Tuesday, November 24, 2009

30 days in jail for stealing Alzhiemer's Patient's home....

This is the most disgusting thing I have ever read.  Two women preyed on a 93-year old Alzheimer's patient in New York. They stole his house and left him homeless.  They received a whopping 30 DAYS in jail.
Basically they forged his name, saying he had sold them the house.  Then THEY sold the house and kept the money.  They also forged his name and refinanced other properties he owned, keeping the mortgage money.  
Words cannot convey my sense of outrage.  Nor can I understand how anyone could be such a scumbag.
Happy Thanksgiving, right?
Stealing from dementia patients
(screenprint of original)

Thursday, October 29, 2009

Alzheimer's Association's new Comfort Zone program for finding the lost

The Alzheimer's Association has a new GPS-based program to help find dementia patients who wander.  It seems like an upgrade to the Safe Return program, which I purchased for my dad.  (I still have his bracelet--I don't know why I wanted it.)
Rather than try to explain it, here's what they sent me:

The Alzheimer's Association Comfort Zone™, powered by Omnilink, is the first comprehensive location management system designed specifically for Alzheimer’s, giving people with the disease more freedom and independence in their community while providing their family some peace of mind.  Comfort Zone is a Web-based application that works with various location devices throughout the progression of the disease to proactively communicate the location of the person with Alzheimer’s within two to 30 minutes.  Comfort Zone also offers families assistance with 24/7 monitoring center services and access to emergency health records from the MedicAlert Foundation.

The price of the Comfort Zone service packages varies, beginning at $42.99 a month with a $45.00 activation fee, similar to most cell phone services.  For more information about Comfort Zone please see the attached press release and fact sheets.  You can also visit the Alzheimer’s Association at www.alz.org/comfortzone
At first I was like, $42 a month!  The bracelet I bought my dad was a 1-time $45 fee!  (I think that's changed now, to a per year fee, but I could be wrong.)  Then I reread the most important phrase:
communicate the location of the person with Alzheimer’s within two to 30 minutes
No driving around aimlessly.  No having squadrons of police offices searching.   It doesn't matter if it's dark or cold, GPS will find your loved one.  If that's not worth $42 a month, I don't know what is.  I only had to search for my dad twice--and yes, it was dark and cold one of those time--and while I was driving around, my cell phone illegally in hand, I would have paid any amount of money to just find my dad safe.

(Image from the Comfort Zone web site.)

Sunday, October 18, 2009

Alzheimer's clinical trial in Pennsylvania

This study will evaluate an investigational medication for behavior and personality changes in people with Alzheimer's disease.
The research site is in Norristown, Penn.

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.

Tuesday, August 11, 2009

Help raise money for Alzheimer's Disease!

Accera, Inc.'s new campaign, "Lost & Found," is an on-line initiative whereby each visit to www.lostandfoundcampaign.com prompts a $1 donation by Accera to support the Alzheimer's Foundation of American (AFA).

By simply selecting an icon representing something they have lost or forgotten that day, at no cost to individuals, the selection will trigger an Accera donation to AFA. The funds generated throughout this initiative will be donated to AFA on November 17, "National Memory Screening Day," to further AFA's efforts to support individuals with Alzheimer's disease their families.

National Memory Screening Day, an annual initiative sponsored by AFA, provides free, confidential memory screenings to individuals concerned about memory loss with the objective of early detection and intervention. Qualified healthcare professionals offer the face-to-face screenings at convenient locations in communities across the nation.

"Lost & Found" submissions will be accepted on-line through November 13, 2009.
(Accera, Inc. is a privately held commercial-stage biotechnology company that developed and now markets Axona in the US. Axona is a prescription-only medical food intended for the clinical dietary management of the metabolic processes associated with mild-to-moderate Alzheimer's disease.)

Monday, August 10, 2009

Happy birthday

Today would have been my dad's 69th birthday. I hope wherever he is, he's happy.

Sunday, August 02, 2009

Terry Pratchett and assisted suicide

Terry Pratchett, a British fantasy author and one of my favorites, was diagnosed with Alzheimer's just days after my dad died.   He has given loads of money to research and been extremely outspoken with what is happening to him.   Now he says he wants to die in his garden, listening to his I-pod, on his own terms.
He says, "I live in hope - hope that before the disease in my brain finally wipes it clean, I can jump before I am pushed and drag my evil Nemesis to its doom, like Sherlock Holmes and Moriarty locked in combat as they go over the waterfall.
When we put Nutter to sleep last September, I cried there at the vet's, my hand on his back, as the life went out of him.  But he was suffering and we loved him and it was the last gift we could give him.  How horrible to be denied that when it's a human you love and who is suffering.
Sir Terry says that 'right-to-die' campaigners trying to change the law on suicide are acting with 'furious sanity'. He calls for the creation of special tribunals run by coroners to establish that terminally ill patients who request assisted deaths are acting voluntarily.
Evidently they are trying to pass laws regulating assisted suicide (so it's not prosecuted as murder) and 75% of people polled agree that it's the right thing to do.
It's obvious to me, reading this long article by Sir Terry, that he still has wit and imagination plenty.
We would not walk away from a man being attacked by a monster, and if we couldn't get the ravening beast off him we might well conclude that some instant means of less painful death would be preferable before the monster ate him alive.
Terry Pratchett on assisted suicide
Screenprint of original article

Thursday, June 18, 2009

Trepanation as an Alzheimer's treatment?!

