Author Tanita Allen on Existing with Huntington’s Disease

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life Podcast. Well, I know we are all listening to the podcast, we also like to curl up with a good book, and so Daniel, do you like a good book? Do you like fiction, non-fiction, or are you just go to those trusted medical journals for entertainment?

Dr. Correa:
I definitely don't read those all the time. I like to read on weekends and vacations, and when I do, then I'm reading often fiction to take me to another world or an alternate reality, but actually lately I've been reading José Andrés book, We Fed an Island, about the emergency response into Hurricane Maria in Puerto Rico. For the weeks that my eyes are too tired from work in medical journals, I often will end up opting for audiobooks. I find that's a nice way just to close my eyes and take a break from the computer screens and the books I've been reading, and just get some relaxation. With that, I think with audiobooks for me it's a lot easier to follow and really listen to the person when it's a nonfiction story. How about you?

Dr. Peters:
I agree with you about audiobooks. I love it when it's a memoir, so the person's actually talking to you about their story. I feel like it's us having our own one-on-one conversation. I tend to vacillate between nonfiction and fiction. Right now I'm in a nonfiction trend. I just finished the Wives of Henry VIII and now, yeah, it was a lot of fun.

Dr. Correa:
Yeah, old-fashioned historical soap opera.

Dr. Peters:
Absolutely. It was also opera. But now because I'm moving and I'm learning about moving and transitioning to a different part of the world, I'm in the self-help area, so I'm reading a book about managing wells and well water. What do you think about that?

Dr. Correa:
Wow, okay. I'm not sure that I can imagine the idea of living in a place where you need a well since I'm in New York. Thankfully we have good tap water, but yeah, no, I have a friend upstate New York that has a well on her property and I'm very thankful when I visit that it's a good working well.

Dr. Peters:
Yes, exactly. So it is a riveting read. No, I'm just joking. So for our listeners, I will say I definitely recommend a different book. It's called We Exist. It's by our next guest author, Tanita Allen. She was actually prompted to write about her experiences with Huntington's disease, a rare inherited movement disorder. Our discussion really ranged from her interest in writing and her quest to really get the correct proper diagnosis for her symptoms and how she's actually doing right now living with Huntington's disease. We'll also hear from our expert Dr. Katy Moore about more about the specifics of the disease and what treatments are available,

Dr. Correa:
And we've been broadening the different types of conditions and topics that we're covering here on the podcast. We all want to hear what you think about it and what more you want to hear on the podcast or even in the magazine. And so we're doing a listener survey. You can find it in our show notes. The website is brainandlife.org/survey. And by participating in this survey, you will have the opportunity to enter your name and email address for a chance to win one of five $100 Amazon gift cards. Please go to the show notes, fill out this survey. It's so important for us growing the content of the podcast and in learning more about who's listening and how we can help you.

Dr. Peters:
And then you can turn around and use that gift card to buy more books on wells. Well, hello, good morning, good evening, wherever you're listening to your podcast, thank you so much for joining us on the Brain & Life Podcast, and I would like to welcome Tanita Allen to the podcast. So Tanita is an author of a recently published book called We Exist. And in this memoir she shares her experience with being diagnosed with Huntington's disease, and this is a rare inherited movement disorder. She is now a prominent and vocal advocate for others with Huntington's disease and really about approving access for all to get the proper diagnostic testing and tools for this condition. So Tanita, I'm so looking forward to this discussion, and welcome to the Brain & Life Podcast.

Tanita Allen:
Thank you so much for having me. I am so grateful to be here.

Dr. Peters:
Wonderful. Well, where are you joining us from today?

Tanita Allen:
Well, I'm joining you from Cleveland, Ohio. I was born and raised in Cleveland. I'm a middle child. I have an older sister and a younger brother, and was raised in a middle, middle-class family. I decided to move to New York City for a brief point in my life, for love initially, and a career change. I moved in 2006 and that's where my journey really began with my medical stuff.

Dr. Peters:
Well, you just mentioned like where you grew up and where you sort of hung your hat for your different stages of your life. Can you tell us a little more about yourself?

