed to clarify and accelerate the development pathway for preventative and risk-reducing therapies. The three top recommendations for this initiative put forward by the study group are:
An advancement of developmental science, as well as the improvement of disease models and qualification of biomarkers for clinical research. The study group called for acceleration of pharmacological and behavioral interventions in order to be able to prevent Alzheimer’s as soon as possible. (Of course there is an unstated assumption here that Alzheimer’s can every be prevented. And all we need to do to reach that moment in history is to “accelerate the pharmacological and behavioral interventions by - you guessed it - spending more money, and spending it at a faster rate than in the past)
The recruitment of larger numbers of volunteers for clinical trials and population-based longitudinal studies in order to speed development of preventive treatments. (There is that assumption creeping in again. Asking folks who are living with dementia to volunteer for pharmacological clinical studies, and not demanding more money be spent on psycho-social research to improve the quality of the lives of the volunteers is just not right!)
Creation of an Alzheimer’s disease rapid-learning network to link all major research databases and researchers. Advanced analytical tools would help researchers use this database to support their own research and to mine data. (Great, they are going to mine the data of 25 years of failed attempts to “cure” the “disease.” Newt is convince there is truth to be found in data mining. The truth is there is no truth to the claim that a “cure” in any way, shape or form is possible - at least so believe I, many others in the USA, and many, many, many others in the rest of the World!)
The Alzheimer’s Care Improvement Initiative focuses on reforming Medicare Fee-for-Service by developing a reimbursement system that “rewards value, not volume.” The Study Group recommended, “Care providers - much like all providers of goods and services in the marketplace - should be rewarded for providing what is most valuable to dementia patients for better health and a higher quality of life. (How can value be reward as long as everyone refuses to ask the customers (People with dementia) what they want and need? How can the marketplace work when providers keep asking caregivers instead of people with dementia about the quality of the services they receive? How do service providers “know” what folks deep into the symptoms of dementia want?)
Priority recommendations are:
-Implement an electronic health records system that can be used to track the delivery of care and lower the cost of care coordination. (A good sounding idea that is oft repeated, but there is weak evidence that care coordination equals better care - just lower cost care)
- Develop quality care measures based on what people who have Alzheimer’s and caregivers value most. (At last a mention of people who have Alzheimer’s. But what of the 4+ million folks who do not have Alzheimer’s, but do have other - mostly more severe forms of dementia?)
The Study Group believed that this information could be used to begin to test value-based payments for dementia care using a small number of indicators in pilot programs. These value-based payments can then be expanded based on pilot program results. (Full speed ahead on implementing a program before we have identified the values upon which it will be judged?!)
- Encourage coordinated care that includes training and supporting family caregivers. (And… what is the specific training and support for people living with dementia?) The third initiative suggested by the Study Group involved creating an Alzheimer’s Public-Private Partnership. The Study Group noted that currently the Federal Government does not have a comprehensive strategy on Alzheimer’s. The Public-Private Partnerships will create a system-wide approach that includes planning and implementation both inside the Federal Government as well as key external stakeholders. (And guess who the key external stakeholders will be - the same folks who now exclude an impactful number of people with dementia from their Boards of Directors, from their budgeting, from their program design committees, from their staffs)
- Create an Alzheimer’s Solutions Project Office within the Executive Branch which is led by a Chief Executive Officer and which creates a detailed Alzheimer’s Solutions Project Implementation Plan. (Yes, let’s watch President Barrack do this today! When is out turn coming up for Presidential attention and announcements?)
- Create an Alzheimer’s Solutions Project Investment Fund through annual appropriations based on a multi-year investment budget. Funding levels would be reviewed annually to determine progress and changing conditions. The Study Group recommended the scale of Federal investment to “be based on the savings that overcoming Alzheimer’s would yield to the Federal government over the coming generation, implying a scale of annual investment many times greater than current levels. (Spending money to save money and spending money from already saved money sounds great. Hands in the audience if you think both of these with occur at the same time.)
- Foster maximum public-private collaboration in order to speed progress.” (Sounds good. Speed progress of what? How will we know we are going faster? By how fast and how much money we are spending” By how collaborative we are in spending it?)