I found this rather baffling New Scientist article about how trepanation (drilling a hole in the skull to relieve pressure) may be a valid treatment for Alzheimer's and other forms of dementia.
Maybe it's because I'm not a scientist (new or otherwise) but I know my dad's brain was atrophied.  Tiny.  Did not fill his skull anymore.  And in fact, that is why he did not die sooner from his two bad falls-with-brain-injury because there was plenty of room for his injured brain to swell.  So I'm confused as to why venting someone's skull when their brain is already tiny is going to help.
(Yuri Moskalenko) is exploring the idea that people with Alzheimer's disease could be treated by drilling a hole in their skull. In fact, he is so convinced of the benefits of trepanation that he claims it may help anyone from their mid-40s onwards to slow or even reverse the process of age-related cognitive decline.
As we age, cerebral blood flow decreases, and the earlier this happens the more likely someone is to develop early onset dementia. It remains unclear, however, whether declining cerebral blood flow is the cause, or an incidental effect of a more fundamental change.
As we age, the proteins in the brain harden, preventing this system from working as it should. As a result, the flow of both blood and cerebrospinal fluid is reduced, impairing the delivery of oxygen and nutrients as well as the removal of waste. Moskalenko's research suggests that this normally begins between the ages of 40 and 50. Moreover, in a study of 42 elderly people with dementia, he found that the severity of their cognitive disorder was strongly correlated with cranial compliance: those with the severest dementia had the lowest compliance.
Ack.  I'm going to be 41 in a couple of weeks.  Do I need my skull ventilated?!
I guess I am too fixated on the brain atrophy part of Alzheimer's (not mentioned at all in the article) to understand how opening the skull would help fluid circulate.
trepanation treats Alzheimer's
image source=article source
screenprint of article

Thursday, May 28, 2009

18 Months since dad died

This week it's been 18 months since my dad died.  My mom came over yesterday for the yearly taming of my front yard (there's a couple of bushes that we cut down every year to the ground and they grow back bigger the next year).  We were talking about how my dad would have been helping us if he was there, carrying the brush to the compost pile in the back yard.  And even how my yard would never ever look neglected or overgrown if my grandpa (her father) was alive--he died a few weeks after my high school graduation, in 1987.   (My mom lost her dad when she was 42 and I didn't even make it to 40 before mine died.)
My mom said that she never thought she would miss my father so much.  The last few years, especially the last few months, he was mostly a burden.  I know that sounds awful....unless you're a caretaker and then you understand.  But now that the violent and confused Bob is gone, we can remember the real Bob, and miss him terribly.
I've been sad all week.  One of my birds died 3 weeks ago, unexpectedly.  Doing all the dead pet things--the crying drive to the vet, going back to pick up the ashes--made me miss my black cat Zen again--and realize that on August 1 it will be 3 years since he left me.  I still feel awful that I didn't say goodbye--I didn't know he was going to die before I ever saw him again--did he think I abandoned him and just give up in less than a day?
I'm reading a book about the conquest of Mexico--a topic that boils my blood.  The Mesoamericans believed in cyclical time.  Time loops around and we have a chance to do it all again:
"Another time it will be like this, another time things will be the same, some time, some place.  What happened a long time ago, and which no longer happens, will be again, it will be done again as it was in far-off times: those who now live, will live again, they will live again."

Tuesday, May 26, 2009

Know the 10 Signs of Alzheimer's

The Alzheimer's Association is promoting a new education campaign called Know the 10 Signs.  They sent me an email asking me to help.
This is a very condensed version of the signs; please visit the full (multi-page) section on the Alz.org website.  Click the purple boxes to get to another section (which will turn orange).
1. Memory changes that disrupt daily life.
2. Challenges in planning or solving problems.
3. Difficulty completing familiar tasks at home, at work or at leisure.
4. Confusion with time or place.
5. Trouble understanding visual images and spatial relationships.
6. New problems with words in speaking or writing.
7. Misplacing things and losing the ability to retrace steps.
8. Decreased or poor judgment.
9. Withdrawal from work or social activities.
10. Changes in mood and personality.
If you see any of these in yourself or your loved ones, please get checked out.  Your GP can administer basic memory tests and will probably refer you for blood and other testing.  You may also be sent for a consult with a
  • Neurologist – specializes in diseases of the brain and nervous system
  • Psychiatrist – specializes in disorders that affect mood or the way the mind works
  • Psychologist – has special training in testing memory and other mental functions
  • Geriatrician – specializes in the care of older adults and Alzheimer's disease

You can also call the Alzheimer's Association at 877-IS IT ALZ (877.474.8259) for more assistance.

