Did you know that by the age of 85 (if you’re lucky enough to live that long), the odds of getting Alzheimer’s are shockingly high? Statistics say that one out of every TWO people will hit the jackpot. Whoa. Say WHAT?!
Until last night, I’d assumed odds were very slim of being diagnosed with this insidious disease if there was no prior family history. But then again, if I’d taken the time to actually THINK about it, I’d surely have known better. (Right? Surely I would have, right?!?)
Because, back in the BC (read: Before Cancer) days, I also thought the odds of ever getting breast cancer, with no prior family history, were very slim. Turns out that was complete baloney.
Last evening hubby and I attended our monthly lecture series and the speaker was Dr. Lisa Genova. I have to admit, I had no clue who she was until I read the brief bio about her in the series brochure. So, assuming you don’t know who she is either, I’ll tell you.
She’s the neuroscientist (Ph.D. from Harvard, no less) who wrote the book ‘Still Alice’. It’s a novel about a woman in her early 50’s, who has a full and busy life until she gets upended by a diagnosis of early onset Alzheimer’s.
Dr. Genova’s manuscript was initially rejected by dozens of agents. (I think she said close to 100). The general consensus, if it wasn’t a standard reject letter of 2 sentences, basically came down to: No one wants to read a depressing story about a woman with Alzheimer’s.
So she decided to self-publish and sold copies from the trunk of her car, for several years. Finally a personal connection offered her an introduction to speak with another book agent, who agreed to read the manuscript. Although the odds of wide publication were still dauntingly slim, he decided to take a flyer on it and find a publisher.
The rest is history…a best-seller, ‘Still Alice’ was translated into 37 languages, and a few years later it became an Academy Award winning film.
Not only was Dr. Genova’s lecture last evening about Alzheimer’s Disease educational and highly enlightening, it was also engaging in the most unexpected ways. The audience was captivated for the full hour. Afterwards, the 30 minute Q & A left us all with much to think about and personally I was so impressed with her innate ability to not only convey complex science to a broad audience in a way that was easy to follow, but to also ensure we were fully engaged with what she presented.
We learned that Alzheimer’s begins in the hippocampus area of the brain, where emotions are regulated, particularly memory. Slowly over the course of several years, the disease atrophies the hippocampus, stealing memories both old and new. Because it can take years for Alzheimer’s symptoms to surface, it’s rarely detected prior to the changes in memory behavior that become noticeably unusual.
At very late stages of the disease patients will have lost the ability to swallow, because their memory of even the most basic functions are wiped out.
Dr. Genova decided to write a novel about Alzheimer’s after watching her beloved grandmother rapidly decline with the disease. Frustrated over lack of understanding, she decided to delve into heavy research. Rather than pursue the science of it, she went after the reality of it…the human experience.
Having sympathy for someone does not bring you enlightenment or understanding, even if you think you can relate in some way. And quite often, when it comes to Alzheimer’s (and this applies to late stage cancer as well), a stigma comes along with it. Alzheimer’s (and cancer) are scary subjects. People are afraid of what they don’t understand, so rather than truly engaging with someone diagnosed with a terminal illness, they tend to back away. They express sympathy, but don’t have the empathy to step up and truly engage in a meaningful way.
Dr. Genova spent 18 months speaking with dozens of Alzheimer’s patients, and maintained ongoing conversations with them as their disease progressed. During that time, she began to write the novel ‘Still Alice’ (at Starbucks!) with the intent of shedding much needed light on a difficult subject matter.
By creating a fictional character to personally narrate their own story and the ensuing odyssey of coping with initially subtle symptoms of confusion, then more advanced symptoms that became impossible to ignore, the character she creates brings us along to hear the stunning diagnosis of early onset Alzheimer’s, and the aftermath of it’s impact on those she loves the most; her family.
Dr. Cordova envelops the reader as she exposes them to the shocking realities of what it truly means to become diagnosed with Alzheimer’s Disease. Decline of the mind can be slow, but it’s always relentless as it continues to march towards ultimate death.
Though advanced stage Alzheimer patients will lose the ability to recall the names of their loved ones, and often revert to their earliest childhood memories until those too vanish, it is important to remember that they can still experience emotion such as joy, sadness, anger and even love.
