AlzHub

Kind Words For James Doohan

Thanks to actor / writer Wil Wheaton (Wesley Crusher from Star Trek: The Next Generation) for posting the moving words he delivered last night in honor of James Doohan (Montgomery Scott (Scotty) from the original Star Trek series).

Mr. Doohan’s diagnosis of Alzheimer’s was disclosed earlier this year and he is retiring from public appearances. Last night’s banquet tribute was a chance for friends and fans to celebrate their friend and say thanks.

If you’re in the Los Angeles area this Tuesday (8/31/04), stop by for the ceremony as Mr. Doohan gets his star on the Hollywood Walk Of Fame. The ceremony is scheduled for 10:30 a.m. at 7021 Hollywood Blvd. in front of the Hollywood Entertainment Museum.

Links:

Hollywood Chamber Of Commerce – Walk Of Fame Events

New site added - Alzinfo.org

I’m adding a link in the left sidebar under “Alz Websites” to www.alzinfo.org. The site is part of the Fisher Center For Alzheimer’s Research Foundation.

This is a very good site for Alzheimer’s information that manages to cover many important and useful areas without feeling overwhelming. Everything is nicely organized so that the information you’re looking for is easy to find.

Some of the things available on the site:

-Latest news articles.
-Information on Alzheimer’s, resources, treatments, research and care options.
-Email newsletters, chat rooms and message boards for a more interactive experience.

I think you’ll like it. Give it a look.

Proposition 71 Update

*UPDATE*
Proposition 71 passed by a margin of 59% to 41%.
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Support in the form of donations is pouring in to support the Yes on Proposition 71 campaign in California.

More than $12 million has been raised so far with some large donations coming from backers such as Bill Gates ($400,000) and Pierre Omidyar, founder of eBay ($1 million).

Here’s an article from USA Today dated 8/26/04:

Gates, others lead California effort for stem cell research

If you would like to donate or help in some way, here’s a link to the “How You Can Help” section of the official Proposition 71 website.

Links:

The California Stem Cell Research And Cures Initiative - Proposition 71 Website.

Cost of Long Term Care Insurance

Just out of curiosity, I wanted to get an idea about how much a personal long term care insurance policy would cost. Here in southern California, the cost of living in a nursing home or Alzheimer's section of an assisted living home can easily run $50,000/year, or more. That's a lot, especially when the care isn't covered by insurance.

I only called one company, so this is not definitive by any means. I asked about a policy for someone in their mid-forties, that would pay $120/day (not uncommon, may even be low), provide for both residential care facility or home health care benefits, unlimited benefit period (benefit won't end after 5 years, they pay as long as necessary), and a 5% inflation option. Paid annually, the premium would come to almost $2,400.00/year. The younger you are, the lower the premium but the longer you pay. Conversely, the longer you wait, the higher the premiums. Once you're diagnosed, you can't get it at all.

If you're lucky enough to work for a company that makes a long term care insurance benefit option available, it can be much less expensive. Either way, this just shows that whether you plan ahead or not, Alzheimer's can be a financial hardship.

How many people will actually be able to handle the costs? When you consider that the number of people with Alzheimer's could more than triple by 2050, an effective treatment for Alzheimer's could be the only thing to prevent a complete meltdown of our health care system.

Alzheimer's Medications

Here's a helpful article and chart from the Alzheimer's Disease Education & Referral Center that provides some good information on the drugs currently used to treat Alzheimer's disease.

There are four drugs prescribed for mild to moderate Alzheimer's symptoms and one drug (Namenda® (memantine), the most recently approved by the FDA) that is prescribed for moderate to severe symptoms.

I've heard some success stories regarding Aricept and Namenda specifically, but it really is hit or miss. Some people are helped by the drugs while others don't seem to receive any benefit. I don't know anyone that has taken Reminyl, Exelon or Cognex.

While none of the drugs cure, stop or reverse the symptoms, they can slow down the progression of the disease. Here's a link to an Alzheimer's Association article on a study done on Aricept. The study shows that for people with mild cognitive impairment, the drug delayed progression to Alzheimer's for an average of six months.