Tanita Allen:
Well, actually at the time I had gone back a career change. I had decided that I wanted to be a paralegal. So I went to paralegal school, got my certification in that. I worked for the federal courts. And I loved, loved, loved the experience. And then it didn't work out with my relationship with my boyfriend at the time, so what I did was I moved into an apartment by myself and lived in an apartment that I did not know that unbeknownst to me was going to be filled with carbon monoxide and gas poisoning. I was subjected to, we calculated about 22 months of exposure to low level amounts of carbon monoxide and gas. So that was a big problem. Yeah.

Dr. Peters:
That's horrible.

Tanita Allen:
Yeah. Yeah. But what it did was it was the beginning of what my journey how it really started. My journey started from that initial environmental exposure to toxins. Because I didn't come from a family of Huntington's disease. That's the thing. Unlike a lot of people with Huntington's disease in the community, they can point to many relatives, many generations where they've had a family history, a strong family history.
I am the first person in my family to be diagnosed. And so therefore that was unique in that situation. And then also my symptoms that came about were my toes were moving by themselves. So I had wiggling movements in my toes and the doctors thought, "Oh my God, it must be something called painful leg and moving toe syndrome." They actually called it painful. And I looked it up and I went, "Wow, that's actually a real disease." But then it progressed to my fingers and my toes and then my upper trunk. My face was moving. I had twitches in my face. I had vocal tics that they called Tourette's.
I was actually labeled as having Tourette's at one point, which is crazy. I had teams of doctors. I was in New York City at the time and I was going to the emergency room complaining about what's going on with me. My body is moving by itself and I cannot control it and I'm scared. So I was freaking out, and that was actually making it worse because stress exacerbates the symptoms of Huntington's disease. So actually I didn't realize that my own stressing out was actually contributing to the intensity of the symptoms.

Dr. Peters:
So Tanita, can I ask a quick question? So you talked about how it started in your toes. What was the time course? How did that happen? Was it over a series of days? Was it over a series of months? Was it a series of years? Because it sounds like you had to contend with people telling you you had multiple different diagnoses until you ultimately found the right one. What was that time course?

Tanita Allen:
Well, it was approximately just shy of two years. So about roughly a two-year situation. I started showing symptoms in 2010. I went to my doctor and I said, "I have a problem. I think I have muscle spasms." I said, "I don't know why my toes are moving by themselves." And he looked at me and he said, "Are you doing that on purpose?" And I said, "No, I'm asking you what do you think it is?
Maybe I have muscle spasms, right?" This is what I'm thinking in my head. And he said, "Whatever this is, this is neurological in nature and you need to see a neurologist." He said, "This is way above my pay grade. This is way above my expertise. You need to see a neurologist." And that was my very first time being introduced to a neurologist in my life.

Dr. Peters:
Well, that was good that he was able to direct you appropriately, but it sounds like it still took a while to find the diagnosis. So how many different diagnoses did you have before you got the ultimate?

Tanita Allen:
It was incredible, doctor. I was tested over and over again because they kept saying, "Because you are black, black people have a high prevalence of lupus, so let's just keep testing." I got tested so many times for lupus and they kept coming back negative. They kept testing me for Sjogren's, Wilson's disease. They even tested me multiple times for HIV/AIDS because they said that was common in black people and the black population. And I said, "I've never seen anybody with any of these diseases shake like I shake, move like I move and have these same problems." I had balance issues, I had some cognitive issues. My cognitive issues were actually really exacerbated by the toxic environment.
I was kind of foggy mentally. So my cognition was off and I had no idea. I was nervous all the time. I was having anxiety, depression. I was having all the classic three components of Huntington's disease. But they told me the one thing they knew for a fact that I did not have was Huntington's disease because black people don't get Huntington's disease. And they just kept driving point home, teams of doctors in different institutions, all over New York City saying that same fact over and over and over again. So I believed it. I believed it, doctor. I actually believed that. Why would all these doctors lie to me? Why would they all say the same thing and it not be true?

Dr. Peters:
Yeah, I think that's unfortunately it sounds like very short-sighted and I'm so glad that you were able to be your own advocate to get the proper diagnosis. So when did the proper diagnosis come?

Tanita Allen:
The proper diagnosis came in 2012. I was genetically tested. Okay, initially, this is what's so crazy about my story. Throughout the journey, I think sometime in 2011, I had a doctor at a medical center in New York City. She was a woman, wonderful woman. She thought, she said, "I have to ask, do you have any Northern European ancestry at all in your family? Do you have any European ancestry?" Period. And I said, "Yes. Hello, I'm an American and I'm a descendant of slaves and slave owners. I'm a descendant of both. So absolutely I have mixed ancestry just like many Americans."

