Tuesday, May 08, 2007

125a Alzheimer's press briefing Monday May 14, 2007

Hi Gevera-

My name is Tony Obregon and I came across your name online as someone that may be interested in a new report that sheds light on the economies of Alzheimer’s drug development and treatment.

The study was sponsored by ACT-AD, a coalition of 49 national organizations representing patients, providers, caregivers, consumers, older Americans, researchers and employers and shows that the U.S. could save trillions of dollars by 2050 if critical Alzheimer's treatments were available. The report will be revealed during a press briefing on Monday, May 14 from 12-1pm EDT at the National Press Club in Washington, DC. The briefing will be led by a distinguished panel of experts, including report authors and patient advocates and will also be available via teleconference/web cast. I’ve pasted the media alert below with additional information.

We invite you to attend the press briefing, if you can, either by phone or in person. If you cannot join, I hope you will spread the word regarding this study and the necessity for accelerating advanced treatment for Alzheimer’s patients. If you would like, I can send you the embargoed report when it is made available.

Feel free to contact me, Gevera, if you have any questions.



415.365.8531 work





The first scientific estimates of the potential economic impact that new treatments for Alzheimer's disease could have on the U.S. economy suggest that trillions of dollars would be saved. The full findings will be announced during a press briefing led by a distinguished panel of experts, including report authors and patient advocates. The paper will also be posted with National Bureau of Economic Research (NBER).

While recent estimates have upped the number of people likely to be affected by Alzheimer’s disease and the bankrupting cost of care in coming decades, this new study is the first to project the economic benefit if the Alzheimer’s crisis were to be blunted by disease delaying drugs emerging from research pipelines. As such, the study findings provide an important missing piece in the argument to speed access to promising Alzheimer’s treatments and will help to move the national debate about the disease toward mobilizing solutions.

The study was sponsored by ACT-AD, a coalition of 49 national organizations representing patients, providers, caregivers, consumers, older Americans, researchers and employers seeking to accelerate development of potential cures and treatments for Alzheimer’s disease.

There are more than 5 million people in the United States living with Alzheimer’s disease. Given the rapidly increasing age of the U.S. population, the number of people with Alzheimer’s disease will double in the next twenty years. One in 10 people over 65 – or 5.6 million Americans – will have the disease by 2010. Without interventional therapy, the number of cases is expected to rise to 13.5 million by 2050. Currently available treatments for Alzheimer’s disease provide only temporary symptomatic relief and only for some patients, while therapies under FDA review may significantly delay or reverse the course of the disease.

John Vernon, Ph.D., Assistant Professor in the Finance Department at the University of Connecticut School of Business, where he teaches courses in finance, risk management and insurance, decision analysis, and computer-based simulation modeling.

Robert Goldberg, Ph.D., co-founder, Vice President and Director of Programs for the Center for Medicine in the Public Interest (CMPI), a non-profit educational charity dedicated to the diagnosis and treatment of diseases at lower costs.

Daniel Perry, Chair of the ACT-AD Coalition and Executive Director of the non-profit organization Alliance for Aging Research, the nation's leading citizen advocacy organization dedicated to promoting a broad agenda of medical and behavioral research to improve the health and independence of older Americans.

Meryl Comer, Alzheimer’s Association National Capital Area Chapter Board Member, and Emmy-award winning reporter, producer, moderator, and talk show host with more than 30 years of experience in broadcast journalism. Ms. Comer is also principal caregiver for her husband who has advanced Alzheimer’s.

Monday, May 14, 2007 12 - 1pm ET

National Press Club, 529 14th St. NW, 13th Floor - Washington, DC 20045, Lisagor Room
Lunch will be served

125 death is all consuming

My mom and I finally met with an elder-care lawyer yesterday for advice on how to proceed with the inevitable; putting my dad in a home, having him die, what happens to the house and my parents' life savings.
It's not pretty.
I am so ANGRY about this. My parents worked hard their whole lives, saving money when they could, making their home nice (it's no mansion, but it's a decent place, bigger than mine), only to have everything consumed by this disease and the slow way it is killing my father. It's not fair. It's not right.
It's not about me, either. Yes, I did have it in the back of my head that some day my parents would die and I'd get their house, which I could sell for a nice chunk of change for my own retirement (given my mom's family's longevity, that's truer than you'd think--my grandma's still going at 89 and my mom's barely at retirement age). Of course that would be great, not that I ever want someone to die so I can get their stuff--that's just morbid. And my parents wanted me to have everything they worked for once it wasn't necessary to them anymore.
But that's all gone now. There will never be an inheritance for me. Just documents to sign, information put into my brain that I don't want to know. I don't want to make medical decisions for my parents, I don't want know anything about living wills and medical powers of attorney. I don't want to plan and pre-pay for my parents' funerals. I want to be an ostrich with my head in the sand. I don't want to be told that once I have these powers that I can't leave the country because if I'm not available the power that I don't want in the first place will be taken from me if there's an emergency while I'm gone, and my parents' wishes won't be respected if I'm not right there to force someone to listen. So this goddamn disease is not only stealing my father's brain and life, my mother's peace of mind and her home, but my experiences swimming with sting rays in Grand Cayman and climbing pyramids in Mexico.
The cost of Alzheimer's? Everything you ever owned, everything you ever thought you would get, and things you never even thought about.

