Volume 5, Issue 2 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 5, Issue 2
January 23, 2001

www.TheRibbon.com

The Ribbon Needs Your Help!

The year 2000 held a lot of changes for many of us and The Ribbon was not exempt from change. The web site has a new look, thanks to our wonderful site manager, Weather91. We have welcomed The Gathering Place to The Ribbon family as our chat room and it is a wonderful addition. We have won awards and have watched the counter on the web site grow to over 12,000! So many people reaching out for support, so many people affected by Alzheimer's Disease.

As some of you know, in becoming "The Ribbon Online" we had to relinquish our mailing list and start all over and we've done well to build that back up but......there is that nagging fear that someone has been missed, someone who really needs and wants to have that extra bit of support is somehow being overlooked.

So, we are asking for your help. Within the next month, we ask that you help us to reach out. If every one of you spoke to just two people about The Ribbon and directed those two people to subscribe, either thru the web site or by sending an e-mail directly to KMenges581@aol.com, we could triple our mailing list! Most importantly, it would mean that many more people would have the benefit of support and sharing.

Don't forget if you know someone who doesn't have access to a computer you may email their name and address to DrMOM1955@aol.com and we will mail them a copy. Or, if they wish to subscribe themselves, the address is:

The Ribbon
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

We encourage all of you to continue to use The Ribbon as your forum to share, inform and vent. We welcome any ideas you may have to spread the word about AD and the support we offer. Our web site has almost 3 years of newsletters filled with information. Use it! And encourage others to do the same.

Let's begin the New Year with a renewed effort to share and support, it's the only way to make it through the maze of this disease.

Invitation to Participate in Research for
Persons Living with Early Onset Alzheimer's Disease (EOAD)

Do you live with Early Onset Alzheimer's Disease?

You are invited to participate in an Internet research study on feeling the same yet different, for persons living with EOAD. This study is being conducted by Christine Jonas-Simpson RN; PhD, Nurse Researcher and Gail Mitchell, RN; PhD, Chief Nursing Officer at Sunnybrook & Women's College Health Sciences Centre in Toronto, Canada. This study has been approved by the Research Ethics Board of S&W.

The purpose of this research is to learn about and understand the experience of feeling the same yet different for persons living with Early Onset Alzheimer's Disease (EOAD). Understanding this experience may help nurses and other health professionals to be more aware of, and sensitive to patients' needs and thus improve the quality of care by meeting and exceeding patients' expectations. If you are interested, please visit our website below.

Thank you,
Christine.Jonas-Simpson

Sunnybrook & Women's College Health Sciences Centre: EOAD
http://www.swchsc.on.ca/research/eoad.html

In Passing: Those We Must Remember

Notification by PHOTOLJT
Dated 1-21-01

My Dear Gathering Place Friends:

It is with much sadness and a heavy heart that I write to you this evening. Friday morning Poppybenny, CarolK to us, let me know that things were not going well with her father; his system was beginning to shut down and he was in a coma.

This evening I received news from BettyP just a bit ago that Carol's father passed away Saturday afternoon at approximately 1:00 p.m. It is my understanding that Carol was there and he went peacefully. Betty said that Carol is in a bit of a daze, but is doing well.

Please join with me in extending your sympathies and thoughts out to Carol and her family in this very trying time.

Dated 1-22-01

It is with much sadness and a heavier heart that I write to you this morning.

This morning I received an instant message from KPKPY, known to us in The Gathering Place, as Betty (Betty's husband is the one who has Alzheimer's). It has been a while since she has been with us in the room. Nonetheless, her father passed away Saturday from gall bladder complications and cancer.

Please join with me in extending your sympathies and thoughts out to Betty and her family in this very trying time.

From roboyoboy@worldnet.att.net
Forwarded by Cwadephill

Financial Assistance Available to Alzheimer's Caregivers

The American Health Assistance Foundation (AHAF)has established the Alzheimer's Family Relief Program (AFRP) to provide direct financial assistance and resources for the continued care and support of the Alzheimer's patients and their caregivers. Caregivers can apply for a no-strings grant of up to $500 for expenses such as short-term nursing care, home health care, respite care, adult day care, medications, medical or personal hygiene supplies, transportation, and other expenses related to care for a patient with Alzheimer's Disease.

Applications are funded based on established need and on a first-come, first-served basis. First-time applicants will receive priority treatment.

Liquid assets (which include cash, checking and savings accounts, money market accounts, stocks, bonds, and mutual funds) of the patient (or patient and caregiver if the patient is the caregiver's dependent) may not exceed $10,000. Liquid assets do not include the patient's car or house. However, all of the patient's assets will be taken into consideration in determining the urgency of need.

Applications must include original signature and a corroborating statement from the patient's physician, health professional or social worker before they are presented to the AFRP Review Committee for consideration for funding.

The extent to which assistance can be provided, as well as the number of patients who can be helped, is determined by the availability of funds. At times, it may be necessary to place an approved request on a waiting list until funds become available.

For more information and an application, please visit the AHAF website at http://www.ahaf.org
American Health Assistance Foundation: Alzheimer's Disease
or contact Jarmel Wilson, LSWA, AFRP Manager, atjwilson@ahaf.org
or call 1-800-437-2423.

Ronald Reagan

As you all may have heard, Ronald Reagan took a fall and broke his hip. All reports say he is recovering nicely. I thought it might be nice if we all took a minute to send an email to Mrs. Nancy Reagan to let her know our thoughts are with her. She is staying by his bedside while he is in the hospital.