This may not seem like much, but since the majority of people get Alzheimer's in their 70's or 80's, delaying the symptoms long enough can make the disease irrelevant. In addition, with the cost of care constantly increasing, delaying a move to a nursing home or assisted living home for 6 months can be significant.

Update May 8, 2005:

Reminyl Name Changed To Razadyne

What is Alzheimer's?

Here is a fact sheet from the Alzheimer's Association with a good general introduction to Alzheimer's.

Fact Sheet (in .pdf format)*

The fact sheet includes information on symptoms, progression, what happens to the brain and other causes of dementia.

Links:
Alzheimer's Association
Alzheimer's Association phone#: (800) 272-3900
*To download the free Adobe Reader (for .pdf files), see link in left hand sidebar under "Tools".

California's Proposition 71

*UPDATE*
Proposition 71 passed by a margin of 59% to 41%.
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California has put proposition 71: The California Stem Cell Research and Cures Initiative on the ballot for the November election. A yes vote on this proposition authorizes $3 billion in state tax-exempt bonds (incrementally over 10 years) to fund stem cell research at California's medical research facilities.

Due to the federal funding of stem cell research being limited to stem cell lines existing as of August 9, 2001, this is California’s attempt to fund the research into stem cells.

Voters are pretty evenly divided over this issue so far.

Here’s the Proposition 71 website.

Text Of Ron Reagan Jr.'s Stem Cell Speech

In case you missed it, here is a link to the text of the speech on stem cell research that Ron Reagan Jr. gave at the Democratic National Convention.

Text of Stem Cell speech.

-Thanks to The Associated Press and USA Today.

Memory Walk 2004

MEMORY WALK 2004

The annual fundraiser for the Alzheimer’s Association is coming up quickly.

Since 1989, Memory Walk has raised more than $149 million for programs and services for individuals with Alzheimer's, their families, and caregivers.

By joining Memory Walk you help...
• To show your support for Alzheimer families in your community.
• To protect future generations from this disease.
• To help achieve a world free of Alzheimer's disease.

Memory Walk 2004 events will be held all across the country.

Visit the Memory Walk 2004 website to find a walk near you, get more information, sign up to participate or donate to this important cause.

Welcome

There has been a lot of news and information lately about Alzheimer’s disease. The passing of Ronald Reagan, the expected dramatic increase in cases with the baby boomers getting older, new medications, new research and much more have brought a lot of attention to Alzheimer’s recently.

I have started this site as a way to pull much of this information together in one place. You will find links to organizations, news articles, latest research, events, support options, caregiver information, treatments, politics and much more with some personal commentary mixed in to humanize it.

This information is intended for everyone. There are so many people affected by Alzheimer’s. Not only the person with the disease but family members, friends and caregivers. Just as important are people who are not directly affected but are curious and want to learn more. Knowledge is so important. Alzheimer’s can strike anyone, but we are learning more all the time about ways to delay and minimize its impact. I hope this can be something like an online support center and help in at least some small way.

This is also for me. My mother has Alzheimer’s. I have been a caregiver 24/7, I have done research on the subject, I have made the tough decisions, and I have learned everyday. This is a way to put all that useful information together so it is easy to find. I hope you can benefit from that also.

A little disclaimer. I am not a doctor or a research scientist. I don’t work in the medical field at all. I am not a part of any pharmaceutical companies. I am not an expert. I am just a son. The opinions here are mine. When I talk about whether some medicine or technique worked or didn’t work, it does not mean it will be the same for you. I cannot stress enough the importance of getting quality medical care and advice from qualified professionals. Seek out all the information you can. I have met a lot of amazing people with this disease and the one consistency is that everyone is different.

If there are legitimate organizations, local events, links to news articles or anything that you think people will benefit from, please let me know. I can’t possibly discover everything on my own. No matter how we fight this disease, there is strength in numbers.

Welcome…