Sunday, May 17, 2009

New dementia index prediction tool

A new dementia index tool can apparently classify 88% of patients who will develop dementia in the next 6 years.
Of course, there is still nothing you can do to prevent or truly treat dementia, but at least you can enjoy your remaining dementia-free years and hope for a cure, right?
However, it only works if you are over 65; wouldn't have helped my dad (diagnosed at age 62). A 15-point index including both conventional and newly identified risk factors for the conditions correctly classified 88 percent of patients according to their risk of developing dementia within six years.
Every 70 seconds, someone gets dementia.  That's depressing.
My dad was such an unusual case.  He never fits the stereotypes I read about.  Here is what this test looks at:
older age, lower scores on two tests of cognitive function, presence of at least one of the known genetic variations linked to Alzheimer's, below-normal weight, abstinence from alcohol, a history of coronary artery bypass surgery, and a slow time putting on and buttoning a shirt
He was not of older age or underweight and he drank beer daily.  He did not have heart problems until a year before he died and he put on a button shirt every day until he retired.
The test is not perfected and not available for general use yet.

(Screenprint of original; picture source=article source)

Tuesday, May 12, 2009

Dad's friend & the question "how are you?"

I saw one of my dad's friends yesterday.  He kept asking how I was and I kept dodging the question.  Not because I didn't want him to know, but because it's so hard to talk about still.  And complicated. 
I'm very sad right now.  Hogan died on Friday (read about it here) and I'm still unemployed.  That's two sad things that I'll carry with me for a while.   As for my dad, well, most days I'm okay with it.
But then yesterday I saw Rick Jr and on the way home I just started crying. Not over anything specific, just everything hitting me at once.  I posted after my dad died about the custom of wearing mourning and yesterday I wished I could have had some on and had that shield against people being mean to me.  Not that anyone was mean to me.  I'm not explaining this very well.  I just felt very fragile emotionally.  Even if I wore mourning for 18 months after my dad's death, it would be over now. 
18 months, wow.  It's been a long time since I had a dad.

Exercise your body, save your brain

Can walking three times a week save your memory?   According to the wellness blog Healthy Fellow, yes.
A study published in Journal of the American Medical Association (PMID: 18768421) found that 3 50-minute sessions per week of moderate exercise helped people with memory problems (not diagnosed with Alzheimer's or dementia).  After six months, the exercise group did better on memory tests, had better memory retention, and their Clinical Dementia Rating (CDR) was lower (lower is better).
Another study showed that the more you exercise, the bigger your brain is.  (Mine must be huge, some weeks I get in 9 hours in the pool!)  Studying actual AD patients, the researchers found that those who "weren't physically fit" had four times more brain shrinkage than those who were. 
My dad walked every day and his brain was the size of a walnut.  I guess if he hadn't walked he would have died a lot sooner. 

Friday, May 08, 2009

Coffee prevents Alzheimer's?

I was browsing a natural health forum called NatMedTalk, and I found a post about coffee preventing Alzheimer's.
This is yet another thing that my dad did--drink coffee--that doesn't appear to have done anything for him.  Every time I hear a new one of these, and it's something my dad did as a matter of course (not as prevention for anything), I feel like screaming.
From the post (which quotes in full an article from Science Daily, which in turn references the Journal of Neuroinflammation ( PubMed PMID: 18387175)...
A daily dose of caffeine blocks the disruptive effects of high cholesterol that scientists have linked to Alzheimer's disease.
Okay, my dad did have high cholesterol.  But he had it under control long before he was diagnosed with AD. And caffeine is different from coffee.  Not all coffee has caffeine, and caffeine is in other things than coffee.  Personally I hate coffee but I eat plenty of chocolate and drink cola so I get my caffeine fix that way.
I can see Starbucks picking this up and running with it!   Our overpriced gross-tasting drinks might save your life some day so come on down!
Anyway, drink your coffee and don't feel guilty is the motto of the story.

Monday, May 04, 2009

HBO: the Alzheimer's Project...set your DVR!

I wish I had HBO.  I just saw on another blog that HBO is having a multi-part series on Alzheimers starting next weekend (May 10).

Sunday 5/10 9 p.m. The Memory Loss Tapes
Monday 5/11 7:30.Grandpa do you know who I am?
Monday 5/11 8:00 & Tuesday 5/12 8:00 (2 parts) Momentum in Science
Tuesday 5/12 7:00 Caregivers

There's a book and a DVD as well, click on the HBO link (or on this blog post's title) to get to HBO and order.

Sunday, May 03, 2009

Climbing for Alzheimer's

Mark Zimmer contacted me and asked me to publicize his Climbing for Alzheimer's charity climbing.
He writes:

Thanks so much for your willingness to post this; the more people that know about these climbs, the more good my efforts will do. If you are interested, we have a group on Facebook that you can join. Search "Summit Up" and we are number 1.

