Keto for Brain Health: A Dramatic Personal Journey
An inspiring story of one family using ketogenic therapy to treat dementia and eventually regain their lives
Interview by Bret Scher, MD featuring Annette Bosworth, MD, Mary Kowalczyk and Suzi Kowalczyk
(This post is a transcript from an interview Dr. Scher did with Dr. Annette Bosworth (MD), and her patients, Mary and Suzi. Dr. Bosworth is an Internal Medicine doctor, author, and educator who helps reverse medical problems with ketogenic therapy.)
Today we have a real treat: an inspiring story of one family getting their daughter and their lives back from the cognitive decline that comes with an Alzheimer’s disease diagnosis.
But this is so much more than that. For starters, Suzi, the daughter, was diagnosed with Alzheimer’s at the young age of 43, and Suzi was already at a cognitive disadvantage as she was born with Down syndrome. But having Down syndrome wasn’t a barrier to Suzi and her family living a full and enjoyable life.
That is until the cognitive decline of dementia and the associated seizures started.
Then, Suzi and her family’s quality of life quickly eroded. But thanks partly to a connection with Dr. Annette Bosworth, Mary and her daughter, Suzi, experienced a complete turnaround for their health (and subsequently, their quality of life) simply by starting a ketogenic diet.
So is this episode all about saying how a keto diet cures Alzheimer’s or even Down syndrome? No, of course not. That’s far too lofty of an expectation. Instead, it serves as an example of how therapeutic ketosis can improve brain function.
I’m purposely vague about the term “brain function,” or “brain health,” because as you’ll hear in this episode, ketosis doesn’t treat a specific diagnosis like seizures or OCD or anxiety or even cognitive function. Rather, ketosis can potentially improve the brain’s overall function, which can then impact all these conditions.
And that is what appears to have happened for Suzi. So it’s a pleasure today to share interviews with Suzi’s mom, Mary, with Dr. Bosworth, and the real treat: near the end, you’re going to hear an interview with Suzi herself, get to meet Suzi, and see a demonstration of the clear love and affection between a daughter and her mom, something that probably wasn’t able to be demonstrated before starting this keto diet (you may not get the full experience by reading the transcript, so we recommend you watch the YouTue video as well!).
But let me set the stage before we share this heartfelt, incredible interview. First, please remember: our channel is for informational purposes only. We’re not providing individual or group medical or healthcare advice or establishing a provider-patient relationship. Many of the interventions we discuss can have dramatic or potentially dangerous effects if done without proper supervision. You should always consult your healthcare provider before changing your lifestyle or your medications.
Now, here’s the backstory: Suzi was born with Down syndrome and the associated cognitive delay, but that didn’t slow her down. She was always very involved in church, and she participated in the Christmas play every year, and she rode horses and even did some barrel racing.
Perhaps more importantly, she had a very loving and interactive relationship with her mother, with her sister, with her family. But at the age of 43, Suzi experienced a significant neurologic and cognitive decline, as you’ll hear her mother describe, which dramatically changed her life and that of her family members. She also had severe obesity with a body mass index of 46.
So she and her mom started a whole foods, paleo-style diet, and Suzi lost a significant amount of weight, dropping to a body mass index of 27, which is a remarkable weight loss. But her neurologic function continued to worsen.
So then, Mary discovered nutritional ketosis with multiple health benefits, and with the help of Dr. Annette Bosworth, she took the leap to start Suzi on a keto diet as well. She was ready for it to be a challenge, and it was, but the results will speak for themselves: a radical transformation in their lives. Mary got her daughter back, and Suzi got her life back.
So let’s hear from Suzi’s mom, Mary.
(I apologize for any confusion in the interview, but in the published case report, they chose to refer to Suzi by her mom’s name, Mary, for privacy. In Dr. Bosworth’s interview, she also refers to her as Mary a little bit, but since the publication, Mary and Suzi have decided to use Suzi’s real name. So I apologize if there’s any confusion, but hopefully it becomes clearer throughout the interviews.)
Well, it really started from both of us being very sick a decade ago. We were both very, very heavy. Suzi weighed almost twice what she weighs now, and I was 120 pounds overweight, and I was very sick.
