Voices from the Multiple Sclerosis Community

Episode Transcript

Dr. Correa:
Saludos and hello. I'm Daniel Correa.

Dr. Nath:
And I'm Audrey Nath.

Dr. Correa:
We're two neurologists and fellow brain geeks hosting the Brain & Life Podcast. This show, the Brain and Life Magazine and website are all brought to you by the American Academy of Neurology.

Dr. Nath:
We're so glad you're joining us. We'll be here each week for conversations and interviews with community members, celebrities, and experts on brain health and living with neurologic conditions. Now, let's get to today's show. Daniel, you know we've spoken with so many neurologists and some celebrities on this show about neurological conditions, but today we're going to do something different. We are going to focus on individuals' experiences with multiple sclerosis or MS.

Dr. Correa:
At the start, Audrey, you're interviewing Lisa Cohen about how MS took her away from the music industry, but led her to a life as a rockstar with MS.

Dr. Nath:
Oh, yes. And Daniel, you had the unique opportunity to speak with Dan and Jennifer Digmann about living together as a couple with two different types of MS. They're partners in life and each other's caregivers.

Dr. Correa:
I hope everyone enjoys today's episode and please reach out to us on social media, or however you like, about other topics and voices you want to hear from.

Dr. Nath:
I am so excited to be speaking with Lisa Cohen today about her journey with multiple sclerosis. So y'all, Lisa is a modern day Renaissance woman. So, a lawyer and an indie music promoter, a number one best-selling author, photographer, knitter, and now founder of ciGODDESS, where she advocates for women with MS and other chronic diseases to live their best lives. I am here for it. Lisa, I have so many questions for you. In your book, you were talking about how your life was on the up and up. You were going against the path of least resistance and leaving the law firm job to a career in the music business and photography. And that's when your MS symptoms hit. Can you tell our listeners, what did you experience, and what did you think was happening?

Lisa Cohen:
Oh, yes. Well first, thank you for having me. I'm really excited to be here. I appreciate you're taking the time to interview me. But yes, wow. That was quite an experience. I finally had left the law firm, the path that I was supposed to be on, even though let's face it, I was miserable. I was on the path of the best and the brightest then. Basically I've always been told, "Well, you can be a doctor or a lawyer." And I'm squeamish, doctor was not happening. So I did the straight path from the high-powered law school, right into the high-powered law firm. I suffered, really. I couldn't stand it. But I toughed it out for a few years, finally paid off my loans, and finally had the courage to escape. I got out of that and through just a series of coincidences ended up in the music business at an indie record label, helping to promote those artists. I was taking part-time photography classes, and I was just loving life at that point. I said, "This is where I'm supposed to be. This is great." I was doing that for a little over two years, and then all of a sudden, I started developing numbness in my left hand.

Lisa Cohen:
I thought, well you know, we've just been doing a lot of data entry for this one band. Maybe I have carpal tunnel or something like that.

Dr. Nath:
Yeah, seems more likely, right?

Lisa Cohen:
So I didn't think a lot of it, and it came and went, came back. But then I started having problems with my vision in my left eye. I thought, well, yeah, not quite sure what that is.

Dr. Nath:
That's harder to explain.

Lisa Cohen:
I was having trouble seeing. Okay, I'm a photographer. Can't see really out of my shooting eye.

Dr. Nath:
Oh, no.

Lisa Cohen:
That was the problem. So on this photo check in Morocco where I can't see out of my shooting eye, I'm going, what is happening? And literally a few weeks after I got back from Morocco, I woke up one morning, and I was numb from the middle of my back down through my toes. So okay, obviously something is really wrong here.

Dr. Nath:
But you're in your 20s. You're healthy, and this is when this happens, right?

Lisa Cohen:
Yeah. I went to my primary care physician. I think I was lucky that I happened to have all of these symptoms happening all at the same time. Problem with the vision, numbness in my back down to my feet, problem with numbness in my hand. And he immediately sent me to a neurologist who specialized in MS. I think he just figured, these things happening together, that's got to be what it is. And sure enough, that's what it was. They sent me for an MRI, and they also sent me to an ophthalmologist who was able to see it.

