It has been a strange time since we last visited with you all. Karen and I have had new matching computers semi-donated to us as co-editors of The Ribbon. We got matching ones because we found out that when she does the "copy..paste" to send the newsletter out to you, the fonts would get changed. We have had some time getting mine up and running...I've had to reformat it 3...yes 3 times. It is finally up and running correctly and I love it.
Karen has started a new, less stressful job. She was able to take some time off and go visit with her family up north while she was between jobs.
We were hoping to get off and running as true "matching" partners but fate stepped in the way. My husband started having symptoms of a heart attack on the airplane on his way home from a visit to Dallas. He was taken to a local hospital and they did find a blockage. But.... with HMO's he was sent home to see if Nitroglycerin would take care of it. Well, he had an angioplasty with a stent put in this past Wednesday and he is doing fine. Needless to say, I've been bouncing around and not getting a thing accomplished lately. I'm taking today to say "I'm taking control back and things are going to get back to some sense of being normal!"
I will have to say that during the reformatting and changing things from one computer to another we may have lost some information. If you have sent us something, please resend it. Everything is important and we do not wish to leave anyone out.
Thank for you patience and understanding. We have the best readers there could possibly be.
November is National Family Caregivers Month
Dear Friends of the National Family Caregivers Association (NFCA):
We want to remind you that National Family Caregivers Month 2000 (NFC Month) is a time to honor, thank, support, assist, educate, and celebrate our nation's family caregivers. More than one quarter (26.6%) of the adult population has provided care for a chronically ill, disabled or aged family member or friend during the past year. Based on current census data, that translates into more than 54 million people.
Visit our web site at http://www.nfcacares.org/ to get suggestions on how to celebrate the month and view the promotional items available. We are offering T-shirts, mugs, pens and pads with our Four Messages of Self-Advocacy, bookmarks, pamphlets, buttons and greeting cards. You can place your order online or call us at 800-896-3650.
We urge you to reach out to family caregivers who do so much to help others but receive little recognition and support themselves. "Share the Caring!"
Thank you for your support.
My name is Rudy Tanzi and I am a Professor of Neurology at Harvard Medical School and Director of the Genetics and Aging Research Unit at Massachusetts General Hospital. I have been researching the genetic causes of Alzheimer disease for the past twenty years and I thought it might be helpful to inform those who utilize this very useful website that my new book "Decoding Darkness" (written with Ann Parson) has now been released by Perseus Publishing.
"Decoding Darkness" describes in very "user-friendly" terms what we currently know about the most likely causes of Alzheimer's disease, the different inherited genes involved, and the promising new drugs that are currently in the pharmaceutical pipeline. I have isolated and characterized several of the known Alzheimer disease genes in my laboratory over the past 15 years and have now begun to work closely with drug companies to develop new drugs based on the knowledge gained from these important genetic studies. This research endeavor along with those of many of my collaborators and colleagues around the world have been so exciting over the past decade that Ann Parson and I felt compelled to share these many breakthroughs and the passion of those who made them, with those in the general public, and especially those such caregivers, whose lives are directly impacted by this insidious thief of minds.
"Decoding Darkness" is written in the style of a true medical detective novel where all the players are real and the breakthroughs genuine. The book also chronicles the lives of the members of one of the early-onset Alzheimer families in our study, the Noonans (with whom we were recently featured on CBS' 20/20). Writing this book was an intensive 5 year effort to tell what is arguably one the most extraordinary chapters in the history of medical research. My co-author and I hope you might have the opportunity to read this as we truly believe that it will help all who care about this tragic disease to understand its causes, its patterns of inheritance, and the newest therapeutic methods for hopefully preventing and treating it. Finally, please don't get the idea that I'm emailing just to sell the book. I don't know how else to ensure that those who could benefit most from this book's publication will hear about it; this seems the most direct way to do so -- by directly informing websites like this one where those who care about this disease often gather to exchange valuable information and discuss their everyday problems.
While "Decoding Darkness" is available in all major bookstores or it can be ordered at several internet book sites including Amazon.com. where the link is:
I truly hope that this book will help all who read it to better understand the nature of this terrible disease as my laboratory and many others around the world attempt to someday make Alzheimer's disease, itself, a long lost memory.
Thanks very much for your time,
Dr. Rudy Tanzi
In Passing: Those We Must Remember
Just to let you know I received an email this evening from LPNYFLGANY. If you don't remember, she is the one who did the Oxygen interview on elder care. She wrote me to let me know her father peacefully passed away Wednesday, October 25, 2000. From the sounds of her email, she is doing ok, but know that she can use our thoughts and prayers.
Karen asks that you notify her if you are receiving duplicate copies of The Ribbon in your email. She thinks she did just fine in transfering the list but asks you to let her know if there are problems. Another item pertaining to the list, ask your friends and families if they are getting their copies. Hopefully no one has been deleted during this process, but we ask you to check for us.
You can contact Karen at KMenges581@aol.com.
Here is a link that will give you needed ideas to help during this long holiday season.
