DASN International passed 2003 with flying colors! What a year!
From in front of our computers, or in front of an audience, or in a boardroom or even from on top of the highest mountain in Africa, we have told the world that there is life after a diagnosis of dementia.
What were just glints in the eyes and hopes in the hearts of the 11 DASN members who in 2001 met in Montana at what we are now calling the "Montana Summit", has come to fruition. There is now a person with dementia on the Alzheimer's Disease International (ADI) Board of Directors. Christine Bryden was elected to this position this last September. She will carry a voice from us and other PWiDs to the rest of the world.
This is a huge step forward for DASNI and people with dementia worldwide.
Congratulations to the others who have been elected to Boards of Directors of their local, provincial or national Alzheimer'sAssociations. What an accomplishment!
Many of you have been "out there" giving talks and attending support groups. People want to hear what we have to say and you are getting the word out just fine. Please keep up the good work.
My own activities this past year have included winning the Mike Crowe award given to me by the Alzheimer Society of British Columbia. It is given out to a person with dementia who has been able to help others with dementia by providing support and encouragement. Presentations I've made this year include a workshop on the Stigma of Dementia given at the 2003 ADI conference in Santo Domingo.
I am preparing a presentation to be given at the Alzheimer Europe Conference in Prague in May that it will describe how a person with dementia can take an active part in their later life.
And equally important most of us have been in front of our computers quietly giving and receiving help and support to and from our fellow PWiDs by way of the email community and chat room. This method of support has continued to be a mainstay in our lives. Is it a big part of the reason that we are doing better than expected? Who knows? Maybe one day it may even be referred to as the "DASNI Effect" by the medical community. Wouldn't that be something!! Keep on keeping on everyone!!
This year I facilitated the email community, served as greeter and I moderated for part of the year. I emailed questionnaires, approving or rejecting applicants. I also represented DASNI at the spring early stage workshop in Tulsa, Oklahoma. I have also designed and offered empathy/sensitivity training for home health care workers in my area.
I was invited to write another article for the St. Louis Alzheimer's Association newsletter which was to be the start of a regular column by PWIDs and for PWIDs.
I provided another in-service workshop for program staff at the St. Louis chapter of the Alzheimer's Association following the Tulsa conference, and also served on the Memory Walk planning committee for my county.I was honored to be asked to host a hospitality room for PWIDs at the St. Louis Association Spring Conference.
Since print materials such as brochures are so expensive, I have developed new black and white trifold brochure for DASNI.
Since inquiries from our www.dasninternational.org are directed to Mary or me, I have maintained correspondence, mailed, and otherwise provided materials about DASNI to professionals from a number of countries.
In promotion for the Memory Walk, I made a radio appearance for Franklin County Memory Walk Committee, identifying myself as a PWID and encouraging other PWID participation. I serve on the Franklin County Alzheimer's Association Planning Committee which meets monthly, and I have been the subject of two local media articles about living with dementia.
I have begun a personal effort to maintain phone contact with PWIDs from DASNI who have expressed an interest in doing so - and live in areas where my phone service allows. It has been a very rewarding experience.
Finally, I have served as co-vice president with Mary Lockhart this year, and I have edited speech materials for others when asked to do so.
Our chats at www.alzinfo.org/chatrooms/continue to draw more and more new chatters who are wanting to meet others who have dementia. We meet twice each day seven days a week. We have had special guests including Dr. Mitch who has agreed to have a topic chat on the first Thursday of each month in our second chat. We feel very fortunate to have Dr. Mitch. Also the author of The Forgetting, David Shenk has been our guest and will return again in the spring. We welcome Guests who are wanting to learn more about our disease.
Paul was the note-taker for several meetings of the publicity and the fund-raising task forces during 2003, and assisted the President on a number of occasions with input and advice.
Paul and Christine prepared and manned a DASNI booth at the Australian national Alzheimer's conference in March 2003.
From 31 August 2003 to 9 November 2003 Christine and Paul traveled to promote the cause of people with dementia. Christine gave a talk "Insider's perspective of dementia" in India, France, South Africa, Israel, Brazil (where the seminar was organised by Judy Robbe from DASNI), Taiwan and Japan. She also gave a talk "Diagnosis from a PWiDs' perspective" at ADI in Santo Domingo and in Japan.
Christine and Paul assisted Lynn in manning the DASNI booth at ADI.
Christine was elected to the ADI Board in October 2003, and has since been in contact with ADI on a number of issues, including the DASNI ribbon campaign, attendance of PWiDs at ADI conferences, and ways in which PWiDs can become more involved in policy and program activities.
