Some of the most valuable insights a person can receive when facing familial Alzheimer's disease (FAD) come from the stories of other people within our community.
In this interview, we hear from a member of the Youngtimers community about her experiences with topics like:
Navigating genetic testing for familial Alzheimer’s
Emotional and familial impact of genetic test results
The importance of mental health and support
Challenges of informing family members, including children
Why she chooses to share the realities around FAD, and why she chooses not to
This conversation reflects this member’s unique perspectives and experiences as shared with us on February 20, 2021. Her story is her own, and it adds a valuable chapter to the diverse narratives within our Youngtimers community.
This transcript has been edited for clarity and readability. For the full interview, listen to the recording.
LINDSAY: Today, we're talking to a member of the community who has helped me and continues to serve as an inspiration and a voice for our community. Thank you for joining us today.
COMMUNITY MEMBER: Yeah. Thanks for having me. I'm glad to chat.
LINDSAY: We first met in Toronto in 2017. We were in the audience, and they were taking questions, and you raised your hand and brought up CRISPR, the gene editing technology. It was the hottest thing in science at the time, and I was like, who is this woman? Would you mind just sharing a bit of your story with us?
COMMUNITY MEMBER: Sure. My grandmother passed from Alzheimer's and my father also passed from Alzheimer's. In terms of genetic testing in particular, we didn't know that the PSEN1 mutation lived in our family. I was always concerned about my future, the possibility of having Alzheimer's. As my dad was declining, my mother was really supportive in getting his blood banked to make sure that I could get his genetics tested in the future if I wanted to.
LINDSAY: Did she have a feeling something was genetic?
COMMUNITY MEMBER: I don't think that she had a feeling; I think that her love for me fostered her willingness to bank the blood, so that as science progressed, regardless of if my dad was still around at that point, I would have the ability to tap into that resource for information and understanding.
I went to see a genetic counselor and talked about my family history; we did the chart.
I don't have a family that's riddled with this disease. My immediate family upbringing was very transient; we didn't have a strong connection with our extended family. So all we knew about was my grandmother and my dad. And so on its face, when I was talking with the genetic counselor, it was like, “Well, you might have a propensity for late onset with APOE, but it’s probably pretty unlikely that you have any determinative mutations, because it would show up in your family more heavily.”
But because I was always so afraid of it, I thought, “Well, I would like to know.” All that's to say is, I got my dad's testing done at the urging of the genetic counselor. And it came back positive.
This is like seven years ago now, in 2014, so forgive me if all of the particulars of the way things played out are not super clear. But, I had this information about my dad and I understood what the implications were for me, like the 50/50 chance, the near 100% penetrance if I did have the gene mutation.
[Editor’s note: Learn more about the genetics of familial Alzheimer’s disease.]
At that point, it became really important to get long term care insurance ahead of any testing I would have done. And then, life is busy, too, right? So it was easy to think about the things that I needed to do first.
LINDSAY: What was going on in your life at this point? Were you married? Did you have kids?
COMMUNITY MEMBER: I was already married. And we did have young children, elementary school aged children.
And so, we got everything in place. And then it was “Okay, I can proceed.”
I sort of knew, once I got the information about my dad, that I would want this information for myself. It was just a matter of getting the other things in place so I could have this information for myself.
And so, I proceeded with it.
I have two siblings, and they were unfamiliar that this gene even existed. And what I did was, I said, “Hey, I'm finding some stuff out about dad’s health, and I'm going to move forward with some things about my health. I framed it as, “knowing the particulars of any of this will be very impactful, because it has to do with genetics; and you, by virtue of knowing any detail, would come to understand your own propensity or probability for certain things in your health.”
I wanted to keep it very general, because I didn't want to force this information upon them. And both of them opted in. They were like, “Yeah, I want to know about dad, and I want to know about you.” So, I proceeded with getting the testing done, and when I went to the appointment, my husband was with me. My mother actually came as well. And then I also had my siblings on standby.
It was very matter of fact. They just came in and said that I had the gene. I immediately texted my siblings telling them, and I remember being stunned, you know? Like, wow. And of course, getting emotional about it. I definitely cried, and I remember we went to get some food after and being self conscious; I'm a white woman with a fair complexion and if I cry, it's incredibly obvious. So I just remember feeling exposed at the place we were eating, and just wanting to get home, but at the same time, by coming home, I didn't want my children to see that I had been upset.
