Subscribe to The Podcast by KevinMD. Catch up on old episodes!

Join us for an inspiring episode as we sit down with writer Erin Paterson, author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community. Erin shares her personal story as a caregiver for her father with Huntington’s disease and being gene-positive herself. We discuss the emotional toll of caregiving, the importance of empathy, and the challenges faced by those in the HD community. Erin’s book highlights inspiring stories of resilience from those affected by HD, and we dive into some of the powerful themes and lessons within it. Tune in for a touching conversation about hope, strength, and the power of storytelling.

Erin Paterson is a writer.

She shares her story and discusses her book, Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community.

The Podcast by KevinMD is brought to you by the Nuance Dragon Ambient eXperience.

With a growing physician shortage, increasing burnout, and declining patient satisfaction, a dramatic change is needed to make health care more efficient and effective and bring back the joy of practicing medicine. AI-driven ambient clinical intelligence promises to help by revolutionizing patient and provider experiences with clinical documentation that writes itself.

The Nuance Dragon Ambient eXperience, or DAX for short, is a voice-enabled, ambient clinical intelligence solution that automatically captures patient encounters securely and accurately at the point of care. Physicians who use DAX have reported a 50 percent decrease in documentation time and a 70 percent reduction in feelings of burnout, and 83 percent of patients say their physician is more personable and conversational.

Rediscover the joy of medicine with clinical documentation that writes itself, all within the EHR.

VISIT SPONSOR → https://nuance.com/daxinaction

SUBSCRIBE TO THE PODCAST → https://kevinmd.com/podcast

RECOMMENDED BY KEVINMD → https://kevinmd.com/recommended

GET CME FOR THIS EPISODE → https://earnc.me/jEjsAP

Powered by CMEfy.

Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Get CME for this episode by clicking on the CME link in the show notes. Today we welcome back Erin Paterson. She’s a writer, and we’re going to talk about her book, Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community. Erin, welcome back to the show.

Erin Paterson: Thank you so much for having me again.

Kevin Pho: You’ve been on multiple times. For those interested in hearing Erin’s story, and we’ll get into that again today, just go back to our prior episodes. Go to KevinMD.com/podcast, and in the upper right-hand corner, in the search bar, search for Erin’s name, and you can certainly hear her story. But I’m interested in talking about your new book today, Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community. Now, tell us, how did this book come together?

Erin Paterson: It really came about as a result of the first book that I wrote. My first book actually took four and a half years to write, and it was a really healing process for me. When the book was finally released and people were reading it, I just felt this tremendous sense of relief, and this weight had been lifted off my shoulders. I came up with the idea of helping other people in the Huntington’s disease community feel that way.

What I wanted to do was put together a book of stories that were told by people from the Huntington’s community, written by themselves, and put together in one book that would be kind of like a resource manual of personal stories. So if somebody is trying to plan a family, they could just read the chapters on family planning if they want. If somebody’s trying to go through the decision to get tested, they could just read those chapters. But many people have read the book from front to back. We just really covered a wide range of different perspectives in the book.

Kevin Pho: Before we go further into the book, for those who aren’t familiar with what Huntington’s disease is, give us a basic overview.

Erin Paterson: Usually when I come on here, I say the medical terminology that you could find on the website, and I really find that that’s not really all that helpful. It does affect three different areas, which are their mind, their mood, and their motor skills. Just in terms of, say, my dad, who has advanced Huntington’s, he can’t really walk properly. He has chorea, and the chorea impacts his ability to do many things, like get dressed or even eat. He has the mind, where in the beginning he used to have some anger issues that have been taken care of with medication. And then really, there’s the thinking process. For him, he is not able to, when you speak to him, he can only get out a couple of words, and it takes him 30 to 40 seconds to get out those couple of words. So those, for me, are the real-life implications of how Huntington’s disease impacts my dad.

Kevin Pho: From a caregiving perspective, talk about some of the challenges that you face.

Erin Paterson: Really, being in the caregiver role, I had always only imagined a caregiver as being the person who’s there on a daily basis to take care of a person’s physical needs. So the things that I do, because I live two hours away from my dad, are paying all his bills, arranging all of his doctor’s appointments, and making sure he’s stocked up on all his supplies. When he was, unfortunately, in hospital last year, I was there advocating by his side, explaining to doctors, “No, what you’re seeing right now isn’t the Huntington’s disease. This is something else. This is what Huntington’s disease is. This is how it impacts him.”

So it’s just always being there to be his advocate. And it’s not just within the medical community; it’s where he lives, and when new staff come in, training them on what to expect, how to react to my dad, and how to treat him. So that’s really the caregiving role for me.

Kevin Pho: Of course, there are genetic implications of Huntington’s disease, and you’ve talked about that in previous episodes, but for those who didn’t listen to them, talk about how those genetic implications have affected your life.

