Where Are the Spoons?

It takes me three tries to find the silverware drawer. I hand my seven-year-old daughter a spoon. She finishes her cereal, brushes her teeth, and we’re ready to go.

I can’t remember where I put my shoes. When searching for them, I spot my daughter’s library books that I forgot to return. Again.

After I locate my shoes, I’m finally ready to leave the house but then realize that I don’t have my sunglasses. I walk in and out of every room, hunting, desperate, mad at myself. Unsuccessful, I resign myself to spending the rest of the bright, summer day squinting when my daughter announces, “Mom, they’re on your head.”

I don’t have Alzheimer’s. I’m thirty-six years old, pregnant, and just moved into a new house in a new town. I’m tired from the move and the pregnancy and keeping up with the ceaseless needs of my life and family. And everything here is still unfamiliar.

In the old house, the silverware was kept in the drawer next to the refrigerator. Here, it is to the right of the sink. In the old house, we kicked off our shoes by the front door. Now, the front hallway is littered with towers of boxes, so our shoes end up somewhere else. My routine has been disrupted, and the mental map of where I live is under construction.

It’s no wonder I’m forgetting things. What a relief it is to know that this is normal and temporary, that once we’re moved in, once we get used to life here, once I have the baby (okay, when the baby turns four), then I’ll grab a spoon every time I reach for one and without even consciously thinking about it.

I can’t imagine what it must be like to have Alzheimer’s Disease---to experience these types of maddening lapses in cognition AND to know they will only keep happening and get worse. It must be more than frustrating and exhausting. It must be terrifying.

I think about how quick I was to give up on finding my sunglasses and do without them, and I wonder how readily people with dementia decide not to bother, to give up looking for the keys, that word, that thing.

Imagine if I’d moved AND had Alzheimer’s. This is precisely what happens in many families. Living alone becomes too dangerous for a grandmother, father, or aunt with Alzheimer’s, or the work of commuting and running two households becomes too much for caregivers living elsewhere. How difficult it must be for someone already coping with an unreliable mind to move to a new home! I’m not saying it’s wrong to have your grandmother, father, or aunt move in with you or to a care facility. I’m just saying---it must be incredibly hard to find the spoons.

Lisa Genova, author of STILL ALICE, www.StillAlice.com

Enrich Your Life

A friend of mine once posed this question to a group of people with early-onset dementia:

“What do you do to enrich your life?”

What a brilliant question! We should all poke heads up from our jobs, responsibilities, and schedules, take a look around and ask ourselves this question. It’s a brilliant question for any human being but is especially challenging and critical for those with Alzheimer’s, when what has always been life-enriching is leaving.

Following the thread of the story in a novel or movie may become too difficult, lack of coordination or memory for sequential steps may render previously beloved hobbies like woodworking, gardening, playing chess, or knitting impossibly frustrating, an intolerance for too much noise may prevent dining at a favorite restaurant, and travel may become too confusing and tiring to make it worth packing for that tropical vacation.

If the ground you’re standing on has cracked, shifted, or eroded too much to enjoy those things that have always enriched your life prior to Alzheimer’s, it’s time to assess the landscape you’re standing on now. This is also true for caregivers, whose days can become consumed with running the household alone and nights with exhaustion and isolation.

For both those with dementia and those caring for them, what you lose can be staggering and more than mildly depressing. Finding new hobbies and passions, new ways to relax and connect with friends and loved ones requires courage, determination, and creativity. I invite you to share the adaptations and strategies you’ve found with others who have begun to look. However you are affected by dementia,

What do you do to enrich your life?

Lisa Genova, author of STILL ALICE, www.StillAlice.com

Hope in Your MRI

Over the past couple of years in my conversations with people with dementia, I’ve come across a lot of confusion over MRI’s and the diagnosis of Alzheimer’s. Many were surprised to learn that their brain MRI’s were perfectly normal AND they had Alzheimer's Disease. One woman was told by her physician that because her MRI was normal, she couldn’t possibly have dementia.