[Editor’s note: Members of the Youngtimers community often refer to “the gene.” Throughout this interview, when this community member refers to “the gene”, she is meaning “a genetic mutation that causes familial Alzheimer’s disease.”] .
Because as you know, in our community, there's a whole discussion about when to tell your kids and how to tell your kids. That's a whole other conversation. But I certainly knew, as elementary schoolers, I wasn't going to come home and share this news with them.
LINDSAY: What was your experience in deciding you were ready to find out your genetic mutation status?
COMMUNITY MEMBER: When I found out that my dad had the mutation, there was this sense of… it's not the right word to say, but gladness. There was this sense of certainty, like, “Okay, I can know for sure, if I want to, and be out from under this dark cloud.” Because this is the version that his mother had, and he had. If I don't have it, it's likely that I will not get this, right? So I really saw it as half full, as opposed to half empty. Like, wow, I have the opportunity to be free of this weight that has always niggled at me, you know?
I wasn't only thinking about the half full, I was also thinking, “Well, this is heavy stuff to know”, right? But what do you do when you know heavy stuff? It provides accountability to live differently. And I know that's even more now that I'm seven years out, that I do live differently. I love differently. I have a different posture towards life, that this reality in which I live provides me accountability. To have that disposition that if I didn't have that likely inevitable future.
I just wouldn't be as deliberate about sleep, exercise and eating. I wouldn't be as deliberate about relationships, and telling people I love them, and not taking fights seriously, and having a sense of what's really important in life.
“...I do live differently. I love differently. I have a different posture towards life...”
It also provides a lot of motivation to be active in our community, to participate in research, and to think about all the ways that I can be advancing the fight against this disease.
And you can do all that without knowing. Many people DO do that. But for me, there's also an element of self-awareness. It's not like you write a pro and con list that is the same for every person. There's a sense of, what do I know about myself? And how do I operate best? I operate best under certainty and planning and accountability. And knowing [my genetic status] afforded me all of that.
I will caveat all this by saying that I am seven years out, and I am really leaning into all of what I just described. But I'm also asymptomatic, right? I don't know how I'm going to feel when symptoms start to show up. I know the biomarkers show up long before, so that's likely already happening in my system anyways.
LINDSAY: And to clarify, biomarkers can be a bunch of different things. It can be your cerebral spinal fluid, proteins, amyloid or tau. Biomarkers are windows into your body, indicating that there is something happening towards disease, but it hasn't manifested into symptoms yet.
COMMUNITY MEMBER: Yeah, exactly. But I don't know how I'll react, if and when symptoms become more apparent. I am 41 and I have brain blips like any other person who's alive in the world.
There is a sense of wondering, when that happens, is that this, showing up? Or is it just life and the stress of COVID? Even when it does cross my mind, like maybe it's this.
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I've given myself grace to be like, “So what? So what if? It's okay.” And then that serves as another reminder of all the stuff I just described. Live like you want to live, right now.
You mentioned other categories of people, who know they don't want to know. I've had a conversation with my brother about this, and he was like, “I really admire your strength. I'm really glad for this path that you have taken and all that it's brought into your life. But for me, there's no way. I know myself well enough. There's no way that I could function on a daily basis, knowing that this was living in me and was going to manifest.“
And so I respect that certainty in him, too, that he operates better in the not knowing. So there's no easy answer. I think it's doing the self work to know how you operate best.
LINDSAY: That's such great advice. You need to turn inwards and listen to that voice. It could be that voice that is saying “not now”, because it's not ready to know, but that there's a growing sense that the information is going to be important to know in the future. It could be a continuum.
COMMUNITY MEMBER: Yeah, and you mentioned context. I was married, I did have children. I think about how this would play out in a dating scenario. What if you have this information about yourself; when would you share that with someone that you were getting emotionally intense with, and were planning to perhaps spend your life with them? Where on that spectrum do you inject this information?
Another big issue in our community is pregnancy, and do you just have a kid, knowing this? Or do you take measures to go through IVF and do pre implantation genetic testing (PGT) to make sure that you're creating someone that doesn't have this reality? That’s a whole other conversation as well.
[Editor's Note: This stands for in vitro fertilization (IVF) with preimplantation genetic testing (PGT). PGT is a screening test that can be performed on embryos created via IVF, which can be used to ensure genetic mutations are not passed down].
I just don't know how I would have been, in all sorts of situations but particularly those, if I wasn't already married and had kids. Would I have not wanted to know? I just can't say. All I can share is my experience.
