The Caregiver's Beacon Newsletter

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The Caregiver’s Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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August 1, 2002                                                                                 Vol. 5 No. 14
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ALZwell Caregiver Support and ElderCare Online
http://www.alzwell.com and http://www.ec-online.net
Serving the Needs of Caregivers Since 1996
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Dear Friends,

I must apologize for the downtime that our Forum experienced over the past week. In the future, I will be "pruning" and archiving discussion threads more aggressively. That means that some of the older conversations may be deleted. Don't take this personally! It is in the interest of making the Forum run properly. Some discussion threads may be copied and saved to become parts of future articles or newsletter commentary. This way we can maximize the number of people who benefit from the ideas shared in our Forum.

In future issues of this newsletter we will include more text messages from our sponsors. This doesn’t mean that we have “sold out.” The hard fact is that it costs money and time to keep these resources going strong. I have decided to limit the types of advertising that we accept: We will not permit banner ads on our websites, nor will we rent out our mailing list. Any communication from paying advertisers will be approved and edited before being placed unobtrusively into the newsletter. Of course you have the option to just scroll past the ad, but I ask that you read it since it may be appropriate to your situation. These ads really don’t pay much, but they are a way for us to gain at least a small amount of funds to pay for website hosting, forum moderators, and articles.

We have always managed our websites with compassion and integrity. As we look for ways to sustain our mission, we will continue with those ideals in mind. Our relationship with you is built on Trust: A belief that we are sincere in our mission, and genuinely concerned with your interests. I think that our actions over the past four years confirm this.

Kind Regards,
Rich O’Boyle, Publisher
ALZwell Caregiver Support
ElderCare Online
Prism Caregiver Education Series

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INSIDE THIS ISSUE

Feature Article: “Tips on… Successful Parentcaring” by Edyth Ann Knox
Caregiver Store: “Show Them That We Care” Video and Handbook
“My Parents, Myself:” A Monthly Column from Phyllis Kramer Hirschkop
Newsletter Briefs: Attention Eldercare Professionals
Our Sponsor: Link to Life: Personal Response Service
Top Alzheimers/Caregiving Websites: Human Values in Aging
ElderCare Forum: Latest Postings
Chat Schedule: Updates for August
Subscription Information

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FEATURE ARTICLE: “Tips on… Successful Parentcaring” by Edyth Ann Knox

Now I can hear each and every one of you say "What the heck is Parentcaring?" Let me explain: When our parents gave birth to us and raised us they exercised "Good Parenting" in the best ways they knew based on their upbringing and their situations as adults. When we grew up and married, we too (or at least many of us) had children and also became concerned with "Good Parenting."

The parental role they played changed over time. When we got older, we no longer had to call our parents to tell them we would be getting home late. We did not have to ask permission to change jobs, to become parents, or for any of the other minor or major decisions in our lives. Yet they remained our parents and we still made efforts to honor their wishes. We rewarded them with the role of "Grandparenting.”

For many of us, our parents have aged and are now in need of our assistance. Many have made the comment that "We now become our parent’s parent." Yet this statement is not really accurate. We are still the children and they are still the parents – our roles have not changed but the function within our roles has changed. As “Baby Boomers” and the “Sandwich Generation” we are increasingly assuming new “parentcaring” functions.

Read the complete article with insights on how to manage transitions within the child-parent roles at http://www.ec-online.net/Knowledge/Articles/parentcaringtips.html

CAREGIVER STORE: “Show Them That We Care” Video and Handbook

Very few of us plan to place a loved one in a nursing home... It all happens so suddenly. An injury, an illness, a stroke, or just old age convinces their doctor, and you, that a nursing home is the best place for them. Now you find yourself in a totally new situation...one you have probably never imagined: visiting a nursing home on a regular basis.

The purpose of the video and handbook is to show and explain how to make visits to any nursing home more enjoyable for both you and the one you are visiting.

Topics Covered:

  • Classifications of residents
  • Cautions to be taken
  • Comfort for the resident
  • Companionship
  • Conveniences
  • Cleanliness
  • Courtesy
  • Communication
  • Common sense

Ron and Susan Stauffer are the owners of Stauffer Video Services, Inc., and are both caregivers. Susan has been a caregiver to her Downs Syndrome daughter for over 30 years and works part time for the Franklin County Program for the Mentally Retarded. Ron is a caregiver to their daughter and has also spent 5 years caring for his parents who were residents in a nursing home.

The video is 26 minutes long, and the handbook is 40 pages long. It is available from ElderCare Online for $24.95 + $4.00 S&H in our online store at http://www.ec-online.net/Store/media.htm. All purchases of the video/handbook product include free access to our online tutorial “Choosing a Nursing Home.”

