Hello
I’m Richard Taylor and I have been living with the symptoms of dementia for the past six or so years. Thank you for taking the time to allow me to share these thoughts and experiences with you.
I’ve been to the mountain(s), literally. I just returned from a week of speaking in Colorado. I still have a now familiar lump in my throat and knot in my stomache from the deep multi-emotional, intellectual, and physical encounters with some of the folks living with dementia, their carers, and the professionals who support them - all of whom live in Colorado.
I keep announcing I’m going to cut down on my travels and speaking, and I keep accepting more and more invitations. Ask away! Clearly, this is my new purpose in life. This provides me with the energy, insight, and drive to continue to at least keep trying to stay one step behind my symptoms of a failing cognitive system. I am in effect trying to run as close to my symptoms as humanly possible.They will not slow down, I just try to invent ways to cover them up, ignore them, temporarily fix them, and/or accept them and move on with the race.
I welcome your reactions to my experiences, impressions, thoughts, and opinions. I encourage you to Write me - richardtaylorphd@gmail.com and/or visit my web site - www.richardtaylorphd.com.
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Reactions to “He doesn’t have Alzheimer’s -
He doesn’t fit my mold”
I received hundreds of response from the article in my last newletter about my efforts to engage others (and myself) who whisper to others “he doesn’t have Alzheimer’s disease.” Turns out I’m not alone in struggling with how to deal with this judgment of others, some of whom are well known professionals, some of whom are our own carers. Common to the comments were the themes of anger, frustration, and some self doubts that perhaps we are making this all up in our head!
Apparently for some folks - if you have seen one or two or two hundred people with failing cognitive abilities you have seen all you need to see to classify from afar anyone. You know alzheimer’s when you see it, when you read the writings of someone, when you meet them socially, when you know “of them.” . You can “smell it” (that’s what one neuro (?) psychiatrist told me).
I honestly don’t know exactly/percisely what I “have.” But I do know I am different than I was, different from others, different to myself, and did I mention I was different?
I don’t feel obligated to convince everyone I have dementia, probably of the alzheimer’s type. Three neurologists and two neuro-psycholgists have already convinced me. (Not to mention the life experience I have expereinced the past six years.)
I’m just going to keep speaking, keep thinking about thinking, keep on keeping on until I can’t. At that point I will either be dead because I was hit by a car or I had a massive heart attack, or I will be so deep into the symptoms that I am unable to speak. Perhaps then others will stop whispering and worrying if I really have/had dementia, probably of the alzheimer’s type.
Then again perhaps they won’t.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw
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Conference of the Month - The Pioneer Network 9th Annual Conference
Date: August 12-14th
Place: Little Rock, Arkansas
Coming Together, Creating Community, It’s Only Natural!
The Pioneer Network was formed in 1997 by a small group of prominent professionals in long-term care to advocate for person-directed care. This group called for a radical change in  the culture of aging so that when our grandparents, parents - and ultimately ourselves - go to a nursing home or other community-based setting it is to thrive, not to decline. This movement, away from institutional provider-driven models to more humane consumer-driven models that embrace flexibility and self-determination, has come to be known as the long-term care culture change movement. Our partners and audience are primarily engaged in some aspect of long-term care including long-term care CEOs and administrators, consumers and family caregivers, doctors and nurses, direct care providers, and others who care about, and care for, the aging.
Pioneer Network is a center for all stakeholders in the field of aging and long-term care whose focus is on providing home and community for elders. We believe that the quality of life and living for America’s elders is rooted in a supportive community and cemented by relationships that respect each of us as individuals regardless of age, medical condition or limitations.
Pioneer Network advocates for elders across the spectrum of living options (which are often dictated by differing levels of the medical care required); and is working towards a culture of aging that supports the care of elders in settings where individual voices are heard and individual choices are respected - whether it is in nursing homes, transitional care settings or wherever home and community may be. Cultivating and maintaining a community of relationships is important at every phase of life, but especially critical for elders and the aging, many of whom may need a network of partners to live life to its fullest.