My name is Mark Zimmer, and I am a 23 year old from Grand Rapids, Michigan. I recently began an effort with the Alzheimer's Association to climb the highest elevation in each of the 50 states to raise money and awareness for Alzheimer's. Alzheimer's first touched me when I was young and my great-grandmother passed away from it. I still see the effects of it daily, as my grandfather is towards the end of his fight with this terrible disease. Knowing how Alzheimer's has affected my family, and so many other families across the country, I wanted to use my climbs for something more than personal satisfaction.

It is my goal to climb the highest peak in a state every month. Having just gotten underway in April, my climbs will last until May 2013. I am raising money by attracting corporate sponsors to have me carry a flag representing them. We are also are accepting personal donations. If you are interested in supporting our efforts to raise awareness, you can make a donation here. For a donation of $9.99 or more, we will send you a picture from each of the 50 state peaks, thanking you for your support. It is a great way to learn about the varying state highpoints, keep up on our climbs, and support our effort to raise money for a cure.

I think we all know of someone who has had to fight with Alzheimer's, and it is horrible. Let's work to make a difference while we all still can. Remember, we're all climbers!

Mark Zimmer
Summit Up

Wednesday, April 08, 2009

when should Alzheimer's patients stop driving?

Researchers are working on some sort of test to definitively say when a given AD patient should stop driving.  "Typically, specialists say, patients gradually scale back their driving, avoiding busy freeways or night trips or left-turn intersections.My dad did that.  He stopped leaving town and driving on the highway. Then he wouldn't drive on Route 5 (not a highway, but a busy major street in our town).  He would actually drive up the hill from his house, across town, then down the same hill on a different street just so he could cross Route 5 quickly to get to my house rather than drive a few blocks on it! 
Working on ways to help similar patients, Dawson's team (of the University of Iowa.)... developed an intricate behind-the-wheel exam: A 35-mile drive through rural, residential and urban streets in a tricked-out Ford Taurus able to record just about every action the driver takes, much like an airplane "black box" does. Lipstick-size video cameras were positioned to show oncoming traffic, too.
I've seen things like that--Mythbusters had a similar rig when they tested how distracting talking on the phone is while driving.
The results, reported in the journal Neurology (PMID: 19204261), are striking. On average, the Alzheimer's drivers committed 42 safety mistakes, compared with 33 for the other drivers. Lane violations, such as swerving or hugging the center line as another car approaches, were the biggest problem for the Alzheimer's drivers. They performed 50 percent worse.
I see elderly people all the time driving like this. They get on the highway going about 20 miles an hour and hug the line. Where are these people's families?
As part of the study, they also did various memory and neurological testing on the people to see if any test could predict the outcome of the driving test.  
Standard neurologic tests of multitasking abilities did (make a difference), ones that assess if people's cognitive, visual and motor skills work together in a way to make quick decisions. ...Alzheimer's patients ... who scored worse than average tended to commit about 50 percent more errors on the road, Dawson says.
But they weren't able to come up with a simple test any doctor could administer, yet.
(screenprint of original)

Monday, April 06, 2009


I'm on Facebook. Well, kinda. I got tired of all my friends saying "why aren't you on Facebook?" and explaining that I never check my Myspace pages so why do I need another social networking site I'll just ignore? Then I got the bright idea of giving one of my cats a Facebook page. So search for Ursula Bear (Facebook requires a real sounding name and wouldn't take Princess Pinknose, which is what I wanted her page under) and befriend her, if you are on Facebook. Ursi is much funnier on Facebook than she is in real life. Here are some of the pictures she has chosen to post.

Free support for dementia caregivers in Australia

Wow, I wish we had this here in the U.S.  Not sure if I get any traffic from Australia, but here's the info in case I do.  Emphasis mine.

Dementia Behaviour Management Advisory Service free from Alzheimer’s Australia (Qld)
The Dementia Behaviour Management Advisory Service (DBMAS), administered in Queensland by Alzheimer’s Australia (Qld), provides free support for people caring for someone with dementia whose behaviour is having an impact on their care.
The service works directly with family carers, clinicians, community care organisations and those working in aged care facilities to help them better understand and care for people with dementia.
The DBMAS clinically-trained team assesses individual cases where there are challenging behaviours associated with dementia to develop strategies and plans to meet the specific needs of each client.
Queensland carers can contact DBMAS on 1800 699 799 at any time of the day or night. Qualifying situations will be assessed free of charge and appropriate referrals to other support services can also be made.
For more information email info@alzqld.asn.au or click here.

Friday, March 27, 2009

contacting me

I find it highly ironic when people leave anonymous comments asking how to contact me!
In the sidebar of the blog is a link to my profile which has my yahoo email in it.

Thursday, March 26, 2009

newest figures from Alzheimer's Association

My contact at the Alzheimer's Association just sent me the newest "facts and figures" on Alzheimer's.
Depressing numbers indeed.  Colored emphasis mine.

