Living with Alzheimer's: 12 years
Story excerpted from Jeanne's book, " Just Love Me. My Life Turned Upside-Down by Alzheimer's" and a local TV series in Hawaii being produced by Jeanne with help from her doctor, friends and family.
I am a 66-year-old woman diagnosed in 1995 with Alzheimer's. My name is Jeanne. Although each day has struggles (eating correctly and taking my meds), exercising, doing lectures and chatting to help others and those in my boat keep my downhill progress a bit slower.
This TV series is dedicated to the three doctors who gave me the time and understanding to test me fully and diagnosis the familial Alzheimer's diagnosis. The first is Dr. Valarie Brandon, M.D., who will be a part of my series and has extensive understanding of the disease and has treated me since 1994. David Dameron, Ph. D., who helped me through some tough times and said he surely could not rule out Alzheimer's. A special thanks to Dr. Amjadi of Queens for having the understanding to help me with medications not yet available in the United States for Alzheimer's.
I have strong hopes that the four neurologists who sent me home as I was too young (and I knew I lived in Hawaii and that he had a pen in his hand), and the two psychiatrists, one who sent me home as I was crying, and the other prescribed my pills for eight months and only saw me two times, have learned a bit more about diagnosis and are aware of the many persons ages 29 to 70 can have early-stage dementia and still contribute to society. We are not totally with carepartners nor are we less than intelligent beings. We just move a bit slower than the rest of the population. Don't even think of counting us out.
This series will reveal the thoughts and emotions of a woman struggling with a suddenly unmanageable life; numerous hospitalizations, suicide attempts, everyday turmoil and finally an extreme search for an accurate diagnosis of the illness responsible for it all. This woman is me, and I am living with Alzheimer's, not yet dying of it.
It will be a bit unique in that most people who speak of the disease are medical or carepartners. I belong to the world's largest Internet group for persons with dementia international: DASNI. We have approximately 300 members with dementia of the incurable type, and our loyal supporters consist of medical persons and loving friends caring enough to understand.
I will be very personal and show a frank description of my life before approaching and during the early stages. Hopefully this will help you to understand the worries and frustrations that constantly torment my life. I hope to bring early diagnosis awareness to more professionals here in Hawaii. Europe, Australia, Canada, New Zealand are so far ahead of the Unites States, and the mainland is far ahead of Hawaii.
Two years ago I was travelling the world on my journey for Alzheimer's awareness and giving four lectures a month. Today, I need to read most of my lecture and cannot travel alone. Later in the series you will know the many things I cannot do any longer, but I try my darndest to focus on what I can do.
Caregivers and medical field think they know. Few do, but my group lives it every hour of every day and can teach what cannot be learned from books. This series is intended not only for those who have or think they have dementia, but is equally for those who may be interacting with such a person or even just for people with a heart to care about others
On a good day, I am capable of writing a reasonably coherent letter. And yet on other days, I cannot even find a single word to begin the letter. Many times, mostly when I'm tired, my brain shuts off. I do not even tell my feet what to do. But just because I have a hard time expressing myself does not mean I don't still have the same feelings and emotions – some may be even stronger.
Ageless Design, Mayo Clinic, International Alzheimer's Association, and many more have our link on there Web site, which means they support us. This is so important as seven short years ago we were just five people on the Internet with many disbelieving people doubting our diagnosis. Now at Dementia Advocacy and Support Network International, we are over 300 internationally and growing each day.
Due to increasing awareness about dementia, earlier diagnosis and more effective treatments, early-stage people with dementia are requesting more sensitivity on the stigma of diagnosis, more inclusion in the leadership and more services offered by the Association. This is an ever increasingly important constituency for the Association to pay attention to as we plan for our future, as well as respond to current requests as outlined in the two circulating petitions.
We can anticipate the voices of people with dementia, their families and advocates to continue to grow in demand with the emerging baby boom generation and advances in research. The Association must pay attention to this growing and emerging constituency across all components of the Association, national and chapters, board of directors, and all functional areas, including chapters and national office; divisions of program and community services; medical and scientific research; branding and marketing; public policy; chapter relations; development and finance.
http://www.dasninternational.org/ Dementia Advocacy and Support Network International
http://www.alzinfo.org/community/chatrooms/ Alzheimer's info.org, also our international chat from 11 a.m. - 4 p.m., 6 p.m. in Hawaii
http://www.umm.edu/neurosciences/alzheimer.html Alzheimer's Disease
http://medlineplus.gov/ Medline Plus Health
http://www.alzheimersdailynews/ Alzheimer's Daily News
http://www.angelfire.com/hi4/jleehawaii/index.html Jeanne L. Lee in Hawaii
http://www.alzheimers.org/ Alzheimer's Disease Education & Referral Center
http://www.alzheimers.org.uk/Younger_People_with_Dementia/index.htm Younger people with dementia