Volume 4, Issue 9 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease
Volume 4, Issue 9
November 12, 2000

TheRibbon.com

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.

Jeannie Ervin
Manager, Member Relations
National Family Caregivers Association

Book Nook

Hi,

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:

'Decoding Darkness' - Amazon.com

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

From PHOTOLJT
Dated 10-18-2000

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.

Emailing List

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.

Links

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
www.mayohealth.org/mayo/9912/htm/alzheimers.htm

Sad News

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

My Dear Gathering Place Friends:

I am so happy to announce that today is our first birthday here at The Gathering Place - Online Alzheimer's Caregiver Support. And what a first year it has been! We are over 1500 hits on our web site. How proud I am of that! To commemorate our first year, we will be having a special meeting Monday night, October 23, 2000, at 6:00 p.m. PST (the links are below).

I need to say thank you to our dear friends at The Ribbon. Jamie, Karen, and last but not least, Kevin - our computer guy. Thank you all so much for opening your home to us and for being wonderful, caring, and loving friends! You are all so unbelievable!

I need to thank my dear Gates85 and SHMOM929 for their love, support, and hosting help throughout the year in the room.

But my biggest thank you is to my very two special hosts that I refer to as my right and left hands...my dear, dear Mary (Tracy1952) and Sharon (Meemawmoe). Aside from them being in the chatroom night after night, they have become absolutely wonderful friends that I am so thrilled to have the honor and privilege of calling friend and sister. Mary and Sharon, thank you so very much for being there and making the room the success it is! You are both unforgettable!

As we celebrate this first year, we need to stop for just a moment and remember why we have all become so motivated in this endeavor. Our loved ones are our original motivators. However, if it had not been for our dear friend, Alzjane198 - our dear Jane, this room would have never found its way into existence. It was because of her concern for caregivers and her prodding the idea came to be. Thank you my dear friend for your continued guidance as I know you are looking down on us and smiling at us with your approval!

Thank you all for your support and visits to The Gathering Place. It is my hope to continue, for a very long time, to offer a place to just be yourself, unwind, vent your frustrations; to "gather" your wits, your strength, and your sanity. Our web address is The Gathering Place or http://www.theribbon.com/GatherPlace/. You can also access the chatroom from The Ribbon home page or http://www.theribbon.com/. We are also listed here Top Alzheimer's/Caregiving Sites or http://new.topsitelists.com/bestsites/bpsibley/topsites.html/. If you access from this link (it will take a bit to load), scroll down the page until you find The Gathering Place. By accessing here, you will also be voting for our site to be one of the top alzheimer's sites (voting is clicking on the picture of the site).

Again my friends, thank you so much for a very wonderful year! Here's to many, many more!

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.)

You can also access the chatroom from The Ribbon home page or http://www.theribbon.com/. We are also listed here Top Alzheimer's/Caregiving Sites or http://new.topsitelists.com/bestsites/bpsibley/topsites.html/. If you access from this link (it will take a bit to load), scroll down the page until you find The Gathering Place. By accessing here, you will also be voting for our site to be one of the top alzheimer's sites (voting is clicking on the picture of the site). For non-AOL folks, to enter, just copy any fo the http lines such as http://www.theribbon.com/GatherPlace/ then Paste into your online address area, click on Enter or Go and it should load right up. (If you are on AOL, you can click on the dark blue underlined words and the site will launch automatically.)

Hope to see you all there soon!

Love Always,
Linda

Email Bag

From DKThomp

Good Morning All,

My Pastor preached yesterday on Titus 2:1-10 both in the morning and in the evening services. In the passage, Paul teaches about the older generations and how they should walk before the world and certainly before their own progeny. It is a great passage and one that comes very close to my heart. In the morning service Pastor Spink quoted a poem by John E. Roberts entitled "Not Growing Old." His point was, yes we are all getting older physically, but we should be growing stronger spiritually. I don't know the author, but he surely used Ecclesiastes 12:1-8 as the format for his thoughts on growing old. I thought I might share with all of you today.

Pastor used this reference then quoted the poem. 2 Corinthians 4:16-18. "For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal."

Not Growing Old
by John E. Roberts

They say that I am growing old;
I've heard them tell it times untold,
In language plain and bold----
But I am NOT growing old.

This frail old shell in which I dwell
Is growing old, I know full well---
But I am not the shell.

What if my hair is turning grey?
Grey hairs are honorable, they say.
What if my eyesight's growing dim?
I still can see to follow him
Who sacrificed His life for me
Upon the cross of Calvary.

What should I care if Time's old plow
Has left its furrows on my brow?
Another house, not made with hand,
Awaits me in the Glory Land.

What though I falter in my walk?
What though my tongue refuse to talk?
I still can tread the narrow way,
I still can watch, and praise and pray,

My hearing may not be as keen

As in the past it may have been,
Still, I can her my Saviour say,
In whispers soft, "This is the way."

The outward man, do what I can
To lengthen out this life's short span,
Shall perish, and return to dust,
As everything in nature must.

The inward man, the Scriptures say,
Is growing stronger every day.
Then how can I be growing old
When safe within my Saviour's fold?

Ere long my soul shall fly away
And leave this tenement of clay;
This robe of flesh I'll drop, and rise
To seize the "everlasting prize."
I'll meet you on the streets of gold,
And prove that I'm not growing old.