These are the core values of the Pioneer Network:
VALUES AND PRINCIPLES
*Know each person
*Each person can and does make a difference
*Relationship is the fundamental building block of a transformed culture
*Respond to spirit, as well as mind and body
*Risk taking is a normal part of life
*Put person before task
*All elders are entitled to self-determination wherever they live
*Community is the antidote to institutionalization
*Do unto others as you would have them do unto you
*Promote the growth and development of all
*Shape and use the potential of the environment in all its aspects: physical, organizational, psycho/social/spiritual
*Practice self-examination, searching for new creativity and opportunities for doing better
*Recognize that culture change and transformation are not destinations but a journey, always a work in progress”
The conference is an intriguing and challenging mix of dreamers, planners, doers, and evaluators. They need to include more of their customers in their conferences (needless to say I am “pushing” for more customers to stand up and speak out). The conference is full of very interesting people.
- August 13th at the Opening of the Conference, I will be receiving the Carter Williams Legacy Award. Mrs. Carter Williams will present me the award and I will speak on the topic of “What will be my legacy?”
“The wealth of knowledge and depth of passion that Richard brings to his life and his work are unparalleled. He is truly making a difference in the way we think about long-term care and caring. We are honored that he will be accepting the Carter Williams Legacy Award and we look forward to partnering with Richard to ensure that all elders are able to direct their own lives wherever they call home,” said Pioneer Network’s Executive Director Bonnie Kantor.
- August 14th, I will be presenting a 90 minute concurrent session entitled humanizing Dementia Care through Culture Change
- August 12th, I will be a special guest for an all day Conference Intensive with two amazing and powerful individuals. Below is the description of that intensive.
Guides:
Jeanne Heid-Grubman, Administrator, The Holmstad
Megan Hannan, Consultant, Action Pact / Pioneer Network Board President
With Special Guest: Richard Taylor
There is an extended early bird registration period until June 15th. If you ave never been to a Pioneer Network Conference it will be ,I promise, a unique, interesting, compelling, and worth-while experience. Check it out!
Richard
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What goes around, comes around
Hello
*Victim - “an unfortunate person who suffers from an adverse circumstance. A person who is tricked or swindeled”
We are all victims of our own making, in that we all have participated in the development and maintenance of the culture in which we all now live and grow older every day.
Now that some time has passed in our lives we bump up against the values, the politicians, the policies, the budgets, the social and family systems that we directly helped to create or indirectly watched as they were created for, around and in us. 
What irony! What goes around truly comes around.
Just how we can stop this selfish, self-centered culture of ours is a question that might be answered long after I have returned to cosmic dust.
I’m not optimist, but neither am I willing to pass the burden on to the next generation of elders to fix us all.
Stand up, speak up! It’s not just all we can do, it’s ALL we ALL should/must do.
*WordWeb Dictionary definition
Richard
“I never had a policy; I have just tried to do my very best each and every day.” Abraham Lincoln
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Remember the survey conducted by our Canadian cousins?
Here are their suggestions as to what folks living with dementia expressed as their needs/wants, and how that might happen with your support:
“TOOLS AND STRATEGIES FOR CONNECTING PEOPLE WITH INFORMATION SPECIFIC TO IDENTIFIED PRIORITIES
Persons with Dementia - How to cope emotionally
* Issue is isolation
* Need peer support (at different stages of progression) Have an organization keep inventory of clients
*Find out what their wants and needs are and match accordingly
*Could be online or face-to-face (need to consider security/safety issues)
* Peer support phone
* Facebook type of community
* Kit for newly diagnosed individuals - including helpful information on “what does it mean to have such a diagnosis” and “Who do you want and need to provide support” -
* Website where early stagers’ and especially early on set and early stage folks could connect.
* Need more therapeutic supports - someone to just talk to
* Buddy program/leisure buddy
* Pocket journal that tells people “Who I am,” “What I like”, “What are the issues that are most important to me”
* Support where upon diagnosis you are given a support person for life and links you to others in the same situation
* Need more opportunities for senior lifestyle living where you live with peers that you can develop relationships with and whom you can come to rely on
* Provide more opportunities for meeting new people
* Need to educate primary health practitioner so they understand the emotional needs -allow person with dementia to talk and not be pushed out the door.