Dr. Peters:
Absolutely.

Tanita Allen:
And she said, "Well, what I want to do is test you for Huntington's disease." I said, "Well, other doctors told me that that was impossible." And she said, "No, I want to test you." So what she did was she ordered the test, I went to the lab, got my blood drawn, and then her supervisor who was over her, she was a movement disorder doctor, and her supervisor made her cancel the test because I was black and because he said, "Black people don't get Huntington's disease, it's a waste of time." And she was very upset that he went over her head and that he made that call.
So she's told me, she said, "I understand if you have to find another doctor, I understand, I get it. You need to get tested." And it took me another seven months before I found the right doctor that would test me for Huntington's disease. And I got tested, it came back positive. I freaked out. I went ballistic. I was hysterical. I cried. I said, "That's impossible. All these doctors told me that it was impossible for me because I'm black. How can this be?" And he said, "You know what? Why don't we do this? Why don't we retest you in a different lab and see what the results are." So I got another DNA test and a different lab and it came back the same and I had to accept the truth.

Dr. Peters:
Oh yeah. That just seems like what a journey and I'm so sorry you had to go through speculation and disbelief and having to be tested twice and moving from doctor to doctor to make a diagnosis. How are you doing now? I'm a brain cancer doctor. I have to deliver diagnoses of you've got brain cancer and there is that fear and anger and frustration for patients to have. How did you handle that and come to the realization that you are now?

Tanita Allen:
Well, that's a great question. It was quite a journey. This did not happen overnight for me to get to this point of high functioning at this point. It took me a better part of a decade. Being in and out of hospitals, had hundreds of falls, I have been hospitalized multiple times. I mean, I have been through a lot. I have been through quite a bit. I recently relocated back to Cleveland in 2021 and I actually started with a wonderful healthcare team. I have the best doctors at the Cleveland Clinic. They are amazing. I'm putting a plug in for the Cleveland Clinic.

Dr. Peters:
[inaudible 00:15:51].

Tanita Allen:
They're amazing. And so-

Dr. Peters:
They're Tanita approved. That's what I'm going to say. They're Tanita approved.

Tanita Allen:
Yes, they are awesome. And I take medications every 12 hours. So what you're looking at and you're talking to as a medicated person. And I also follow a very specific regimented lifestyle. I made major lifestyle changes. Health is number one for me in my life. And so I put that first and that has enabled me to get to this point today.

Dr. Peters:
Well, I'm so happy about that. So one of the questions I had for you is now that you have this diagnosis, and it sounds like you've done so much to have your body be, have positivity and you take your medications and you're doing all these healthy lifestyle changes, how have you adapted your favorite activities and hobbies to sort of live with Huntington's?

Tanita Allen:
Well, that's been a journey in itself. I'll give you some examples. I've adjusted my physical intensity with my exercise. I walk. I don't do any running, but I walk three to five times a week. And I go out for a nice walk. I listen to music. I like to dance. I love my music. I love to stretch. I also do things that my physical therapist gives as exercises. At one point I needed to have, believe it or not, a walker. I was using a walker at one point, I was using a cane and I had to use a shower chair to shower, now I don't use those devices, but I keep them in my home in case, just in case, but I keep them around.
I pace myself. I do thing at a time. I focus on one task at a time because if I overload my brain, I get anxious and then anxiety causes me to be symptomatic in some way. So I have to focus on just doing one task at a time. I am very mindful on the participation of what I'm doing. So if I'm eating, I enjoy my meal. I sit there and I take one bite at a time and I enjoy my meal instead of rushing and scarfing it down. And you know what I mean? I focus on one thing at a time. And socially I connect with supportive organizations. I have a great set of doctors. I call them my dream team. I have a great team of doctors, healthcare providers that are amazing.
And I also am a part of social support groups. And I explore new things. For example, to keep myself cognitively sharp. I take a class or two at a time online, that keeps me cognitively really, really sharp because I am doing reading. I use a journal and chronalize my mood, my medications, any concerns I might have for my doctors. And I celebrate the small wins. I celebrate when I get through the day I'm happy and I'm grateful. And I live in an attitude of gratitude. That's what I do.
I am so grateful that I am functioning because so many doctors predicted when I got diagnosed in 2012, they predicted by 2024 that I would be literally in a wheelchair, that I would be in a nursing home, probably be unable to talk, unable to walk, unable to feed myself, just really and probably be in diapers. That's what they predicted. So they told me that was my future. So for me to be in 2024 able to walk, talk, feed myself, live independently, pay my bills, travel, and just live my life is amazing. It's a miracle.

