“She wished that I would disappear.

I wished I COULD disappear into my own perfect world.”

“Don’t underestimate the impact of dementia on your family and community.  This is not a one person disease.” Lori La Bey, Alzheimer’s Speaks

“Fragile House” – short film by Dale Metz, written, co-directed and co-produced by Jennifer East and starring Mary Brotherton, Betty Gillander, Anna East, Grace Chapman, Maddie Bright, Tiffany Dion, Ella Schnacky, Makaylee Rinaldo, Bayley Ellenburg, Raven Megna, Nickolas Wolf, Kristian Galloway, Giovanni Galloway, Adrice Galloway

by two young amazing artist!

This song is a tribute to those affected by Alzheimer’s Disease and their families. The musicians, Brian Asselin and Eric Disero will donate half of all proceeds from this song to the Alzheimer’s Society of Canada to help continue research so one day we can hopefully cure this illness.

You can purchase the song on iTunes, CD Baby, Amazon, or on my website at www.brianasselinmusic.com

Marc Wortmann is the Executive Director of Alzheimer’s Disease International, known as ADI.

Today Marc will share ADI’s vision and mission with us.  We will learn about the similarities as well as the differences between his organization and other organizations, but most importantly we will hear how we can work together as a global force to shift our dementia care culture.

ADI’s Next Conference will be:
27th International Conference of Alzheimer’s Disease International,

March 7th-10^th, 2012, London, UK.

The theme is: Science, Fact, Fiction

Conference website: http://www.adi2012.org

Early registration deadline: 13 January 2012.

Rick Phelps Founder of Memory People will also share his updates with us as well towards the end of the show.

By Carole Larkin

Pfizer is the pharmaceutical company that makes Aricept, what was the most prescribed drug for Alzheimer’s disease.  Aricept went generic over a year ago. Pfizer also was the pharmaceutical company behind Dimebon; a promising Alzheimer’s drug that made it through phase II clinical trials, but was ultimately abandoned as “not effective”. Research continues on Alzheimer’s drugs at Pfizer and at other drug companies today.

I came across an article in the January- February article of the AARP.org/bulletin written by Patricia Barry that caught my interest.  Permit me to quote a few lines from the article.

“Drug market analysts have long speculated on how Pfizer might try and maintain profits after Lipitor- the anticholesterol prescription drug that has earned up to $12 billion annually over 15 years-lost patent protection on Nov. 30. Now they know.

Pfizer has launched an unprecedented campaign to persuade patients to stay with its brand instead of switching to the newer lower-cost generic, atorvastatin. In a controversial move, Pfizer has made deals to stop many insurance plans from covering the generic. Instead the plans will cover only Lipitor and charge patients lower copays- which sounds like a great deal for many consumers.

But for people with Medicare D plans especially, there’s a catch. If a part D plan decides to cover Lipitor but not the generic, enrollee’s will hit the gap (donut hole) faster because only the higher brand price will count towards the limit ($2930 in 2012). Such arrangements will continue until May 31, when more drug makers will be able to market generic versions of Lipitor and competition will cut back prices dramatically. Meanwhile, other blockbuster drugs are due to come off patent in 2012, and experts think that their makers will likely copy Pfizer’s strategy.

Pfizer’s move brought a swift response from the Senate’s Finance committee and Special committee on Aging, which have asked the company for details of its deals with the benefit management companies that serve as middlemen between drugmakers and insurers.”

What if the committees mandate that this strategy can go forward for all prescriptions that come off patent in 2012, only if the profits gained go towards research on Alzheimer’s drugs?

What do you think?

Carole Larkin

Carole B. Larkin is the Geriatric Care Manager for ThirdAge Services, specializing in all forms dementia care. She has a Master of Applied Gerontology degree with a specialty in Aging Services from the University of North Texas.  Carole is a certified specialist in “Best Care” practices by both the Alzheimer’s Foundation of America and the National Council of Certified Dementia Specialists  and has worked for the Dallas Chapter of the Alzheimer’s Association.

   Carole is a Certified Alzheimer’s Educator and trains home care companies, assisted living communities, memory care communities and nursing homes in dementia care techniques to enable a higher quality of life for persons with dementia and their families.  She has training in mediation skills and works with eldercare attorneys resolving difficult family issues regarding dementia.   

Carole functions as the hub of the wheel of resources available to help families, and makes specific recommendations of the highest quality resources available at every price point, saving time and money for the families who secure her services.

She is a member of the National Association of

, the American Society on Aging,  the Dallas Area Gerontological Society, OWL, the Friends of the Alzheimer’s Disease Center at UT Southwestern Medical Center  and Sigma Chi Omega, the national Gerontology Academic Honor and Professional Society.  She has been a Care Manager for more than seven years and has served older adults and their families for over two decades.