The truth is, especially if you’re in the early stages of Alzheimer’s, there will likely be no cellular loss visible on your MRI. You can be forgetting how to drive home a mile from your house and the MRI image of your brain can look completely normal. How can this be?

It used to be the standard thought that amyloid plaques and/or neurofibrillary tangles got deposited in the brain, and these deposits “gunked” up the neurons and caused them to die. And this neuronal death caused Alzheimer’s.

Here’s the new thinking.

The cognitive deficits–the symptoms of dementia–occur BEFORE the plaques form, before the neurons die. In the brain of someone with Alzheimer’s, there is too much of a soluble protein called Amyloid Beta 42. Either too much is made or not enough is cleared away. When too much is present in the synapse, these individual little peptides stick together and form small oligomers. These oligomers of Amyloid Beta 42 lodge in the synapses and interfere with synaptic transmission—the ability of neuron #1 to give it’s electrochemical information to neuron #2. Through a complex molecular cascade, these oligomers are specifically impairing neurotransmission through NMDA receptors, a very important kind of transmission necessary for something called Long Term Potentiation.

So these oligomers of Amyloid Beta 42 lodge in synapses and prevent good neurotransmission from neuron #1 to neuron #2. And behaviorally, new information isn’t learned. Or old information can’t be accessed. Synaptic plasticity suffers. Over time, because these synapses aren’t working properly and because of inflammation and other problems, those nerve axon terminals will retract. Eventually, unable to function, the neurons will die, leaving behind empty space (the atrophy seen on an MRI) and possibly heaps of Amyloid Beta 42 in amyloid plaques.

So it all starts as an attack on the synapses. The degree of dementia correlates only with synapse dysfunction, not with neuronal loss, not with number of plaques, not with atrophy on an MRI.

The cure for dementia then, the kind of treatments that will be disease-altering, will
1. Impede production of Amyloid Beta 42, or will
2. Increase clearance of already-produced Amyloid Beta 42, or will
3. Prevent Amyloid Beta 42 from sticking to itself so it can’t form oligomers, or it will
4. Rip these already-formed oligomers apart.

The beauty and the hope in all of these treatments—people suffering from symptoms of dementia can be treated BEFORE they’ve experienced any neuron death. If the synapses are fixed, neurotransmission can work again. Function can be restored!

Lisa Genova, author of STILL ALICE, www.StillAlice.com

Away From Her

Last night, I saw the movie AWAY FROM HER starring Julie Christie (Fiona) and Gordon Pinsent (Grant). Fiona, a bright and active woman, develops Alzheimer’s disease, and the story explores what happens to her relationship with her husband and what remains of the love in their 44-year marriage as her shared memories of their life together disappear. The movie is respectful to many of the realities of living with Alzheimer’s and doesn’t commit Fiona instantly to vacant oblivion. Christie delivers a powerfully authentic performance, revealing layers of awareness colored by confusion, embarrassment, panic, humor, and resilience through an ever-thickening fog of dementia. And Pinset’s portrayal of her husband’s denial and then heartbroken devotion are believable and moving as well.

I fully recommend the film, but I do think it simplified a lot. For example, although we see what Alzheimer’s does to Fiona and Grant, their story contains no children, no siblings, no friends or colleagues, no grandchildren. In my family and in others I know, the impact and loss from Alzheimer’s are felt not just by the person with dementia and his or her caregiver. It ripples through the family, through friends of family, through the community they live in. And it affects everyone differently.

What did you think of the movie?
How has Alzheimer’s affected you?

Lisa Genova, author of STILL ALICE, www.StillAlice.com

How Did I Get Here?

How did I get here? So many of my roads have led me here, it must be inevitable. Let me start at the beginning.

Inspired by the stories by Oliver Sacks and a curiosity for understanding how the brain works to affect behavior and reveal who we are, I entered the graduate program in neuroscience at Harvard in 1994. I quickly became interested in the mechanisms underlying addiction, how the same drug administered chronically could hijack our natural reinforcement systems and dissociate wanting from liking. My lab bench was just down the hall from Rudy Tanzi and others who were working to crack the genetic code for Alzheimer’s. I graduated with a PhD in the spring of 1998 with a keen interest in the Alzheimer’s research being conducted down the hall, but I wouldn’t say I’d been directly touched by Alzheimer’s disease yet. That came next.