As of now, this is just a lot of words. The report reveals some new and interesting ways for the Federal Government to better spend our money. It is thought full, and thought filled. It was written without the benefit of the insights and input of even one person with dementia as a full member of the study group.
Once again, folks who should be my voice, my leader, my difference maker on the National scene say to me: “Be patient, we are working on it.” I have been patient, I have been a patient for seven years now, and they said the same exact things to me seven years ago. I cannot stop being a patient, but have long ago stopped being patient!
Richard
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“I never had a policy; I have just tried to do my very best each and every day.” Abraham Lincoln
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Hello
We gotta have a plan! So does Europe!
Written Declaration 80/2008 which calls for the development of a European Alzheimer’s Plan was formally adopted by the European Parliament on 5  February. Initiated by Françoise Grossetête (France), John Bowis (United Kingdom), Katalin Levai (Hungary), Jan Tadeusz Masiel (Poland) and Antonios Trakatellis (Greece), the Declaration was supported by close to 60% of all Members of the European Parliament.
And the plan to address the tsunami of dementia in the United States of America is…? Write to the President, to Senators Warner (D-Va.)and Snow (R-Maine), and Representatives Markey (D- Mass.) and Smith (R-N.J.) (they are the co chairs of the bipartisan congressional task force on Alzheimer’s disease - yes, even the U.S. congress doesn’t seem to want to take the time to appreciate the fact that everyone who has dementia does not have Alzheimer’s disease) and ask them for the details of our plan (hint - we don’t have one!)
Richard
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Hello
More evidence based evidence of how far we have not gone(or is it how far we have not come), despite claims to the contrary).
There is little and what there is of it is poor evidence for non-drug dementia treatments effectiveness. The evidence for non-drug treatments for Alzheimer’s disease is poor according to a German study. A report from the Cologne-based Institute for Quality and Efficiency in Health Care says it is impossible to draw reliable, long-term conclusions about non-pharmacological methods due to a lack of “convincing” studies. Small research budgets and underdeveloped study methodologies were the main reasons given for the shortage of reliable evidence.
The institute looked at 33 studies that together explored the effects of different treatments on 3,800 people with Alzheimer’s disease.
Four main non-drug treatments were identified in the studies. They were caregiver training, emotion-oriented interventions such as validation and reminiscence therapy, cognitive training procedures, and activity-based interventions.
The researchers acknowledged that further treatment concepts existed but they did not find any studies evaluating their effectiveness. According to the institute, 29 of the 33 studies were prone to bias and had poor quality.
However, there was some “relatively good” evidence for interventions based on caregiver training. As many as 17 of the 33 studies investigated this type of intervention and many of them suggested it was beneficial. But these findings may not be statistically relevant.
The research suggests that caregiver training can delay nursing home placement for people with dementia. The researchers said funding for non-drug treatments lags behind the funding for drug trials.
“What is lacking in Germany is public research funding, independent of industry, for research questions relevant to the treatment of patients,” said the institute’s Peter Sawicki. “This applies very specifically to non-drug treatment approaches. We must finally be allowed access to public financial sources for this type of research.”
Richard
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I should have inhaled - more!
Hello
Following the discovery of an endogenous cannabinoid system and the identification of specific cannabinoid receptors in the central nervous system, much work has been done to investigate the main effects of these compounds. There is increasing evidence that the cannabinoid system may regulate neurodegenerative processes such as excessive glutamate production, oxidative stress, and neuroinflammation.
Neurodegeneration is a feature common to the various types of dementia and this has led to interest in whether cannabinoids may be clinically  useful in the treatment of people with dementia. Recent studies have also shown that cannabinoids may have more specific effects in interrupting the pathological process in Alzheimer’s disease.
You may access abstracts for all Reviews in the database. Click here!
Richard
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“What lies behind us and what lies before us are tiny matters compared to what lies within us.” Ralph Waldo Emerson
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Hello
Really, I have holes in(side) my head!
Alzheimer’s disease researchers have been entrenched in debate about one of the mechanisms believed to be responsible for brain cell death and memory loss in the illness.
Now researchers at the University of Michigan and the University of California, San Diego have settled the dispute. Resolving this controversy improves understanding of the disease and could one day lead to better treatments. They found a flaw in earlier studies supporting one side of the debate. Their findings are published online in the journal Neurotoxicity Research. They will appear in the May print edition.