I had all the things that come along with being very heavy, and honestly, I probably had mild cognitive impairment as well. Someone told me about nutrition and some things that might help, and I went on a whole-foods diet, and that really, really, really helped us very quickly as far as physical health and everything, but it didn’t really change her mental state.
At that point, she was fairly normal for having Down syndrome with her history and everything. But in, I think about 2015, I started noticing some changes with her. She had lost quite a bit of weight, but she was still a little bit overweight, and I noticed some changes in her judgment. And she had gone from being able to be in Special Olympics and swimming and track, and she used to take care of the horses that we used to have on the property and the dogs.
She didn’t ever have a job, but she always had lots of activities in her lifetime. She used to barrel race on the horse, and the crowd used to often say, “Suzi, go the other way,” because she would sometimes go the wrong way. So it wasn’t with a lot of proficiency, but she really had a good time and that sort of thing. And she’d volunteer at church.
But at one point, she started having strange judgment choices of things like going out in the middle of a thunderstorm to do yard work. You know, raining and thunder. I didn’t know she was outside and my neighbor called me, “Did you know that Suzi’s outside picking up yard debris?” I was like, “Oh my goodness.” So at first, it was just a matter of her behavior changing. It wasn’t like she was forgetting things, but she would just, her judgment would be impaired.
And then she started taking things from the store that she didn’t pay for, and she had never done anything like that before. And she didn’t seem to understand that there was anything wrong with it. She was proud of it. She was like, “Look what I got,” and she would’ve previously not done anything like that.
And then, we started having problems with food. She’s always been obsessed with food, but she started eating things that were not cooked that should have been cooked (like meat) and getting things out of the trash can and that sort of thing. It was very upsetting, and I had to keep an eye on her. She went from being able to take care of her personal hygiene to me having to be with her during most of her hygiene activities. She didn’t like the shower any longer unless I was there with her. It was scary. Water was scary for her. And just everything was. She was anxious about everything.
She started losing skills. She started losing words or she couldn’t really always tell me what she was trying to say. And even though she’s got a speech impediment and it is difficult to understand her a lot, I could usually understand her. She would sometimes say something that sounded like she was trying to say a word, but it wasn’t even comprehensible by me or any of us that knew her really well. It was those kind of things.
And so we went from her being able to be left at home for a few hours while we went someplace to not being able to. She nearly burned the house down one day, and we went, “Okay, this is not going to work.”
So life got pretty scary for a while. We eventually found a resource where there was a daycare and a memory care place that had another woman with Down syndrome that we knew. She was there for, I think, close to nine months.
It’s heartbreaking to hear the story of Suzi’s decline and its impact on Suzi, on Mary, and on their whole family. Suzi went from relatively independent to almost burning down the house, and to eating food out of the trashcan and having to be placed in a memory care daycare center, and all this despite eating better and losing a significant amount of weight.
So it’s truly heartbreaking, and the response Mary got from Suzi’s doctors was to make sure she didn’t have any vitamin or nutrient deficiencies and then to start medications. Unfortunately, they didn’t see any improvements, but they were able to connect with Dr. Annette Bosworth and Dr. Bosworth’s free keto seminar she held in the local bowling alley party room every Tuesday morning.
And I’ve got to say, this says a lot about Dr. Bosworth. She’s creative and she’s scrappy. I mean, how many doctors do you know who run a free keto training seminar in a bowling alley’s party room on a Tuesday morning? Well, Dr. Boz does, and thank goodness she does.
Here’s Mary again:
I started having symptoms again of my illness. I had been diagnosed with myasthenia gravis, and I was actually using a wheelchair for quite a few years back in 2012. I’d started to feel like I was getting sick again, so I started looking for new dietary changes to make. I went online and found out more about the ketogenic diet, and I started doing that.
After I had been doing it for a few months, I ran across her YouTube videos, and I was thrilled when I found out that she had moved from South Dakota to Florida. I was willing to drive all the way across the state to go and see her because I had learned so much from her on her YouTube videos and the thought of being able to ask her questions and hear what other people were asking her as well…
And then, after I had been going there for a few weeks, I decided, “Well, I don’t know if I can do this for my daughter or not” because I didn’t know if she would tolerate getting rid of even the few carbs that she had left in her diet that were a problem. I wasn’t sure if she would be able to tolerate that or not. And she encouraged me to test or make sure she was in ketosis and to measure her food to make sure that she was getting enough fat for her brain health. Very quickly we saw some changes, very quickly.
