Tuesday, September 29, 2009

rate of Alzheimer's is doubling every 20 years

Just came across this article on CBS, saying that the number of Alzheimer's sufferers is doubling every 20 years. Currently 35 million people world wide are afflicted, which is 10% more than had been estimated.
Barring a medical breakthrough, the World Alzheimer Report projects dementia will nearly double every 20 years. By 2050, it will affect a staggering 115.4 million people, the report concludes. ....
The report urges the World Health Organization to declare dementia a health priority and for national governments to follow suit. It recommends major new investments in research to uncover what causes dementia and how to slow, if not stop, the creeping brain disease that gradually robs sufferers of their memories and ability to care for themselves, eventually killing them.
There is no known cure; today's drugs only temporarily alleviate symptoms. Scientists aren't even sure what causes Alzheimer's. 
I have no affiliation with any of the studies I suggest people enroll in..but only by being human guinea pigs can new drugs be tested that can save other people.

Alzheimers is doubling every 20 years
(screenprint of article graphic source=article source)

A new clinical trial for those on Namenda in California

I found this on the Spark People website:

If someone you care about is taking Namenda (memantine), you may be interested in this study of an investigational drug for Alzheimer's disease.
The research site is in Newport Beach, Calif.

Sunday, September 20, 2009

new device offers comforts for dementia patients

Jeannette Twomey, inventor of the Kind Reminder, sent me an email recently to tell me about her product.  It's a little device that plays a recorded message with the push of a large button.  The caregiver can leave a simple message like, "It's Tuesday and I'll see you at 5 p.m." or any information that the dementia patient may need to access frequently.
The recorder is inexpensive and 5% of the purchase price goes to the Alzheimer's Association. If my dad was still alive, I'd have no problem shelling out $20 for this!  Maybe if he had had a recording of my voice to carry around, he wouldn't have forgotten me.   
For more information, visit the website or send an email to contact@kindreminder.com

I am no longer a bird lady (off topic) (revised)

This morning when I got up and went to feed Lance, my 21 year old rainbow lorikeet, he was still asleep.  Usually he is awake and yelling long before I get up.  I brought the cage into the bathroom and he didn't want to come out. I got his medicine into him but he really didn't fight much and I had a really bad feeling.  I fed him and he went right back into the cage, no kisses or playing.  We went to eat and when we got home he was in the corner of the cage on the floor.  We stayed close to him all day.  He slept and didn't want to wake up.  He didn't eat or drink and his poops were very few and solid white (not like they should be).  Around 7:30 Willy called upstairs that Lance was dying.  He had fallen off the perch.  I took the cage into the bathroom and took him out.  I held him and we petted him and talked to him and gave him kisses.  He was just lying limp in my hands, breath rasping, feet unable to grasp.  He kept opening his beak and moving his tongue and I'd like to think he was trying to make kissy noises back to us.  He kept his eyes on me.  His final seizure was very gentle and fairly quick and then he was gone. I got him exactly 21 years ago.
Yesterday he was happy.  He was talking to me and to the cats, making crazy kissy noises and complaining that we were eating in front of him--he liked people food.
His kidneys had been going for months; he'd been on medicine every day since May and been super-hydrated at the vet's three times.  I knew it was coming.  And that it would hurt.  I feel like my chest is crushed.
I don't have any birds anymore.   What will I call the bird room?  
(cross posted to my shamanic blog)
added later:
The day Lance died was 12 Eb in the Mayan calendar.  Eb is the road, the path.  We all follow many roads and paths, and even that day I recognized that my 21-year path as a bird owner, and Lance's life path, were ending.  I am hoping that this is the end of death in my life, for a while, the end of lack, loss and limitation, and the beginning of a new path of prosperity and peace.

I just came across this poem online.
All Is Well
Death is nothing at all,
I have only slipped into the next room
I am I and you are you
Whatever we were to each other, that we are still.
Call me by my old familiar name,
Speak to me in the easy way which you always used
Put no difference in your tone,
Wear no forced air of solemnity or sorrow
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was,
Let it be spoken without effect, without the trace of shadow on it.
Life means all that it ever meant.
It it the same as it ever was, there is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you, for an interval, somewhere very near,
Just around the corner.
All is well.

By Henry Scott Holland (1847-1918)
Canon of St Paul's Cathedral

Monday, September 14, 2009

Stem Cells from Fat?!

I'm sure I don't have to explain to anyone browsing a blog about Alzheimer's what stem cells are and how they might help those suffering from AD.
CNN.com reports today that multipurpose stem cells can be created easily from liposuctioned adipose tissue.
(T)he Stanford study has shown fat cells can be a player in the quickly evolving area of iPS stem cell research, not because they have their own stem cells but because the fat cells can be turned into iPS cells....The method that uses fat cells can be as much as six weeks faster (than using skin cells)... because the cells retrieved through liposuction are so plentiful, they can start reprogramming right away and have iPS cells in about two weeks.
I know it will be years before anything comes of this.  But it is encouraging that stem cell research won't be stopped anymore and mixed up with the question of abortion.  Unless right-wing people suddenly decide liposuction is a religious issue!
stem cells from fat?
(screenprint of original)

Saturday, September 12, 2009

Dimebon, a new miracle treatment for Alzheimers?!