Their results clarify how small proteins called amyloid-beta peptides damage brain cell membranes, allowing extra calcium ions to enter the neurons. An ion is an electrically charged particle. An ion imbalance in a cell can trigger its suicide.
Amyloid-beta peptides are the prime suspects for causing cell death in Alzheimer’s, although other mechanisms could also be to blame. The disease is not well understood. The researchers confirmed evidence found by others that amyloid-beta peptides prick pores into brain cell membranes, opening channels where calcium ions can rush in. This was one mechanism the field had contemplated, but other evidence suggested a different scenario. Some researchers believed that the peptide caused a general thinning of the cell membranes and these thinned membranes lost their ability to keep calcium ions out of brain cells. Mayer and Yang disproved this latter theory.
“When you understand these mechanisms better, you have a better chance of being able to pharmaceutically counteract them as a possible treatment. For instance, if amyloid-beta thins membranes, this general effect might be difficult to treat. On the other hand, if it forms pores, this effect might be treatable with pore blockers. Ion channel blockers are medications sold today to treat a variety of diseases,” Mayer said. He cautions that much research is needed before it is known whether such medications are effective and safe to treat Alzheimer’s.
“This ongoing controversy has slowed our own progress in Alzheimer’s research as well as progress in other labs,” Mayer said. “It is our hope that putting this disagreement to rest by showing that amyloid beta peptides do not thin membranes but instead form discrete pores in membrane can help the field move forward at a more rapid pace.”
The paper is called “Amyloid-beta-induced ion flux in artificial lipid bilayers and neuronal cells: Resolving a controversy.”
Source: University of Michigan
Richard
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HBO, Hope, and Me
Hello!
The Alzheimer’s Project is HBO’s 4-part, multi-platform series that brings new understanding and hope for millions and reveals human faces behind the disease. It begins on a Sunday evening in May, and continues on for a total of four Sundays. “This pioneering documentary series shines a spotlight on the lives of individuals with Alzheimer’s and their families, and takes a close look at the  groundbreaking discoveries made by the country’s leading scientists as they work towards a cure.” Note that words in “” are from one of their news releases so please excuse their over blown adverbs and adjectives.
Four films each explore a different facet of Alzheimer’s:
· “The Memory Loss Tapes This 90-minute vérité documentary captures the devastating experience of memory loss from the point of view of the person with the disease. Bringing viewers into the quiet world of seven patients living with Alzheimer’s.” One of these folks, Chuck Jackson is a good friend of mine, and I know him to be outstanding human being.
· “Grandpa, Do You Know Who I Am? With Maria Shriver Geared towards children and young teens coping with a grandparent’s illness, this film presents vignettes that can help a child understand and deal with a relative’s gradual decline into Alzheimer’s.” One of the producers asked Christina (my youngest grand daughter) and I to appear in this segment. At the last moment, Christina back out. I don’t know why, but such is the mind of someone who is 9 years old and living with a Grand Father who frequently forgets the rules to “go fish.”
· “Momentum in Science, Parts 1 & 2 Momentum In Science details the current explosion of knowledge within the scientific and medical communities - from imaging the earliest signs of Alzheimer’s, to understanding the roles that genetics and lifestyle might play, to the tremendous progress being made in the effort to develop drugs to treat or even prevent the disease.” I am, needless to say hesitant about the “hype” already created by these segments. I have yet to experience, nor read about “tremendous progress being made in the effort to develop drugs to treat or even prevent the disease.” Note that most research evangelists have now adjusted their preaching from “finding a cure” to “even preventing the disease.” Reality, 25 years of breakthroughs, their colleagues, folks outside the medical research/Alzhiemer’s complex, seem to be having some impact on the preachers of a false and inappropriate use of the cponcept of hope.