214-649-1392

Email Carole

www.thirdageservices.com

(Paraphrase of Woody Allen’s words and view of life)

Dr Richard Taylor

On Watching and Hearing the Wisdom of the new Federal Committee to write a plan to plan to write a plan (now to write a draft of a plan to plan  to write a plan) of how the Federal Government should lead/fund/Create the efforts of a few to “create a world without Alzheimer’s on or just before or after January 1, 2025…

I spent the last few days watching the self-anointed leaders of the Alzheimer’s crisis take a step backwards from their own promise (a plan to write a plan) and produce a framework of a plan to write a plan). And then spend a day telling each other the framework is not enough.

Finally I had to turn it off. Enough was/is enough. I commit to spend the remainder of my public life pointing out the fallacies, half-truths, myths, and stigmas these folks are creating and reinforcing out of one side of their mouths, while out of the other side comes their promise to undo what they persist in creating. Of course they can still suck through a straw in the middle of their mouths your support, donations, and prayers. And they can occasionally burp out a false hope or two every so often. We cannot let these foxes be the spokespersons for us. We cannot let them spend all our money on bench/cure research and relatively little on psychosocial research. We cannot let them decide for us who should the focus of their efforts and who can be ignored.It’s time for the chickens stand up and crow, to walk around a pick/peck. To be seen and heard.

Myths, half-truths, lies, and hoaxes are what we use as stand-ins to avoid thinking about specific individuals.  True we demonize some, we lionize others. We take pity on some, and worship others. Yet everyone is someone, distinctly different and fundamentally alike as you and I are with each other. But it is easier, safer to think of classes of human beings – by sex, race, ethnicity, disease groups, etc.

If we continue to buy the lie that Alzheimer’s Disease is sole cause of the public health crisis we are dooming more than another generation to feel “left out” of the dementia discussion, of the dementia research, of the dementia support (such as it is) provided by organizations and governments.

This is wrong, wrong, wrong.

If we continue to but the hoaxes, half-truths and myths promoted by organizations and researchers that all that is need is 13 more years, lots and lots more money spent quicker, and a committee or two to watch over the assured progress we are dooming the rest of the dementia community (those with a diagnosis of probably Alzheimer’s) to a life much emptier of quality, meaning, and joy while we wait for the clouds to part and the cure pill to come tumbling down on January 1, 2025.

This is wrong, wrong, wrong.

What are we goanna do for/about the increasingly bad state of life for 10 million Americans now living with some form of dementia, and 10 more millions of their care partners? What are the research priorities? Finding answers to today’s human problems, or making up a date when there will no longer be tomorrow’s problems.

Let us stop watching this happen. There is no plan, there is no science, and there is no growing consensus outside of a relatively small group of researchers, to find a cure on or near January 1, 2025.

Let us stand up and speak out. These emperors of Alzheimer’s are not the leaders who will address the dementia public health crisis. These emperors stand naked from their own inability to solve half or these of this 30-year-old crisis. They stand naked together and lacking little to no support from their scientific colleagues most of whom admit we are not even close to understanding Alzheimer’s/Dementia. Remember the findings of the NIH just last year/

Now comes a committee of the one eye (bench research) to proclaim “war on Alzheimer’s.” They even tell us the date the war will be over, if only we sacrifice the quality of life of those with it, so we can concentrate our energy, donations, money, prayers of finding a cure pill so no one else will ever get it and we can finally after all who now have it die, live in a world without Alzheimer’s (but of course still filled with the other fifty or so forms of dementia).

This is wrong, wrong, wrong.

They are declaring war, to the neglect of those who in whose name they want us to fight/donate. This war, as most wars comes down to power, influence, fame, and money. Though pure of motive in most of their minds and hearts, they have simply come to believe their own hoaxes, lies, half-truths, and stigmas. These in their twisted minds justify the war. The justify neglecting those in whose name the war is fraught, and write them off as collateral and relatively inexpensive casualties. This war is about opening up nursing home beds, saving Medicare, reducing the federal deficit. For these are the reasons/evidence they advance to justify the war. And, yes, there are occasional warnings of “this could happen to you if you don’t do and support what we ask/need. And who is the enemy? What is the enemy? Dementia? Alzheimer’s Disease? Stigmas and hoaxes? The symptoms of the poor, suffering, soulless, dying twice barely human beings who are living with the symptoms?