Dr. Peters:
I think it's a miracle. And I would just say, hey, 2024, you're here. You're thriving.

Tanita Allen:
That's right.

Dr. Peters:
You may be doing one thing at a time, which I love. I love that. You listed just so many great lessons. Well, I guess we are recording this I can just play it back. It's going to be a podcast. And so I can just list all of Tanita's lessons. So you did put something pen to paper and you did a book called We Exist. Can you tell me a little bit more about the book and what inspired you?

Tanita Allen:
Yes. Thank you so much for even having me here to talk about this. My book, We Exist, I chronalize my two-year journey with how I got diagnosed with Huntington's, but I'm speaking from a perspective of being black with Huntington's disease. Huntington's disease is already a rare disease. And I wanted to raise awareness because people often describe Huntington's disease as having ALS, Parkinson's and Alzheimer's all rolled into one. That's how it's described. And then I was told that black people don't get Huntington's disease. So I wanted to write and share my truth and how my experience was in this journey and since I've been diagnosed and what's been going on in my life.
And since then I've had two other relatives in my family test positive for Huntington's. So my mom is one and my sister is another. And I want to raise awareness about what it feels like to be black in this country and face all the adversities that I had in the medical system because I was treated like a third-class citizen, not even second class, like a third-class citizen. And I also wanted to address the misconceptions and stigma surrounding Huntington's disease and really bring that home because a lot of people get stigmatized when they have a neurological illness because my shaking and my uncontrollable movements and involuntary movements were mistaken as being under the influence of drugs.
I was accused of being an alcoholic. I was accused of being mentally ill. And if a person is mentally ill, you're mentally ill. That's what your condition is, but there was a lot of stigma. "Oh, she's drunk, she's high." And I wanted to write about that. And I wanted to challenge the systemic racism in healthcare. And I wanted to encourage the readers to acknowledge that and address the unique challenges faced by people of color how we have a different set of rules when it comes to the medical system in getting our care and being heard.

Dr. Peters:
So how can we be better allies and advocates for not just patients with Huntington's, but also for black people that are dealing with rare diagnoses like yours and they're not being heard. So what can we do?

Tanita Allen:
Well, you know what? There are several things that can be done to be a better ally or an advocate for individuals with Huntington's disease or people with neurological problems in general. You could definitely educate yourself about HD and dispel the myths. Help promote awareness. You could participate in awareness campaigns, especially during HD awareness month, just an example. You could practice empathy and compassion. Listen, actively offer non-judgmental ear to those living with HD. Sometimes being there just to listen can be incredibly amazing.
We have good days and bad days. No two days are alike for people with HD. And that's true with pretty much all of us and all of our situations. And understanding the challenges, recognizing that physical and emotional and cognitive changes with individuals might vary from day to day and person to person. If you see 10 people with HD in a room, you see 10 different things, literally. I mean, that's how we are that different. And avoid assumptions. I just think there needs to be more education, especially in the medical fields, in the medical communities, hospitals, emergency rooms, they need to be more aware of people with neurological challenges.

Dr. Peters:
I agree with you Tanita. And you know what? You're doing the first step. You're educating us and our great listeners. And I just wish the best for you. And I want to just thank you for sharing all of your experiences, your advocacy.

Tanita Allen:
And I wanted to definitely let people know of the wonderful HD organizations that we have.

Dr. Peters:
Okay, great. Tell us.

Tanita Allen:
Yeah. Well, first of all, our community is small, but we're mighty. We are amazing. The first group is HDSA, Huntington's Disease Society of America. They have an authoritative website with educational research and support groups. They have a network of social workers. They have about 115 social workers nationwide. They also have a national youth alliance. They have an HD Centers of Excellence. They have all across the United States. I personally received my care from an HD Center of Excellence, so it's at the Cleveland Clinic.
And there's another one Help 4 HD. That's a great organization, help the number four, HD is a great organization that works directly with the HD community. They provide educational programs and financial assistance with expenses. They have a YouTube TV show as well as a podcast. They've been amazing. HDYO is a wonderful organization that focuses on youth and youth adult populations affected by HD. They provide educational programs, they have a great camp and they even have an international congress.