· “Caregivers A collection of five family portraits that illustrate caring for those in different stages of Alzheimer’s disease. Each highlights the sacrifices, struggles, and successes made by those experiencing their loved ones’ descent into dementia. The Alzheimer’s Project Screenings
As an extension of The Alzheimer’s Project documentary series, HBO invites you to become involved in learning more about Alzheimer’s disease. The Project hopes to encourage further discussion about research and care in communities across America through FREE screenings of The Alzheimer’s Project films. HBO will offer select national organizations and their local chapters a turn-key screening kit filled with resources and tools to host special screenings, with value-added discussions of the films’ powerful content. Your organization can request a kit with any one or all of the four films and register to be part of this national discussion.
Unfortunately I don’t subscribe to HBO, and neither does Christina’s family. I’m gonna have to find someone who does to watch it. I have written before about the price we pay today when we spend time hoping tomorrow will be better than today. It’s not that I have to be hope less if I don’t have hope that tomorrow will find a cure, a break in the progression, a breakthrough for me and others. It ’s that I have to invest more and more of my attention and energy in understanding, enjoying and living fully in today.
HBO acts as if it were part of a movement to incorrectly frame the concept of hope, as it applies to folks living in cognitive decline. This series is good for all who aren’t in some way dealing with dementia, but it is potentially bad for those living in it and with it.
Education about what’s it like to live with dementia for those who aren’t is great! Showing us as real, whole, and complete human beings is great. Spending twice as much time on educating us on medical/pill related research is in my sometimes humble opinion is just plain wrong. Thanks - for some of your efforts - HBO.
Unfortunately my life, dementia, care giving does not lend itself to the technical and promotional needs of TV specials. We all need more information. We all need to talk with each other more than we need to watch more TV.
Richard
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Open the Gates and come on in
Hello
For the past two years, I have been privileged to attend and present at The Gates Conference in Detroit, Michigan. Optimal Life Designs is the conference organizer. If you are looking for one conference to attend this year, come to Gates.
Presented by National and internationally recognized leaders in dementia care:
· Life without pharmacology: Creative expression to improve quality of life
· My Mother’s dementia: Our lives in art
· Forget memory! Harnessing imagination to create better lives
· Memories at the Museum: Exploring art and dementia
· The Dancing Heart: An evidence-based arts program for people with dementia
· Cognitive impairment and fall risk: Challenges and opportunities
· Issues in assessing and helping individuals manage pain
· Sleep changes and dementia: Strategies for improving sleep
· Unlocking your staff’s creativity through coaching leadership
· The ‘art’ of communicating with people as cognitive abilities change
· Partners in care giving: Cooperative communication in residential settings
among families and staff
· Mild cognitive impairment and brain games: A social group model
· Using evidence as a base to guide exemplary supports and care
· Current and future prospects for treating Alzheimer’s and related conditions
· New CMS Interpretative Guidelines on quality of life and environment
· Palliative care: Supporting individuals and families through life’s last phases
· Practical mindfulness in giving care
Three Special Programs will be featured in addition to the 2009 conference (Each requires separate registration)
November 2, 2009:
· Full-Day Program on the Family Care giving Journey -Linking Needs with Supportive Strategies and Resources
· ½-Day Program on Understanding Changes in Behavior -Symptoms of Cognitive Loss, Unmet Needs, Challenging Environments
November 3, 2009:
· A 4-hour Gathering for Individuals with Memory Loss and their Families - Sharing Meaningful Moments with Fellowship, Music and Expressive Arts Three Special Programs will be featured in addition to the 2009 conference (Each requires separate registration)
Click here for more information
Richard
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“Oh Canada…”
Hello
Some of my friends in Canada - and aren’t they all so friendly - at MAREP(it’s worth your time looking at their web site) asked many many people with dementia, their care givers (they refer to them as carers, as do most all people on Earth except people who live in the United States of America), and professionals to list and then prioritize their personal needs surrounding dementia. Here are the top three needs for each of the groups:
Persons with Dementia
1. How to cope emotionally with dementia.
2. Findings ways to enhance quality of life.
3. Educating others about the needs of persons with dementia.
Family Partners in Care
1. Caregiver needs
2. Dealing with the emotional needs (for the family  member and the person with dementia.
3. Education and training for family partners in care, professionals, persons with early stage dementia and the public.
Professionals
1. Caregiver issues
2. Practice issue - care options and strategies
3. New advances in research
You decide if we are all concerned about the same issues, if we are all operating from the same prioritized list.
