Please Remember Me

Early-Onset Alzheimer's Disease Patients on the Internet

by

Brenda S. Parris

In my five years on the Internet since my mother's death, I've met not only many wonderful family caregivers and health care professionals who are seeking to educate and offer support online, but I've also met early-onset Alzheimer's patients who are telling their stories as well. These people are in their forties and fifties, and they are some of the most inspiring people I've ever met.

The first one I met was Diana Friel McGowin whose Web page is at http://hometown.aol.com/LILAUTHOR1/index.html. Diana is the author of the best-selling book, Living in the Labyrinth, which has been published in eleven languages. The CBS film, Forget Me Never, starring Mia Farrow and Martin Sheen, released 1999, was based on Diana's life. She has been featured in People Magazine, Ladies Home Journal, and numerous national and international television and radio interviews as well as periodicals and newspapers in the U.S. and abroad. She spearheaded the first in-person Early Onset patient support group under sponsorship of her local Alzheimer Association chapter, and she was a pioneer online as LILAUTHOR1, leading an AOL chat group for those with early-onset AD. Diana is the inspiration for many who have followed, sharing their stories and offering information and support.

I met Tim Brennan soon after meeting Diana, and he allowed me to post several of his poems in the contributed poetry section at my Web site. Now Tim has a site of his own at http://www.nhisgarden.com/his_eyes/entrance.html. Tim, age 57, formerly designed, installed and resolved problems with computers, information processing, telephone networks, and video conferencing, and worked for a major bank for 25 years. When he had a heart attack in 1992, and through medical examinations following that, it was discovered that he had some type of dementia, and then in 1993, he was diagnosed with Alzheimer's. Since his diagnosis, he has written a column for The St. Petersburg Times (Florida), and articles for Duke University, The University of California (San Diego), and some Alzheimer's Association chapters, as well as speaking, and with his wife, beginning a local support group for early stage Alzheimer's patients. Webmaster Nancy Walker of Caregiver's Haven, has designed a beautiful site, and Tim's articles offer practical suggestions about living positively as someone with Alzheimer's, and his beautiful poetry gives us all clearer insight into the life of an Alzheimer's patient.

Laura Smith, whose Web site is at http://www.ycsi.net/users/laura/ is another I met a couple of years ago. Her Web site tells about the natural beauty that surrounds her at her Montana home and shares stories, poetry, and links to other sites about Alzheimer's. Laura keeps a daily journal at her site, as well as sharing pictures of her family and the beauty in her surroundings. Laura is active began CWPML (Coping with Personal Memory Loss), a discussion list/support group for early-onset Alzheimer's patients.

Mary Lockhart, whose Web site can be found at http://www.angelfire.com/ok4/mari5113/index.html, Mary Lockhart has early-onset Alzheimer's. Before she was diagnosed, she had managed a licensed day care for infants for fifteen years. She misses the babies she cared for, but she has three little dogs which she enjoys, as well as having an acquarium, and feeding birds and squirrels. She is doing a wonderful job telling her story on her home page, Mary's Place, where she shares her daily journal, family photos, memories from her childhood, links to other sites, and a chats for other patients like herself. Mary says "This is a very lonely disease. If I can help one person with my page it will all be worth it." Through the Internet, Mary has found friends, and she is indeed helping others, being very active in several chats. It is a joy to watch Mary's page develop, as she adds new and very creative pages, incorporating beautiful backgrounds, graphics, and java. As one entry in her guestbook says, Mary has a way of turning lemons into lemonade-- a wonderful way to deal with the Alzheimer's journey, as well as caregiving and any losses that life brings us.

Chip Gerber, whose Web site is at http://www.zarcrom.com/users/alzheimers/chip.html, is 55, and he was diagnosed with Alzheimer's in 1997. He worked for over 25 years as a licensed social worker. His daily journal is online, accented by the always beautiful designs of Webmaster Marsha Penington of Alzheimer's Outreach. Chip's journal is unique in that it is not just an account of what he does every day, but it is a collection of his thoughts, feelings, and reflections on his journey with Alzheimer's. He expresses his appreciation of and delight in ordinary things, including his senses of smell, sight, and touch as he cherishes nature and the changing seasons. Chip gives us a beautiful way to look at life, in spite of our losses, as Alzheimer's patients, caregivers, or anyone-- as each of us eventually will suffer some losses in life. Beautifully written, Chip's "My Journey" is a wonderful site to visit in this holiday season, helping us realize and count our blessings and to be thankful for all we have.

These are just a few of the many Web sites where early-onset Alzheimer's (EOAD) patients are sharing their stories. These courageous people, and many others, some of whom I'll cover in future articles, are an inspiration to all of us.

Copyright 2001-2004 Brenda S. Parris
Published originally at Themestream.com.

Background and graphics Copyright © 2001 Brenda S. Parris


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