By Minna Packer
I was a teacher, professor, artist, filmmaker, mother of two adult children, a wife, a former American Fulbright, and an active member of my community. I am now 63. I was diagnosed twice, first in September 2016 with a Spect scan, then again in January 2017, when another neurologist ordered an FDG Pet scan. Twice I was told the pattern of the images was that of Alzheimer's. The changes and symptoms of what appears to me to be a rapid form of the disease have been radical.
The neurologist recommended I retire. I pushed myself to continue through the term, and then resigned from my twenty year teaching career last summer. There was no recognition for my many years of service. People I had known for decades, friends and colleagues, disappeared.
The lawyers told me to get my affairs in order and prepare for the eventuality of ending up in a memory care facility. I was not given any guidelines beyond being told by the neurologist to exercise and play Sudoku and Lumosity.
I thought joining an early stage support group would give me purpose and I would make friends. I attended a Reminiscence support group at the neurologist's hospital, and met people two and three decades older than me who were in later stages, who bounced a balloon to each other as an activity. I figured there needs to be more to life in early stage than this. After I sent the social worker an email questioning if there were support groups for younger onset, I was told to not return to the group. I met with a woman who heads a fledgling Alzheimer's organization that offers caregivers support groups in my county, in the hopes that I might start an early stage support group. She told me the only early stage people she knew were not interested in “being out” about having the disease, because of its stigma.
Where was I to turn for social support? I researched and found online communities for people with dementia. Alzconnected.org sponsored by the Alzheimer's Association is an online forum, and the early onset forum became my go to place, to communicate with others in the early stages. I contacted the founder of Dementia Mentors, who paired me with an online dementia mentor who is 59, and has been diagnosed with early Alzheimer's and Frontotemporal Dementia, who I meet with once a week over virtual Zoom chats. Dementia Alliance International support groups, an online community of people with dementia from all over the world, who counter the stigma and advocate for inclusion and having our voices heard, have become my online friends .
I joined Dementia Action Alliance and was recommended for the art workgroup. It's comprised of both people with dementia and professionals without dementia, who work in the arts . Opportunities for discussing stigma and the language we use to describe ourselves have opened up between us. The chair of DAA has become a dear friend who has visited me in my home and regularly Zoom chats with me every week.
Last summer I started a blog on Wordpress: Suddenly Mad: My Voyage Through Early Alzheimer's. The blog has given me the opportunity to tell it like it is for me, the good, bad and ugly. It is the channel for my uncensored self-expression. I upload my artwork and write about my experiences, relationships, and the trials and tribulations of living with a changed and changing brain. Caregivers, people in the dementia community, and old friends and family have written to me with appreciation for my raw honesty and ability to put into words and images my experience of falling down the rabbit hole, that to me, is Alzheimer's. I write for you and I write for myself to remember. My art captures what cannot always be put into words. Sharing my blog is my way of not withdrawing from the world and demonstrating that I am still a creative person with thoughts, feelings and opinions that have resonance.
About the Author
Minna Packer has been an educator, filmmaker, producer/director, fine artist and writer. Born in 1954 in New York City, she is a first generation American, born to Jewish Holocaust survivors from Eastern Europe, who emigrated to the U.S in 1951. She received her professional education at Pratt Institute (MFA); New York University and The Nova Scotia College of Art and Design University in Halifax, Nova Scotia, Canada (BFA). Her film credits include – Director/writer and producer of the documentary, Back To Gombin which is in the permanent collections of the US Holocaust Museum and Yad Vashem – www.backtogombin.com. Packer was awarded as a distinguished Fulbright Scholar for her work on the film, The Lilliput, website at www.thelilliputmovie.com.
A recipient of The Nancy Malone award for excellence in directing, through New York Woman in Film and Television, she has also been awarded grants for her work from The Trust for Mutual Understanding, The New Jersey State Council on the Arts, The Gombin Jewish Historical and Genealogical Society, and the US State Department.
She has been a distinguished lecturer and professor at New York University, Jersey City State University, The University of Lodz, Poland, the Leon Schiller Film School, Jagiellonian University and Jerusalem University. For twenty years she chaired the art, art history and media department at The Hudson School- an independent school for gifted students in New Jersey.
In 2017 she was diagnosed with Early Onset Alzheimer's and retired from teaching. She participates in on-line social and educational webinars with Dementia Alliance International, Dementia Mentors and Dementia Action Alliance, and writes a blog, Suddenly Mad: My Voyage Through Early Alzheimer's. Since her retirement, she treasures the time spent with her family and baby granddaughter.
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