MY PARENTS, MYSELF: A Monthly Column by Phyllis Kramer Hirschkop

Dear Phyllis:

My mother is 75 years old and has lived alone since my dad died 7 years ago. She is alert mentally but has a number of physical problems about which she constantly complains to her children. My problem is I can’t get her to go to the doctor although she continues to drive my sisters and me crazy.

How do I get her to go to the doctor?

Kaye

Dear Kaye:

Many families experience the same frustration in trying to get a reluctant parent to the doctor so you need to first decide how urgent the problem is. Does it appear to be something life threatening, in which case you need to act promptly, or are your mother’s complaints those of someone growing old?   It it’s the latter, there isn’t any immediate need to act.

Next you want to determine what’s behind her refusal to see a doctor.  Has she had a bad experience with doctors? Does her reluctance to seek medical advice stem from her fear of learning that something serious may be wrong? If she’s generally someone who has trusted doctors and, as far as you know, hasn’t felt restrained in talking about her complaints with them, then I would guess that she’s probably frightened that there might be something seriously wrong with her health. If one of her parents or siblings died of a disease such as cancer or Alzheimer’s Disease, this may heighten her anxiety about seeing a doctor.

I’m sure her behavior seems irrational to you. After all, wouldn’t it make more sense to deal with a problem than to let it go unattended? Well, unfortunately, fear and anxiety tend to overtake logic, and many people stick their heads in the sand or procrastinate or find creative ways of avoiding facing the problem. Such avoidance techniques may be intensified in old age.

You should also consider your level of concern. Are you getting upset because you think there’s a serious problem or because your mother is driving you crazy and you’d love to involve an expert to help find a solution?

I agree that consulting a doctor to find out if there might be a serious illness would ultimately assuage your mother’s and your anxiety. However, you need to remember that your mother is of sound mind and that she has the right to be the final arbiter of what she will and won’t do. Therefore you need to direct your efforts to her underlying fears.

A conversation might go something like this: “Mom, I know there must be good reason for you to refuse to see a doctor. I was thinking that it must be scary to experience physical changes that make it hard to do the things you’ve always done. It’s as if your body has betrayed you and you’re angry and punishing it for its betrayal. In addition, I know that grandma and one of her sisters died of cancer, which must add to your worries about your own health. But I want you to know that my sisters and I worry about you and want to do everything in our power to keep you healthy. The problem is that we don’t know what to do to help you unless you see a doctor. So I hope that you’ll reconsider your decision. I’d be very happy to go with you to the doctor if that would make it easier for you.”

If your mother agrees to reconsider her decision, you’ve made a lot of progress. The chances are that if you give her some time to express her feelings, she’ll eventually agree to see a doctor.

Try also to give her some options. Explain that if she doesn’t want to see her regular doctor, there are geriatric physicians, geriatric care centers, and nurses who’ll come to her home. Be sure to talk with your family and your mother’s friends, some of whom could assist you in encouraging your mother to have a physical examination. Talk with her current physician, who may have experience in getting reluctant older patients to come in for a visit.

Remember that your mother has the right to decide how she wants to live out the remaining years of her life and, although you don’t make the decisions for her, you have a lot of influence as her loving daughter.

Regards,
Phyllis
http://www.our-aging-parents.com
hirschkop@erols.com

NEWSLETTER BRIEFS: Attention Eldercare Professionals (GCMs, Lawyers, and Social Workers)

I encourage all of you to sign up for some of our newsletter briefs. We will be launching them later this year. Each will be short and sweet. I plan to experiment with HTML so you can expect some attractive graphics and layout (unlike this newsletter). All you need to do is click on the special link at the very bottom of this newsletter, personalize your profile, and select the appropriate newsletter briefs.

If you received this newsletter from a friend, are reading the digest on another website, or are visiting the copy posted to the ElderCare Online/ALZwell website, then you will need to actually subscribe to the Caregiver’s Beacon. Go to our sign up page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm and add your e-mail address.

Our “News Briefs” will be short one or two page long e-mails that focus on specific topics of interest, including an article, resource links, tips, and recommended readings. At first, we will launch five new Briefs on the following topics:

- Alzheimer’s Disease
- Caring for Aging Parents
- New Caregivers
- Professional Caregiver
- Former Caregiver

Of note is the News Brief for Professional Caregivers. This Brief is being developed with the special interests of geriatric care managers, facility-based professionals, elder lawyers, or non-profit organizations in mind. It will include relevant topics, book recommendations, and resource lists. I am an active member board member of the Greater New York Chapter of the National Association of Professional Geriatric Care Managers as well as the American Society on Aging. I regularly attend (and speak at) professional conferences so I will bring those insights to the Professional Caregiver News Brief. 