Be careful not to wound them while you shoot at their symptoms. Be careful not to demonize them with your neglect of their humanity, your weapons of war which may or may not slow down, reverse, eliminate, and/or destroy the symptoms – but then again the last 15 weapons (pills) we have developed have all failed, leaving broken hearts, broken half promises, crushed hopes in the minds and hearts of care partners and their partners

.

Please, please – For your own sake, the sakes of your family, and the rest of the world – stand up and speak out. We are quickly falling further and further behind in the race they created to capture the hearts, minds, and money of politicians and citizens. They first redefine the dementia crises with the words “The Alzheimer’s Crises.” And then they convinced others with power that they are suddenly smart enough to this time for sure truly claim the cure is just 13 years away with absolute certainty.

We all whispered to each other about how wrong this was. Wrote blogs, created petitions, made presentations to each other, fired off an occasional broad side via emails, and then we all went to bed. They have stayed up all night, running focus groups, reinforcing fears and stigmas, lobbying for 20 years for something that was “soon to come, light at the end of the tunnel, supported by breakthroughs. Claiming, now they know what to do, how to do it, they just lack a few pennies to support their efforts.

Now they spread false hopes, reinforce stigmas, state wishes as facts – all while under the all-knowing eyes of the Executive and Legislative branches of our government.

What is each of us going to do about out this? What are some of us going to do about this? What should all of us do about this?

You decide. I have.

Richard Taylor

Photography by Tony Smith

My good friend and colleague Michelle Mason of Chicago is putting together an amazing exhibit called the “Alter Ego of Alzheimer’s Disease.”  The photographer is Tony Smith.  You can take a peak at a preview by going to Michelle’s blog Endingdisease’sBlog  For more details on the exhibit please contact Michelle through her blog by making a comment.

I will never forget that awful day,
When dementia came to take you away,
All those memories, all those years,
Running down my face, now as tears,
Why is this life, oh so cruel,
Trying to turn you into Dementia`s fool,
But above it all, you stood tall,
When dementia, came to call,
Every day you stood and fought,
So determined, not to be caught,
Its all this, we will remember,
When looking back, on life`s embers,
How brave you were in dementia`s Face,
Never slowing to its pace,
So goodbye my love, see you soon,
On the bright side of the moon

Norrms

Thank you Norrms for sharing your life with us in such an intimate way.  You are making a huge impression around the world and changing the face of dementia forever.  Thank you for making it real -the good, the bad, the ugly, and the gifts which are wrapped in this disease.  Your writings are profound and for that I will forever be grateful to you.

Lori La Bey, Founder of Alzheimer’s Speaks

Again our friend Norrms contributes the truth of the disease.  Thank you Norrms for all you are doing!

Something was holding me DOWN!!

I twisted and turned, shouted and screamed, something was holding my wrists so tight I couldn’t move, I felt as I was being pinned down by an unknown force. It was pitch black and I was beginning to panic. I kicked my legs out furiously hoping to make contact with something, or even someone!! Time seemed to have stopped still as all I could hear was my heavy breathing and the beads of sweat ran down my face and made my eyes sting as the salty drops entered them. What do I do? Do I give in to this invisible force, do I let fate take its turn on me and just await the outcome?

The room seemed to becoming a little lighter, I relaxed a little and tried to look around me, trying to recognise where I was. Things started to come into focus as my eyes adapted to the light, and there she was, my “ANGEL” right in front of me, holding my wrists together on the bed and trying her level best not to panic. Her voice started to become soothing as I eventually emerged from this nightmare/night terror and relaxed a little more. I looked upon her reassuring face and felt a horror I had never felt before. The HARD HONEST TRUTH is Elaine had to try and hold down all the 19stone+ of me because I was shouting, kicking and screaming in my dream like state, and believe it or not, her first words were “I was trying to stop you from hurting YOURSEF!!!

What “COULD HAVE HAPPENED” is truly too horrible to think about, and the everlasting thought in my head ever since has been just that! “WHAT COULD HAVE HAPPENED” It was quite a while before any of us drifted off back to sleep and I have that sneaking feeling I fell asleep first as Elaine watched over me until I was back asleep.

This is the kind of thing nobody tells you might happen

This is the thing that sometimes “No one wants to talk about!!”

More importantly this is the kind of thing that loved ones and carer`s have to put up with on a nightly basis “YES NIGHTLY” not weekly or monthly but every single night!!!

Yet this is the kind of thing that happens all over the world every night and so many people are at a complete loss as what to do.

This is why we must keep up the awareness raising, the fight to bring ALL TYPES OF DEMENTIA out of the darkness and into the public domain, as I am sure, that the more people know, the more they will help, thankfully that is human nature

Norrms