Papers given where DASNI was included in the presentation:
a. Jonas-Simpson, C. (2003). From Silence to Voice: Listening to and Learning from Persons who Live with Dementia. The Hamilton and Halton Alzheimer Foundation and the Alzheimer Society of Hamilton and Halton. Gertrude Cetinski Lectureship.
b. Jonas-Simpson, C. (2003). Giving Voice and Artistic Expression to Experiences of Quality of Life of Persons Living with Alzheimer's Disease and Related Dementias. McMaster Univeristy 20th Anniversary Nursing Research Day.
c. Jonas-Simpson, C (2003). Listening to Persons with Dementia: Valuing the Voices of Persons Living with Dementia. Dufferin County Alzheimer Disease Society.
d. Jonas-Simpson, C. (2003). Connecting through Listening and Valuing the Voices of Persons Living with Dementia.The Art of Connecting, 6th Annual Dementia Conference, Alzheimer Society Greater Simcoe County.
Researchers and Research Studies Facilitated through DASNI
Kyle Whitfield's PhD Research (2003):
Investigation of the organizational 'ingredients' that local Alzheimer Society chapters, who serve rural communities, require to successfully facilitate the inclusion of individuals with dementia in decision-making about health services and supports. Murray Alzheimer Research Education Program, University of Waterloo, Waterloo, Ontario Canada.
Still struggling to be a part of the AD Hawaii but not sitting and waiting for it to happen. Many other AD Associations are selling my books for me and some have it in their library.
An exciting 6 weeks for me this year. Traveling, lecturing for AD Awareness and book signings in western US and Canada. Sixteen cities and 31 lectures. Many of my DASNI family helped me along the way. Sold many books on the trip.
Now at home in Hawaii I am getting more invitations for lectures than is the AD Association. Four times a month I lecture. Some of the places are Rotary, Kiwanis, Elks, Eagles, Women's Book Club, The Helping Hand, Churches, Training at Nursing Facilities, Wellness Centers, Colleges, National Association of Retired Federal Workers, Retired Teachers of Hawaii, Mennonite Village, Brown Bag Luncheons, Barnes and Noble, Borders, Waikiki Community Center, National Association of Postal Supervisors Convention, Nuuanu Nursing Facility (where a doctor even said he had learned from me), Memory Center, Public Library, Senior Citizens Oster Institute and many I cannot remember.
There is a playwright and a documentary writer studying my book at the present time. The book sales are better than I ever imagined. It has, in fact, opened the door for me to get articles in the newspaper three times on TV and two on the radio even one on the Internet radio.
My life is better and more rewarding now than before diagnosis with the exception of my children's lives. DASNI is very much part of my family and hold on life. If not for the support of DASNI, friends, family, my special care partner Vern, my lectures and neuroplasticity I know I would be many steps closer to a nursing home.
The process of opening an Alzheimer's Cafe is still on my mind but funding is not available yet. In its place I opened my own business called "Alzheimer's Awareness".
I downloaded all the photos on the web but had a hard time uploading the resized images as I only have a dial up internet connection and could not get them on the site. Mara did some resizing and shifting also. I proposed a few guidelines for the photos posting so we could have space for more members. I am working with Carole on a few guidelines for emails and posting that the board can review and discuss later. I had a few additional ideas about a phone support but the membership did not repond well to the project so no further work was done.
I have been very busy this year with many speaking engagements across the province of British Columbia.
This year I decided that I really wanted to do something to get Alzheimer's and dementia "on the map" and make people sit up and take notice - so I climbed Mt. Kilimanjaro! Read about the climb at this website: www.alzheimerbc.org/ascent_bios03.php
I am on the short list for the Oprah show. At the time of this writing taping has been postponed so we don't know when that will happen, but it is great that such a powerful TV/world personality is willing to do a show on Alzheimer's - so you can see that I am serious about telling the world and people who have limitations that doors aren't closed- that there are support networks and people who can help.
My last public appearance was with Mary Lockhart, Carole Mulliken and Larry Rose where we represented DASNI with a booth and materials at the Tulsa Alzheimer's Association conference. Although we were met with approval and interest, the conference basically bore no fruit for DASNI. Tulsa Alzheimer's Association is still self serving, lip service basically for PWID's. Personally it was a HUGE success - spending time with my fellow DASNI members was invaluable. Nothing is comparable to one on one, face to face sharing, commiserating, friendship, planning, scheming (grin) and dreaming!
Here on a weekly - as needed basis I have my own mini-support group with locals who share the common bond of dementia with me. With my campers, DASNI brochures on the counter have led to many conversations about relatives, friends, loved ones and what, how and where to get the support they are looking for. I have found this particular lifestyle to be of great benefit. A daily purpose, friendly people, appreciation for my contributions - little or no time to dwell on losses, just time enough to figure out another way to accomplish.