Washington, D.C., March 24, 2009 Total healthcare costs are more than three times higher for people with Alzheimer’s and other dementias than for other people age 65 and older, according to the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures, released today.
In the new report, total healthcare costs are calculated as per person payments measured from all sources. Medicare payments alone are almost three times higher for people with Alzheimer’s and dementia than for others age 65 and over; Medicaid payments alone are more than nine times higher.
“With the country facing unprecedented economic challenges and a rapidly aging baby boomer population, now is the time to address the burgeoning Alzheimer crisis that triples healthcare costs for Americans age 65 and over,” said Harry Johns, Alzheimer’s Association CEO.
“It is widely understood that addressing health care is key to the country regaining its financial footing,” continued Johns. “And there is no way this can be done without improving Medicare and Medicaid which Alzheimer’s directly impacts. A strategy to immediately confront Alzheimer’s has the potential to save millions of lives and billions of dollars by reducing the burden on Medicare and Medicaid.”  
Average Per Person Payments by Source for Health and Long-term Care Services. For Persons, Aged 65 Years and Older, With and Without Alzheimer’s Disease and Other Dementias, 2004
Average Per Person Payments
Beneficiaries with no Alzheimer’s or Other Dementias
Beneficiaries with Alzheimer’s or Other Dementias
Total payments*
  Medicare payments
  Medicaid payments
  Private insurance payments
  Other sources payments
  HMO payments
  Out-of-pocket payments
  Uncompensated care
* Payments by source do not exactly equal total payments due to the effect of population weighting.
Source: Alzheimer’s Association 2009 Alzheimer’s Disease Facts and Figures
People with Alzheimer’s are high consumers of hospital, nursing home and other health and
long-term care services, which translates into high costs for Medicare, Medicaid and millions of families. As families struggle to survive in a deepening recession and as states grapple with budget shortfalls, Alzheimer’s disease threatens to overwhelm them both. Most people with Alzheimer’s also have one or more additional serious medical conditions, such as diabetes or coronary heart disease. Their Alzheimer’s greatly complicates the medical management for these other conditions and drives up costs significantly.
According to the Facts and Figures report, in 2006:
§  Medicare beneficiaries with diabetes plus Alzheimer’s or another dementia had 64 percent more hospital stays than those with diabetes and no Alzheimer’s, and their average per person Medicare costs were $20,655 compared to $12,979 for beneficiaries with diabetes but no Alzheimer’s or dementia.
§  Medicare beneficiaries with coronary heart disease and Alzheimer’s disease or another dementia had 42 percent more hospital stays than those with coronary heart disease and no Alzheimer’s or dementia, and their average per person Medicare costs were $20,780 compared to $14,640 for beneficiaries with coronary heart disease but no Alzheimer’s or dementia.
With family members providing care at home for about 70 percent of people with Alzheimer’s disease, the ripple effects of the disease can be felt throughout the entire family. According to Facts and Figures, in 2008, nearly 10 million Alzheimer caregivers in the U.S. provided 8.5 billion hours of unpaid care valued at $94 billion. In addition to the unpaid care families contribute, the report also reveals that Alzheimer’s creates high out-of-pocket health and long-term care expenses for families. Out-of-pocket costs that are not covered by Medicare, Medicaid or other sources of insurance are 28 percent higher for Medicare beneficiaries with Alzheimer’s than those without. Individuals with Alzheimer’s and other dementia living in nursing homes or assisted living facilities incurred the highest out-of-pocket costs – an average of $16,689 a year.
Growing Prevalence of Alzheimer’s Disease and Dementia
According to the report, there are 5.3 million Americans living with the disease and every 70 seconds someone in America develops Alzheimer’s disease. By mid-century someone will develop Alzheimer’s every 33 seconds. By 2010, there will be nearly a half million new cases of Alzheimer’s each year; and by 2050, there will be nearly a million new cases per year.
Alzheimer’s is the sixth leading cause of death in the country, surpassing diabetes; it is the fifth leading cause of death among individuals 65 and older. From 2000 to 2006, while deaths from other major diseases dropped -- heart disease (-11.5 percent), breast cancer (-.6 percent), prostate cancer (-14.3 percent) and stroke (-18.1 percent), deaths from Alzheimer’s disease rose 47.1 percent.
“Currently, there are no treatments that can prevent, delay or reverse Alzheimer disease and research funding has been stagnant for the past six years. With the first baby boomers turning age 65 in just two short years – and entering the arena of increasing risk for developing Alzheimer’s – an aggressive plan is needed now to address the threat of this disease. There are too many lives, too little time and too much at stake for anything less,” Johns said.
Implications for States
Demographic trends indicate that the number of affected individuals and families will grow significantly in the years to come, not only having a profound effect on families and health systems but on state budgets as well. In order for states to plan for this rapidly growing population, they must first have reliable information about the characteristics and needs of their residents who are coping with Alzheimer’s or other dementia. An existing survey process is the easiest way to obtain this important information. The Behavioral Risk Factors Surveillance System (BRFSS) is an annual state public health survey done in conjunction with the Centers for Disease Control and Prevention (CDC). Since 2003, some states have added questions about caregiving for people with Alzheimer’s and other dementias in their BRFSS surveys.
The new Facts and Figures report highlights the BRFSS survey findings from the states of Washington and North Carolina. The BRFSS survey allows residents to say for themselves what their challenges are. For example in Washington, 48 percent of the caregivers for individuals with memory loss or cognitive impairment revealed that stress was the greatest difficulty they faced.  Beginning this year, an approved set of family caregiving questions is available for all states to add to their BRFSS survey, and another set of questions on cognitive impairment is being developed for 2010.
Mild Cognitive Impairment (MCI) – An Emerging Issue
Experts believe that early detection of Alzheimer’s disease and early intervention with improved therapies provides the greatest opportunity to delay or stop additional damage to the brain. To that end, the new report highlights the emerging role of a condition known as mild cognitive impairment (MCI). A person with MCI has problems with memory, language or other essential cognitive functions that are severe enough to be noticeable to the individual and others, but not severe to interfere with daily life.
There is consensus within the scientific research community that intervention with any
disease-modifying treatment should occur as early as possible, ideally even before symptoms appear. Individuals with MCI have a higher risk for developing Alzheimer’s disease, but more research is needed to determine why some people with MCI go on to develop Alzheimer’s and why some do not. By participating in scientific studies and clinical trials, individuals with MCI will help to speed progress in finding ways to prevent or cure Alzheimer’s by providing scientists with the opportunity to test new Alzheimer treatments and learn faster whether or not the treatments work.  
“There is a rich, diverse variety of treatment possibilities for Alzheimer’s that scientists are exploring, offering great hope that drugs that may slow or even reverse disease progression could be on the horizon – saving millions of dollars in public health programs,” said Ronald Petersen, M.D., Ph.D, the Alzheimer’s Association’s Medical Scientific Advisory Council Chair. “A national strategy and a sustained commitment to Alzheimer research is what is needed to today to make Alzheimer survivors tomorrow.”
The full text of the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures can be viewed at www.alz.org. The full report is scheduled to appear in the May 2009 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 5, issue 3)
The Alzheimer’s Association
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s.
# # #