LINDSAY: That's why we need to have these conversations. Each situation is different. I found out about my dad when I was 17, and although it wasn't explicitly said, I quickly figured out that I was at risk. I'm sure finding out in your 40s that this runs in your family is different. Context is really important.
COMMUNITY MEMBER: One thing I could not have imagined in finding out is that now, I'm thinking about when to tell my children with those same thoughts in mind.
So as they meet their people, like…. What duty do I have to inform them so they could inform their partner, or they could make decisions about their childbearing path, if they choose to have children? I didn't quite think that far out, and that sort of burdens me.
Even their choice of profession–maybe they would want to do something that was more oriented towards this disease if they knew this information. Am I robbing them by not telling them before they go into college? I just don't know. It's so fraught, and I don't think that you can know all the different things that are going to come up along this journey.
LINDSAY: You mentioned that you organized long term care insurance before you saw a genetic counselor. And once you know your status, you can't get that type of insurance. Is there anything that was helpful to do before undergoing testing?
COMMUNITY MEMBER: I recommend having a therapist ready, that you have a relationship with, that you're talking about this with. A genetic counselor is not a therapist. To be able to talk with a therapist, who can be that objective person about “why do I want to know?” and just help sort the pieces of it out for you.
You can do that with loved ones as well, but I tapped into a therapist after I knew that I had this, because it was definitely needed to deal with all of the emotions. I don't know that I got one leading up to it, and I think that that could have been a good approach, to have that clarity of thought about why you're doing this, but then also to have the established relationship.
So after you do get the news, you can have a place[/person] that knows you to process it. I did find generally, even though I started therapy after learning this news, that having an objective place where I could dump my reaction, my spouse's reaction, my changing perspectives… I shifted jobs pretty soon after I found out about this news. So I would just really encourage folks to consider getting a professional who is not a girlfriend, who is not a spouse, to help you with this.
“I would just really encourage folks to consider getting a professional who is not a girlfriend, who is not a spouse, to help you with this.”
LINDSAY: That's great advice. It kind of feels like you're holding a secret, and it’s your whole family’s secret. It can be liberating to talk to a total stranger who has professional experience with working through very serious, traumatic experiences.
COMMUNITY MEMBER: Yeah. And we're talking about it as individual people. There's this sense of autonomy, but I also think that if you are with a partner, navigating their views on finding out, and conversing through that -then there’s their reaction, and how that then combines with yours as a couple.
In retrospect, I think that having some sessions with my spouse involved could have been really valuable, because I was in a situation where my spouse did not want to find out. And I said, well, thanks for your opinion, but I'm going to do this.
And then, after we found out, I certainly went through a mourning period and grieved. But I really found the knowledge liberating, and my spouse found the knowledge constraining and burdensome and just carried the grief a lot longer than I did. And that showed up in just different ways in our lived relationship. So, you do have to think about what you want, but if you're with a person, you have to take their needs into account. That doesn't mean you don't go forward, if you do want it for yourself. But maybe you build a better infrastructure around how to deal with the fallout of the difference.
And similarly, if you're going to have children or you already have children, all of this plays into that. They're a part of the kids that you have made or will make. And even, as it ripples out, who you tell. If you have couple friends, does this become a reality in those relationships? Then what about the preferences of the partner? It has so many rippling impacts.
My partner is not a caregiver at this point, but caregivers are partners in general. There's so much emphasis on the individual whose body holds the mutation. And I'm not saying that that's not good, but I just think there needs to be a little bit more of an attention to relationship and community as it relates to this information and these choices.
LINDSAY: That’s true. Can you maybe walk people through what it was like to find out your status? You talk a little bit about how your perspective changed over time.
COMMUNITY MEMBER: Sure. I have already described the immediate reaction. There's sorrow, understandable.
I was actually in a really high stress, busy job whose season was in peak demand, at the point that I was getting this done, and taking time off work was significant, that I had to explain. It wasn't just like, “oh, I have an appointment, I'm going to be gone.” It was a circumstance where all hands needed to be on deck.
I wouldn't necessarily advise sharing this type of information with your workplace, but I didn't know. And I generally tend to be optimistic and maybe naive, and they were actually quite lovely. I'm not trying to suggest that anything went awry in my workplace, but I did end up telling my direct supervisor, and the overall head of the sector. And in retrospect, I wouldn't recommend that. But I felt like I had to, because I'm not a good hider.