Sadly, it’s not uncommon for people to walk away from their own family members who’ve been diagnosed with Alzheimer’s. It’s scary, so they back away from what they don’t understand.
“My mom has no clue who I am anyhow. She keeps telling me she’s waiting for her mommy to pick her up from school. I had to tell her, ‘Your mother has been dead for 50 years! She’s not coming for you.’ So, I just stopped going to visit, it’s pointless.”
But, is it?
The next key talking point of the lecture was a concept that Dr. Genova calls: Yes, and
It’s actually pretty simple. It’s not about you! So instead of finding fault or correcting what they’ve said, try saying “Yes and… “
“Yes and while we wait for your mommy, shall we have a cup of tea together?” This was the very example Dr. Genova used. Just play along. Step into their reality and experience the emotions with them. Even if you disagree, the dialogue can continue rather than end in a frustrating disconnect. When you experience someone else’s reality, you can actually gain empathy and that in turn brings compassion.
Yes and can apply to every situation in life. Every single one. It’s how we find common ground.
So, I’ve been thinking today about all the many things folks have said to me over the past almost five years…in their effort to be supportive of my own health situation. One of the most memorable comments made to me was when a woman who used to work with me blurted out one day that “coffee enemas can “cure” your cancer.”
I looked at her with probably a bit too much intensity before I finally said “And you know this how?”
Turns out her sister was “cured” using coffee enemas, which she began after completing chemo and radiation first for her early stage breast cancer. In hindsight, I now realize what I should have said:
“Yes, and did you know that if you brew a fresh cup of Folgers, pour it into your left ear canal, it will trick your brain into thinking you’re a kangaroo in the Australian Outback?”
*for those readers taking offense to this notion that coffee enema’s don’t in fact cure cancer, I suggest you just keep on doing your own enemas. Seriously, whatever floats your boat. Go for it!
So, what’s The GOOD News when it comes to Alzheimer’s? The gene risk: whether you carry a genetic component for Alzheimer’s or even if your parents both are/were gene carriers, this is not a guarantee you’ll in fact develop Alzheimer’s yourself.
There are in fact some things we can all do to lower our risk of Alzheimer’s (aside from making sure we die before we’re 85).
- Stay away from alcohol and smoking (do I sound like your mother?) Both are known risks for Alzheimer’s. Both literally reduce the health of your brain, not to mention the rest of your body at large.
- Stay cardio fit.
- Mediterranean diets are apparently proven helpful to reduce risk of Alzheimer’s. Who knew? or…did I…… just forget?
But if you just can’t manage any of those things…there’s still a glimmer of hope.
- Learn NEW things. Because the brain benefits from learning NEW things. Here’s some examples we were given:
- learn a new language,
- learn a new sport,
- read a new book,
- see a new movie,
- take up a new hobby,
- go on a new adventure.
All these new things help to restore some critically important brain cells that might have otherwise been lost for good to Alzheimer’s.
STOP DOING CROSSWORD PUZZLES! You are recalling things you already know. So just stop it, okay?
So, I came home last night and thought about my own life.
- I quit those silly crossword puzzles long ago when I realized I had no idea who the Hollywood hotshots were anymore,
- I’ve taken up a new hobby (watercolor and acrylics) that I am enjoying,
- I’m reading books of fiction and memoirs regularly,
- I’ve brought a German Shepherd into my home that simply needed consistent and clear direction (so that’s basically an ongoing devotional between this dog and her adoring humans), and
- I’m balancing my busy work life while also managing my never-ending schedule of cancer care. In that department, I have carved out time to become a volunteer for a wonderful organization in NYC called SHARE…they educate and empower women affected by breast or ovarian cancer by providing a multitude of support services.
Just this past week, a client remarked how well I looked, and she followed that up with “you must be doing really well.” I couldn’t think fast enough, so I simply smiled appreciatively and re-engaged with the task at hand, which was showing her the monthly financial reports.
But in hindsight, I should have replied with “Yes and thank you!”
Because I am doing really well. Godzilla and Portia both have my back. I’m blessed to have an oncologist who is in dogged pursuit of a breakthrough for Metastatic Breast Cancer. Do I understand the actual realities of this disease? Yes, and although I am living with them every day, I am still just so very grateful to still be living in the here and now.
Blessings to you all, dear friends. xo