And now here’s Dr. Bosworth with her perspective.
So Mary shows up, she drives two hours in the state of Florida to be at this eight o’clock meeting. Actually, Mary’s mom does. And so she shows up and she has had success watching the YouTube videos, reading the books, following the worksheets that I put out there. And now, she wants to come to the support group because she has some questions.
And she has good questions. Like these are good, advanced questions about brains and healing. The second week, she’s asking questions about Down syndrome. The third week, which today is the 25th, right? Yeah. So this would’ve been a year ago last week, she asked me, “My daughter has Down syndrome. And we followed this low-carb diet for the last four and a half years because her memory started to go, like many people with Down syndrome. She got officially diagnosed four years ago, and the first person that asked us to lose weight was using low carb with 100 carbohydrates in the diet. After a while, we plateaued and she wasn’t losing any more weight. Then, I read a little more, and we went down to 70 carbohydrates per day. Then, about a year ago when I was watching your stuff, I started doing 20 total carbohydrates or less, but that’s just awfully restrictive for my daughter, so I kept her on 50 and she did lose a little more weight.”
And I said, “But I hear you.”
So I was answering questions about brains and brain repair, about how to get best peak performance, about anxieties and depressions. By this time, her daughter has lost all this weight, but she looks gray. She looks ashen in the pictures if you look at them closely.
She’s lost the weight, but her mental health has gone in the wrong direction. Her obsessions, which had been difficult in her life, were back in full force and she couldn’t change the outfit anymore. She had one outfit that followed the criteria that she could follow. She had lost control of bowel and bladder by this point. Her frontal lobe was now affected because she couldn’t reason through that the food in the garbage wasn’t edible. That’s not okay. She just couldn’t follow that rule, and lots of other things.
Now, they had her on 24-hour care, seven days a week, where they used to leave her home for hours because she was pretty functional.
Well, already, it’s a gripping story, but I don’t want to gloss over the weight loss part, because you said she lost the weight. But in the case study, it says she went from a body mass index of 46 down to 27.
And then, she reduced her carbs further down to 25. I mean, that is a dramatic, dramatic weight loss.
If you’re going to go through the pain of limiting her life and having to push back against the social issues that I’ve seen over and over again in other disabled journeys, you just have to document that you’re doing it for a worthy cause, which means she’s actually in ketosis.
And praise be, she did it. I had no expectations that she would have such an improvement because you’re like, “There’s no case studies about this. I’ve got several Downs patients. She’s already lost the weight.” Then, she’s two hours one way and doesn’t miss a visit for the next two months because she’s like, “You’ve got to help me. You’ve got to see this. You’ve got to see this.”
Mary’s very excited about what she’s seeing at home because, by the time she’s four years in, Suzi is now having what is diagnosed as absence seizures. She has these times where she stares off into space, and then has incontinence. It was probably about three or four a day at that point. So pretty frequently.
And she was on some Lamictal at the time. The Lamictal might have decreased the frequency to two a day, but they weren’t gone. So the first thing that Mary notices is she’s not doing that anymore and that she goes to the toilet. This is something she used to do. She hadn’t seen her do that in a couple years. And all within 10 days of being in a ketogenic state.
And mom’s brilliant. She has the cupboard locked. She has everything. She knows exactly how many carbs she’s having so Suzi hits really strong numbers. Her glucose was not terrible, but maybe in like nineties for morning fasting. Over the course of these next six weeks, the sugars come down into the eighties, and the ketones are pretty solid.
So with nutritional ketosis, the improvements started rapidly and dramatically.
Now here’s Mary again, discussing the improvements she started to see in Suzi.
She became more alert and more focused within days, and it seemed like it happened so fast. I think at least within two weeks, I saw no signs of her [seizures.] She was having nighttime seizure-type activity. She would wake up and tell me that her hands were shaking and that her head was shaking.
Previously, she had partial complex seizures years ago, so I was familiar with the different things that she used to say whenever she was having seizures. And she had been having absence seizures where she would just kind of go off into the zone, and then she would lose continence. And that just stopped. I mean, it just stopped almost immediately, as soon as I put her on a ketogenic diet. That was just like rocking. That was a real game changer for us.