You can send her an email at this address:
ReaganFoundation.org
www.reaganfoundation.org

Links

iVillage News and Issues Channel
There is an article entitled "Green light for Alzheimer's drugs: Ruling to end postcode lottery may help thousands."

CareThere.com
www.carethere.com
Explore ways to take better care of yourself. There is plenty of information and message boards.

Email Bag

From KDuisterma

Hello-
I can't tell you how much you newsletter helps me. I look for it on Sunday night after I have taken Mom back to here ECF. She has been moved to a contained unit and it's always nice to have her with me for a few hours. She cut up chicken for soup on Sunday and loved every minute. In her halting speech she said "I should be doing this more". I wish the home would let her fold wash cloths even if they could not be used by another resident. Although she is aphasic, I can usually figure out what she is saying. I have voluntered for a study and will have the speech and other tests done in Feburary. I'm 53 years old and Mom was about 77 or 78 when I noticed changes in her. I work in the medical field and had been to lectures on this terrible disease at that time. Mom is now 87. I'll e'mail my thoughts on the test after I'm done. I received "Hard to Forget" by Charles Pierce for Christmas and I'm about half way through. Please keep up the good work. Jan

From Cwadephill

I wanted to share this with all of you ... this was written by a member of Dementia Advocacy and Support Network (DASN), Morris Friedell. Keep in mind as you read that this was written by a man diagnosed 3 years ago with Alz.D.

I've been thinking about Martin Luther King, Jr. and the American Dream of opportunity for all. My parents, Jews whose ancestors immigrated here not many generations before, believed in the American dream. There were no immovable barriers to seeking our personal fulfillment in work or in family life--just challenges that could be overcome. I too believed in the American Dream. I found fulfilling work--my children could, too. My marriage to their mother didn't work out--they could do better, or maybe I could in the future. There was always possibility, hope, and opportunity.

Even if one got cancer, one could still live the American Dream--one could fight it bravely and, if necessary, die with dignity. In America there was always the opportunity to be somebody and to be yourself.

Democracy--one person, one vote--is an expression of the American dream. It might be "logical" to vote in proportion to income or IQ but it would clash with the American Dream. We are not equal in IQ, but we are equal in something more important, and thus we can and should be equal in having opportunity.

All my life I have been concerned about those left out of the American Dream (though my priority concern was the threat of nuclear war). In the sociology classes I taught, we studied the work of Martin Luther King, Jr., and his creative innovations in leadership. I never imagined that this stuff would personally apply to me, though. I would never be black and unable to sit at a lunch counter; I would never be gay and unable to get married; I'd never even be a woman and unable safely to take a walk at night.

And when I was first diagnosed with Alzheimer's, I still didn't think Martin Luther King, Jr. had anything personally to say to me. Nature was to blame, not society--and wasn't society doing all it could for people like me? Just like it was "doing all it could" for a black kid who was advised to get a job as a janitor because he didn't even use the word "be" correctly--you can't argue with biology!

But then I started learning about the opportunities for rehabilitation (at least occasionally) available to persons with other brain disorders, all kinds of brain disorders, as long as they weren't labeled "progressive" and "incurable." I reread King's magnificent "Letter from a Birmingham Jail," where he passionately spoke out about the indignities and terrors of being a southern black, and a phrase jumped out at me: "when you are forever fighting a degenerating sense of nobodiness...." What a perfect description of what we're up against! A classic book about us is called The Loss of Self. A typical recent book by a caregiver is called He Used to be Somebody: "She shares the continuous state of mourning that transpires as she loses Tom in bits and pieces."

The American Dream, which King died for, is that nobody deserves to feel "a degenerating sense of nobodiness." Everybody needs an opportunity to develop his or her potential to the fullest. We who have Alzheimer's can struggle for this Dream to become a reality. We can learn from King and his movement. We can boldly face the worst, and in the teeth of it proclaim we are still Somebody. Because of the Truth of Something beyond our losses. Then we can fight for an America where every disabled person can sit in the front of the bus!

---Morris

Morris Friedell's Home Page
http://members.aol.com/MorrisFF/index.html

Jan ~ Mina Phillips
*Jan/Mina's Home Page
(*Click link to visit !*)

Nothing the heart gives away is gone ~ It is kept in the heart of others . . . The Heart Remembers

Contentment is not the fulfillment of what you want, but,
the realization of what you have

Karen and I were talking on the phone this morning. We think "ok, we have a handle on all this stuff." It seems that things are going along ok and then wham! we get hit over the head again.

This morning Karen got a call that her mother, who has Alzheimer's, had been taken to the hospital with a possible stroke. Needless to say it is taking it's toll on Karen. She is a long distance caregiver. It's hard to not be right there at the moment.

I on the other hand got back from Dallas yesterday evening. I had been to attend the birthday party of my step-son, Roger. He has Down's Syndrome, Congestive Heart Failure, and now Dementia. The doctor's told us it would more than likely be his last birthday. They say his passing will come sooner rather than later. I had not seen Roger since this past summer...what a change I encountered.

It just goes to show, you NEVER get a handle on this stuff. As soon as we think we do, things progress. It gets overwhelming at times but we know that we have each other and we have you all for support. We hope you feel the same about us.

Keep us as well as all caregivers in your good thoughts and prayers.

Hugs and Peace,
Karen and Jamie