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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September 1, 2002                                                                                 Vol. 5 No. 16
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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 want to invite you to tune in to a radio interview that I will be featured on Saturday, September 7 with Jacqueline Marcell, the host of “Coping with Caregiving,” the only radio program for caregivers. Our topic of conversation will be “The Importance of Support for Caregivers.” Many of you know me in our chat room and message board, but haven’t heard my voice. I’m a bit nervous because I am more of a writer than a public speaker, but I am sure that Jacqueline will make me feel at ease.

Jacqueline is the author of “Elder Rage, or Take My Father... Please! How To Survive Caring For Aging Parents.” She is dedicated to generating awareness of caregiving issues and raising the importance of adult day care services. My segment will be broadcast on Saturday, September 7 at 4:40PM Pacific Time (that’s 7:40PM Eastern, 6:40PM Central, and 5:40PM Mountain). Just turn your “Internet Dial” to http://12.162.161.64/cart/ProductDetail.asp?PR_ProductID=317 at 4:40PM Pacific Time (that’s 7:40PM Eastern Time, and 6:40 Central Time). This page also includes a link to all former radio interviews, so I am sure that you will find many hours of listening.

I am also happy to unveil our new “Healthy Aging Channel” with articles on fitness, nutrition, quality of life, and senior lifestyles. We intend these articles to help both you and your loved one, but what we really have in mind is helping you (the caregiver) to maintain your wellbeing now and going forward. Regardless of your caregiving status, fitness and health should not be a second thought.

In the coming months we will be adding new articles, features, book reviews, and resources to make our Healthy Aging Channel a solid reference for all of your needs. I plan to feature one article every month (in addition to our regular caregiving features) because I think that actively watching our health is so important.

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

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INSIDE THIS ISSUE

Feature Article: Maintaining Balance With Age by Rich O’Boyle
Caregiver Store: Prism Personal Organizer and Medical Manager Special Edition
Our Sponsor: Study of New Device-Based Treatment for Alzheimer’s Disease
Free Offer: MedicAlert Membership for Newsletter Subscribers Only
Website Improvement Survey: Your Feedback Is Needed
ElderCare Forum: Recent Changes and Updates
Chat Schedule: Updates for September
Subscription Information

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FEATURE ARTICLE: Maintaining Balance With Age by Rich O’Boyle

Note: This article is the first on many new features on the subject of “Healthy Aging.” Many of the articles will be applicable to caring for your loved one as well as yourself, so I hope that you find them doubly useful. Our Longevity & Wellness Channel has been renamed the “Healthy Aging Channel.”

Some people seem to have it and some people don’t. It’s that sense of coordination of body movement – what makes someone a graceful dancer or dynamic athlete and someone else a complete klutz. Good balance and coordination may seem to be bonuses in life, but the fact is, as we age good balance can be a life-saver.

Good balance is dependent on many different factors, some of them biological, and some of the capable of improvement. Balance is associated with sensory input from the eyes, the correct functioning of the balance system of the inner ear, and the sense of position and movement in the feet, legs, and arms, according to Charlotte L. Shupert, Ph.D. at the Vestibular Disorders Association.

Poor balance can be the side effect of certain medications, medical complications, or serious disorders. For example, dizziness, which can cause difficulty in balancing, can be a result of disease in the vestibular (inner ear balance) system. It can also be due to the side effects of drugs or interactions between different drugs, problems with inadequate or poorly balanced diet, trouble with blood pressure (high or low), or even hyperventilation associated with anxiety.

Read the complete article, along with tips and exercises to improve balance at http://www.ec-online.net/Knowledge/Articles/balance.html

Be sure to visit our new and improved “Healthy Aging Channel” at http://www.ec-online.net/longwellchannel.htm for more articles on health, fitness, exercise, nutrition, lifestyles, and emotional wellbeing for people 50+.

CAREGIVER STORE: Prism Personal Organizer and Medical Manager Special Edition

In the last few weeks I have received a handful of very pointed questions about how to best keep track of a loved one’s medical condition, as well as how to insulate oneself from accusations of abuse. Our two workbooks, the Prism Personal Organizer and the Prism Medical Manager are designed to take some of the load off of your back when it comes to record-keeping and the day-to-day management of medical affairs.