Next month, if I remember I will include their responses to each of the needs expressed by each of the groups.
Richard
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Links
Hopping to a different tune down under
While you are browsing around “down under” (sparks of life are igniting in Australia) please visit the home of the the Alzheimer’s Society of Australia. They seem to march to quite a different drummer than our own National Association. Browse around their site and see if you agree with me, and if they have ideas, materials, and approaches which might be of benefit to you on your journey.
www.dementiacareaustralia.com
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High Ho, High Ho it’s Off to the Hospital We Go!
Not so fast please!
A trip to the hospital for a person with memory loss or dementia is stressful for both the person and the accompanying caregiver. To help family and friends of individuals with memory loss prepare for and deal with hospitalization, the Alzheimer’s Disease Education and Referral (ADEAR) Center of the National Institute on Aging is distributing the newly updated “Hospitalization Happens: A Guide to Hospital Visits for Individuals with Memory Loss.
This 18-page booklet provides tips to lessen the stress and enhance the comfort of the patient, deal with anxiety or agitation, and work with hospital staff and doctors. It also includes helpful checklists for planning ahead for emergency and scheduled hospital stays, and lists agencies and other publications that might be useful resources.
To download or order free copies of “Hospitalization Happens: A Guide to Hospital Visits for Individuals with Memory Loss,” Click here!
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Network News
The Alzheimer’s Disease Cooperative Study (ADCS), in collaboration with the National Institute on Aging, has developed a nationwide information network of people who are interested in learning more about Alzheimer’s disease (AD) and dementia. The purpose of the Alzheimer’s Disease Information Network is to educate the public about AD research and upcoming clinical research studies through a monthly e-newsletter.
If you would like to be part of this information network and receive regular e-mail alerts announcing new clinical studies as well as updates on research and treatment, please go to
Network News
The Alzheimer’s Disease Cooperative Study (ADCS), in collaboration with the National Institute on Aging, has developed a nationwide information network of people who are interested in learning more about Alzheimer’s disease (AD) and dementia. The purpose of the Alzheimer’s Disease Information Network is to educate the public about AD research and upcoming clinical research studies through a monthly e-newsletter.
If you would like to be part of this information network and receive regular e-mail alerts announcing new clinical studies as well as updates on research and treatment, please click here!
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A DEAR source of support for us all.
A service of the National Institute on Aging (NIA), the ADEAR Center offers information and publications for families, caregivers, and professionals on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to AD. Staff members answer telephone, email, and written requests and make referrals to local and national resources. The ADEAR website provides free, online publications in English and Spanish; email alert and online Connections newsletter subscriptions; an AD clinical trials database; the AD Library database; and more.
Check out and order some of their publications. They are objective, comprehensive, well done, and free!
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Some good people in Canada, (there a lots and lots of them there, as well as here, and everywhere for that matter)The Murray Alzheimer Research and Education Program (MAREP), has brought together a team of persons with dementia, family members, recreation professionals and researchers in order to develop a resource guide on ways to enhance meaningful leisure opportunities for persons with dementia. We would like to find out more about the recreational and leisure activities that are enjoyed by persons with dementia and how professionals and others can better support them in maintaining valued activities.
If you are interested in learning more and participating by filling out the questionnaire, the link for the questionnaire for persons with dementia, Click here
The link for the questionnaire for family partners in care, click here!
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Where’s Richard?
Hello
I’m now home in Cypress, Texas and except for an epidemic (A widespread outbreak of an infectious disease, many people are infected at the same time) or a pandemic (An epidemic that is geographically widespread, occurring through a region or even throughout the world.) I’ll be in Colorado all of next week.
I’ll be speaking in and around Fort Collins,Colorado the week of May 3rd-May 8th. Please contact Kate for details at kate.aiello@comcast.net.
I’ll be speaking in Dallas,Texas on May 15th and 16th. Please contact Sydney Farrier for details at Sydney.Farrier@alz.org.
I’ll be on a call-in National caregiver support group sponsored by the Alzheimer’s Foundation of America on the evening of May 28th (I’m sorry I forgot to call in on my last scheduled appearance). Contact Susan London (slondon@alzfdn.org) at the AFA for details.