I saw something about Dimebon last week, on my laptop,stupidly didn't bookmark it.  Then I had to clear my cache and cookies and things after a media player upgrade installed a pop-up server, and I lost the site.  Imagine my surprise to realize that someone trying to promote it had already gotten in touch with me and I hadn't realized it!  I was going through piles of messages about World Alzheimer's Day (see previous post) and there it was, not one but TWO notes.   Sometimes I am such a blonde!
There is a blogspot blog about studies on Dimebon in Australia--they are the ones who told me about the CONCERT study.   The Medivation, Inc site says Phase III studies are looking for people NOW. 
Details from Medivation:
Dimebon is an orally-available, small molecule that has been shown to inhibit brain cell death in preclinical models relevant to Alzheimer’s disease and Huntington’s disease, making it a potential treatment for these and other neurodegenerative diseases. Based on clinical and preclinical data generated to date, Medivation believes that Dimebon works through a novel mechanism of action improving mitochondria function.
Let's say that again.   Inhibit brain death.   The hideous atrophy.   Oh, if only someone can now come up with an easy way to diagnose it before someone's brain is atrophied by a third and they are showing obvious symptoms!
If you or your loved one wants to test this drug, please contact them.  For the most part my father's experience with clinical testing was positive for him and for the family.  Even though he ultimately ended up with the placebo, I still feel it was worthwhile.
The CONCERT Study, a Phase 3 Trial of Dimebon (Latrepirdine) in Patients with Mild-to-Moderate Alzheimer’s Disease Who are Currently Taking Aricept® (Donepezil), is Now Actively Recruiting Patients. Study Highlights:
  • International, double-blind, placebo-controlled safety and efficacy study
  • Designed to determine whether dimebon, when taken in combination with Aricept®, safely improves memory, thinking and awareness, daily functioning, behavior, and the ability to care for oneself
  • Enrolling 1,050 patients at sites in the United States, Europe, Australia and New Zealand
  • Patients aged 50 and older with a clinical diagnosis of Alzheimer’s disease, who are currently taking Aricept®, may be eligible to participate
  • Two-thirds of patients will receive dimebon and one-third will receive placebo
  • All patients who complete the 52-week study, including those taking placebo, will be able to take part in another study where they receive Dimebon at no financial cost until the drug is approved
For more information on CONCERT study locations, eligibility and enrollment, please visit www.concertstudy.com or call toll-free 1-877-888-6386.
In Australia, call 1-800-235-526 or visit www.concertstudy.com

World Alzheimer's Day is September 21!

I've been inundated with emails and notes from various Alzheimer's charities and groups about their promotions leading up to World Alzheimer's Day on September 21
We're right around the 2 year anniversary of when my dad was violently taken from the house after trying to kill my mom, and thus he started on the horrible spiral that led to his death 2 months later.   I can't bear to read it again, maybe I never will, but if you are interested it starts here.
I can't imagine when I will ever be able to look back at the months of September, October and November 2007 without pain.  Some days I can't even bear to think about my father.   It's usually when I am alone, driving, when it hits me--a song on the radio, passing a store or restaurant he liked, or even a random chain of thoughts that leads me to think my dad was stolen from me and no matter what drugs they come up with now, I can never ever get him back.  Then I drive the long way home, until I finish crying.
Which is my excuse, I guess, for neglecting this blog.  I think about writing, but it stirs everything up, and then I end up in front of my computer crying into my cat's fur. 
Here are some of the campaigns that have been brought to my attention lately.  If I missed yours, let me know!

  • Alzheimer’s Research Trust has launched a nationwide awareness and fundraising campaign called Memories Matter. In the run-up to World Alzheimer’s Day on September 21st, they have created a special website - www.memories-matter.org – inviting members of the public and celebrities alike (including Terry Pratchett, Tony Robinson and Michael Parkinson) to share their special memories on the Memory Wall.
  • The Alzheimer's Association sponsors a Memory Walk every year to raise money.   Visit the web site to find the nearest walk.  The ones in New Haven and Hartford are both on October 4.
  • The Alzheimer's Association of CT asks that everyone wear purple (the color of the Alzheimer's bracelets) on September 21, and send a photo of everyone at work in purple to:  christianne.kovel@alz.org for use on their website. 
  • Wellsphere will have a special TV show on Alzheimer's set to premiere Sept 21 at 8pm on RLTV (retirement living tv). Watch preview clips on www.rl.tv.