Dr. Peters:
Oh cool.

Tanita Allen:
Yeah. And then there's HD Reach. It's a great organization that has educational programs. They have a monthly virtual book club that I'm a member of. And for me, this is a great way to personally connect with members of the HD community and learn. And then the last one is HelpCureHD. This is an organization that I wish I knew about many years ago when I was thinking of having children. They assist with family planning. And they provide grants for families that use IVF or PGD to ensure that they have HD negative children. So that is huge, huge, big time game changer. So I just wanted to definitely let the listeners know of these wonderful organizations and that donating to their organizations and being a part of their organization somehow by volunteering is something great.

Dr. Peters:
Tanita, you are awesome. You just have so many resources.

Tanita Allen:
Thank you. [inaudible 00:27:17].

Dr. Peters:
And I'm going to just recommend that all of our listeners check out your book. Also, you can check her out at www.tanitaallen.com and check out your story and more information. And thank you so much and thank you to our listeners.

Tanita Allen:
Thank you so much for having me.

Dr. Correa:
We've been broadening the different types of conditions and topics that we're covering here on the podcast. You might want to hear what you think about it and what more you want to hear on the podcast or even in the magazine. And so we're doing a listener survey. You can find it in our show notes. The website is brainandlife.org/survey. And by participating in this survey, you will have the opportunity to enter your name and email address for a chance to win one of five $100 Amazon gift cards. Go to the show notes, fill out this survey. It's so important for us growing the content of the podcast and learning more about who's listening and how we can help you.

Dr. Peters:
Hello again, listeners. So glad you can make it back to the Brain & Life Podcast. Thank you again for joining us today. I am your cohost, Dr. Katy Peters. And we even have more Katy. We have our expert Dr. Katy Moore. So she is an assistant professor of neurology at Duke University Medical Center. So proud to call it home. So proud that she calls it home. She provides neurologic care for people who have movement disorders.
And we've talked about movement disorders before, conditions like tremor, Parkinson's disease, dystonia, but there's also a condition called Huntington's disease, and she's going to talk about movement disorders in general, but really delve into Huntington's disease today. She's heavily evolved in educational initiatives in the Department of Neurology and serves as associate director of the Neurology Residency Program. And I'm delighted to have her educate us today on Huntington's. Welcome, Dr. Moore.

Dr. Moore:
Thank you so much, Dr. Peters. I'm so thrilled to be here and to be able to share with your audience about Huntington's disease, a group of people that I'm really passionate about and really grateful to have the opportunity to care for.

Dr. Peters:
Thank you so much. And now I introduced you a little bit, but can you tell us a little more about yourself? I think I know where you're joining us from today.

Dr. Moore:
Yeah, so I'm a movement disorders doctor here at Duke, and what that means is I'm a neurologist who takes care of, as you were mentioning before, any disorders that cause you to have extra movements or not enough movements. And so that's things like tics or Tourette disorder, Parkinson's tremor, dystonia, and importantly for today, career form movements or dancing-like movements like Huntington's disease. I finished my residency training at the University of North Carolina in Chapel Hill and did a fellowship with Michael Okun at the University of Florida. And I'm very happy to be back at Duke in my hometown of Durham.

Dr. Peters:
Wonderful. Now you mentioned movement disorders. Can you talk to us a little bit more about what exactly is a movement disorder and how patients would come to see you?

Dr. Moore:
Sure. So there's a whole complex system in the brain that controls how we coordinate our movements and how we make smooth regular movements when and how we want them to. And when that goes awry, it can make us move too much or too little. So moving too much looks like shaking, twitching, jerking, spasming, or in the case of Huntington's disease, we have something called Chorea, which is flowing, dance-like unpredictable movements that can occur anywhere in the body.
If you're moving too little that looks like Parkinson's disease or related disorders like progressive supranuclear palsy or multiple system atrophy. And so it's a teeter totter of are we moving too much or are we moving too little. And we use medications to help balance those out. We're learning more and more all the time about what causes these individual diseases, and there's a lot of advancements in what we're able to do for patients.
So there is something you may have heard about probably from Dr. Okun about deep brain stimulation surgery, which are implanted devices developed to help reduce too much movement or to improve movement. And there are things like botulinum toxin injections that can help with spasming or pulling movements that we call dystonia. So there's a whole array of treatments that are well known to us and developing over time. And as movement disorder doctors, we're really excited now to be at a place where we can see disease modifying medications in the future.