In His Great Love,

Doug and Ann

From Datel123

Depression! 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.

Through the years I have experienced small bouts of depression but nothing serious enough that caused me concern. Both my parents suffered depression. The statistics of a child having depression from one parent with depression is 25%. The rate goes up to 75% if both parents have depression. What a legacy to pass on to your children. I promised my daughter that if I weren't better in one month I would let her find the help she thought I needed. I stopped the Prozac and the Xanax. The vast amounts of 1 mg of Xanax I had been taking for so long caused extreme withdrawal symptoms. There were days I thought I couldn't do it but I was determined to do this alone. I have an appointment next week in Houston at The Baylor Psychiatric Center for a psychological evaluation and a follow up visit with the Psychiatrist who runs the clinic.

I have finally decided that I can't live back here in this room, more than that, I don't want to be a prisoner of this room. This all started over three years ago. Yes, I think that AZ. and depression came hand in hand. Depression is a funny thing, it can manifest itself in so many diverse ways. I experience extreme fatigue, nothing brings me happiness, I am extremely angry, I eat too much and all the wrong things. I really don't think that Lisa really understood how serious this was until the pills. I knew how many pills it would take to kill me and I had no intentions of doing that. I was just screaming as loud as I could for help. I have found that I can force myself to do the things that have to be done. I managed those 6 visits into Houston and John got his new leg. But I just walk around this house that I love so much and see dust and things that need to be done and just walk by and don't give it a thought. I do not think of suicide and that is a +. Some days just going to HH are more than I can do. So I use those AZ. fiblets and hide under the cover. I started to go on Tuesday as I hadn't been since last Thursday and hit the curb going out of Lakewood and blew out a tire. I drove it home, my neighbor's son put the spare on and it was flat. We got that fixed and I went and had 4 new Tiger Paws (the ones that nail's won't pierce) put on my car. I still had lots of tread left but didn't want one tire different from the others. I didn't make it that day so knew that I had to go the next day. Some things you just have to do. There had been no feelings of sadness, no mushy feelings, nothing but I was eager to see my husband. I turned off the main street to go to HH and for no reason the flood gates opened. I pulled my car over thinking it was a momentary thing but the more I wiped the faster and harder the tears fell. I sat there and cried until I didn't think there could possible be any tears left. Great, gulping sobs that literally shook my body. As usual I was alone. I finally made my way into the building and as soon as the nurses saw me they knew. They always know and it was group hug time. I see John coming up the hall and I just run to him and throw my arms around him and told him to hold me and never let me go. I could not stop crying and he just held me and patted my back oblivious to any kind of problem. He thought I had a headache. I took him out to eat and sat there in the restaurant with tears dripping off my chin. We go back to HH and I give him a shower. Anything so I can feel the warmth of his body, touch him and know that he still is alive even though I have had his funeral so many times. My heart is wanting to just bring him home with me, fortunately I have enough of a mind left to know what an unrealistic thing that would be. As I lay there in bed beside him my heart kept wanting to know, "How did this all come about," and "could I have done anything to change the events." So many things along with the AZ. caused me to be disillusioned. The loss of my job in such an unethical way, losing my medical insurance, losing my family, my daughter, trying to learn how to accept this ungracious monster who has invaded my life. I sometimes think I am super strong or extremely weak. Trying to hold everything together when I was so fragile one tiny touch would shatter me into millions of pieces. Every day a new set of problems, what do I do? What would John do? I forgot. John can never be a part of decision making again. You have to find the solution on your own. "But God this is too hard." "I can't possibly do all of these things and do them right." "Take my hand my child, I will never leave you." Why then do I feel so alone and sad? "Dear God in Heaven, if you will give me my husband back to me with his mind intact, I will never ask anything from you for all eternity." But God doesn't make deals, he guides, advises, but he doesn't haggle deals. I know there is a reason for this and I pray someday soon I will find that reason. But for now, I don't know why? Southern Baptist's were taught to never question God's will, that there was a reason for everything he did and it was not for us to question. I have sung hymns since I was old enough to be stood on a piano bench, but as I outgrew that piano bench and graduated on to the stage, my inquisitive mind started wanting to know the answers to the questions. I was chastised for asking. But it never stopped me from asking. I learned who my friends are when I backed away from the board. Those you thought would never get in touch did and those you depended on, didn't. I am very blessed to have such wonderful friends such as Jan, Jamie, and Karen. They look after me as if I were their child. So many times I have wished to not be a grown up. Wouldn't it be wonderful to not have to worry about anything except what to wear to school? Wish me luck everyone. I'm starting a new journey. Please let me come out of this intact and whole. John deserves no less.

All My Love,
Dean

Notes about us being Top Alzheimer's Caregiving Site

From TJKLFORT

WELL DESERVED

IT HAS BEEN A BLESSING

From NannyDean

And 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.

Hugs,
Dean

^^^^^^^^^^^^^^^^^^

From wolfsprg@zianet.com

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!!

Roberta

From lyno55@hotmail.com

Dear Karen,

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

From me.allen@juno.com

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.

Mary Emma

Mary Emma Allen
http://homepage.fcgnetworks.net/jetent/mea
me.allen@juno.com

Now we are back on the fast track. See you in two weeks!

Hugs and Peace,
Karen and Jamie