Both workbooks offer practical worksheets to collect information that is useful when filling out forms for your loved one, applications for government benefits, hospital records, and the detailed information that your doctor wants you to follow. The Medical Manager also helps you keep track of your loved one’s condition so that you have a record of questions you want to ask the doctor, changes that have occurred over time in your loved one, and issues that need to be raised.

Normally we sell the two workbooks separately, but we have combined them into a Special Edition – what normally would cost you almost $24 is available for $15.95 for a limited time this month. The Special Edition includes the two workbooks, as well as access to a password-protected section of the website that includes new downloadable worksheets.

To place your order in our secure online store, visit us at http://www.ec-online.net/Store/workbooks.htm

OUR SPONSOR: Study of New Device-Based Treatment for Alzheimer’s Disease

An institute near you is investigating a device based treatment for Alzheimer’s Disease.

Alzheimer’s Disease is the primary cause of senile dementia, affecting more than 4.5 million US citizens.  Advancing age is the key risk factor for Alzheimer’s Disease. Unprecedented growth in the aging population will increase the number of individuals afflicted with the disease for which there is no known disease-modifying agent or cure.  Once the disease develops, the remaining life span of an Alzheimer’s sufferer is generally reduced by a third.  Progressive memory loss and changes in personality occur early on. As the disease progresses, the patient becomes immobile and dysfunctional, requiring increasing levels of care. Several drugs, such as Aricept, Reminyl and Exelon, are currently marketed for the treatment of AD symptoms.  About one out of three patients respond and can tolerate the side effects of these treatments. In such patients, these drugs can provide symptomatic benefit, but generally only for 6 to 9 months.

Many avenues are being explored to find new treatments for this debilitating disease.  One approach, being pioneered by the biotechnology company Eunoe, Inc, looks at helping the body restore its own healing properties. The nervous system normally produces cerebrospinal fluid (CSF) that bathes the brain, clears products of brain cell metabolism and provides the optimal environment for brain cell function. In normal aging, CSF production declines.  In Alzheimer’s Disease patients, changes of normal aging may be worsened by amyloid deposition in the cells that produce and clear CSF, leading to marked CSF stagnation. The hypothesis is that impaired clearance and/or diminished production of CSF leads to stagnation of CSF, resulting in accumulation of toxic proteins and inflammatory mediators in the brain. Such accumulated substances play a key role in ongoing brain injury in Alzheimer’s Disease.

The COGNIShunt̉ System, a flow-controlled shunt being developed by Eunoe, Inc., was designed to increase flow of CSF and improve clearance of potential neurotoxins from the fluid bathing the brain without causing overdrainage of CSF.  The placement of this shunt provides a new way for CSF to flow out of the brain’s fluid-filled cavities (ventricles) and into the abdomen, where blood vessels absorb the fluid.  Since the brain continuously generates fresh, toxin-free CSF, the placement of this drainage system should decrease the level of toxins in the fluid bathing the brain, while allowing increased circulation of fresh, toxin-free, CSF. Decreasing the toxins that may damage nerve cells in the brain may slow or stop the mental decline associated with Alzheimer’s Disease.

Although this is a novel, investigative approach to treating Alzheimer’s disease, the surgical procedure called shunting is a common procedure, having been used successfully by neurosurgeons since the 1950’s to treat other conditions such as hydrocephalus (excess fluid around the brain). Every year, approximately 100,000 shunts are placed or revised in hydrocephalus patients.

Data from a Eunoe, Inc. pilot feasibility study in 29 patients with mild to moderate Alzheimer’s Disease, conducted under an FDA-granted Investigational Device Exemption, indicate that the procedure and COGNIShunt System are well tolerated in Alzheimer’s patients.  The data from this feasibility study also show a substantial difference in mental function over time, with better preservation of mental ability in shunted patients versus the control group.   In addition, CSF levels of the potentially neurotoxic proteins found in Alzheimer’s brain lesions, such as Tau and Amyloid, declined in shunted patients and remained lower than their initial levels, even after twelve months.