Looking back, my 85 year-old, widowed grandmother had been showing signs of dementia for years. But she was a smart and active woman, and she navigated around her symptoms with great skill for some time. And her nine children, their spouses, and her grandchildren were all content to look the other way or to pass off her cognitive mistakes to normal aging.

Then we got the phone call. She’d walked to the bowling alley at four in the morning, insisting it was middle of the day and wondering why no one was there. It was quite literally the wake-up call that forced my family to look directly at her and what was going on.

Her daughter, my Aunt Mary, moved into her house (along with my Uncle Barry) and began working from there. Her other daughters, my mother, and, less often, I came over to help out. With nothing we could actually do to alter the course of her disease, like spectators we all watched Alzheimer’s systematically disassemble the woman that was my grandmother. Ironically and almost immediately, she forgot who my Aunt Mary was. When we told her that she was her daughter, Mary, I was struck by how she never believed us and that this didn’t ruffle her. Before Alzheimer’s, if you’d told my grandmother that someone was her child who she believed wasn’t, she most certainly would’ve argued with you or laughed at you or both.

She was losing herself. I watched her studying her own face in the mirror, not comprehending the old woman’s face she saw. She didn’t know her last name, the time of day, to remember to go to the bathroom when she needed to, who her children were, who I was.

But although she lost her history and couldn’t understand who we were or why we were there (she told people my Aunt Mary was a homeless woman who’d wandered in to live with her), there were parts of my grandmother that never left her. As she always had, she loved lively company. We’re a loud, Italian family. She delighted in having us there, sitting around her kitchen table, eating, laughing to tears, telling stories. And she remained good-natured and good-humored, always willing to participate. Here’s one of my favorite exchanges—

Aunt Mary: Come on, Ma, we’re going to the movies.
Nana: Okay, I don’t know who you are, but I’m coming!

The reasons why her family loved her, the reasons why we are connected, disappeared for her, but they didn’t for us. We continued to love her, and she accepted it. She understood our hugs and kisses and smiles and returned them with great enthusiasm. I know she felt included and loved to the moment she died. I know this is my Aunt Mary’s proudest achievement in life.

So I have a background in Neuroscience and a grandmother who had Alzheimer’s disease. I’m on the road to here but not quite here yet. There were a couple of additional avenues I needed to travel first.

As I visited with my grandmother, the neuroscientist in me became fascinated with her progressive dissociation from her concept of self. I wondered what it must feel like, when those parts of the brain that inform awareness and identity become increasingly inaccessible, and I wished I’d thought to ask her more when she had the communication skills to describe it to me. A lover of learning and knowledge, she would’ve readily considered my questions. What is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? This question was the seed of the novel I would write.

I needed to meet people with Alzheimer’s in the early stages, people who could still describe what it’s like to have dementia. I found them at www.dasninternational.org, an online community of intelligent, articulate, and passionate people in their forties, fifties, and sixties with dementia who support each other and advocate for better care and a cure. They bravely shared their most vulnerable experiences, helping me to create a fictional story about a young woman with Alzheimer’s that is in every way possible faithful and respectful to what having Alzheimer’s is actually like. To these amazing friends of mine, I owe my deepest gratitude and admiration.

When I began the book, I thought I was writing a story as a neuroscientist in honor of my grandmother and family. And I thought that when I finished, I’d quickly move on to other endeavors. But in the course of writing the book, my eyes were opened to more than I’d expected. I see what people with Alzheimer’s and their loved ones struggle through, emotionally, physically, and financially. I see how difficult getting a proper diagnosis can be. I see how ignored and outcast people with Alzheimer’s become. I see how close we could be to a treatment that can stop this disease in its tracks. Seeing what I see, I knew I’d be sticking around.

I’m a neuroscientist, granddaughter, friend, and author. And I’m here. How did you get here?

Lisa Genova, author of STILL ALICE, www.StillAlice.com