Thursday, May 03, 2007

124 Where does memory live?

Yesterday I stopped by my parents' house to talk to my mom about (FINALLY) contacting an elder-care lawyer to help her safeguard her money and home when my dad finally has to get put away. I brought ice cream. You would have thought I handed my dad a million dollars when I gave him that hideous purple sundae (black raspberry). He eats like a child, getting ice cream, whipped cream and hot fudge all over his face and not knowing enough to wipe it off. Plus the farts, oh the farts.
I had downloaded a trial game at home that I thought my mom would like, plus she's getting a weird error message on her computer, so we went downstairs for a while to try out the game and see if I could get the error (I couldn't). She told me she'd read about a study where rats with Alzheimer's could retrieve lost memories and make new ones.
I tried to explain about brain atrophy but she didn't want to hear it.
Someone posted a link on Yahoo Answers to an article which I guess is about the same study.
It starts out:
Mental stimulation and drug treatment may help people with brain ailments such as Alzheimer's disease regain seemingly lost memories.
Calling Alzheimer's a "brain ailment" is like calling .... oh, I can't even come up with a good analogy. An ailment is a cold, a stubbed toe, a headache. It's a minor inconvenience. "Having a bad day, dearie, oh yes, I've got a touch of the Alzheimer's you know, but I'll be right as rain tomorrow."
Scientists used two methods to reverse memory loss in mice with a condition like Alzheimer's -- placing them in sort of a rodent Disneyland to stimulate their brains, and also using a type of drug that encourages growth of brain nerve cells.
I thought brain cells couldn't regrow, only connections between neurons?
If apparently lost long-term memories could be retrieved, this suggested the memories had not been actually erased from the brain.
If the brain is atrophied, where are the lost memories being retrieved FROM?
The researchers used genetically engineered elderly mice in which they were able to activate a protein that triggered brain pathology very much like that of people with Alzheimer's, with atrophy and loss of nerve cells.

I'm going to go off topic now, into metaphysics.
If you believe in some sort of god-spirit-soul-thing outside you, then I guess you can logically believe that something outside you can hold your memories. Like the Akashic Records, a grand place "out there" where every memory from every lifetime of every person is recorded. Since we can't hold all those memories in our little brains/bodies, they are stored elsewhere. (IMO, this is the true nature of God--all of our memories and thoughts and intent all working together.) If this is the case, than brains have very little to do with memory. They hold a form of short-term memory that's only good for this body--memories of this lifetime. The real repository is out there somewhere, accessible to our souls and god and people like Edgar Cayce.
If you believe this, then yes, no matter how damaged a brain is, as long as the soul is still attached to the body (another topic for another day), the memories can be retrieved.
Think of it this way. If you back up your files onto a thumb drive and then your hard drive crashes, you might forget you had the thumb drive and think the files are gone. But if you find the hard drive and plug it in, voila, there are your files. Think of the Akashic Records as a vast thumb-drive for your life, and all lifetimes if you believe in reincarnation and recycling.
Do mice have Akashic thumb drives? I don't know. I'm not a mouse. I would think not, but who am I to say.
If you are mister or missus scientist and you're laughing at all that, and to you memories are chemical pathways in the brain, then if the brain is atrophied and the pathways erased and the neurons dead, then memory and personality are erased forever.
I'll have to enlarge this and put it on my main website as an article.
Comments welcome, as always, especially from my more technical readers.

Tuesday, May 01, 2007

123 no more Alzheimer's study

My mom had to take my dad out of the Alzheimer's study at Yale. I was (am) so sad to hear that. The people at the study were a great resource for her, very helpful. But my dad's violent reactions (not just a metaphor, but truly violent) to being taken into New Haven for the tests, and for the serum, were getting worse and worse. Yesterday on the way he was hitting my mother as she was driving on the highway and screaming at her. She can't do it anymore. She won't do it, and I don't blame her. That kind of reaction in him could cause a car accident.
He only got one dose (out of 9) of the serum. But he was so disruptive at the hospital that the people at the study had already made the decision to ask him to leave if he acted that way again. On the one hand, you'd think they would understand his behavior/reactions (aren't they trying to study this disease!?) but on the other hand, someone screaming and yelling and making a huge fuss in the hospital is inappropriate.
I felt like the serum may have been helping him. Then again at the time when he got his first/only dose, he also went on a 3x higher dosage of anti-anxiety drugs so I might have just been seeing that.