Erin Paterson: There is a 50-50 chance, when your parent has Huntington’s disease, that you will inherit the disease as well. I did go through genetic testing in my early 30s, and I found out that I’m gene-positive for Huntington’s disease. What that means is I don’t have the disease yet, but I will get the disease at some point in my life. I just don’t know when the symptoms are going to occur. For me, that has been a very long journey towards accepting that my future includes Huntington’s disease, because it’s a really hard thing to come to terms with. It’s not easy to imagine your future not living as vibrantly as you are now. And it impacts my entire family, not just me. It impacts my daughter, and it impacts my husband, because one day in the future, they’re going to be my caregivers.

Kevin Pho: So tell us, what are some of the things that you’re doing to cope with this possibility in the future?

Erin Paterson: For me, I found the best thing I’ve ever done is start being open about it and start talking about it. In my family, Huntington’s disease was a secret, and I know it’s that way in a lot of Huntington’s disease families. So I made the decision to go against the grain and start writing about what I was experiencing and start speaking at conferences.

One of the biggest differences in how I’m raising my daughter is that I’m also speaking to my daughter about Huntington’s disease. When we visit her grandpa, we say, “Grandpa is having trouble doing X because of his Huntington’s disease.” When she was little, he used to go to the beach with her, walk down the beach, and go into the water, and then it started becoming more difficult for him. So we would explain to her, “He can’t do that anymore because he’s not as stable, and he can’t walk like he used to.” We’ve just always had it as part of our conversation, so that it’s not this thing that’s revealed when she’s 16 and shocks and traumatizes her, because that really was what happened to me. I didn’t find out until I was in my early 30s that the disease even existed in our family. So we just wanted it to be a part of life. It’s just a normal part of our family.

Kevin Pho: Talk more about your book. What kind of stories did you include?

Erin Paterson: We have stories written by people who are actually living with Huntington’s disease. There is a woman from California who writes about how she’s always loved running, and running has been her coping mechanism. We have a young man who is living with juvenile Huntington’s disease, and he lives in Scotland. He talks a lot about how gaming and having cats and those sorts of things are what help get him through. He just has such a super positive attitude. We have a couple of scientists who’ve written stories in the book who are impacted by Huntington’s disease; either they have the gene or they’re at risk for the gene, so they’re trying to find a cure for themselves and for their family. I have a woman who had gone through IVF, and she did genetic testing on the embryos so that she could make sure that she didn’t pass along the disease in her family. So those are some of the really heartwarming stories in there.

There’s even a woman whose uncle was impacted by Huntington’s disease, and she, the niece, stepped up to be the caregiver for the uncle. It really inspired her to become a speech-language pathologist. For her, she just really wants people to know there are things we can do to help with trouble swallowing, so she wanted to write a story because she wanted to help other people. And that’s the main thing, the reason why everybody shared their stories in the book. They just really wanted to help other people.

Kevin Pho: Now, by sharing these stories, what kind of misperceptions about Huntington’s disease do you hope to clear up?

Erin Paterson: I think it’s more that there’s just a general lack of knowledge about Huntington’s in general. I know that there are a lot of people who people think are drunk or angry, mean people, when it’s just the symptoms of Huntington’s disease. Like I was saying at the beginning, when you go on the internet, you just see this list of symptoms, and it’s hard to really realize, well, how does that impact a person in daily life? That’s what we really wanted to share with these stories. It’s a person not just saying, “This is how my family is.” They’re getting into the nitty-gritty details of a day in the life of their parent with HD, or a day in the life of being a caregiver, and just really saying, “This is actually what it’s like.”

Kevin Pho: Now, can you share one or two of those stories with my audience? Just for those who aren’t familiar with the daily life of someone with Huntington’s, can you share one of those poignant stories?

Erin Paterson: There is a story about a woman who is helping her uncle move, and he had to go over everything time and time again. The process took the entire day for him to move his boxes into the house and to unpack his things, because he needed to know where every single item was, and he needed to go over every single item more than one time. So that’s just an example there.

A story that’s really touching to me is about somebody I actually met within the community. Her father had Huntington’s disease, and she tested gene-negative. After she tested gene-negative, it was like she didn’t have a right to have emotions over Huntington’s disease, and her family would say things like, “Well, what are you worried about? You tested gene-negative.” But in the meantime, her father was dying from the disease and getting worse and worse, and she was only in her 20s at the time. It wasn’t until her father passed away that she truly felt that she had the right to grieve the death of her father and the loss of her father over those 20 years as he lived with the disease.

Kevin Pho: So from a typical diagnosis, tell us the general time course of the disease.

Erin Paterson: Once people are diagnosed as symptomatic, they usually live for 10 to 20 years, and most people get the disease in their 40s and 50s.

Kevin Pho: What’s the patient support community like?