Wednesday, March 18, 2009

charity book auction to benefit Alzheimer's Society

I recieved this email today.  It's self-explanatory.  If you like books and want to give to charity, here's your chance.

Hi There Bert, Greetings from Dublin.
First off: an excellent- and brave- blog. My own Dad has been an Alzheimer's sufferer for the past nine years. It is a terrible disease, but a topic that I have mostly kept quiet on. It's not something that I have done enough about.
Given your involvement in Alzheimer's and in the world of writing and publishing, I am hoping to enlist your kind assistance. Over the past four years as an unruly online book reviewer, I have collected a healthy bookshelf of first editions signed by their authors. This month, I am working to put some of them into the hands of fellow book fans while raising much-needed funds for the Alzheimer Society of Ireland. I've organized a series of charity auctions through eBay.ie, putting up for grabs my John Banville, Neville Thompson, Claire Kilroy and three others.
The best bit: I'm paying for shipping to anywhere in Europe or North America and my employer matches charitable contributions penny for penny. So double the full winning bid will go directly to the ASI. Full details, FAQs and links to the relevant eBay pages are on http://www.criticalmick.com/criticalmick_auction_2009.htm. If this works out like I hope, then everybody benefits.
If you are interested in publicizing this initiative on your blog, at any time over the course of the series, I will appreciate it! If you don't feel it's a good fit for what you cover, that's fine too. Do keep up the content, your top ranking is well deserved.
With thanks,
Mick Halpin
Webmaster, Critical Mick "Reviews Free of Rules" www.criticalmick.com

Tuesday, March 17, 2009

Alzheimer's-Diabetes link?

A few days ago I wrote about a food designed to help with the diabetes-like aspects of Alzheimer's.  I wondered how diabetes was related to Alzheimer's.  Well, here's the answer.
Doctors long suspected diabetes damaged blood vessels that supply the brain. It now seems even more insidious, that the damage may start before someone is diagnosed with full-blown diabetes, back when the body is gradually losing its ability to regulate blood sugar.....But the latest research strengthens the link, and has scientists asking if diabetes and its related "metabolic syndrome" increase risk solely by spurring brain changes that underlie Alzheimer's _ or if they add an extra layer of injury to an already struggling brain, what (Dr. Ralph) Nixon (of New York University) calls "essentially a two-hit situation."
My dad did not have diabetes. Well, maybe he did once. When he was in the Air Force, after basic training, he had to leave because they diagnosed him with diabetes. He admits that in the Air Force he hated the food and only ate dessert. When he returned home to live with his aunt and uncle, he ate their home cooked food and --tadaa-- no diabetes anymore.
Of course, this link between the two scares me, because I was recently diagnosed with PCOS and part of that syndrome is the possibility of messed-up blood sugar.  Mine is okay but it's being watched.  So now I'm overweight (part of PCOS as well), with a possiblity of my blood sugar going haywire, and I have a first-degree relative with AD--3 risk factors (plus being female).  I might as well put my name on the nursing home list now. 
Alzheimer's/Diabetes link
(link to screenprint of article)

