Like the character Oscar-winner Julianne Moore played to perfection in the film, "Still Alice," I was diagnosed at an early age with Alzheimer's disease.
It was less than five years ago, at age 46. I was struggling to master a new computer system at the hospital where I worked as an operating room nurse. That made me wonder but it was a difficult program by all accounts so I dismissed my difficulties and attributed it to being stressed and overworked. But after I put my own clothes into my son's drawer while folding laundry, stored an ice cream carton in the cupboard and forgot to pick up my kids from school on multiple occasions, I became concerned and scared. My forgetfulness led to a battery of frustrating tests, including an MRI, PET Scan and a spinal tap, which I do remember vividly.
In November 2010, after being evaluated for a range of health issues from a stroke and brain tumor to menopause-related amnesia, my doctor told me I had Alzheimer's disease. At first, I was relieved to know what was causing my symptoms. My brain was always my friend and now it was failing me. That relief gave way to anger and denial, and I locked myself in my room for days.
Since the diagnosis, I've learned there is life after diagnosis, as have my two college-age sons, my daughter, and my extended family and friends. I consider myself fortunate to have the support of so many and now work with the Alzheimer's Association to advocate on behalf of others like me. As part of this new role, I had the opportunity to work with Julianne Moore on her title role in the film, "Still Alice," advising her on her portrayal of a woman living with younger-onset Alzheimer's, down to the highlighter Alice uses in the film to track her place in a powerful speech she gives -- the same trick I use when giving a speech. The highlighter scene provides a small window into my larger struggles. I was always good at chemistry and math but I can no longer balance my check book and I now have trouble with spelling.
Does any of this sound familiar? Many of you may have had a family member who has been diagnosed with or who has died of Alzheimer's disease, or maybe you have seen "Still Alice." While this film, Glen Campbell's documentary, "I'll Be Me," and other recent heart-wrenching movies such as "Away From Her" with Julie Christie and "Iris" with Judi Dench have raised the visibility of the disease, Alzheimer's remains a mystery.
The facts about Alzheimer's are alarming: Alzheimer's is the sixth leading cause of death in the U.S. and it is the only cause in the top 10 without a treatment to cure, prevent or slow its progression. Almost two-thirds of Americans with Alzheimer's are women, and more than 60 percent of Alzheimer's and dementia caregivers are women. I have learned death rates for other serious diseases, such as heart disease, prostate cancer and HIV/AIDS, are actually declining. That is not the case for Alzheimer's. As baby boomers age, the number of people with Alzheimer's is projected to triple to 13.5 million by 2050, or 11 percent of the U.S. senior population.
I know there is growing support from Congress and the President for increased spending on Alzheimer's research but the disease remains severely underfunded compared with other serious diseases. As noted in a Lewin Group report, commissioned by the Alzheimer's Association, the scientific community recommends an investment of $2 billion a year in Alzheimer's research. This level of funding could dramatically change the trajectory of the disease.
This upfront investment would reduce the staggering costs of Alzheimer's to our families and our country. In my Alzheimer's support group in Minnesota, nearly every family has faced financial troubles, including bankruptcy. Many of us are who are younger-onset were in the prime of our lives when first diagnosed.
Others have done the larger math and the cost to the public is jaw dropping. Alzheimer's is already the nation's most expensive disease. By 2050, we will spend one in three Medicare dollars -- an estimated $589 billion -- on Alzheimer's. That is nearly all of what we spend on Medicare today.
As our country's smartest minds search for a treatment, there are small steps communities and states can take to keep us involved in our communities and contribute to the cause. I can tell you that we do not want to be put on the shelf -- many of us can still make valuable contributions.
And yet I know I will continue to surprise those who meet me for the first time. It's clear they expect to be greeted by a disheveled elderly woman who cannot put together a sentence and who wears mismatched shoes. They are not entirely wrong -- I do on occasion forget to apply make up to both of my eyelids, and yes, I have gone out of my home in two different shoes. But I have not let my diagnosis define me. I still have a sense of style -- and humor. Despite my diagnosis, I am "Still Sandy" Oltz.
For more information regarding Alzheimer's disease and what you can do to become involved please visit www.alz.org/mybrain.
Sandy was a consultant on the film STILL ALICE, using her experiences to provide research assistance both to the screenwriting and directing team and actress Julianne Moore who strove for authenticity in her Oscar-winning performance.
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