So you can see why I mentioned this earlier: nutritional ketosis doesn’t just treat a diagnosis. It treats the whole brain.
And that’s part of the exciting potential of therapeutic ketosis for brain health. Again, I use that non-specific term, brain health, because it can decrease neuro-excitability by balancing GABA and glutamate levels. It can decrease neuroinflammation. It can allow more efficient energy production and improve cellular health, including mitochondrial health for energy production.
And these mechanisms all have the potential to improve brain health in ways that can impact seizures and cognitive function and mental illness, OCD and more. And in this case, it helped Suzi improve in all those ways.
I’d say the only thing is that she still has some obsessive-compulsive behaviors, but instead of it taking us 45 minutes to get out of the house from the time we start trying to leave (because of her obsessions with checking and ordering), it takes us 15 minutes or 10 minutes to get out of the house, which is pretty good for someone with Down syndrome, I think.
But actually, she went back to her baseline in a lot of ways. She’s back to doing her volunteer activities and different things like that.
But she actually went back even better in her verbal skills. She was never using three-syllable words prior to the dementia. I think it was like four or six weeks, something like that, after she had been on a ketogenic diet, she said something. I told her something and I said, “You got it?” And she says, “I understand.” And I just, I almost, I said, “You what? You understand? I don’t understand!” I didn’t understand how she could be saying a word like that, because I didn’t think she’d ever say a word like that.
That’s such a great example of recovery. As you heard, Suzi’s OCD wasn’t gone, but it was dramatically improved to a degree that directly impacted the family’s quality of life. And there’s more.
[In the past, when] taking her to church and having her be involved in church activities and some of those things, I had to be right next to her all the time, and had to be guarding her to make sure that she wasn’t going to do things that were inappropriate or go into a room where she wasn’t supposed to go.
And she got to be in the church play again this year, whereas previous to this, she was not able to go back into the church play because she couldn’t cope with the stress of the practices, all the people, having to do a certain thing, and remember what it was she was supposed to do and everything like that.
So this year, she got to be back in the church play and she actually was able to help another young woman with Down syndrome to know where she was supposed to be. So she actually became a mentor. And that’s a big deal.
We got to go back to doing some of the things that we normally would do. I do have a lot more freedom, and as a result, I started a ketogenic support group in my house. It doesn’t have anything to do with Down syndrome for the most part, but we do have another parent of a special needs son who has seizures. The two of them went on a ketogenic diet. That’s been a really exciting journey as well.
But I would not be able to have a support group in my house the way it was before because it was all about caregiving. It was just all about caregiving. And so now, I can go to the Boca low-carb event. I was gone for four days, and she was happy while I was gone. I have not been able to leave her for that long for many years. It was exciting.
And that’s one of my favorite examples. Suzi wasn’t just in the play. Now, she was helping others, serving as a mentor to another participant living with Down syndrome. Such an amazing recovery.
So now let’s hear Dr. Bosworth’s perspective on Suzi’s response.
I can remember the tears of the mother when she said, “I’ve cared for her. She’s now 48 years old, and I know this child as much as I know myself. She’s never used a three-syllable word. It’s just not possible for her to use a three-syllable word. And the other day I gave her instructions [and she used a three-syllable word.]”
Let me just explain one story that Mary’ll do if she comes on. So if you’ve ever had to mark people for where their memory is for whether they should be able to drive a car, the ability to navigate is one of those skills that it fades so slowly, sometimes you don’t realize you’re not navigating very well. If you’re going to drive a car, that’s a really bad thing. So they find themselves lost.
Well, when you have a Downs patient, the navigation is ambulatory, and so mother would say, “Bring me the potato salad,” or, “Bring me something from the [kitchen],” and she said Suzi would walk up to the table, and clearly you cannot walk through a table, but she would then get really frustrated that something was in her way and she could not process to move your body around the table. I’m like, “How long ago did that start?” And it’s been going on, I mean, over a year at that point, might have been a year and a half where just it was not present. And she said within about a week, she didn’t do that anymore. Then, she was able to say the words, she was giving her instructions, and she said, “Do you get it, do you get it?” And the daughter replied, “I understand.” And mother just started bawling, because–
Un-der-stand. Three syllables not used before.
Yeah! It’s not just that she’s back to baseline. This is better than we ever got her brain to work. And she’s 49 years old now. That is such an incredible story.
