President's Report
Lynn Jackson - Canada
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's
Associations. 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!!
Treasurer - Candy Harrison/Pat Rickert - USA (Report to follow in separate document)
Co-Vice President - Carole Mulliken - USA
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.
Co-Vice President - Mary Lockhart - USA
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
guest 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 Guest who are wanting to learn
more about our disease.
Secretary - Christine/Paul Bryden - Australia
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.
Research Liaison - Christine Jonas-Simpson - Canada
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
Director Jeanne Lee - USA
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".
Director - Ruth Harris - USA
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 one 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.
Director - Elaine Wright - Canada
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.php
and
www.alzheimerbc.org/ascent_bios03.php#ew
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.
Director - Jan Phillips - USA
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 Alz. Assn. conference. Although we were met with
approval and interest, the conference basically bore no fruit
for DASNI - Tulsa Ass. 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.
Director - Elaine Silverio - USA
Director - Alan Gibb - New Zealand
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