As I mentioned, each subscription is free and optional. To sign up, follow the link at the very bottom of this newsletter. BE CAREFUL: The link is customized just for your e-mail address. By following the link, you will have the option to UNSUBSCRIBE from this newsletter. DO NOT actually unsubscribe. Instead, follow the instructions for completing your member profile. You will be asked to provide some basic demographic information, as well as select the “Interest Groups” of your choice. Only provide as much information as you feel comfortable with.

We have the utmost respect for your privacy, and we pride ourselves on our integrity as a business. We do not rent our mailing list or otherwise provide it to outsiders. From time to time you may see paid advertisements in this newsletter and the News Briefs (just like newspaper advertising). We never reveal your name, e-mail address or personal information. For more information, see our Privacy Policy at http://www.ec-online.net/about/privacy.html.

Remember, use the ListBuilder link at the very bottom of this newsletter near the copyright 2002 information. And DO NOT unsubscribe (unless you REALLY want to).

OUR SPONSOR: Link to Life: Personal Response Service

“Link to Life has been very crucial in keeping my mother living independently in her home. Without your wonderful service, she would be in a nursing home.”

“My children are grateful for such a service. Because they work, they can’t always be here, but the button around my neck assures them I will receive help immediately if I need it. ”

For more than twenty years, Link to Life has been providing quality, caring Personal Response Services to thousands of satisfied Subscribers like these.

As a Link to Life Subscriber, those you love or provide care for will be able to get help at the touch of a button, even if they are unable to reach the phone. The lightweight, waterproof personal help button, worn on a necklace, wristband or belt clip, sends a signal to our base unit connected to an ordinary phone line in the home. Within seconds, a Response Center Operator is able to communicate with the Subscriber from wherever they are in their home, addressing the Subscriber’s needs with all the necessary information at their fingertips.

Most calls are resolved with the simple assurance of a Link to Life Operator’s warm, friendly voice. In more serious situations, we would immediately begin following the response steps outlined by you and the Subscriber prior to the installation of our service. You tell us what you want done in the event of an emergency, including who to contact to provide assistance, which hospital and doctor is preferred, and who to notify about the Subscriber’s situation and condition. We can also provide health insurance information, pre-existing medical conditions and prescription drug data to medical personnel - any information that can help.

While many equate Personal Response Services with loss of independence, just the opposite is true. Knowing that help is just a touch of a button away- 24 hours a day, 365 days a year- provides Link to Life Subscribers with the confidence and security they need to live alone in their own homes safely and with dignity.

Our services provide peace of mind to a Subscriber’s family and caregivers. Although you can’t always be with the Subscriber, you can be assured that Link to Life is. And you have the added comfort of knowing you will be contacted immediately and be kept up to date if something should happen.

In addition to providing peace of mind, Link to Life prevents serious medical complications. In an emergency, the amount of time someone has to wait for help affects outcomes. Studies show that, after a fall, receiving immediate medical attention reduces an elderly person’s likelihood of hospitalization by 26% and death by over 82%.

Link to Life’s Operators follow through on all calls until help arrives, ensuring the quickest possible intervention and the best possible outcome. Our services don’t stop there - ongoing and next day follow up, a SafeTravel Card to provide all necessary information if an accident happens away from home and many other benefits are all included.

For more information about Link to Life, or to order the service visit, our web site at http://www.link-to-life.com or call us at 1-800-338-4176.

TOP ALZHEIMERS/CAREGIVING WEBSITES: Human Values in Aging Newsletter

The Institute on Human Values and Aging is a program of the International Longevity Center-USA, under support from the Robert Wood Johnson Foundation. It is involved in research and public education related to issues raised by the coming of an aging society: in particular, applied ethics, late-life creativity, lifelong learning, and the search for meaning in the second half of life.

The Human Values in Aging UPDATE is a free monthly electronic newsletter containing news about humanistic gerontology, including topics such as lifelong learning, conscious aging, autobiography and life-review, and geriatric bioethics. It is published every three weeks under the sponsorship of the International Longevity Center and available at no charge, upon request by sending an e-mail to: hrmoody@yahoo.com

For an Archive of issues of the Newsletter from 2002, visit the ILC website at:
http://www.ilcusa.org/pub/news.htm

For additional Alzheimer’s and Caregiving websites, Brenda Parris Sibley has established one of the best clearinghouses on the Internet. She has contacted and worked with a variety of websites to collect them into a directory with rankings showing which are the most popular. Brenda and the other webmasters and webmistresses have done an excellent job of creating unique and compelling sites that speak directly to family caregivers. In each issue of this newsletter, we will mention one of the many sites that comprise the Top AD/Caregiving Sites List.