Sunday, March 15, 2009

death of an uncle, grandma is crazy

My grandmother's brother died on Monday. He had a brain tumor, similar to the one afflicting Senator Kennedy, and got it around the same time as the senator.
I'm not sure exactly what happened to my uncle. He had been in bad shape as the tumor progressed, and he was placed in a nursing home in the last few weeks. The nursing home moved him to hospice about a week before he died. But there is so much denial and misinformation floating around in the family--supposedly the hospice was temporary and he was getting better and about to be sent home? That makes no sense to me. And everyone seems so absolutely shocked that he died...a man in his 80's who had been fighting a brain tumor for over a year, maybe even two years.
Seeing my grandmother's reaction to her brother's death makes me really question her sanity and yet I can find no signs of dementia in her, unless she is progressing in a completely different fashion than my dad. She complained throughout the wake about "how hard" it was for her (to sit in the chair? To see her brother dead?) and as usual made it all about her. She refused to come to the funeral; my mom and I went as her emissaries. Nothing I loves better than a high Catholic funeral mass on a Friday afternoon to raise my spirits, followed by a military/Naval funeral rite at a windy cold grave site.
I wasn't at all close to my grandmother's brother--I maybe saw him once a year. His children are all 10-15 years older than me and their children 15-20 years younger than me, so I'm not close to them either. I wouldn't recognize his grandchildren if they were seated near me in a restaurant. I couldn't pick them out of the wake/funeral crowd for the most part. So I didn't grieve or anything, although I cried just because of all the emotion in the air, and being so damn empathic in situations like that.
The most noticeable symptom of my grandma's craziness (for lack of a better word) is an utter absence of hygiene. She doesn't change her clothes (including underwear) more than once a week unless my mom forcibly takes the clothes. She now only "washes" once a week. I use the term "washes" loosely as she doesn't take a bath or shower, just wipes the "dirty" parts of her body. I can't go more than 2 days without washing my hair/body because I feel disgusting, I know I smell disgusting, and it's physically uncomfortable. I don't know how she does it. She never, ever washes her hair, which is plastered to her head with grease and is enough to make a person want to vomit. My mom and I have said we'd wash her hair in the sink or take her to a hairdresser once a month to get it washed and she refuses. I said I'd get her dry shampoo (like powder) and she refuses to use it. How do you reason with a person who is filthy? I hate sitting next to her at meals.
I've spoken to some friends who are nurses and they've made suggestions to try to help my grandma. What would be ideal would be to have someone come in once a week and scrub her head to toe. But Medicare won't pay for that. She is utterly non compliant in all medications, so even if we can get her diagnosed with depression or something, she won't take the pills assigned to her. She refuses to take any medicine because it makes her "sick" and gives her "die rear" (how she insists diarrhea is pronounced) and makes her "dizzy".
Her other personal habits are just as annoying & gross. She makes herself coffee, pours milk into it, drinks a sip, then leaves the almost full cup on the counter. A few hours later she microwaves it, drinks another sip, leaves it on the counter. Eventually, after a day or so, she has finished the cup. She pours new coffee into the filthy cup and starts the cycle again. I want to gag when I see her doing it. If my mother dumps out the putrid coffee and washes the cup my grandma gets angry. She's got all these rules which she invented. The other day I was over there mid-afternoon, downstairs with my mom playing video games. My grandma said she wanted bread and cereal (the pantry is in the basement)--no hurry. An hour later she's at the top of the stairs yelling she needs her cereal and bread NOW! Why? So she can lay out her breakfast for the next day...at 4 p.m. the day before. I don't get that at all. My dad did it too, only he didn't lay his out until around 9 p.m. which isn't bad. But it's not like it takes forever to get out a spoon, bowl and box of cereal in the morning, esp. if you are retired and have no pressing engagements.
I went for a long walk yesterday with a friend whose mom is in a nursing home and getting dementia and we talked a lot about how hard it is to deal with loved ones who no longer have any logic to how they do things. My friend paid her mom's rent for 18 months because her mother insisted she was going to come home--even though the doctor said it wasn't happening. She took in her mother's pets and visits her mom daily, only to be showered with invectives for never visiting and not caring. Now her mother is demanding an expensive funeral spread over 2 states (she is no where near dying, just making her own plans). The mother has no money or life insurance policy to pay for a such a thing, and her daughter is already in debt from paying her mother's bills and partially paying for the nursing home for 2 years--and the nursing home is coming after her for MORE money, even though there is none.
These are the real stories of dementia--add in my friend whose grandpa has dementia and MRSA and there are 3 of us just in my very small social circle--we are approximately 30, 40 & 50 years old.
The government so far hasn't helped regular middle-class people like my friend and me (both of us unemployed). But they give AIG billions of dollars and AIG pays out hundreds of millions in bonuses to the people who ran their business into the ground.
I'm so bitter.

Friday, March 06, 2009

Sad news for a friend

My friend's grandpa, who lives out of state, was diagnosed with Alzheimer's a few months ago. He is also diabetic and now has MRSA in some of his diabetes sores. It's gone systemic, like it did with my dad, and this week they put him in hospice.
All I could tell her was how sorry I am. She is probably not going to be able to see him again before he dies. I'm not sure if that's good or bad...he's unconscious and wouldn't know either way.
Sad day.