Dr. Nath:
Yes. Look at your optic nerves, right?

Lisa Cohen:
Exactly. So within less than two weeks, I was diagnosed.

Dr. Nath:
Wow. So this is your first MRI, right?

Lisa Cohen:
Yes.

Dr. Nath:
First of all, now you have to do this routinely.

Lisa Cohen:
First MRI. Even that was terrifying-

Dr. Nath:
I'm sure.

Lisa Cohen:
... to have to do that. The whole experience was scary. I just remember ... this is why it's great to have support. My dad is amazing. He called me after the MRI and he paused and I said, "Oh, he's scared to ask me. He probably thinks I'm nervous." So he said, "Well, let me ask you, did they find a brain?"

Dr. Nath:
He's still roasting you, even as this is happening.

Lisa Cohen:
Yes, that was the most perfect thing that he could have said. I laughed and that just broke all of the upset...that was a good way to start with that. But then after I got my results, I find out, oh my God, multiple sclerosis. My first thoughts were, okay, multiple sclerosis, multiple sclerosis. The doctor's talking to me about, "Well, luckily we now have these medications available. Before we didn't have them." That's when they were still doing the ABC drugs. That's all they had at that time. And he's like, "Yes, we have subcutaneous medications." My mind is going, subcutaneous, subcutaneous. Wait, needles. And that's what I fixated on. I was more fixated on, oh, my God, a needle. Really? How am I ever going to do that?

Dr. Nath:
Many people do.

Lisa Cohen:
More so than the MS. And my first panic was, "Well, this is not something fatal. I'm not going to die from it, right?" He's like, "No, you're not going to die from this." I was concerned because my mother had a few different autoimmune conditions actually.

Dr. Nath:
I see.

Lisa Cohen:
And she died from scleroderma. She died relatively quickly from that because it affected her lung tissue. So my first panic was, oh my God, do I have something that's going to kill me? So I didn't have something that was going to kill me, but I had something that required needles, which, wow, okay. That was what I fixated on. But my next thought was, well, multiple sclerosis. Does that mean I'm going to be disabled right away? How soon am I going to be in a wheelchair? Am I talking a week, am I talking a year? It made me feel like I had to stop everything.

Dr. Nath:
Just preemptively.

Lisa Cohen:
Exactly.

Dr. Nath:
Yeah. Because you didn't know, when is that shoe going to drop, right?

Lisa Cohen:
That's exactly what it was. And for the longest time ... I love the way you put that because that's exactly the way I put it. For the longest time I was waiting for the other shoe to drop.

Dr. Nath:
I say this for any of our listeners who aren't aware. So multiple sclerosis is an autoimmune disease where the body creates antibodies that attack the myelin around nerves. This makes it harder for nerves to communicate, and then that can cause deficits, such as motor deficits, weakness, sensory deficits such as numbness, which is part of what you experienced. It can affect the optic nerve and then affect vision. Essentially there are medications that can help prevent flare-ups of the disease. And we're talking about MRIs because people with MS then have to have MRI scans every so often, around every six months or so. You're going to keep having MRIs for a long time. MRIs are basically can be loud. I've had a bunch. They're loud, and you're in a bit of a confined space. I'm always curious about what people's strategies are when they have to do MRIs all the time, which you do.

Lisa Cohen:
Exactly. Well, fortunately I'm not claustrophobic.

Dr. Nath:
Good.

Lisa Cohen:
But the idea, for people who are listening and they've never done one, they basically slide you into this tube. And if you've got your eyes open, you're aware of just how close everything is. Strategy number one, eyes closed the entire time.

Dr. Nath:
I cover my eyes with a towel. Yeah.

Lisa Cohen:
Exactly.

Dr. Nath:
Yeah, for sure. Then some people, they have their go-to music, but earplugs work. Earplugs and trying to sleep, that works. Meditation maybe. Whatever type of mindfulness I guess. So this all happened out of nowhere. You were just about to start on this new path. I'm curious about something. Can I ask you this question, what is your ethnic background?