You can browse through other sites and vote for ElderCare Online by clicking on the "Top AD/Caregiving Sites" icon on the front page of ElderCare Online at http://www.ec-online.net (or following this complicated link: http://new.topsitelists.com/topsites.cgi?ID=1&user=bpsibley&area=bests.) You are welcome to use ElderCare Online as your portal to access these sites, since I know that you will want to visit again and again. I suggest that you access the list often as new sites are added regularly, and as you explore the list, you are bound to find one that didn't catch your attention last time.

ELDERCARE FORUM: Latest Postings

If you would like to register, please follow this link: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=agree. Please excuse any little error messages that you may receive. We are working to resolve a software glitch. I will manually send your registration information and password. Just fill out the information and wait. I will get it to you in less than a day (probably within 15 minutes).

(Note: Some of these links may not transfer correctly via e-mail. In that case, just go to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi or read this newsletter off of the website).

We Laugh to Survive: Jokes posted by our members. Be careful, some of these are really dumb or really racy… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=21

News and Research: Several new updates have been posted here by members and our moderators, including the latest information about the role of diet and vitamins in treating and preventing Alzheimer’s Disease at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26

Spousal Caregivers Meeting Room: A new room has been set up for August at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000086

Daily Challenges: “What Do We Know:” Member BJC (Brian) has begun a very insightful discussion thread about the lessons learned by caregivers. Please share your ideas with him at  http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000085

Daily Challenges: “Help With Prescription Drug Costs:” We have posted several links and suggestions on how caregivers can get a handle on drug costs. These approaches include finding programs in your area that you can sign up for (usually at no cost), as well as state programs for the needy. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000227

Less Common Dementias: We have an entire discussion board for those caregivers who find their loved ones have one of the rare forms of dementia, including Lewy Body Disease, Normal Pressure Hydrocephalus, or Pick’s Disease, among others. This is a great place to link up with those far-flung caregivers who share your particular concerns. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=34

New Caregiver’s Meeting Room: “Denial:” This is an interesting thread because it speaks to a common caregiver issue… denial by our loved ones that they are having trouble as they age… either with dementia or safety. I’m sure that many of you will be able to relate to Lee2’s personal story, and perhaps share your own at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000051

New Caregiver’s Meeting Room: “Beginning the Journey:” Please welcome new member NancyC as she begins her own caregiving journey. Her mother has been increasingly forgetful and it appears that she may have dementia. Connect with NancyC at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000049

I, Caregiver: “CGs Health and Survival:” Forum Moderator Edyth Ann has shared some personal reflections on the importance of caring for oneself. Please take the time to read her comments at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=19&t=000055.

Former Caregivers Meeting Room: For those of us who have moved forward from our caregiving responsibilities, or see light at the end of the tunnel, we have a special section of discussion threads at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=38.

We have literally hundreds of other discussions going on in the Forum. Please come by to browse and read. We cover so many of the issues that all caregivers encounter. Just reading the stories and comments can help you learn. If you have specific questions or feel that you need the support of others just like you, please sign up and join us. Visit the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi.

CHAT SCHEDULE: Updates for August

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm. All times are U.S. Eastern Standard Time (GMT –5). We have begun to provide chats that are hosted by caregivers in Australia. Australian times are GMT +10. Hopefully this will not cause a great deal of confusion and instead give us more opportunities to connect with each other.

Topics are suggested and NOT required. We always focus on the issues and that our members want to discuss. Please remember that we have a new chatroom. If you had trouble using the old one, please give it another try! Please note the new sessions added on Monday evenings, Wednesday mornings, and Saturday afternoons.

Our current chat schedule is posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm as well as at the end of this newsletter.

Most of the chat moderators will be on vacation at some point during the week of July 1 to 6 for the Independence Day holiday. The chatroom will be open, but we will not have facilitators on some days. Please check the schedule. You are welcome to continue to use the chatroom to meet and connect with your caregiving friends.

August 1 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 5 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 6 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS leads a discussion for family caregivers seeking understanding and resources.

August 7 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

August 7 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 7 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 8 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 12 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 14 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

August 14 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 14 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 15 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 19 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 20 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS leads a discussion for family caregivers seeking understanding and resources.

August 21 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

August 21 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 21 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 22 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 26 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 28 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

August 28 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 28 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

August 29 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm.

SUBSCRIPTION INFORMATION

The Caregiver’s Beacon is published bimonthly by ElderCare Online and ALZwell Caregiver Support. To subscribe to this free newsletter, visit the subscription information page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm.

You may also go to the main page of the website at http://www.ec-online.net or http://www.alzwell.com and add your e-mail address to the white box and click on the "Subscribe" button (just one click!)

To unsubscribe from this list, follow the customized link that is provided below by our ListBuilder software. You may also customize your profile and sign up for additional monthly News Briefs on special topics.

(c) 2002 Prism Innovations, Inc. All Rights Reserved.

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