Erin Paterson: Not very good, I would say. There’s not too much out there. There are a couple of organizations that are really doing a lot of hard work to support the patient community. That’s just not enough support. I would say that the resources are limited.

Kevin Pho: In your ideal world, what more would you like to see in terms of support for people with Huntington’s or their caregivers and families?

Erin Paterson: There are so many things that impact a family that there isn’t any support for, and people are just trying to figure out how to make it work on their own. Just, say, for instance, my dad has to come down to his yearly clinic appointment. He lives two hours away. I live in Toronto, where the clinic is. In order for me to bring him to the clinic, I would have to drive up and back, up and back, up and back in one day, which would simply be too much, as well as attend a three-hour appointment. So I’m just trying to figure out how I get my dad to the appointment. He’s more advanced than the last time he was here. I don’t necessarily think he could come down on a car share on his own, so then who could be there to support him, and how are we going to get him there? Just trying to figure out how to get him to that one doctor’s appointment took me two weeks and 10 phone calls.

So if there were supports in place for things like that, for instance, in the hospital setting, having a support person on hand in case my dad needs it, or having some kind of service that helps people come to their appointments, or even for me, having some sort of emotional support at those appointments as well, because it’s very hard for me to go to my dad’s doctor’s appointments and be his advocate, because I know that’s going to be my future one day. That really does take a huge emotional toll on me, and it is something that I need a couple of days to recover from. It used to be a couple of weeks to recover from, but I’ve gotten better at that.

Kevin Pho: Where do you turn for support?

Erin Paterson: I have a lot of really great friends. I have a really great running community, and through doing this book, I’ve really met a lot more people in the community. Most of them I just know virtually, but they say, “Reach out to us if you need any support,” or “Reach out to us if you need any advice.” When my dad was in hospital, I was texting a couple of people, saying, “Is this right? Am I sharing the right information?” So just having people be able to answer my questions and provide support virtually has been really great. But really, there’s nothing like going and meeting somebody face to face, giving somebody a hug, and getting support in real life as well.

Kevin Pho: Now, for those families who are undergoing a Huntington’s diagnosis, how can they tap into these supports? Where can they find people who are undergoing a similar experience to what they’re going through?

Erin Paterson: There’s a really great organization that’s run out of the United States and the U.K. called HDYO, which stands for the Huntington’s Disease Youth Organization. Even though it says it’s a youth organization, they really do support the entire family. They’re really great because they’re focusing on being worldwide and helping everybody worldwide, so if somebody from another country contacts them, they will actually help you find supports within your own community.

Kevin Pho: Tell us some of the reaction that you’ve had since your book was published.

Erin Paterson: The reaction has been phenomenal. We became an Amazon number one bestseller in the first month, and the book has only been out for two months now. We have 20 reviews on Amazon, which is outstanding. I was lucky; I got the opportunity to go to a conference for HDYO just as soon as the book was released, and people were just coming up to me all weekend and saying, “I’m so happy that this book exists. Thank you so much for putting the book together,” or telling me about a story that really touched them and reaching out to the person who wrote that story. I even had people who were medical students coming up to me, saying, “I’m going to read this book because I want to get a better understanding of who my patients are going to be,” stuff like that. So it’s really gone beyond what I ever could have imagined.

Kevin Pho: So what’s next on the horizon in terms of advocating on behalf of families and patients with Huntington’s disease?

Erin Paterson: For me, I’m just going to continue writing about it, because there are not a lot of people out there sharing their stories, because they are afraid to share their stories. I feel that when you read somebody else’s story and you connect with something somebody has written, even if it’s just one sentence within a whole story, that can really help somebody get through the day. So as I go through things, as I’m going through being a caregiver for my dad, as I’m going through educating my daughter about Huntington’s disease, I just keep writing about it, putting it out there, and speaking at events, because that’s really quite important.

Kevin Pho: Why do you feel people are afraid of sharing their stories?

Erin Paterson: They’re afraid of being discriminated against. They’re afraid of losing their medical insurance, they’re afraid of losing their job, and they’re afraid of losing family members, in some cases.

Kevin Pho: Are there a lot of cases of those things actually happening?

Erin Paterson: I’m not sure. I haven’t met anybody who that has actually happened to, but I know that’s the main fear everybody has, for sure.

Kevin Pho: We’re talking to Erin Paterson. She’s a writer. She’s the author of the new book Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community. Erin, tell us some of your take-home messages that you want to leave with the KevinMD audience.

Erin Paterson: I think the biggest thing that I wanted to communicate is that being a caregiver is really tough. Caregiver burnout happens quicker than we can ever imagine, and when a patient is coming into the hospital with a caregiver, that caregiver might have a lot more going on than you actually realize. So I think it’s really important to treat people gently.

Kevin Pho: Erin, thanks again for coming back on the show and sharing your story, time, and insight.

Erin Paterson: Thank you so much for having me.