Ep 86: Muffy Walker, Author of "Memory Weavers"

This episode of BrainStorm by UsAgainstAlzheimer's features Muffy Walker, a psychiatric nurse, and founder of the International Bipolar Foundation.  Her new novel Memory Weavers is based on her professional and personal experiences caring for family members with Alzheimer's disease and issues of mental illness that inspire her advocacy work. Her novel explores how one person with fading memories from Alzheimer's and another with PTSD, who can't escape traumatic memories, find and support each other. 

Along With BrainStorm host Meryl Comer, Walker delves into the persistent stigma surrounding both conditions, the challenges of caregiving, advances in early diagnosis through genetic testing, and the impact of intergenerational trauma. Her novel includes valuable resources now available to patients and caregivers that weren't accessible when her mother was diagnosed 23 years ago. This is a must listen episode!

Transcript

Muffy Walker (00:01):

It's interesting, isn't it? How with Alzheimer's, the short term is the first to go, but something that's been there for years and years and years is still around. I'll never forget when my mother was doing one of her cognitive tests, she was asked the name of the dog who sat by Roosevelt's side, and of course I had no idea what anyone was talking about, but bam, she had it just like that. But ask her what she had for dinner. No idea.

Opening (00:30):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient center, nonprofit organization. Your host, Meryl Comer, is a co-founder 24 year caregiver and Emmy award-winning journalist and the author of the New York Times bestseller, slow Dancing With a Stranger.

Meryl Comer (00:47):

This is BrainStorm and I’m Meryl Comer, scratch the surface of our lives and too often there is pain that won't let us rest. It's often the reason that so many of us become advocates after disease strikes us personally or someone we know and love. Joining us today is Muffy Walker, a psychiatric nurse by training and founder of the International Bipolar Foundation. Her new book, memory Weavers Laces Advocacy with fiction as she explores Alzheimer's trauma and mental Illness. Welcome, Muffy. Thank you so much for joining us.

Muffy Walker (01:25):

Thank you, Meryl. I'm excited to be here today.

Meryl Comer (01:28):

Muffy, how has your clinical background in psychiatric nursing over the years informed your advocacy work around mental health?

Muffy Walker (01:37):

I have been doing psychiatric nursing for several decades and during that time one of my family members was diagnosed with early onset bipolar disorder probably 25 years ago, and there really were no resources available and I, as a psych nurse and my husband, a physician, found ourselves floundering in order to navigate the system. So I met so many other educated people who were facing the same experience and we decided we needed to have an organization to help the caregivers and the persons with the diagnosis.

Meryl Comer (02:10):

You have written extensively about stigma. What changes have you seen in public attitudes when it comes to diseases like Alzheimer's, which is the most common form of dementia and what work remains to be done?

Muffy Walker (02:25):

I hate to say that I have not seen as much change. I have not seen the needle moving as much as I would like, both in mental illness and neurological disorders. When my mother was diagnosed with Alzheimer's disease over 23 years ago, it was something that you didn't talk about, you didn't tell your friends and family members. And I still see that today. I have a dear friend who I play pickleball with on a daily basis and he never ever mentions that his wife has dementia. So I would like to see much more awareness and realizing that this is just a disease of another organ, just like diabetes is a disease of a pancreas.

Meryl Comer (03:07):

You know, if you go back 23, 24 years, my husband was misdiagnosed for four or five years too young to smart, too strong. So it made that journey very difficult and it continues to be difficult for many, many families. What inspired you to write memory weavers and why a novel and not nonfiction?

Muffy Walker (03:28):

Well, I've written quite a bit of nonfiction in the mental health space. I've written chapters in books and done a lot of speaking and articles about stigma and patient advocacy. But one day my mother was sitting in the living room, she had already been diagnosed with Alzheimer's and she was sitting with our family member who had early onset bipolar disorder and each thought the other had the better of the two diseases and uh, my mother said we should trade brains <laugh>. And I don't know why, but a light bulb went off and I thought, well there's a story. That's where I started to write the book and it was originally two protagonists, one with Alzheimer's and one with bipolar. But as you know, they don't really share that much in common, especially around memory. So I changed the second protagonist to having PTSD and kind of the flip of Alzheimer's, somebody who doesn't want their memories

Meryl Comer (04:21):

Probably. Based on your experience, do you think that caregivers suffer their own form of post-traumatic stress?

Muffy Walker (04:28):

Absolutely, absolutely. Interestingly enough, in my work as a psychiatric nurse, I worked in a really small niche working with patients of multi-generational cult abuse and we had such secondary PTSD that we had to get therapy ourselves for the secondary PTSD and for me personally with my mother and now my mother-in-law who has Alzheimer's, I don't feel that burden, but I am a nurse and it's my space, but I think for somebody who doesn't know that world, it's quite a burden to care for someone. Emotional burden, physical burden, it's a lot.

Meryl Comer (05:05):

I read an article where you attribute 80 to 90% of the memory issue examples in the book to your personal experience with your mother. Can you describe the relationship between a mother and a daughter? Why does it feel so complicated? Emotionally?