Based on the encouraging results of the feasibility study, Eunoe, Inc. initiated a pivotal clinical trial that involves 25 sites throughout the U.S.  Those eligible to participate in the study must:

  • Have been diagnosed as having Alzheimer’ Disease
  • Be between 62 and 85 years old
  • Be a suitable candidate for surgical shunt implantation
  • Be able to read, speak, and understand English
  • Have a caregiver available to assist the subject in study participation and to participate in some evaluations (questionnaires)
  • Otherwise be in good health

Patients with onset of Alzheimer’s Disease before age 60, family history of early onset of Alzheimer’s Disease, or those in poor medical health are not eligible to enroll.  Patients with Normal Pressure Hydrocephalus (NPH) or those with other causes of dementia are not eligible to participate in the study.

As with any surgery or procedure requiring general anesthesia, there are risks involved.  In this procedure, the risks are believed to be the same as those for other surgical shunt placements.  For example, risks may include shunt infection, malfunction or failure, as well as risks associated with general anesthesia.

This procedure is not for all Alzheimer’s patients as it is still investigational.  However, Alzheimer’s patients and their families, caregivers, and treating physicians may participate in clinical studies that evaluate new, investigational therapies by making informed decisions based on their individual situation.  Additional information about the study can be found on the Eunoe, Inc. website (www.eunoe-inc.com).  Interested parties may also call 1.888.4MY.MIND (1.888.469.6463)
(Participants will be reimbursed for reasonable travel expenses)

Current research centers:

  • Pittsburgh, PA
  • Providence, RI
  • Portland, OR
  • Louisville, KY
  • Springfield, MA
  • Brooklyn, NY
  • Tucson AZ
  • San Antonio, TX
  • La Jolla, CA
  • Scottsdale, AZ
  • Tampa, FL
  • Atlanta, GA
  • Ft. Myers, FL
  • Indianapolis, IN
  • St. Louis, MO
  • San Francisco, CA

Call 1-888-4MY-MIND or 1-888-469-6463 or log on to http://www.eunoe-inc.com to find out about participation.

FREE OFFER: MedicAlert Membership for Newsletter Subscribers Only

Recently I was contacted by the MedicAlert Foundation, a non-profit organization dedicated to helping people with chronic illnesses by providing identification and information at the time of an emergency. Many of us are familiar with the MedicAlert bracelets worn by so many individuals.

MedicAlert has generously offered to provide up to 500 of our members with FREE year-long memberships with the goal of reuniting your loved one with Alzheimer's Disease or dementia in the event that they wander or become lost. 

MedicAlert 24-Hour Service Helps Reunite Alzheimer’s Patients with Family Caregivers

Suzann Moore felt the impact of the MedicAlert® service when MedicAlert® was able to successfully link her father back home when he wandered recently.

"You will never know how grateful I am to MedicAlert® for locating my father who has Alzheimer’s Disease. Within minutes we received a call. Thank you for reuniting us."

Everyday, the MedicAlert® 24-Hour Emergency Response Service helps protect members with Alzheimer’s and related disorders, especially when they wander or become lost, by identifying them and instantly relaying vital medical information to law enforcement and other emergency personnel. MedicAlert® then calls their emergency contacts, so the Member is quickly reunited with family or caregivers.

MedicAlert Foundation is offering free first-year memberships (a $35 value) to family members of ALZwell.com subscribers, now through September 15, 2002, for the first 500 people who call and enroll. These free memberships will go quickly. Call toll-free 800-432-5378 now and mention special offer #8802.

As a 501 (c)(3) nonprofit organization, MedicAlert Foundation receives donations from generous individuals throughout the year. That generosity is allowing MedicAlert® to extend these memberships to a limited number of individuals with Alzheimer’s who can benefit from the service.

Take advantage of this special offer and feel the peace of mind that Suzann Moore and thousands of other families do, knowing that their loved ones are protected by MedicAlert!  Staff is available 24 hours a day, 7 days a week to serve you.

This free membership is a $35 value! Annual renewals are only $20. Offer expires 9/15/02.

MedicAlert®, founded in 1956, is the leading provider of emergency medical information and identification services, with over 2.3 million members in the U.S. and 4 million worldwide.

