When I was just 25 years old, my whole world was turned upside down. My mom, who was 62 at the time, was diagnosed with Early Onset Alzheimer’s Disease. I remember that phone call like it was yesterday, although it has been over seven years now. I immediately felt completely alone and utterly lost. I didn’t know anyone my age who had a parent with Alzheimer’s. I had heard a few people talk about a grandparent who had died of the disease, but never a parent. I felt like I had nowhere to turn and no one to confide in, so I Continue reading →
A few days before my sixty-first birthday, I was diagnosed with cerebral microvascular disease, which is the leading cause of dementia after Alzheimer’s disease. My mother also had dementia.
My diagnosis was not a total surprise—for about five years I had a short-term memory loss that led to pots on the stove at home boiling dry, washing my hair twice in an hour, forgetting to bake a casserole I had made the night before. At work, it led to a slowness in my job as the associate director Continue reading →
Without quite knowing it at the time, I began working on Her Beautiful Brain in 2004, when my husband and I made an award-winning documentary film about my mother called Quick Brown Fox: an Alzheimer’s Story, which has had a long life on PBS stations and remains in distribution through Women Make Movies, Amazon and other sites. Making Quick Brown Fox made me realize there was so much more of my mom’s story to tell than our film could contain. I also began to understand that, while I love filmmaking (which is what I do for a living), I have been a writer since I could hold a pencil and I longed to write much more than I was then writing as a filmmaker and occasional journalist. Continue reading →
When I was first diagnosed with early onset Alzheimer’s Disease and Posterior Cortical Atrophy in 2015, I wanted something to focus on. All my life I have helped others through being a nurse, and I still wanted to do that.
The brain needs stimulation to keep going, so after the initial shock at being diagnosed and the relief that it wasn’t MS as what I first thought and feared, I took stock of what I could still do, and if I couldn’t do something I persevered until I relearned old skills. I had an occupational therapist who used Continue reading →
When I look at the faces of my grandchildren and see the joy and blessing that they and my family and friends bring to me, I am determined to share this dementia experience! They love me just the way I am. What may at times look or sound silly, different or even disturbing, is explained and discussed, so we all work together, bringing mutual joy and learned compassion for the best quality of life, for everyone involved. Continue reading →