That's something that has come out of this long trajectory of knowing this, that I have a better understanding of who I would tell and whose rightful business this is, as opposed to just thinking like, “I need to tell the truth, the flat truth.”
I think in analogies, especially when something's new for me. So for me now, I think about how you don't talk about intimate topics with other people, whether that's sexuality or finances. For some people, that's religion. For some people, that's politics. And this very clearly falls into those realms. It's totally appropriate to not divulge this level of information really with anybody.
And I didn't know that at the outset. It felt like I would be hiding or being untruthful somehow. So, back to finding out… I shared with my workplace, and I had taken the day off of testing and I took the day off after, just to really live into mourning.
I was really sad, and there was a movie out, The Fault in Our Stars. And it was about a young woman who was dying from cancer. So my spouse and I went to go see that movie the next day, because I wanted to cry. I wanted to feel the sadness, to sort of have camaraderie with other stories that felt tragic and ill timed, just to give in and vent to what is really tragic, to get this news that is traumatic. I didn't want to stuff it [down]. I think it's just really healthy to fully face hard news, and allow your body to feel it, allow your emotions to process it. And I wanted to support that.
We had gone to a matinee or something, and there were these adolescents sitting in the row behind us, and my husband started to cry as well. Like, seriously cry. And he's not much of a crier. And I knew that this film was generating that in him, because of what was real in me. This news that we had just gotten. Because there's a love story in this movie. I remember him trying to stifle it. I turned to him as I was crying myself, and I can't remember his exact words, but it was something like, “There's no way that I'm going to sob in front of adolescents in this movie theater.“
So, I gave myself time to feel sad. I didn't see my therapist the next day or anything, but that was also an outlet for me on the trajectory of dealing with these emotions.
Very soon thereafter, after intensely giving vent to these emotions and not moving to “fix it” mode yet. You know, I'm very much a planner and action-oriented like, “let's fix it, let's have some agency and do something about what our problem is, whatever it is.”
I think it was a Thursday and I took off the Friday, so I had the weekend before I actually had to return to work. So, that weekend I camped out. Not the whole weekend, but maybe a Saturday. I got all the books off the shelf of Barnes and Noble that were related to Alzheimer's. And I started reading, what is to be done? I bought a lot of those books.
I also started making calls. I called a local chapter of the Alzheimer's Association or a nearby medical environment that had an expert who knew about Alzheimer's. [I found out about DIAN].
[Editor’s note: DIAN stands for Dominantly Inherited Alzheimer's Network. It’s an international research partnership of leading scientists who are studying familial Alzheimer’s disease. Learn more about participating in research.]
We ended up chatting. And all that's to say, I had my first visit for my [clinical trial] intake in August, having found out [my genetic status] in June. I actually missed my son's birthday that year, which I feel badly about, but I was like, “I'm getting in. I'm getting started.”
LINDSAY: If somebody has the opportunity to set it up the way they want it to, would you recommend taking a certain amount of time off of work to know this news?
COMMUNITY MEMBER: Yeah. I've talked to others who have done it more methodically, and I think I would take at least a week if I could, finding out the news at the beginning of the week.
If you do have children, being able to get away with just you and your spouse, doing something pleasurable for you both, away from the children, so you can process it and love on one another.
I've been in communication with someone who didn't tell other people that this testing was actually going on, even their closest intimates. People generally knew they were going to be getting tested. But other people outside their most intimate bubble didn't know. So there wasn't pressure to share.
“...this news can really be burdensome to other people. What are they supposed to do with it?”
And then definitely not sharing, even if you have the inclination to share, really have some self-control. Maybe set a timeline for when you will share, but do not allow yourself to do it right away. Because you can never undo that. Not only for the sake of self-protection and family protection, but also, this news can really be burdensome to other people. What are they supposed to do with it? How are they supposed to interface with you? How might that new knowledge in a friendship affect the friendship?
I made the mistake of sharing in a couple of situations because I have this hyper honesty–I [feel like] have to be transparent or I'm being a liar, you know?
I would do that differently, even if I would choose to tell someone, at least just building a buffer, so I'm not in the ‘fresh reaction’ time period, that I can have a more thoughtful process: Who should I tell for my sake? But also, how will this affect them?
LINDSAY: That's such a good point. I remember talking to somebody that when she found out, she told people, and she said,” I had to be the one to help them cope with that knowledge.”
That's not how it should be. They should be the ones who are lifting your burden from you, not adding the burden. What guidelines do you use when deciding who to tell?