Lisa Cohen:
African American.

Dr. Nath:
Okay. I was curious about that because there's this really outdated notion that MS is a disease of Caucasian women. That's not true, even remotely. Women of color totally get MS. If anything, African American women can have a more aggressive course of MS than Caucasian women. I'm curious, since you've done so much advocacy with MS, do you find you're in largely white spaces when you're doing that kind of work, or is it pretty diverse?

Lisa Cohen:
Well it's very interesting, first of all, the subject. Because I actually was asked to write an article about this-

Dr. Nath:
Oh, whoa!

Lisa Cohen:
... which I did this past year. It basically was asking about research ignoring the black community in a lot of ways, while doing the clinical trials and things like that. But one of the ways that I started the article was exactly what you're talking about, that this is considered a Caucasian disease. Now for me, I never thought of it that way because it is in my family. My father's first cousin had MS. I remember seeing him when I was a child so I knew about MS. I used to do the MS Readathon in school to help raise money for the MS Society-

Dr. Nath:
Oh, wow, even before you're diagnosed?

Lisa Cohen:
... growing up, when I was a child.

Dr. Nath:
That's awesome.

Lisa Cohen:
So it never occurred to me that black people don't get MS because, well, I already knew that.

Dr. Nath:
It's just good that there's representation, and that including people of color know these resources are there. Do kids notice? I'm curious.

Lisa Cohen:
Kids notice. Actually, kids used to notice my cane covers because I used to have ones that had sparkles on them. And children, they would be holding onto their moms. I could see them stop, trying to turn around and look because they liked how the covers looked. It's really interesting that you mentioned that with the kids, because one of my initiatives right now that I'm working on, Overcome the BS of MS, that first book, that was really about trying to help women with, oh my God, what do I do now? What's the first step? How do I even begin to move on from here? What do I do next? That's supposed to help you get unstuck, help you get moving. Now the phase I'm in I guess is more of not, well, how do I start moving? It's like, well, how do you thrive? What can you do to make your daily life experience something that you love, so you can create this life that you love?

Lisa Cohen:
And little touches like that; are you going to have bling on your canes so the thing feels less medical, or so that kids will be fascinated by it and smile at you or want to be around you? Even for example with red lipstick, I have some on right now. I tend to wear it. That tends to be my thing.

Dr. Nath:
Oh, I like it.

Lisa Cohen:
It's my whole thing. My new book I'm working on is called, Wear Your Red Lipstick. There's a whole lot behind that. I've gone from doing my work with a friend where we were doing makeovers for women with MS, going from makeup makeovers to mindset makeovers right now, which is what I'm doing with the coaching. But the whole concept of wearing your red lipstick, not being afraid to be seen, not being afraid to be different, not being afraid to be unique. I mention that because I had gone to visit friends. My friend's wife was concerned that their daughter, who was four at the time, might say something crazy because I had crutches. She's like, "Oh, I don't want her to say something." She feels bad or she's embarrassed or whatever. What their four-year-old daughter did was walk up to me and said, "I like your lipstick."

Dr. Nath:
Oh, that's wonderful.

Lisa Cohen:
Meaning, the red lipstick. I said, "That's the perfect example." It's like, you being you and being yourself and not being afraid to wear the red lipstick and stand out. Even a child, they're going to come up and recognize, oh, this thing about you being you, that I like. So that's the type of thing I'm hoping that I can help women with chronic illness be able to do, and be able to experience in daily life.

Dr. Nath:
When you work with women with this, does it take you back to a time when you felt like you did not want to be seen? Do you still remember that really viscerally?