* Need to teach others how to start a conversation with persons with dementia
* Develop a tool to help persons with dementia get through rough periods emotionally - teach them what questions to ask themselves (checklist) and provide support depending on the emotional need
 Family Partners in Care - Care and coping and available resources and supports
* Handouts taking into consideration language diversity, reading ability * Calendars
* Newsletters at grocery stores, banks, pharmacies/drug stores
* Workshop
* Keeping it Current
* Inserts in Utility Bills-need to supply materials, or online advertising through Utility
* Short concise sentences
* Need different ways of contacting: phone number, email, location, mailing addresses
* Transfer knowledge/advertisements through:
* direct to home
* apartments are different, keep in mind different types of housing
* need to contact property management and/or boards,
* Create packages and put in newsletters of community services
* Identify community/housing/utility Gatekeepers
* High schools-to contact grandchildren or children-provide handouts, so friends and community members can learn about it
* Within the home: media (television, radio, and internet)
* Use the phone book: yearly, will keep things current, who is the gatekeeper”
For more information…
Richard
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OMG, it’s an Epidemic
(again, or is it still?)!
*Epidemic - geographically widespread, occurring through a region or even throughout the world. Widespread outbreaks of an infectious disease, many people are infected at the same time.
Several years ago it was “bird flu.” This year it is “swine flu.” The possibility that they might produce an “epidemic” in our country prompted two Presidents and two Congresses to twice appropriate and spend $1.5 billion dollars over a two week period to prepare for the threatened empidemic. Twice folks started to wear masks  over their faces while walking in public places. Restaurants closed, public transportation was shut down, and everyone was glued to CNN to watch the ever increasing number of people infected by the flu increase to well over 100. The “death toll” in our US of A climbed to more than 10.
And how many people already are living with the symptoms of dementia? And how many more will for sure “get” those symptoms and die as a direct or indirect result of those symptoms?
OMG! What has happened to our priorities?
Richard
*from WordWeb on-line dictionary
“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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Your electric blanket may be warming you, and frying your brain!
Your clock radio may be a ticking time bomb!
Hello
What won’t they discover next when it comes to possible causes of “alzheimer’s disease?” So you honestly believe you have covered all the bases - you know all the possible causes of Alzheimer’s disease and you are doing your best to live a life free of every possible cause?
Not so fast.
“Living near power lines may significantly increase a person’s risk of death from Alzheimer’s disease or senile dementia, according to a new study conducted by researchers from the University of Bern, Switzerland, and published in the American  Journal of Epidemiology. The study is the first to definitively link exposure to low-frequency electromagnetic fields to elevated mortality from dementia.
Researchers examined residential census data for more than 95 percent of Switzerland’s population for the years 1990 and 2000, and compared this information with mortality figures for 4.7 million people over the age of 29 between 2000 and 2005. They found that people who lived within 50 meters (160 feet) of a long-distance power transmission line were 1.24 times more likely to die of Alzheimer’s disease than those who lived 600 meters (2,000 feet) or more away.
Those who had lived near the power line for five years or more had 1.51 times the risk of those living farther away. This risk was increased 1.71 times for those who had lived close to a power line for 10 years, and two times for those who had lived within 50 meters for 15 years or more.
The figures for senile dementia were similar to those for Alzheimer’s disease.
Long-distance power lines transmit power at 220-380 kilovolts. They do not give off radiation at the same frequency as other power lines, which transmit smaller amounts of electricity shorter distances.
The researchers noted that the extremely low frequency (ELF) magnetic fields created by long-distance power lines are also created by many household electrical appliances and even the wiring within buildings. The World Health Organization has classified these fields as possible carcinogens.
Because household appliances are probably more significant sources of ELF field exposure than power lines, the researchers recommend precautionary measures such as not sleeping too close to active electric appliances, such as clock radios or electric blankets, for long periods. “
So, what can you really do to prevent, slow, or not die from the consequences of Alzheimer’s disease?
Source, Please click here!
Richard
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Links
These are links/sources suggest by the folks in the Pioneer Network.
