July 2008
Alzheimer’s From the Inside Out
July, 2008 - Issue #5
Hello!
I am (still) Richard Taylor, and I will always be Richard Taylor. Six or so years ago I was diagnosed with Dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s syndrome. I think and write about the issues that have intruded into my life as a result of this diagnosis and I published them to friends, family, and you.
Thanks for taking the time to open and read at least this far. This is what I have been thinking and feeling since last month when I wrote you about this time of the month.
Richard
”The single biggest problem with communication is the illusion that it has taken place.” –G. B. Shaw
The truth as seen through four eyes, two hearts,and two quite different brain processing and recall systems!
Hello!
I want folks to show me their world, tell me the truths of their world as they see them, and then let me decide how much of your truth and how much of my truth I want/can embrace. Help me understand the differences, but don’t make them out as being reasons why you are right and I am wrong; your view is best and mine is worst, or wrong, or not good for me.
I sometimes know sometimes we won’t agree. But always being open and honest with each other and how we see and feel about our own worlds which quite unfortunately for both of us are becoming less and less the same, might make it a little easier for us to support, love and enable each other.
—————————————-
I try not to offer specific advice about this or that; I just want people to be more open to us and our situation; to empathize with us and adjust their expectations and requests and demands accordingly. The ability to adjust to the symptoms of the disease is slowly lost by the person who has the disease. The ability to adjust to the impact those symptoms have on themselves is always available to the caregivers.
“It” is not easy. It’s not what any of us wanted or want. It just is! Some ways are better than others in adjust to “it”
Richard
I wish I were a nude mouse!
Hello!
If only I were a nude mouse I wouldn’t expect anyone to listen to what I had to say about my various symptoms. If only I were a nude mouse I wouldn’t have to engage the symptoms of dementia, except when it came time for me to remember not to get shocked, or which lever to push to eat!
However, I’m not a nude mouse! I’m a whole person!
With the recent demise of the second in what was hyped to be a pipeline full of new approaches to delay the as yet to be chronicled progress of dementia I’m even more pumped-up about the disproportional attention being paid by the Alzheimer’s Study group to psycho social research (Newt Gingrich and Sandra Day O’Connor, et. al). There seems little interest in including a BIG chunk of ear marked money for psycho social research in the new “National Strategy.”
Would you please offer your .02 cents worth of what the National Strategy for Congress should be/include/fund? And send it to contact@alzstudygrop.org.
Richard
1,001 ways to take a shower and perhaps have lots of fun doing it!
Hello!
A friend of mine is having increasing difficulty getting her loved one to take a shower (I think he is in the mid stages of dementia). Without getting into a deep (and useless) psychological investigation of his early years, I have been asking friends of mine who are living with dementia for ideas on how to enable people with dementia to take their own showers, assisted as needed by a caregivers.
Here are some of our best ideas. Remember these all came from people who are living with the symptoms of dementia:
Arrange for him take a shower while seated on a familiar and chair? So what if over time the chair gets ruined? Does it really matter?
Encourage him to wear his underwear? If you are helping him you wear yours too.
Ask if he wants to wear his shoes?
Start off with a quick rinse, and work up to a full shower.
Take a cane or walker into the shower, even if he really doesn’t use it all the time?
Put up railings in the shower if it will make you feel safer taking a shower with him.
Ask him to wash you! Tell him you need help showering, too!
Sing in the shower, either to him or with him?
Play favorite songs or music before you get into the shower.
Initiate some form(s) of intimate contact in the shower (that was the most polite way I could come up with for an idea many, many people suggested and probably hoped for in their own showers).
Make up a game about how fast he can shower and time him?
Prepare and eat a snack he likes or drinking something he enjoys while in the shower?
Watching TV or listening to a favorite piece of music while in the shower?
Video tape the two of you taking a shower and show it to him?
I am not the shower expert, these are just some ideas to distract him from whatever it is he fears. My general impression is carers are too focused on us showering-sometimes every day! If it is a medical necessity - we need to wash off fluids and substances we have involuntarily passed - and you cannot do it with a sponge bath in bed, then I guess immediate showers are a necessity. Otherwise - let’s all try to make them more fun and less functional.
Richard
Take care of first things first-apply for long term care insurance!