It shows there is something about ketones. We know this from a chemical basis, from a physiologic basis, we know ketones are a different fuel for the brain. We know the brain can function differently on ketones, but it’s one thing to study it and know it scientifically and another thing to see how it can change someone’s life so dramatically. That’s the power of this story.
Yeah, last year at the Christmas holiday season, they had to have 24/7 observation for their daughter to go to a Christmas celebration. This year, not only did they get to take their daughter to the Christmas pageant, but she was on stage as the angel. She could regulate. Her social anxiety is one of her top things. So to get on stage and to be able to be the angel in the Christmas pageant from having to have a chaperone, you can’t be left alone, to getting on stage in one year.
I think [that’s] what really pushes me to try. There were several times where I’m writing this story, and I’m just like, “I can’t do this. Oh my goodness. Look at all these records. And oh, I’ve got to call that doctor, get these.” There was a lot. I had other things I was trying to do, too, but I kept pushing through for this story every time and I would think of a statement the mom did.
After a while, all of her questions did get answered, and she started coming a couple times a month, or maybe once a month. She comes to our little support group.
But she got mad. She got just so angry that nobody offered this to her. She goes, “Do you know what it did to our family, for our daughter?” I mean, they’ve got other children, but when you have a high-needs in your family, and then the high-needs falls off the brackets and now needs an intense amount of resources [from] caregivers that are already on the brink of caregiver fatigue.
They couldn’t travel because her obsessions were so tight that you couldn’t do anything flexible. They went on an RV trip this summer because they could. They took her with them, and they showed family members that not only did she lose all that weight, but she didn’t look gray. She was social again. She was back the version of her that had been alive before dementia set in.
Did you catch that?
They were angry nobody offered nutritional ketosis. No one even thought of it as a potential treatment, which is definitely at odds with the rapid and incredible improvement Suzi saw.
Well here’s Dr. Bosworth again.
You don’t need me to do this. You don’t need to go to a doctor to get into ketosis. There’s a few simple rules. That patient didn’t have to go to the specialty clinic and fly across the country to see a specialty keto doctor. No, no. It was a mother who cared a lot about her daughter and said, “Okay, you’re telling me the rule is I got to keep ketones around for my daughter? Okay, let’s try that.”
And I mean, do you know how many other crazy things we’ve talked patients into doing that didn’t have the upside of saying, “You’re going to lose some weight. Your brain’s going to work a little better. You might reverse some age in the way you look.”? You can find lots of bumper-stickered reasons to do the ketogenic diet, but what they were looking at was it wasn’t even talked about as an option.
And poor Mary. Mary and her family become shackled with, “Well, I’ve been telling people to do keto.” And she now runs into that thing of, “If I have to explain what a ketone is one more time…”
But in her lane, what she sees is, “Well, they think that I’m exaggerating. They know our daughter and they take one look at her, and they don’t say what you say, which is, ‘Oh, it’s too hard. That must be awful.’ They say how do I do it [keto]?”
You should hear the mother talk. I hope you get to have an interview with her because she doesn’t act deprived. She’s the happiest I’ve ever seen her. I didn’t get to see a smile on her face for all of those years with that memory and mental health and that kind of the entrapment that happens in patients with dementia. And [with] that freedom, she’s like, “She’s the happiest she’s been in years.”
She doesn’t act deprived, she’s the happiest she’s ever been, and she’s back with a smile on her face.
How do you place a value on those improvements?
That’s part of the hope of spreading their message, right? No, it’s not a randomized controlled trial. But Suzi needed help now. She couldn’t wait for a trial.
But we have to admit we’re left with some uncomfortable questions like will this work for others? And how do we balance the perception of deprivation and the challenge of changing someone’s diet with a relatively unstudied potential benefit?
Well, here’s Mary again on what she hopes might come next.
A big burden I have is for, of course, other parents of people with Down syndrome because it is very hard (once they’ve got their habits developed) to change how they’re eating. Then, the whole family has to change.
That is huge, having a family. I have a supportive family. I have a very supportive family. We have nothing in this house that she couldn’t eat. There’s nothing. Everybody helps to take care of her.