Lisa Cohen:
Oh, absolutely. Absolutely. Because I feel that for a lot of women with chronic illness, and if you have a noticeable disability on top of that, I feel that for a lot of us there is this feeling of being invisible. Society looks past you. I don't know whether it's because they're uncomfortable and they don't want to look at you, or it's just for some reason you're discounted. So that idea of, well, I'm already invisible to them anyway, and I'm not feeling well right now anyway, so why don't I just sit over here on the sidelines and hide? I think it's very, very easy to fall into that. I've definitely been there, so I know what that's like. I think it probably is difficult, if not all the time, but sometimes, to feel like, okay, I think I want to be seen. Or let me actually go out and people are going to see me. I do think that can be tough.

Dr. Nath:
I think that applies to so many people out there that are listening with different conditions. I'm curious, for people who are listening to you and thinking, I think I need a little bit of that in my life, if they want to get in touch with you?

Lisa Cohen:
The easiest way to find me is to go to my website, cigoddess.com. Then you can find out information about what things I've got going on, what programs I might have in beta. You can click into social media sites that I have, from the website.

Dr. Nath:
Well, thank you for joining us today and spending even a few extra minutes with us. I'm really inspired. I think I take a lot of this to my own life, just in other ways. Just in terms of how we can just make the best choices that we can, given the cards that we're dealt. Thank you so, so much for joining us. Please come back.

Lisa Cohen:
Thank you so much for having me.

Dr. Correa:
Wow, Audrey, that was a great interview. It sounds like Lisa was living her best life in the music industry, only to have her world turned upside down by the impact of MS. It's great to hear how she was able to move forward since her diagnosis.

Dr. Nath:
Oh, she is such a bright light. I just love how she's embraced her new life.

Dr. Correa:
Audrey, in our next interview, we get to talk to Dan and Jennifer Digmann, a couple both living with MS. They too have transformed their experiences into support for the broader MS community. For some background about the types of MS that they live with, Dan Digmann lives with relapsing-remitting MS and Jennifer lives with primary-progressive MS, or PPMS.

Dr. Nath:
Whoa, whoa. So let's get this straight, what these different types of MS are that you're talking about. So relapsing-remitting MS, sometimes you'll see this written as RRMS, is when a person has MS attacks that cause inflammation and damage and then improve between these attacks. So basically the relapses are the acute attacks, and then there's remissions in between.

Dr. Correa:
Less commonly, some people have a type of MS that may start with an attack of inflammation, or smolders along slowly and then goes on over time without a recovery between events. That's what they often will refer to as primary-progressive MS, or PPMS. To add to that, some people start off with relapsing-remitting, and then it changes later in life into what they call secondary progressive. So it turns out to be like the primary progressive, but it happens later after they have already had the RRMS or relapsing-remitting diagnosis.

Dr. Nath:
Absolutely. MS can look like a lot of different things in different people. We're going to hear about two experiences when you talk to the Digmanns.

Dr. Correa:
Thank you all for listening. I hope you enjoy this interview. We're here with Dan and Jennifer Digmann. They met at the National Multiple Sclerosis Society in 2002 and married in 2005. They each dedicate their lives to advocating for the MS community as public speakers, national award-winning bloggers, and co-authors of the book Despite MS, to Spite MS. Their awards include induction into the National MS Society's Volunteer Hall of Fame for their advocacy work. Thank you so much, Dan and Jennifer, for joining us today.

Dan Digmann:
Thank you so much for having us. This is exciting.

Dr. Correa:
I think it's always important to point out that none of us and no one is defined by a condition, a job, any specific thing. I'd like to start by learning about each of you. Can you share with me some of your place in life and hopes and dreams before a neurologic diagnosis even came into your life?

Jennifer Digmann:
That's funny. I will answer because I have been living with the disease slightly longer than Dan. And just to ask that question, it's really difficult for me to remember what life was like before multiple sclerosis, because I think that this disease in a good way put my life in order. I had just graduated from college, so I didn't have really the structure, or I didn't have the focus that the disease gave me. So I think with the MS, because of my diagnosis, it put my priorities straight. I really wanted to be surrounded by my community. It helped me realize what was important.