Dr. Peters:
Well, I think that it's just so hopeful for so many of our listeners that may have a movement disorder or maybe one of their caregivers who's caring for someone with a movement disorder. Now, our guest today on the podcast was Tanita Allen and she has Huntington's disease. Can you tell us a little more about Huntington's?

Dr. Moore:
Absolutely. Huntington's disease is an inherited disease that is a genetic disease passed from parent to child. It's a complex disorder in the family of disorders we call movement disorders or neurodegenerative disorders, which means they progressively worsen over time. And this involves three categories of problems. There's issues with movement predominantly this dancing wiggling movement we call Chorea, although plenty of other movements can happen. There's difficulty with cognition or memory, being able to process information and make appropriate judgments.
And then there's difficulty with mood or other psychiatric difficulties. And so patients often will have irritability or depression and it can be quite serious involving hallucinations or even delusions. And so there's a wide array of symptoms that can happen, but each person and each family with HD is different. And so not everyone will have all these symptoms, but it is important for us as physicians to help guide patients and families through the wide array of things that can happen and help to manage those symptoms.
It is only a genetic disease, so it's only passed from parent to child, but we do have patients that come in that are the first in their family to have HD or to know that they have HD. And I think that's really important as you're thinking about how is my family getting this disease or am I at risk for this? There's nothing that people do that cause them to have the disease. So we know that environmental exposures can have an impact on how quickly the disease progresses or how early in life the disease starts to happen, but there's nothing that people with HD are doing to make them have this disease.

Dr. Peters:
I think that's really important that you touch on the fact that there really there's no other cause other than the genetic cause, but that must lead to a lot of very serious discussions with the patient. And next would really be the family members. How do you navigate that as a provider?

Dr. Moore:
This is absolutely an important point because when we're seeing a patient in the clinic, they're often brought in by loved ones who they themselves may be at risk for this disorder.

Dr. Peters:
Oh, wow.

Dr. Moore:
And so we are working with families to understand, "Hey, as a caregiver, what is your relationship to this patient? Are you at risk for this disorder? How can we help you understand your risk and also how to navigate that risk while caring for your loved one?" So these are very complex situations that are involved in how we care for patients and families as a team. But also there's the idea of, all right, I might be at risk for HD and I'm thinking about having children. How do I go about that process? And that's a really special time for patients and families.
And when you're at risk for a genetic disorder like HD, I think speaking to a specialist about what are your options? How do I test in a safe and supportive way to make sure that my family and I feel safe and supported through the whole process? Because as you can imagine, we don't want to test flippantly and then you get this answer that could affect your whole life and your family's life, say over the phone or in your online medical record at 6 o'clock on a Friday night. So you really want to be connected with a team of people that can help you understand the various risks.
It is important for patients and families to know that in vitro fertilization can be very helpful for patients who want to have children of their own, but are at risk for HD. In vitro fertilization specialists can help you to make sure that the embryo that is implanted does not have the HD gene. But many families with HD or at risk for HD, build their personal family in many different ways. So I think speaking to a specialist and understanding what are my risks? How can I build the family that I want to build while still dealing with this process in my family?
And we respect everybody's decision where they're coming from, but to know the breadth of the options available I think is really helpful for families and caregivers. Think about, for an instance, you have a individual who's at risk for HD coming into the clinic and they spend part or all of their time caring for a parent or family member with HD. They're simultaneously thinking about what are my risks for HD and what are my potential children's risks for HD? So as you were mentioning before, very complicated and we want to help families navigate that process as best we can. And part of that is giving them the full range of options.

Dr. Peters:
And that is so important to have really that whole holistic care of the patient and that patient's experience because just like with every other condition, we all will have variability in what we want and what our goals and quality of life may be. And you've already mentioned the myriad of symptoms and then also the other services that you pull into the care for these patients. It sounds like you need a team. Is that correct?