American Association of Homes and Services for the Aging
The members of the American Association of Homes and Services for the Aging (AAHSA) consist of mission-driven, not-for-profit organizations dedicated to providing the services that people need, when they need them, in the place they call home. Our 5,700 member organizations, many of which have served their communities for generations, offer the continuum of aging services: adult day services, home health, community services, senior housing, assisted living residences, continuing care retirement communities and nursing homes. AAHSA’s commitment is to create the future of aging services through quality people can trust. A section of the AAHSA website is devoted to consumers.
American Health Care Association
The American Health Care Association (AHCA) is a non-profit federation representing more than 10,000 non-profit and for-profit assisted living, nursing facility, developmentally-disabled, and subacute care providers that care for more than 1.5 million elderly and disabled individuals nationally. AHCA represents the long term care community to the nation at large - to government, business leaders, and the general public. It also serves as a force for change within the long term care field, providing information, education, and administrative tools that enhance quality at every level.
Center for Excellence in Assisted Living
CEAL is a non-profit collaborative of 11 national organizations (including Pioneer Network) that aims to promote high quality assisted living and serve as a national clearinghouse, bringing together research, practices and policy that foster quality and affordability in assisted living. The CEAL Clearinghouse contains information for consumers about assisted living, among other topics.
Centers for Medicare & Medicaid
Services/Nursing Home Compare
The primary purpose of the Nursing Home Compare tool on the CMS web site is to provide detailed information about the past performance (based on annual inspection surveys) of every Medicare and Medicaid certified nursing home in the country.
Consumer Consortium for Assisted Living
CCAL is a national nonprofit consumer-based organization focused on the needs, rights and protection of assisted living consumers, their caregivers and loved ones. CCAL believes that advocacy action is necessary today to ensure quality care tomorrow; advocates for the safety, quality care and protection of assisted living residents; and educates consumers to help them navigate the confusing array of assisted living choices and make appropriate, informed decisions.
Eldercare Locator and National Association of Area Agencies on Aging
Eldercare Locator provides referrals to Area Agencies on Aging via zip code locations. Family caregivers can also find information about many eldercare issues and services available in local communities.
Family Caregiver Alliance (FCA)
FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.
National Alliance for Caregiving
Although not an organization that helps family caregivers directly, The National Alliance for Caregiving’s website helps family caregivers learn about information, videos, pamphlets, etc. that have been reviewed and approved as providing solid information.
National Association for Home Care and Hospice
A membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of enhancing the quality of life for people dying in America and their loved ones. The website has sections on learning about end of life care and finding a provider.
National Association of Professional Geriatric Care Managers
Geriatric care managers (GCMs) are health care professionals, most often social workers, who help families in dealing with the problems and challenges associated with caring for elders. This national organization will refer family caregivers to their state chapters, which in turn can provide the names of GCMs in your area.
National Family Caregivers Association (NFCA)
The National Family Caregivers Association (NFCA) reaches across the boundaries of diagnoses, age, and relationship to address the common needs and concerns of all family caregivers. Through education, support and advocacy, NFCA empowers family caregivers to act on behalf of themselves and their loved ones, and works to remove the barriers that stand in the way of a family caregiver’s health and well being.
NCCNHR: The National Consumer Voice for Quality Long-term Care
NCCNHR’s information resources from 42 states comprise a diverse and caring coalition of: local citizen action groups, state and local long-term care ombudsmen, legal services programs, religious organizations, professional groups, nursing home employees’ unions, concerned providers, national organizations, and growing numbers of family and resident councils. NCCNHR provides information and leadership on federal and state regulatory and legislative policy development and models and strategies to improve care and life for residents of nursing homes and other long term care facilities. NCCNHR affirms that long-term care facility residents, and families and friends of residents, should expect quality of care and life for themselves and/or their loved ones, and engage in advocacy efforts to raise the standards of care. NCCNHR’s Consumer Guide to Choosing a Nursing Home provides tools that can be used by family members who are searching for a skilled nursing facility. The website also has consumer-friendly fact sheets on issues affecting residents such as residents’ rights, malnutrition, the use of restraints, and changing the culture of long-term care facilities. NCCNHR also has a section of its website devoted to culture change.