Muffy Walker (05:23):

I'm not sure I know the answer to that. You know, you love the person so much and you're seeing them in so much pain and my mother had a friend who had early onset and she knew what was coming and I think that was very, very painful for her to know what each step was going to be along the way. And that in turn was painful for me and watching her slip away.

Meryl Comer (05:45):

How did the emotional and practical needs of families of loved ones with Alzheimer's disease differ to those managing a loved one with a mental illness?

Muffy Walker (05:57):

I don't really see too many parallels between the mental except PTSD, of course the parallels of mental illness and dementia. As you know, the person with Alzheimer's or form of dementia for a while goes about their life on a regular basis. And during my mother's time, there were very few therapies or medications available, so she took maybe one or two pills a day and still went to book clubs and tried to play bridge. But for the person with the mental illness, we know so very little about, they're taking a lot of medications, most of which are off-label and they're in all kinds of therapies, individual therapy, group therapy, family therapy, maybe they're hospitalized voluntarily, maybe against their will. I see it as a much different journey for someone with a mental illness compared to someone with dementia.

Meryl Comer (06:43):

Does your advice to families caring for loved ones change and in what ways?

Muffy Walker (06:50):

You know, I don't really think that it does change that much. I always referring people to resource groups, support groups, caregiver groups, literature, the best physician, the best psychiatrist, and I think we do that the same, whether it's a mental illness or a neurological disorder of dementia for the person with the diagnosis, there's all kinds of things that maybe you put up sticky notes all over, did you turn the lights off? Do you have your keys? Is the kettle off? And maybe with the person with the mental illness, you're leaving sticky notes around, did you take your meds, have you done this? I think there's more parallels in that regard.

Meryl Comer (07:28):

Memory leavers, features, genome sequencing as a plot device. What drew you to include it and what conversations do you hope it sparks about genetics, mental health, early diagnosis?

Muffy Walker (07:41):

That's a great question, Meryl. While I was writing the book, a friend of mine had a grandma mal seizure, crashed her car and went to the emergency room to learn that she had a pear shaped glio sarcoma or a brain tumor crossing the midline of her brain. And I thought, well, how could she have been going along day to day without any symptoms? So I asked my husband, as I said, who's a physician, and he said, well, you know, sometimes these cancers just kind of perk along and then bam, they really metastasized and she had the seizure. And I thought, well, gosh, I don't, I don't want a tumor just perking along, <laugh> in me, I want to know. So I decided to go to Craig Venter's Institute. Craig Venter, of course is one of the two who first sequenced the human genome and I had a full brain and body MRI, full genetic sequencing, echocardiogram, blood microbiome, everything through that process when I was thinking, when I went in for my results, oh my gosh, I could find out that I have early onset Alzheimer's or Parkinson's or any number of diseases, and that's how I incorporated it into my book.

Muffy Walker (08:46):

In the book memory, weavers Hadley at the age of 47 gets genome sequencing for she and her husband as a present to be proactive, to stay on top of it and learns that she has familial Alzheimer's disease.

Meryl Comer (08:58):

So what advice would you give to others that are toying with the idea? Because early diagnosis has become so critical when you look at Alzheimer's disease, you need to know your numbers.

Muffy Walker (09:11):

That's right. Live with what you know. And I think that's an individual choice. Now that we have all the news about the new blood test for Alzheimer's and cerebral spinal fluid, I've already out there looking for a place in my area that will do that blood test because I want to know, of course, genome sequencing doesn't tell the regular dementia, that just tells the early onset. But I do think it's a personal choice because once you learn that that's another big burden that you have to carry

Meryl Comer (09:38):

For decades, knowing your genetics or biomarker status didn't come with any treatment options today it does. Can you contrast the conversations you used to have with patients and what they're talking about now?

Muffy Walker (09:52):

You know, in my personal experience, I'm still seeing the same. When I, when I mention it, you know, I get 50% or whatever that say, I don't want to know, and I get 50% that say, I do want to know and I want to be proactive and I'm going to get on every single treatment trial therapy there is. It's a frightening dimension. I think it's something that each person needs to make that decision for.

Meryl Comer (10:16):

Both protagonists in your book face significant mental health struggles and you write Muffy with both authenticity and sensitivity. Why was fiction the right choice to write about depression, trauma and suicidal ideation?

Muffy Walker (10:33):

It's a good avenue to open up these discussions. Dr. Craig Venter and Dr. Scott, small head of research at Columbia have endorsed the book and have said that it is both neurologically and scientifically sound and correct, which is what I wanted to portray. I wanted true information portrayed. I have a lot of, I call them book club discussion questions where we can delve into these issues about assisted suicide, which is what something Hadley with the Alzheimer's wants, all of the pieces that go along with the caregivers and her three children that have a 50% heritable chance of getting that gene. So I think it's a great discussion point, and maybe you're just reading just because you like to read and it's fiction and somebody recommended it, but at the end of the book, you will have learned a great deal of information.

Meryl Comer (11:23):

Mfe, you also deal with the intergenerational impact of trauma. Can you talk about that a bit more because I think that gets missed too often.