COMMUNITY MEMBER: Yeah, this came up in our once-a-month at risk, asymptomatic support group, through Youngtimers.
[Editor’s note: Learn more about our support groups.]
We were discussing some of the disappointments that have come about when people don't get it - either your status, or having a parent who's going through this.
One of the questions I thought was really helpful was “what are your expectations for someone you would tell?” Not just unburdening yourself. Even if they are good friends, what would it be like? What would their behavior and care towards you be like, when you do share this sacred news with them? And maybe getting a grip on that yourself, before you tell anybody. Even if it's just setting the stage for, “I don't exactly know what I'm going to need, but I'm going to want to have some regular check in, and some honest communication through this.”
That was really a good question for me to ponder and, frankly, further established my posture that I'm not telling anybody. Because my most intimates do know, and I'm getting what I need from them. I can't foresee a circumstance where I would need something from someone else.
There's something called stereotype threat; you live into a stereotype about yourself. I know for me, if somebody knows or even suspects that I have this, there can be self-defeating behavior where I begin to live into what I think I would act like if I were positive and a little bit symptomatic, like dropping words because I'm anxious about their perception of how I am functioning. I have enough performance anxiety just as a regular human being. I don't need the additional layer of me thinking that you're judging me, or evaluating me on this level. So again, I know myself well enough that I don't need that extra anxiety.
LINDSAY: Let's say somebody has just found out their status, and it's positive for a mutation. What would be the first thing you would say to this person?
COMMUNITY MEMBER: I would definitely suggest taking the time to engage the emotions. But then, caveating it with something like, “this was my experience and this was useful for me, but do what feels right for you in your own body, in your own environment. Listen to your needs.”
And then just say, “I'm here. I'm an ally. I've been living with this for seven years and there are a lot of stages of coming to acceptance and living within it. So I'm a resource should you want that resource.”
I think that's what I would say.
LINDSAY: There's a lot of hurdles to face in this community. Can you talk a little bit about productive grieving and how it has helped you face some of those challenges?
COMMUNITY MEMBER: First, as I said, living into the sorrow and the trauma of this, and cultivating awareness of how that grief is going to show up now, throughout your life. It's important to dive into the first-time news, but being aware of and expecting difficulties, whether it's sorrow, or anger, or rage, to show up throughout living life in the state of knowing.
It's not necessarily a negative thing. Like I've said, I feel like I am living a more liberated, rich, productive life given this news, but it doesn't mean that I'm not in touch with rage sometimes, or sadness, for myself.
When we would go to the annual visit [for the DIAN clinical trial, where they do brain scans and cognitive testing], we inevitably wound end up getting in a fight on that trip. It was the emotional stuff around this reality that wasn't right in our face all the time, but then you go to [WashU in] Saint Louis, and you're in all these machines and having these cognitive tests, and it's really front and center, you know? So that's grieving.
Also, talking about it. I always like to talk about something. I think it's really healthy, so even out of those arguments, we've been able to foster a deeper connection.
And again, trying to approach it, but then giving space to the person who isn’t ready to approach it in the same way. Like for me, I've been to every family conference that I could attend. For me, that was really important to be able to be with other people who got it, to be able to engage the researchers and the science. But my spouse just started coming with me recently. And that was his timeline. And I had to respect that even though I wanted him to come with me sooner. He wasn't ready for that.
[Editor’s note: DIAN, the Dominantly Inherited Alzheimer’s Network, hosts family conferences for families impacted by familial Alzheimer's disease. Learn more about DIAN Family Conferences.]
Being aware of emotions in your body when they do arise. And again giving outlet to them.
A good cry in the shower when stuff comes up for you. I'm a big believer in exercise, and even maybe having a punching bag. That all feels productive.
I don't see a therapist now. I don't feel like I have a pressing need for one. I don't recall how long I went on with this therapist that I mentioned when I found out, but it seemed like I had reached the end of what I needed from that experience, and just phased out of it. But again, maybe there will be another season of life. If and when symptoms appear for me, I'll need an objective space to process that.
So I think, self-awareness, and being open to what comes up for you and then being deliberate about not stuffing what comes up for you, and giving it relief. I think that would be productive grieving.
LINDSAY: I've heard you say it is important to recognize the emotions that you're feeling because there's probably a reason why you're feeling them.
COMMUNITY MEMBER: This past year has been so heavy on so many levels, and I've tried to engage in some body work.