24-Hour Emergency Response Center

In a medical emergency, if you are unable to speak or clearly express yourself, MedicAlert®  will speak for you.

Effectiveness of Service

MedicAlert® is the name emergency responders trust, the one they look for first, when seconds count. Over 45 years of experience stand behind everything we do.

Nonprofit Status

With MedicAlert®, you're more than just a customer, you're a member, so you can enjoy comprehensive service at affordable prices.

Privacy

The MedicAlert® Service puts you in control, with encrypted online access to your file via our web site. Your vital medical information is instantly available when it's needed, securely protected when it's not.

Call toll-free 800-432-5378 now and mention special offer #8802.

WEBSITE IMPROVEMENT SURVEY: Your Feedback Is Needed

Each year I take the pulse of our membership through a short survey. The message board and chatroom serve as dynamic areas for me to get ideas and insights about ways to make the websites more focused on your needs. I think the main reason that ElderCare Online and ALZwell are so popular and well-regarded is that we have such an open and honest relationship with all of our members.

I have composed a short Q&A survey that I need your assistance with. Basically I am trying to compile a handful of basic statistics on who our users are – things like “who are you caring for?,” “what diseases are you concerned about?,” “where does your loved one reside?,” etc. These types of questions may sound nosy, but they will give a lot of insight into the types of articles that we write over the next year, the perspective of these articles (adult caring for parent, caring for spouse, in-home, long distance, etc.). I am also exploring writing some more articles about diseases other than Alzheimer’s Disease, so your input is essential.

Whenever we collect survey information, we keep it completely private. If a company asks us about advertising on the websites, we use the information to tell them what percent of people answered certain questions (74% of caregivers are female, or 23% are caring for a parent, etc.). We only save your e-mail address if you ask that you be added to the newsletter mailing list (which shouldn’t be an issue for you since you are already on the list).

We know your time is valuable! So, as a special “Thank You” for taking the time to answer the survey, we will send ten respondents a copy of a useful caregiving book of their choice. I have a list of available titles and will share it with the winners. An Additional 25 respondents will receive access to the online tutorial version of the Learning Resource Guide of their choice.

To begin taking the survey, please click here http://www.zoomerang.com/survey.zgi?PB7ABEXQNAWXS2DAHPMFY506

… or access it directly from the front page of the website at http://www.ec-online.net

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).

I want to extend a warm welcome to all of our current members. Just this month we passed a landmark 1,600 registered members. About half of you access the Forum regularly each week. The number of active posters is a bit smaller than that, but what this shows is that there are hundreds of people browsing and “lurking” through the posts… gathering information and ideas.

You don’t have to dive in fully and bare your soul to be a “good citizen.” Just talking the time to read the posts and open your heart and mind is often all the support that some of us need. If you want to join in the conversations, you can jump right in.

We have done a little bit of housekeeping in the Forum based on constructive suggestions from a group of members. We have created a new “Spousal Caregiver’s Meeting Room” for all caregivers who are caring for their significant other. We have also clarified the position of the Early Onset Alzheimer’s Disease room. That room is primarily for people who are caring for a loved one (also usually a spouse) with the rare form of Alzheimer’s Disease that strikes in one’s 40’s and 50’s.

Interestingly, we have seen an uptick in participation by caregivers concerned with less common dementias, such as Lewy Body Disease, Stroke care, and Parkinson’s Disease. We are working to define areas for these caregivers as well. I hope that you will participate in our survey and provide continued feedback.

If you have lost your password and have been unable to get it from the automated software, just send me a direct e-mail to rich@ec-online.net and I will send it out to you immediately.

CHAT SCHEDULE: Updates for September

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.

September 4 (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."

September 4 (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.”

September 4 (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.”

September 5 (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.”

September 9 (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.”

September 10 (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.

September 11 (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."

September 11 (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.”

September 11 (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.”

September 12 (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.”

September 16 (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.”

September 18 (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."

September 18 (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.”

September 18 (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.”

September 19 (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.”

September 23 (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.”

September 24 (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.

September 25 (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."

September 25 (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.”

September 25 (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.”

September 26 (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.”

September 30 (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.”

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

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