U.S. Department of Health and Human Services National Clearinghouse for Long-Term Care Information
The National Clearinghouse for Long-Term Care Information provides information on planning and financing long-term care including planning for end of life care, and all major types of public and private financing to help cover long-term care costs.
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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.
Richard
For more information
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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.
Richard
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What about those “other forms of dementia?”
Hello!
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
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On continuing to take your cholinesterase, inhibitor long after any value is gone
Hello
There is a vaguely substantiated Urban/Rural legend/belief being passed from dementia self help group to dementia self help group, and sometimes passed from some doctors to patients that it is clearly in your own best interest for you to keep taking your cholinesterase inhibitor (probably under one of these brand names - Aricept or Reminix, or Exelon) until the day you die, or at least as close to that day as is humanly possible. There is a claim there is still a residual positive effect on the speed at which your dementia is progressing, sometimes years after any, if any, apparent break on its progress has ceased to be apparent.
Comes now this study that suggests a buyer beware approach to life long commitments to cholinesterase inhibitor drugs. Like almost everything thing in life there seems to be an unstated trade off. The possibility of a temporary slowing down of the progression of your symptoms for the possible exposure to the following medical events.
As with everything you voluntarily put in your mouth (or dissolve on your lips, or absorb through your skin) you decide if you want to swallow it or not. You decide if you believe what people in white coats are telling you is the best course of action for you to take. This article has certainly given me second thoughts about my long held belief there are no side effects and therefore I can keep taking these pills for the rest of my life.
Previous to reading this, I would tell people when they asked about this pill vs. that pill that if they had good insurance to take as many of these pills as the doctor wanted them to ingest. (If you do not have good medication insurance, my advice was to carefully investigate what you were asked to buy and decide for yourselves if the potential benefit was worth the financial investment) After all, there were no apparent side effects to long-term usage. It looks like our brains are smarter than we are, and after a while they get tired, and upset with being chemically inhibited.
You decide. Talk it over with your family, with your doctors, with yourself.
From Medscape Medical NewsCholinesterase Inhibitors Linked to Serious Adverse Events in Older Adults With Dementia
Laurie Barclay, MD
May 20, 2009 - Cholinesterase inhibitors are associated with previously under recognized serious adverse events in older adults with dementia, which must be carefully balanced against the generally modest benefits of these drugs, according to the results of a population-based cohort study reported in the May 11 issue of the Archives of Internal Medicine.
“Cholinesterase inhibitors are commonly prescribed to treat dementia, but their adverse effect profile has received little attention,” write Sudeep S. Gill, MD, MSc, from the Institute for Clinical Evaluative Sciences in Toronto, Ontario, Canada, and colleagues. “These drugs can provoke symptomatic bradycardia and syncope, (please don’t feel bad if you don’t know what these conditions are, neither did I nor any other non medical person to whom I showed this article. Bradycardia occurs when you have a very slow heartbeat ((under 60 beats per minute)), or an irregular heart beat) which may lead to permanent pacemaker insertion. Drug-induced syncope may also precipitate fall-related injuries; including hip fracture (syncope is the medical term for fainting).”
To evaluate the association between use of cholinesterase inhibitors and syncope-related outcomes, the investigators used healthcare databases from Ontario, Canada, with enrollment from April 1, 2002, to March 31, 2004. The study cohort consisted of 19,803 community-dwelling older adults with dementia who were prescribed cholinesterase inhibitors and 61,499 control subjects who were not using these medications.
Compared with control subjects, patients who were prescribed cholinesterase inhibitors had more frequent hospital visits for syncope. Participants receiving cholinesterase inhibitors also had a higher frequency of other syncope-related events vs. control subjects.
These events included hospital visits for bradycardia, permanent pacemaker insertion, and hip fracture.
Additional analyses in which participants were matched either on their baseline co morbidity status or use of propensity scores yielded similar findings.
“Use of cholinesterase inhibitors is associated with increased rates of syncope, bradycardia, pacemaker insertion, and hip fracture in older adults with dementia,” the study authors write. “The risk of these previously under recognized serious adverse events must be weighed carefully against the drugs’ generally modest benefits.