Muffy Walker (11:33):

Well, I think that all came from my experience working with these cult abuse survivors and then also we had history of sexual abuse in my family by an unknown person, and when I was in nursing school, one of the girls on my floor was raped, and so I took those experiences and molded them to fit Rachel, who's the other protagonist in the book with PTSD having been raped in college. We do know that there is a history from generation to generation of abusers, and we want to stop that history. The book, Colleen Hoover, it Ends with Us, is about stopping that generational history. So it's just yet another topic that I wanted to bring to the forefront and really I wanted to erase the stigma around it.

Meryl Comer (12:20):

Your book also highlights and reinforces the importance of seeking help and that profound connection and impact of support in navigating these challenges is the power of human connection and healing part of your message to everyone?

Muffy Walker (12:37):

Absolutely, absolutely. And Meryl, you might know this better than I, but I think if I remember correctly, one of the, I won't say it's a factor that causes you to get Alzheimer's, but certainly contributes, is this lack of social connection. We know that we need that social connection just for our own wellbeing and to decrease depression and anxiety. I think for instance, for my mother that my father left when she was at their 25th wedding anniversary and she was alone. And I think that that was probably a contributing factor.

Meryl Comer (13:11):

You know, your goal is to protect a loved one's dignity, so you pull them away, but as a caregiver you're also isolated as well, and it's the intensity of care over years that I think really takes its

Muffy Walker (13:25):

Toll. Yes, the majority of people with Alzheimer's are women and we know that the majority of caregivers of people with Alzheimer's are women, and so we do take on that additional burden lovingly, but we do take that on. I've been caregiver for the person with the mental illness, my mother with Alzheimer's and my mother-in-law with Alzheimer's and a nurse, so I've got like a quadruple whammy <laugh>. I recently did a talk with Dr. Small from Columbia and he was talking about how we need both to remember and to forget and we need to clear out some of those memories that we don't necessarily need anymore. It's interesting, isn't it, how with Alzheimer's, the short term is the first to go, but something that's been there for years and years and years is still around. I'll never forget when my mother was doing one of her cognitive tests, she was asked the name of the dog who sat by Roosevelt's side, and of course I had no idea what anyone was talking about, but bam, she had it just like that. But ask her what she had for dinner. No idea.

Meryl Comer (14:26):

Puff on your book tour, when you travel around the country, you often team up with a doctor. Tell me why.

Muffy Walker (14:32):

I'm glad that you asked me that question. My mother was diagnosed with Alzheimer's 23 years ago when there was very, very little available. At the time, there were only two medications, one of which she had to get from an AIDS activist site in New York. And my book is based in the late nineties, early two thousands, again when we didn't have all of these advances. So when I speak about my book, I really want to leave the audience with hope of all these transformational changes and treatments and research that are taking place now. I want to have a scientist, a research scientist by my side who can then inform the audience of these wonderful advances that we are making because I believe, I truly believe in my heart that we are very, very close. We are very close to having this not be a debilitating diagnosis

Meryl Comer (15:22):

As a psychiatric nurse. With that perspective, what's the new conversation you have with our generation?

Muffy Walker (15:30):

It's referrals for people to get the cognitive testing. I say the little examples that we hear all the time. It's not if you lose your keys, it's if you find your keys and don't know what they're for. I was just helping somebody check in for an appointment and she had to go through a whole list of like 20 questions about do you do this? Do you remember that? And she said, well, this is silly. And I said, no, actually, this is good. This is a good screening tool and I, I would like to see these in every doctor's and nurses' office. I'd like to see that I point people in the direction of organizations like Alzheimer's Association and us against Alzheimer's and A TRI here in La Jolla, the Alzheimer's Therapeutic Research Institute. There's a lot of great information out there. People just need to know to look for it, to go to it. There are 800 numbers. There are support groups, there are caregiver support groups, they're our buddies. There's a whole guide system now where we help people once they receive the diagnosis. And I think these are all wonderful resources. These were not available when my mother was diagnosed.

Meryl Comer (16:36):

The reason I asked you why you had a doctor by your side is that from my experience in the hospitals with my husband and my mother, it was always the psychiatric nurse who was the most empathetic and helpful.

Muffy Walker (16:50):

Thank you.

Meryl Comer (16:51):

<laugh>, what insights do you hope readers take away from your novel memory weavers?

Muffy Walker (16:56):

I really tried to write the book from a reality standpoint so that when the person is finished reading the book, they will have resources. There's actually a resource section in the back of the book. They'll be able to read and understand and empathize with the caregiver, what the caregivers are going through. Not only the caregiver of Hadley with her Alzheimer's, but with Rachel and her prior rape. I just encourage people to reach out and share their story with someone, someone they trust and get some help, because just like they say, put on your oxygen mask first. You really need to take care of yourself if you're going to be a caregiver.

Meryl Comer (17:34):

Our guest is Muffy Walker. Her must read new novel memory Weavers also has a valuable list of resources on Alzheimer's rape, post-traumatic stress, Muffy. I think it's fair to say that once an advocate, always an advocate. Thank you again for joining us. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.

Closing (17:59):

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