Dan Digmann:
I think for me, before I was diagnosed with MS, I had just truly started a dream job. I had worked in newspapers for about four or five years after I graduated from college. I had just started working at Central Michigan University, working in the publications' office. That's always been a dream to be working at a major university. I was planning on maybe one day teaching and then obviously as a writer, there was always this goal to write a book. I don't know what about. But that was really just the goal that I had, just my eye set on something bigger within the writing community.

Dr. Correa:
Hmm. Jennifer, you mentioned that really the diagnosis and coming to the diagnosis has been a formidable part of your life. It's actually effectively coming into your own as an adult.

Jennifer Digmann:
I was diagnosed eight days after I turned 23. So I had just graduated college and six months after I graduated, I was diagnosed with MS. Wow, talk about a fork in the road, and it really put things into perspective for me. Unfortunately, or fortunately, depending on the day, I have a fairly progressive form of the disease. And so I progressed rather quickly and that will put things into perspective. I'm going to keep going back to that for me, but it was pretty life altering. But it's been, good heavens, 24 years. So I think I've adjusted and made multiple sclerosis, not my life but a significant chapter, a significant part of my life. But I control it, and I couldn't say that 20 years ago.

Dr. Correa:
And for our listeners, to understand a little bit more about what it is as a diagnosis and for you, what were the symptoms that first drew your attention that something was going on, something needed to be checked out?

Jennifer Digmann:
I had numbness in my feet, which my doctor explained away as bad footwear. Then six months later I had numbness in my hands, which my doctor explained away as doing too much homework and writing papers, back in the day when you long form wrote handwriting. Then six months after that, she couldn't explain away when I had double vision, and one of my eyes wouldn't move. So I saw an ophthalmologist, an eye doctor who can look into things like that, and then he referred me to a neurologist.

Dr. Correa:
Dan, how was your experience with the diagnosis and the whole workup? How did it come to you? What really brought your attention to the symptoms and the condition at the beginning?

Dan Digmann:
I had started to have numbness in my chest. I mean, I had it in my fingers kind of, but then I had gone to a conference down in Detroit. I had gotten a newspaper because what a great thing, I'm not working. Let me go, and I'll read the paper tonight. I'm going to lay on the hotel bed and read the paper. I rolled over to read it. Honestly, I felt like I was laying on a towel, or there was some sort of blanket on the bed because I just felt this tightness in my chest and there was nothing there. So I thought, okay, well, I should have the doctor look at this anyway. So I went, and he started to do some testing and everything. And that was probably in late October and by, it was December 17th after all the tests, they had said most likely the cause of my symptoms was multiple sclerosis. And that's what I always tell people is when you're seeing your doctor, be sure to be your own best advocate to say what's happening to you. Because at that point in time, see, I was diagnosed, I actually got the formal diagnosis in 2000, but a year prior to that, I had said something to my doctor. Because when I was driving to and from work, and I'd look down to change the channel on my radio, I'd feel this shocking sensation go down my spine.

Dan Digmann:
This was just part of a physical where he says, "Sir, is there anything else bothering you?" I had said this, and he had chalked it up to me being a little overweight, a little chubby. So I was pinching something off at my stomach. Then a year later, I'm having numbness in my hands and in my chest, come to find out then as somebody living with MS, you realize that's Lhermitte's syndrome where you have that shocking down your spine. So where it used to be, you would have to have multiple episodes of MS type of things for them to draw the conclusion, that I had that in my records to say, okay, well, he had this. It's like, then with everything I was experiencing at that point in time, they were able to narrow it down. And then I had gone to a neurologist who then did all the other tests, ie spinal tap and everything, to see what was there. And then maybe, probably about a month after that initial meeting with the neurologist, they had said, "You have MS." I think that was something where, that was kind of hinted at, and those were things I kind of thought was coming. So really the actual diagnosis was a relief because then there were no longer the unknowns. It's like, okay, so this is what you have. How do we fight this? What can we do?

Dan Digmann:
So that's where I was diagnosed with relapsing-remitting, and now fortunately 23 years later still relapsing-remitting. That's a positive, really. So that's how it all came about. I've been maintaining as best I can.