Hello!
If you suspect, smell, think and/or worry about if you might have the early signs of dementia, mild cognitive decline, Alzheimer’s - and you want a doctor to confirm or deny your suspicions because you hope some doctor or researcher might be able to delay, and/or cure you suspicion - please consider first applying for long term care insurance before you go to the doctor. Begin this process at least a couple of months before you go to the doctor, so you can apply for three or four long term insurance polices and complete the application process before you go to the doctor. You will probably be rejected by some of them and they won’t tell you why so apply for a bunch of them and then you decide which one(s) you want to accept.
Insurance is a bet. You bet you might get something and need a certain type of insurance. They bet you won’t get it and will just get to keep your premium. Most long term care applications ask if you have ever been told by a physician you have dementia? If you have ever taken any medication for Alzheimer’s or dementia? Just the word “dementia” can be a reason for you to be rejected for this insurance. Just a musing on your chart by your doctor “check to see if he/she may or or may not have some form of dementia” is a reason to scare most all long term care insurers away from you.
In reality they are in business to insure against things that won’t happen, or if they do, they won’t qualify under your policy. This is not a savings plan for you, this is a profit plan for them. They have figured out ways to insure themselves against the very risks they claim they are protecting you from. They sometimes require that you not be covered for something for which you bought the insurance in the first place.
This is not legal advice. Don’t seek to defraud your prospective insurance agent. However, realize realize they made up the rules. Follow the rules, but wait until you are good and most important ready.
Richard
Wyeth & Elan:hope grows for Alzheimer’s treatment — This is how it happens - -The Hype, the Hope, the Reality
This is how the hype, the dreams, the exaggerations, and the half-truths that savage the minds of caregivers who harbor one percent or more the hope their loved one can be cured of the disease begin. What follows is an actual news release/report on a major new drug study. Note I am neither a pharmacist nor a physician; these are just my own reactions. Take them with a couple of Advil or grains of salt and take a nap after you read this.
News released
published on July 18, 2008
First results for a novel Alzheimer’s treatment suggest that it may slow disease progression.
Shares in Wyeth and Elan have risen following the release of much anticipated results for Alzheimer’s treatment bapineuzumab. Although the primary endpoint was not met, the results suggest that the product may slow disease progression in approximately half of patients with a specific genetic make-up.
Note it is only effective (whatever that means) in approximately ½ the people who take it, and most importantly you need a specific genetic make up to have any hope at all of being in the fifty percent whose disease progress was slowed (sort of). Note they even say the goals of the study were not achieved (they refer to them as “end points”).
Wyeth and Elan announced headline results from the Phase II trial of novel Alzheimer’s disease treatment, bapineuzumab (AAB-001). Bapineuzumab is a monoclonal antibody (mAb) designed to clear beta-amyloid, a toxic protein that is thought to be a cause of the cell death associated with Alzheimer’s. By reducing levels of beta-amyloid, it is hypothesized that progression of the disease will be slowed.
A more recent study just published suggested this beta-amyloid theory as the cause of Alzheimer’s is probably not true. However, that does not stop them from continuing to hope (pretend, wish) it is true.
Recent hopes for a disease-modifying treatment have rested on Myriad’s Flurizan and Neurochem’s Alzhemed. The products showed some degree of efficacy in Phase II trials, but Alzhemed was discontinued in 2007 after disappointing Phase III results. Myriad, meanwhile, is due to present results from its US Phase III trial in June 2008, which will help to define the level of benefits that bapineuzumab must provide if it is to be a commercial success.
The results are now out on phase three trials throughs drug Flurizan. The company dropped the drug; the multi- site results did not support their “initial hopes and claims.” The first two breakthrough drugs, weren’t - break-throughs that is.
Although bapineuzumab failed to show statistically significant efficacy overall, this endpoint was met in certain patient sub-groups. Approximately 40-50% of individuals with Alzheimer’s are estimated to carry the apolipoprotein E4 (ApoE4) gene. It is thought that the gene may increase the beta-amyloid load in patients compared to those with an alternative genetic make-up. As such, bapineuzumab may have the greatest chances of success in non-ApoE4 patients only - those that showed statistically significant efficacy.