Dr. Moore:
Absolutely. Absolutely. I could not do my job without a team. And we work together very closely to make sure that we are meeting the goals of patients and families. The team here at Duke is really great. I'm very privileged to be a part of it. In addition to myself, we have Dr. Burton Scott who directs our center of excellence here. We have physical therapists, occupational therapists, speech therapists, a great team of social workers and a chaplain as well as a pharmacist.

Dr. Peters:
Oh, wow.

Dr. Moore:
And we work very closely with our neuropsychologist to help us with cognitive testing, which can be really helpful for patients as they're navigating planning for the future and the disability process. So this is not all the extent of what the team could be, but you have to have at least some of these people involved in your care. When patients come to see us they have the opportunity to see the whole team. And oftentimes, I'm not necessarily the most important person that day. And so patients are really excited to see the physical therapist or the chaplain or to speak to the social work team to see what their most important needs are for that visit and to have those met, but I absolutely could not do this without my team.

Dr. Peters:
That is great. And I totally agree you do need a team. And you are important. We think Dr. Moore's important. Now, one of the things that I think was really important when I talked to Tanita was that it took a while for to actually get the diagnosis. So what tests do you do to really make sure you have the correct diagnosis for your patients?

Dr. Moore:
Absolutely. I want to start by saying with many conditions in medicine, the way they are taught and represented and spoken about is really from a white centric perspective. So many illustrations, descriptions of disorders across medicine, both within and without neurology are taught using pictures of white people with the disease. And so many people don't realize that HD can affect anyone in any ethnic population or racial population across the globe. The overall prevalence varies, but HD exists across the globe and not just in Caucasian or white people.
So we have to keep our mind open to what's going on. The gene for HD was identified in 1993, so thankfully we do have pretty reliable genetic testing that we can do now, and that's available for people who clearly have symptoms of a disease to try to identify if it is HD, and we call that diagnostic testing. And then it's available for people who say, "I have a family member for HD. I'm not symptomatic, and I'd like to be tested to see what my risk is." And we call that predictive testing. So the genetic testing is available and is very clearly able to give you an answer of if you're carrying this gene or not.
And then we're able to use clinical syndrome. So when you see a neurologist or a movement disorder neurologist, or even our team specializing in HD, they will look for a whole host of signs on your exam, whether you're having different kinds of movements, difficulty moving your eyes. And they'll also ask you a lot about history of mood problems or thinking problems because those are the main three categories, movement, memory, and mood, that we are looking for in someone who may have HD.
But the best way, the most definitive way is to get genetic testing. But again, I want to encourage people who are considering genetic testing to reach out to experts in this area. This may be clinicians like myself, but you can also reach out to the Huntington's Disease Society of America, the HDSA, if you don't feel comfortable coming into a clinical setting. There are ways to get the information that you need, and that's really important.

Dr. Peters:
And after we get a diagnosis of Huntington's, it sounds like you do a lot of support, a lot of education which perfectly fits you to educate not only the neurology residents, but also we educate our patients and caregivers all the time and now you're educating our wonderful listeners. What are the treatments that are now available for patients with Huntington's?

Dr. Moore:
That's really important because if you're listening out there and you have a family member with HD and said, they had nothing for my mom, nothing for my granddad, things are changing and things have changed. So we currently have three FDA approved medications to treat Chorea and Huntington's disease, and these are available to patients who have the diagnosis, and those can really help with the management of the movement.
Outside of that, there are medications that we will also use to treat the movements as well as to help with mood and memory and a whole host of other treatments. It's important to know that things like physical therapy, speech therapy, occupational therapy, do improve outcomes for patients, and that can make a big difference. But what we're really most excited about is that many companies, many investors, many scientists are working very diligently and carefully to develop medications that fundamentally change what's happening with the disease.
And we call those disease modifying drugs. The idea here is that with HD, you develop a whole bunch of abnormal Huntington protein. So the genetic problem causes a very long Huntington protein that's toxic to the body. And the idea with these medications is that maybe we can reduce that protein or reduce those other genetic products so that you're not having that toxicity, and that would really change potential outcomes for patients. I really think we're going to see those quite soon.

Dr. Peters:
Well, that's exciting. And are there any other new areas of research in Huntington's just about maybe how it happens or other new treatments?