Alzheimer's and the
Holidays - Planning and Gift Ideas
It is with regret that we have to announce the departure of HOST AHTH AC and HOST AHTH MAD from the AOL Support groups. Along with their departure the Caring for Elderly Loved Ones support group has been canceled. These ladies have been a tremendous help to hundreds or even thousands of us who seek information and support about caregiving.
Ladies, we wish you well and hope that you will stay in touch with us. Your insight and guidance is always welcomed. ((((((((((Hugs)))))))) to you both.
News from The Gathering Place
HAPPY BELATED BIRTHDAY
Gathering Place Friends:
NEW TIMES AND DAYS
Just a quick
note to let you know that we have new hours at "The
Gathering Place". The site will be hosted so folks can
"Gather" from 6-8 p.m. PST, 7-9 p.m. MST, 8-10 p.m.
CST, and 9-11 p.m. EST Monday through Friday. The site will
not be hosted on the weekends, however, folks are welcome to
"Gather" during those same hours in hopes of catching
someone at home to visit with. Our web address is The Gathering Place or http://www.theribbon.com/GatherPlace/.
(Please remember it will take a little while for the page to
load, so please be patient.)
Not Growing Old
Just a simple word. You wouldn't think a simple word could do so
much damage and affect so many lives. But it does and
unless you have personally experienced this huge dark hole,
please never judge those of us who have no control over this
ominous cloud. I have heard, "If I would only try
harder, If I would just be reasonable and snap out of it."
"Stop wallowing in pity and feeling sorry for myself"
Saying these things to someone with depression is as futile as
telling a kidney-disease patient, "With enough willpower you
can control your renal functioning." There seems to be
a stigma of shame that adds to it's intensity.
Depression is an illness like Alzheimer's, Cancer, and all the
many other illnesses. Fortunately there is hope for
depression. Depression is an illness that has biological,
psychological, and genetic components. It must be treated.
Willpower has little or nothing to do with it.
Notes about us being Top Alzheimer's Caregiving Site
IT HAS BEEN A BLESSING
what did you expect? There are two of the most wonderful,
compassionate, caring, loving women working to put this
informative newsletter together each and every month. You
both are so dear to me and I dearly love you and without The
Ribbon I would have been completely lost. I still print it
out get copies made and pass them out. If I can only reach
one person or if they find something in that newsletter, even one
tiny thing that will help then it is worthwhile. My Texas
Hat is off to you but Hey you are the best.
Congratulations! But we've known it all along.
Hope everything is going well for you and your family. I know I haven't talked to you lately, but thought I'd pass along an update.
Looks as though we have reached another plateau. As you know I was holding out for the waiting period necessary for some legal issues. We were planning on proceeding on placement for Granny this month, but someone upstairs intervened. Last week Granny took a turn for the worse and I took her to the ER. Well, she is still there and will remain there to be evaluated to determine where she belongs and a bed opens up in the care center. The doctor says he can't believe I've been able to care for her as long as I have. I wouldn't have been able to if it wasn't for the support you and the support chat provided by the NM Alzheimers Assn have provided me. But, he says that he doesn't see how I can possibly bring her home and care for her. Just like that, over night she goes from getting around as usual to the next day when something happens and things change over night. She isn't a happy camper and is still trying to get out of bed, and when I'm there, she wants my help to leave, which is hard to take, but she is sleeping most of the time. I can see where once she is placed she will probably deteriorate a lot faster.
Now, it is strange not having her here, but she is still here in spirit. I keep looking over my shoulder wondering when she is going to appear looking for me. It is weird being able to go outside and not have to worry about hurrying back in before she gets to missing me and looking for me. I've been able to ride my horse and do other things that I've missed for the past three years. I still haven't heard a word from my parents and I've heard (second hand of course) that my Dad has suffered several strokes and health wise it sounds like he isn't doing very well. Be interesting how things play out in the near future, but I'm still taking things one day at a time, you never know what tomorrow may bring.
We did recently finally get to purchase that double wide that I've been dreaming of the past three years, it is just a shame that granny wasn't able to enjoy it more. She had some problems adjusting to the new house though, but she was at the point she didn't recognize where she was anyway.
Well, guess I'd better let you go, just wanted to let you know I've been thinking of you and Jamie a lot lately.
Take care and God Bless for all the wonderful things you two do for us!!
Yes!!!!!!!! The ribbon is number one. I enjoyed talking in the chat the other night. I want to thank you for the "The Ribbon" and also for putting in my poetry in Issue 7 that was just sent out. This is a wonderful support system with very caring hearts. Love to all and God Bless you all on your continued works with this disease. Love, Lynn
Congratulations, Karen & Jamie. This is wonderful news. You're doing such needed work by bringing encouragement and information to families of Alzheimer's victims and those who have Alzheimer's. I'm so pleased you contacted me about participating in your newsletter. Would you like to see a copy of my print newsletter? If so, send me your postal address.
Now we are back on the fast track. See you in two weeks!
Hugs and Peace,