So, the study didn’t achieve its initial goals (they call them endpoints). But wait, if they reconfigured the study design it did help some people. It did seem to help some unspecified number of 40-50% of all people who have the diagnosis share a certain gene. For sure, it did not help 50-60% of the total population who don’t have the gene. But, let’s just emphasize the positive. It helped some people. Of course if you don’t have the gene it for sure won’t help you. It really is a relatively limited market for the drug. But wait, that doesn’t seem to stop them from marketing it to all. We need drugs, so let’s go ahead and approve and promote this and hope the small print gets lost on doctors and patients failing eye site.
Unfortunately, Wyeth and Elan have not designed the Phase III study with this specifically in mind, but Datamonitor considers that regulatory agencies may be less stringent in granting approval given the high-unmet needs in the disease. With aging populations, the cost of caring for Alzheimer’s patients is set to escalate. Treatments that can be shown to slow the disease, even if only marginally, could bring about significant overall cost savings. Similarly, there are large rewards awaiting those companies that achieve this landmark goal.
Datamonitor forecasts that bapineuzumab could achieve global sales of over $4 billion by 2015, having a major impact on the outlook for Wyeth and Elan. Although the product still runs a high risk of failure, the results are broadly positive, giving a first suggestion that it is on track to succeed. Additionally, the results serve to further highlight the potential for mAbs away from the already well-populated areas of oncology and immunology & inflammation.
The product has a “high risk of failure” but the” results are broadly positive?” Is this double speak? Four billion dollars in sales for a pill which has a high risk of failure, no proven chance of helping half the people with the disease?
Isn’t this amazing. It will make lots of money even though the results didn’t support the initial hypothesis and claim. Lots and lots of people will buy the drug even though they don’t fit into the gene pool that “helped” 40-50% of the people in it! And how exactly did it “help” people? In what stage of the disease? For how long? How was it measured? How long did it last? What happened after the effect wore off?
Don’t ask and they won’t tell except if made to state it on the package insert.
I’m not a physician, nor a researcher. I’m just a person trying to read between the lines and words of the hype.
This creates, supports, suggests hope where there is little to none. This preys upon the fears, hopes, confusion of caregivers and people with dementia. This is awful and should stop! Most Unfortunately it seems as if it is just getting started!
Source: Datamonitor
Richard
In This Issue
The truth as seen through four eyes
I wish I were a nude mouse!
1,001 ways to take a shower
Hope grows for Alzheimer’s treatment
Stop repeating yourself
Take care of first things first
Stop Repeating yourself - This is too important not too.
Hello
I don’t mean to be a pest, nor a spammer, but this is a pregnant moment in the history of how the Federal Government decides how much and where and why it is going to throw lots more money at dementia in the (well intended, mistaken, and insensitive and inappropriate) belief that maybe someone on the public dole will find the cure. Or perhaps even better yet some one will discover and understand the process of dementia and every drug company in the world can benefit
from it…unfortunately, in the mean time…we’re still
here and there are going to more and more and more of us.
Another failing and long supported strategy, another new “first”, another promising line of finding the cure, another blow to the claims we are getting meaningfully closer to a cure recently happend when yet another pill dropped out of the much heralded pipe-line of new drugs to fight dementia/alzheimer’s disease, and failed to meet the even modest expectations of the drug company.
This is the second drug to drop out of the fabled and heralded pipe line of the future, only to fall flat on it’s face. Can you really expect to fix something when you don’t know how it works? When you really don’t know what exactly is wrong with it? Should you, can you hit the target when you can’t see it?
In the mean time, the shouting for more money to fund more shots in the dark gets louder and louder. I don’t want the researchers to stop, I just want them and their cheer leaders to pause to get organized, to stop reading their own press releases, to stop coming to conventions to cheer each other on as they all wander around in the dark.
I want them to slow down looking for tomorrow and pay more attention to today. Focus more time much more money, and their creative energies on real people, real problems. Understand the people at the same time they are trying to understand their disease. Hold world wide conventions on psycho-social research. Be as proud, supportive, enthusiastic, optimistic of what is being done today to understand the real life consequences of the symptoms of dementia and their toll on individuals sense of purpose and self esteem; on the toll on caregivers as many organizations with the word Alzheimer’s on their appeals for more money are proud of their 25 year support of research for a cure for tomorrow. Or is it tomorrow or the next day, or a year from now, or maybe never-ever.