I’ll be speaking at the Garden Spot Village in Southeast Pennsylvania on June 1st and 2nd. Contact Jan Mills for details at jmills@gardenspotvillage.org.
I’ll be speaking at PRESBYTERIAN Village in Austell, Georgia on June 7th, and Lutheran Towers on June 9th in Atlanta,Georgia. Contact Kim McRae for details at kimmcrae@earthlink.net.
I’ll be speaking at a conference for the Alzheimer’s Society of Durham (Canada) on June 22nd, and at the MAREP Author’s conference on June 23rd in Toronto Canada. Contact Loretta Tanner (ltanner@alzheimerdurham.com) and Leah Sadler (lsadler@healthy.waterloo.ca) for more details.
I hope to organize some of my writings I have produced since Alzheimer’s From the Inside Out was published in 2006 in July and August. My brother has volunteered to work with me on this project. I won’t do much traveling these two months.
I will speak at the Pioneer Network conference and an Alzheimer’s Alliance of Arkansas program August 12, 13, and 10th. Contact for the Pioneer Network conference details is Karen Stobbe (karenstobbe@charter.net) and the contact for the Alzheimer’s Alliance presentation is Janet Nelson (janet.nelson@alzark.org)
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“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
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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
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ABC
News queries Peter Whitehouse about self-healing in persons with “Alzheimer’s”
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.
Moreover persons with dementia’s can also learn the profound lesson that we often find our own purpose (”Ikigai”) by serving others, just as the elders in The Intergenerational School in Cleveland do. And if they can give to others with a smile of their faces and humor in their hearts, then all the better.”
Peter Whitehouse M.D.
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Alzheimer’s disease or Fischer’s Disease
Hello
Alzheimer disease researchers everywhere are familiar with the founding story of their field, concerning the German doctor, Alois Alzheimer, who reported on abnormal pathology in the brain of a middle-aged woman who suffered from dementia.
But scientists digging through historical archives in Prague have brought to light the existence of another investigator who made arguably even greater contributions to describing the disease, but whose contributions were tragically forgotten.
The Alzheimer Research Forum reports how researchers attending the 9th International AD/PD Conference in Prague this spring were jolted by Pavel Kalvach of the Charles University of Prague, who announced at the opening session that his very city had hosted a contemporary of Alois Alzheimer’s who had described the pathology of dementia in greater depth than did Alzheimer himself.
That seminal investigator was Oskar Fischer, and his story resonates with historical pain. Fischer’s contributions were widely noted and debated when he published them in 1907, 1910, and 1912, and for some years afterward. But they later became neglected as Fischer’s career crumbled amid nationalist tension and the anti-Semitism of his time.
His life ended tragically in 1942 in Terezin (Theresienstadt), a concentration camp set up in a garrison town near Prague. This camp is especially known for having incarcerated noted artists, writers, musicians, scientists, and other scholars, whose cultural achievements in the camp the Nazis successfully touted as part of their propaganda campaign to hide the true horror of the camps, deceiving even the Red Cross on an invited visit in 1944.
Fischer remained largely consigned to oblivion, both in his home country and by most in the worldwide dementia community, until the fall of 2008, when Michel Goedert of the MRC laboratory of Molecular Biology in Cambridge, U.K., recounted in the journal Brain the story of what his visit to the Archives of Charles University, as well as conversations with Fischer’s descendants and present-day Czech researchers, brought to light.
For the full story, see:
Click here!
Richard
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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
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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!
Richard
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NYC, Early OnSet, and some good insights/advice
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
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Stand Up! Speak Out! Now!
If you do not tell them, how will they ever know?
Do not become a premature victim (by even one day!) of your own silence.
Speak up about and for yourself and those who will follow. Ask Carers and Friends to speak up for themselves, and for you and with you.
Today will never be here again! Time is of the Essence! Use it wisely!
Tell as many people as possible your perceptions of your interactions with professionals, with carers, with friends, with strangers, with your Government. They cannot change unless they know, and the cannot know unless and until you Stand Up! SPEAK UP! Now!
Seek to create and except from others a Palpable Sense of Change and of Urgency!
Richard Taylor, Ph.D.
Alzheimers from the Inside Out, LLC
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Hi, interest post. I’ll write you later about few questions!