But I would say, I would love to see not just people with Down syndrome, but especially people with Down syndrome [and] family members, [to] learn about this, so that when their family member is young, they can learn to eat in ways that’s going to protect their brain. Then, maybe, all people with Down syndrome won’t have to say, “Okay, that’s likely where we’re going when we get to a certain age.”
I did want to say that one of my strongest desires is to help other people prevent dementia. I’m 68 years old. I have a lot of friends who have cognitive impairment, and I hate it. I feel like, in many cases, it’s unnecessary, and my desire is to help that not to be the case.
It’s so interesting to hear Mary take that next step, right?
She saw firsthand the effect nutritional ketosis had on her daughter, so it’s only logical for her to wonder, “What if we started this earlier?” If someone starts this earlier, could they prevent the decline that they saw in Suzi?
We don’t have the data to answer that question, but many scientists (such as Dr. Steven Cunnane and Dr. Matthew Phillips and others) are interested in studying this topic.
But what about the naysayers who question whether nutritional ketosis is sustainable? Or is it even practical to ask in this situation?
You know, a lot of people say “That’s not sustainable. I could never do that.” And I can say that there were some challenges, and there are some things that you have to educate yourself on, but wow, we love our food. She loves eating bacon and eggs for breakfast, and she loves to have what I call naked hamburgers. I mean, they don’t have buns on them, but she has her hamburgers with her.
It is very doable once you get past the initial culture shock. Then, you just have to remind them that soda pops are poison. We say stuff like that, which sometimes makes her a little bit bossy with other people, telling them that they’re drinking poison.
It is very doable, but the caregiver has to be in charge. That is something we are super, super disciplined around: food. And for someone with Down syndrome, that’s just how it has to be.
Those are great lessons from her experience, right? There were challenges, sure. But with support, with clear lines of who’s in charge, and with the end goal in mind, it was well worth the effort.
Now, by no means is this a guarantee, right? But it’s a possibility, and it’s a possibility that Mary and Suzi couldn’t find elsewhere.
But now, let’s get to the real gem of this interview. We get to meet Suzi, and we get to hear from Suzi herself.
Mom gives me hamburgers.
No, that was for lunch.
For breakfast you had what, you had eggs.
Pork rinds, that’s for snack.
So for breakfast you had eggs.
Eggs in the morning, sausage in the morning, avocado.
Yeah. Yeah, and we have–
Oh yeah, there are these little waffles that her sister makes out of some avocado mayonnaise. I have no idea what the ingredients are. I don’t want to learn how to make them because then I’ll have to make them too. They look like waffles, but they’re made out of a lot of fat.
Low carb, not fat.
(gestures to her stomach)
Oh, not this kind of fat. We’re talking about the fat that you eat.
Yeah, so it sounds like you eat some good foods. Sounds like you eat some really good stuff during the day. That’s great.
Yeah, we eat good food, don’t we?
And she likes her bacon and sausage.
Bacon and sausage in the morning.
Yeah, that’s right.
Wow, well, good. Well, thank you for coming on and saying hi. I really appreciate it. It was very nice to meet you.
You say goodbye?
(End of Interview Segments)
Suzi’s ability to socialize, to answer questions, and to discuss her enjoyment of her food, that would’ve all been impossible a few years ago.
But most important for me is the interaction between Suzi and her mom is that love and the caring between them, like when Suzi rested her head on her mom’s shoulder and she smiled. That’s the real magic of the life that Suzi and her mom got back.
So with that in mind, was nutritional ketosis too hard? Was it too restrictive? Certainly not for Suzi and Mary, and I think it’s clear that all the effort and the challenges were well worth it. It’s likely the most impactful intervention they’ve ever had.
And that’s a lesson for all of us about the hope and the potential for nutritional ketosis and metabolic therapies for a global brain health, for cognition, for mental illness. I’m inspired and emotional by Mary, by Dr. Bosworth, and certainly by Suzi, and I hope you are, too. This is what fuels us at Metabolic Mind to help more people experience this life-changing transformation.
So thank you for joining us and please join us next time as we continue to explore the connection between metabolic and mental health and metabolic treatment as mental health treatment, and as we share amazing stories like Suzi’s, combining stories with the science, clinical experience, and practical knowledge, so all in all, we can help people become educated to see if this might help them transform their lives.
So thank you again, and we’ll see you here next time at Metabolic Mind.