Dr. Moore:
Absolutely. So what we do know is that while HD is caused by a single gene, there are many other genetic and environmental factors that may influence, again, how the disease presents, how early you can start to see symptoms and how rapidly the symptoms progress. And so there's a lot of interest in what are those influences on the disease, and that may help us more accurately and adroitly develop those new disease-modifying drugs. And we do a lot of work on how can we best support patients. So physical therapy isn't just the same physical therapy for a knee replacement or a back surgery.
Our team, our physical therapists and all the other providers work really diligently to make sure that the care that they're giving is the best possible care for HD. And that does involve research. And here at Duke, we're developing how can we best support you emotionally through our social work and chaplaincy team. So people are really working on all aspects of care from a research perspective as well to make sure it's not just, well, this worked for the knee surgery folks, let's give it to the HD folks.
No, no, it doesn't work that well if you just sort of blanketly give everybody the same thing. So I want to emphasize to people that a lot of work and effort is going into making sure we're providing the best possible care. And that's really important because not all rare diseases are getting that attention, and HD hasn't always gotten that attention. And that's through the work of advocates, patients, carers, and people like me who just have got that passion and want to do our best for patients.

Dr. Peters:
I just love the idea of that tailored approach. It's totally true. My brain tumor patients are not like an orthopedic knee surgery. They need different things. And so I agree that research is not just in the laboratory. It needs to happen in a practical way that patients want and that can benefit them maybe even in a quicker manner.

Dr. Moore:
Exactly. I tell people we can walk and chew gum at the same time. We can do both things to try to help the whole population of people with HD.

Dr. Peters:
I don't know about that. I can walk and chew gum at same time, but hey-

Dr. Moore:
We can try it with our physical therapists here in the office.

Dr. Peters:
Absolutely. Now, you mentioned advocacy and Tanita was like that was just such a huge part of her journey because she wants to get the word out there that she has this condition. And not only does she have the condition she is living, and so I think that's a really important advocacy message.

Dr. Moore:
Absolutely.

Dr. Peters:
How do you interact with advocates in this arena?

Dr. Moore:
Well, because this is really a small group in the grand scheme of things of people, we really work together to make sure that what the advocates are seeing they need is what we're trying to develop in a clinic. So first and foremost, as I mentioned before, with the genetic testing that approach where we're very careful, we make sure that patients are supported and think about the different arenas in which genetic testing can impact their lives, that came from patients and advocates to say, "Hey, this is important. We need to think about these things."
We work closely with groups like the HGSA and here in North Carolina we have HD Reach which are groups that interact directly with patients and families and say, "What do you need?" They're hearing from patients that aren't necessarily coming to a center of excellence because of many different reasons. And so they can tell us what's going on in the community that doesn't necessarily show up here in the clinic. And we meet together all of the scientists and physicians taking care of HD families, meet together regularly to say, "Where are we? How can we push ourselves to be better, to design better studies, to design better support, to make better medications?"
And so people are working really hard in this area to make sure that we're listening to patients and families and not just saying, "Well, we know what's best. We're going to design these programs the way medical school taught us or research taught us." And it's a very collaborative approach and really a unique, organic way that this is developed. And so many of our patients and families have been vulnerable in this way to say that they have this disease and to bring it to public notice. So we really want to honor and respect those folks who are being really vulnerable in that way to let people know because this is considered a rare disease.
You think about Parkinson's disease, if you ask anybody in a big setting there's going to be multiple people in that room who have or know someone personally with Parkinson's disease and you're not going to have that with Huntington's. So it's really important that we get the word out. The squeaky wheel gets the grease, right? So if we're able to let people know that we're here, we need funding, we need help, we need advocacy. And so I'd encourage those who feel comfortable in sharing their story to do so.

Dr. Peters:
Well, I know that you've amplified your voice about this condition on this podcast, so I can't thank you enough for joining me today in discussing Huntington's disease, and for being our wonderful expert.

Dr. Moore:
I really am honored to be here. And again, thank you to Tamika for standing up and showing the world how awesome HD families are. Thank you so much.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org. Don't forget about Brain & Life en Espanol.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to BLpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain and Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at Neuro Dr. Correa.

Dr. Peters:
And Dr. Katy Peters, joining you from Durham, North Carolina and online at Katy Peters MD, PhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Author Tanita Allen on Existing with Huntington's Disease

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