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Prescription brain-food to treat Alzheimer's

Got an interesting press release a few days ago. "Axona is a first-in-class medical food for the clinical dietary management of the metabolic processes associated with mild-to-moderate Alzheimer’s. Dispensed by prescription, it targets the metabolic deficiencies and imbalances associated with AD by providing an alternative energy source for brain cells."
Prescription brain food? Interesting.
"Axona addresses a metabolic abnormality of Alzheimer's disease that has not previously been examined. The goal of therapy is to optimize cognitive function. Axona is safe and can be used with other common therapies for Alzheimer’s."
I've read a lot about Alzheimer's and this is the first I've heard of a metabolic component.
"Alzheimer’s disease is a progressive and fatal neurological disease characterized by a substantial decrease in the brain’s ability to metabolize glucose, which is the brain’s primary source of energy. Known as hypometabolism, this defect may contribute to both the clinical and pathological course of the disease. Axona targets the metabolic defects of glucose utilization in the brain by providing an alternative energy source. Axona is digested and metabolized by the liver to form ketone bodies, naturally occurring compounds produced by the body at low levels. These ketone bodies act as a secondary energy source for the brain to help maintain and improve cognitive function."
Hmm  Are these the same ketones produced by a low-carb diet? I've been on Atkins and used the ketone strips to see if I was in the correct zone for weight loss. Is weight loss is a side effect with this food?  I wonder if people who are on low-carb diets in the long term (I have a friend who has been low carb for over 10 years) have a lesser chance of getting Alzheimers?   Is there any relation to diabetes? 
I guess I asked more questions than I answered here.  If my dad was still alive I'd be on the phone to his doctor finding out more information on this, that's for sure.
The company producing this interesting new treatment is Accera.

number one!

I have no idea how this happened, but this blog is NUMBER ONE on Google if you search for "Alzheimer's Blog".  That is amazing.  People pay money to get results on the first page.
number one in google

Wednesday, February 18, 2009

Alzheimer's disease passed down to children

According to a new study, Alzheimer's disease may be passed from parents to children in some people scientists said after finding carriers of a faulty gene are two to three times more likely to have memory problems. Researchers found people who had the faulty gene and whose parents had either dementia or Alzheimer’s disease were more likely to have problems with memory even though their average age was only 59. The effect was the equivalent of having a brain that was 15 years older, the researchers said. 
I find this extremely interesting, not just because my dad had AD (and I'm terrified of getting it), but because of how young he was when he was diagnosed.  His father died very young so I have no idea if he would have gotten AD, and his mother had all sorts of mental problems, dying when she was in her early 60's (I think; I never met her even though she lived only 1 town over my whole life).   My dad's diagnosis came when he was 62 and in hindsight he had symptoms in his late 50's if not earlier.
The findings showed that people whose parents suffered from the condition were significantly more likely to do badly on visual and verbal memory tests than those with healthy parents but only if they carried the faulty gene, called ApoE4. ...It is thought around one in seven people carry the ApoE4 gene and this causes their bodies to produce a lipoprotein, which is a combination of fat and protein, which sticks on to parts of brain cells. Once that lipoprotein is stuck on the cell it allows other chemicals to stick on and the whole lot can be absorbed by the brain cell where a process begins that can cause damage in the long-term.
There's a test for it, but having the gene doesn't guarantee that you'll get AD, and not having the gene doesn't guarantee you won't. So I guess that right now it's interesting information, but not particularly useful.
(screenprint of original)

Monday, January 19, 2009

anti-Alzheimer's helmet?

No one can say Terry Pratchett isn't trying everything to combat his diagnosis of Alzheimer's.  He's testing out a new, experimental helmet that is supposed to halt or slow the progression of the disease.
Science fiction writer Sir Terry, 60, who was diagnosed with early-onset Alzheimer’s in 2007, wore the strange-looking headgear once a day for three months and noticed a small improvement, his agent confirmed.
The prototype anti-dementia helmet, which must be worn for ten minutes each day, was designed by British GP Dr Gordon Dougal. It works by directing intense bursts of infrared light into the brain to stimulate the growth of brain cells. Low-level infrared is thought to encourage cell growth in tissue and encourages it to repair.
I want it to work so badly...
(photo source=article source; screenprint)

Tuesday, January 06, 2009

new GPS watch debuts at Consumer Electronic Show

A new product, aimed at children, will debut at the Consumer Electronics show in Vegas. This watch will track its location with 10 feet via a GPS chip. The device is called Nu.M8 and I really don't understand why they aren't making an adult-sized version for adults that are impaired (not just AD and dementia, but mentally challenged in other ways).
Right now, it appears that the device only works in the UK, although it is debuting in the USA this week. It seems to require some sort of access fee if you use the service, and it is accessed through the web or a cell phone.
I have written to the company asking them to come out with an adult version. Please, even if your parent or loved one has moved onto the Elsewhere Bar like my dad has, and you think this device could help someone else's loved one, take a moment.
(original URL; screenprint on Flickr)