Limitations of this study include retrospective, observational design; additional risk factors for syncope in many patients; possible residual confounding and hidden bias; failure to compare individual cholinesterase inhibitors or to examine dose-response relationships; lack of evaluation of fall-related injuries other than hip fracture; and exclusion of patients with a recent history of syncope.”
Okay, that was almost completely clear. Now what to do? You decide!
I am, need I remind all not Dr. Taylor, MD, nor Mr. Taylor who completed a program in pharmacy leading to a bachelor’s degree or higher from a pharmacy program accredited by the completed a program in pharmacy leading to a bachelor’s degree or higher from a pharmacy program accredited by the Accreditation Council for Pharmacy Education (ACPE).
I am just Richard, a person who is living with the symptoms of dementia and trying as best I can to make it successfully and purposefully through each day of my life.
Please remember not to decide (one way or the other) is to decide! This is not medical advice, its common sense. I sure wish life choices were easier, clearer than this one is.
(Thanks to my good friends at Alzheimer’s Daily News for bringing this article to my attention. Readers should sign up for this free daily update on mostly research news concerning dementia. The folks who publish this are smart, persistent, and very nice people. Look in their Web store for items to assist people living with the symptoms of dementia)
Richard
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If you are from Texas please read this:
Hello!
One small step for regenerative medicine research in Texas. One even smaller step away from the abyss of ignorance, fear, misunderstanding, and not allowing our legislature to shoot us all in the foot. They will be back in two years!
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. “
Richard
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Where’s Richard
Tonight! 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 at 8pm. You can dial 1-877-232-2992 and when you hear the prompt you
will dial 271004#. Contact
Susan London (slondon@alzfdn.org) for more information.
I’ll be speaking at the Garden
Spot Village in Southeast Pennsylvania on June 1st in a public presentation at 7pm, on June 2nd at 2:30pm to professionals, and on June 3rd
for the Alzheimer’s Association. Please contact Janet Mills (jmills@gardenspotvillage.org)
for more information.
I’ll be speaking at Presbyterian Village in Austell, Georgia on
June 7th and the Luthern Towers on June 9th in Atlanta, Georgia. Please contact Kim McRae (kimmcrae@earthlink.net) for more information.
I’ll be speaking at a conference
for the Alzheimer’s Society of Durham (Canada). On June 23rd
I am speaking at the New
Author’s Conference at the University of Waterloo from 1-3pm, and in classroom BMH 2703 on June 24th from
11-12pm. 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 be doing that much traveling these two months.
I will be speaking in Houston on July 21st at the opening of Autumn Grove in Atascocita. Please contact Amanda Bailey (amanda@autumngrove.org) for more information.
I will be speaking for the Alzheimer’s Alliance of Arkansas program August 10th and 11th. On August 10th I will be
speaking in Hot Springs from 9:30-11:30am and the Second Presbyterian Church in
Little Rock from 2:30-5pm. On August 11th. I will be speaking
in Heber Springs from 10-11:30am. Please contact
Janet Nelson (janet.nelson@alzark.org) for more information.
I will be speaking at the 9th Annual Pioneer Networking Conference on August 11th,
12th, and 13th in Little Rock, Arkansas. Please contact
Karen Stobbe (karenstobbe@charter.net) for more information.
I will be speaking September 12th at Sun City Huntley in Huntley, Illinois from 1-2:30pm. For more infromation please contact Nancy Turngren (NTurngren@centegra.com).
I will be speaking September
19th at Warwick University in
the heart of England. Please contact Sarah Heseltine (SHeseltine@alzheimers.
org.uk) for more information.
I will be speaking in Scotland September 21st-23rd. For more information please contact Andrew Ketteringham (Andrew.Ketterinham@
alzheimers.org.uk)
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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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Richard,
It was a pleasure listening to your presentation at Bethany Village in Mechanicsburg, PA today! I have learned from you to be unashamed of my diagnosis and to live each day to the fullest. I plan to begin doing some public speaking for the Alzheimer’s Association and would loke your permission to use your opening line, “Hello, I’m Tom and I have Alzheimer’s related dementia”. In the past I have usually slithered back into my “fog” for protection. After listening to you I’m reassured and will be “out there” per your turtle analogy.
Thanx, Tom