Sometimes you can't even point at it. Like, there's tension for me and there's sorrow for me. There's a whole lot of crap going on in society, in my community, in my personal life. I don't think, cognitively, we can always point at why I am feeling this heaviness in my body or this tension in my shoulders.
But I've done some meditations where you're really deliberate in thinking about where that heaviness or sorrow sits in your body. There is one really great one that you try to get a grip on the place in your body where you were feeling the angst, and then you also have a sense of kindness in your body. Where does your body feel good?
And you just allow them to sit next to one another, to just live alongside one another. What does it look like for the kind part of your body to be kind to the part of your body that's carrying the weight? And they went on with some more visualizations, which were really therapeutic. I'm still learning how to do this.
LINDSAY: Yes, your mental state really plays a big role in your body. We touched on this a little bit earlier, and said we would come back to it. Family dynamics can come into play, as this is a hereditary disease. Do you have any recommendations for talking to family about this disease?
COMMUNITY MEMBER: Yeah. I guess it depends on what your goal is.
There can be lots of goals related to who you tell, or who you approach. One goal that comes to mind has to do with actually advancing the fight against this disease.
There was a conference where I asked Dr. Bateman, what are the tactics that we, as research participants, can employ to continue to produce knowledge in this field, and ultimately create meaningful interventions that stave off symptoms or cure this disease?
He said, first, stay involved. Don't drop out, because your involvement gives the study power. There's this concept of statistical power in research where numbers matter, and even my one body that joins and stays involved to completion in a study, and then joins the next one–that creates statistical power to provide answers. So I'm doing that. I have control over that.
“Don’t drop out, because your involvement gives the study power.”
Then, he also said, get more people involved, if possible.
The third one was advocacy.
But in terms of who to tell, getting more people involved in your own family could be something to consider. At one point, I considered generating a form letter to my extended family on my dad's side, who I am not close with, who I don't have an established relationship with. But, he had several siblings and I don't even know where all of them are located. Not just the siblings, but their offspring. I thought about drafting a letter that was similarly wide open as the way I approached my siblings, to say something like, “I'm involved in research. I've learned about my dad's health, which could have implications for you, if you would want to know about it.” Something that would allow them to opt in, and wouldn't burden them with knowing.
Maybe that would increase participation in DIAN. I haven't done it yet. It's easy to put off, right? But that's something that I've considered.
Another goal I have is not wounding my children with this reality. And I'm in the throes of thinking about that, given my kids aren't in elementary school at this point. They are older. And I haven't come to the conclusion.
I've talked to a lot of other people about this, all who have done it in different ways. And then I come back to my spouse, and we talk about it, and we lay out the factors and the dimensions. And up till now, our conclusion has consistently been that the time is not right, not now.
And I will continue to do that, to revisit periodically, not on any sort of Outlook calendar that's marked, but just as it comes up, as life continues.
I will continue to have conversations with other people who know what it's like to be in this circumstance, and who have made choices around it, and have had experience regarding the consequences of those choices. And I will take that into account. What is true for me? What is right for me? Talk about it with my spouse. And also, consider the personalities of my children.
One thing is very clear for me is that when I tell my kids, it will be plural. It will not be one kid, and then telling that kid you can't tell your sibling. Because I want them to have one another to commiserate with, and for our family to be able to discuss it openly. So that is one point, that I wouldn't do it until the least common denominator in our family is ready, for everybody to know. So that's one piece of the decision, but in terms of when and how, boy… I'd love to hear some future podcasts on this topic from other people.
[Editor’s note: This interview inspired both an interview and a Q&A session with Dr. Bonnie Hennig-Trestman, Assistant Professor at the Virginia Tech Carilion School of Medicine and Director of the Huntington's Disease Program at Carilion Clinic. She is also the author of the book, “Talking with Kids about HD” which genetic counselors recommend to parents trying to navigate talking to kids about inherited neurodegenerative disease.]
LINDSAY: Thank you so much for taking the time to talk. I always walk away from our conversations feeling inspired.
Like you said, it's not like you're always thinking about it, but there are certain days when you are confronted by it, and I just appreciate that you're willing to confront it.
COMMUNITY MEMBER: Thanks for inviting me. It's always cathartic to just be able to have space to have these conversations, and I think it's a particular value knowing that somebody might hear it and take something valuable away from it, from their own situation. That's empowering. So thanks for the opportunity to do that.
If you want long term care insurance–I don't have it–but if that's something you also want to go about, then I would say that's one for financial advice.