Please, act like the problems of today are at least as important as the problems of tomorrow. Where is the leadership, the web sites, the champions, the fund raisers, the P.R. campaigns, the news releases supporting the real need for a Marshall Plan to understand and alleviate the impact of dementia on human beings directly and indirectly impacted by the disease?
Richard
Take care of first things first-apply for long term care insurance!
Hello!
If you suspect, smell, think and/or worry about if you might have the early signs of dementia, mild cognitive decline, Alzheimer’s - and you want a doctor to confirm or deny your suspicions because you hope some doctor or researcher might be able to delay, and/or cure you suspicion - please consider first applying for long term care insurance before you go to the doctor.
Begin this process at least a couple of months before you go to the doctor, so you can apply for three or four long term insurance polices and complete the application process before you go to the doctor. You will probably be rejected by some of them and they won’t tell you why, so apply for a bunch of them and then you decide which one(s) you want to accept.
Insurance is a bet. You bet you might get something and need a certain type of insurance. They bet you won’t get it and will just get to keep your premium.
Most long term care applications ask if you have ever been told by a physician you have dementia? If you have ever taken any medication for Alzheimer’s or dementia? Just the word “dementia” can be a reason for you to be rejected for this insurance.
Just a musing on your chart by your doctor “check to see if he/she may or or may not have some form of dementia” is a reason to scare most all long term care insurers away from you.
In reality they are in business to insure against things that won’t happen, or if they do, they won’t qualify under your policy. This is not a savings plan for you, this is a profit plan for them. They have figured out ways to insure themselves against the very risks they claim they are protecting you from. They sometimes require that you not be covered for something for which you bought the insurance in the first place.
This is not legal advice. Don’t seek to defraud your prospective insurance agent. However, realize realize they made up the rules. Follow the rules, but wait until you are good and most important ready.
Richard
What’s new with Richard?
I’ll be meeting with people who are living with dementia and their caregivers in Austin, Texas on Wednesday, the 20th of July.
I’ll be speaking in Austin, Texas on Thursday the 21st.
I’ll be speaking on an internet radio program at 9 PM on Thursday the 21st of August. Check out the web site of the Alzheimer’s Foundation of America for details.
I’m starting to work with leaders in the Assisted Living Industry. Other than nursing homes, assisted living communities “hold” more people with Dementia than I believe are actually in memory units, yet there is little or no understanding, appreciation and/or support for them. Many enlightened professionals in Assisted Living want to change that situation. I want to help them!
In September, I will be speaking in Tyler, Teas, Sheffield Bay Michigan, San Francisco, Houston, and Kansas City.
I’m working with the Museum of Fine Arts in Houston to develop a program to encourage self-expression in people with dementia through exposure to various art forms.
I’m finally completing my first DVD of parts of some of my presentations. It should be done by the end of August.
I’m always looking for feedback to my writings, opportunities to speak, and your ideas. Please write to me at
richardtaylorphd@gmail.com
Links
If you only have time to look at ones of these links-please look at this one. This guy could be the twin brother I never had. He thinks/sees/knows the exact issues I have stumbled upon in my own journey with Dementia:
It’s worth your time to read this!
The link to my new and expanded press kits-lots of free materials from my book:
Check this out!
Launched by the National Family Caregivers Association and Intel! It’s intent is to help caregivers network with each other:
A new site for caregivers
I’m pretty sure specific intellectual activities will prevent dementia, but I’m also pretty sure they can delay the onset of some symptoms, and they are good for the hearts and minds of living people with the symptoms:
Challenge your brain
Screening for dementia, or even better yet, setting a base line for your own cognitive abilities against which future checks/screenings may be compared is a great idea whose time is fast coming upon us. Lots of quacking out there about this or that test. Check it out and consider it. I know these people:No quacking at this link!
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 they cannot know unless and until you Stand Up! SPEAK UP! Now!
Seek to create and except from others a Palpable Sense of Change and Urgency!
Richard Taylor, Ph.D.
Alzheimers from the Inside Out, LLC