Dr. Correa:
That's good to hear. You both mentioned that as a part of your evaluation and workup, you had lumbar punctures or spinal taps. That unfortunately for many of the MS community is a very common test and requirement, but it can be sometimes a barrier and such a fear around different procedures. What would you tell other people if they're getting this evaluation, or even any other medical diagnosis, and the doctors have to talk to them about a lumbar puncture or a spinal tap? What was some of your experience, and what would you tell other people about it?

Jennifer Digmann:
It solved a mystery. You had to go through it, and on the other side was a diagnosis. I hadn't been dealing with it. I had started having numbness. I'm maybe sick like a year before. You're wondering, why are my feet numb? Why is my hand numb? What's going on with my eyes? And just to get this one test, as uncomfortable as it may have been, and fortunately it wasn't uncomfortable for me. I had a really good neurologist. But once he did that, he was able to conclusively tell me, "You have multiple sclerosis." And that answered so many questions. Granted, it made so many more.

Dr. Correa:
I know many people sometimes, they're afraid of the next test or the procedure. Sometimes they might be afraid of the procedure itself. Some people are afraid of what it's going to mean. But just even having that information and being able to start a conversation with your neurologist, whether or not you have MS, or whatever is the condition they're testing for, it's the information that's going to help you to make decisions. So Dan and Jennifer, you both met after already having had this diagnosis, after starting to find a new rhythm and a pattern for your life. Tell me some about that meeting and what it was to meet another person and bring another person into your life, with something you share like this.

Dan Digmann:
I turn to her.

Jennifer Digmann:
I don't want to brag, but I do want to brag. I was using an Amigo, a scooter. I'm in a wheelchair now but back in the day I could be in a chair, and I didn't need my seatbelt. But I met Dan, and I wasn't walking. And that did not deter him. And that was amazing because he's one of my people. He's in my community, he understands, so that was really helpful. And both Dan and I, I don't want to speak for him, but we went to this function, it was an MS function. We went to learn information, and we just so happened to meet each other and hit it off. He's really cute. I'm sorry, I just had to throw that in there. We have multiple sclerosis in common, but that makes up just a small little fraction of what we talked about. And even still, we talk about so many other things. It's what led us together, what introduced us, but it's not the focus of our marriage or our relationship.

Dan Digmann:
But the fact that I have MS, she has MS, I mean, those were some major things that we had to consider. But it was never like, should we not do this? It was like, how are we going to make this happen?

Dr. Correa:
How was sharing that understanding about your MS and what you're living with different for the two of you from your past relationships?

Jennifer Digmann:
Because fatigue is a huge symptom of life with multiple sclerosis, if I tell Dan I'm really tired, he will never say, "Oh, you'll be okay." He gets it. He knows what fatigue is like. Or if he is just really worn out, or if he's frustrated with something that the disease is doing to him, like it's an evil monster inside of him, I can kind of get it. I think it's got to be hard for boyfriends or significant others who don't live with the disease. I share the same disease so I can ... I don't understand everything he goes through but for a large majority, I get it. And likewise, he gets it. He doesn't know what it's like to be in a wheelchair, but I don't know what it's like to have to be a caregiver for a woman in a wheelchair and can empathize. I think that's been really good.

Dr. Correa:
How have you talked about caregiving for each other as life and MS moves forward?

Jennifer Digmann:
The reality from the get-go, Dan took the responsibility. He knew that he was going to be my primary caregiver. We had that. Fortunately, we were able to get a caregiver to help take care of me while Dan's working. I think as we've been married, it's interesting. He was always the caregiver, but when he gets sick, he needs me. So it turns things a little bit on its side where he realizes, yes, he can need a caregiver and it's okay. He doesn't have to always be strong. So I think caregiving, it's been an ongoing process for us. We didn't really have a conversation about it before we got married.

Dan Digmann:
And I think it's really, in a relationship you play to each other's strengths. I mean, because I always tell our friends, "If you want us to come to any event or anything, you need to talk to her." Because she maintains the schedule and the calendar, because I don't do that. It's like, oh, I'll remember. And she takes care of all the groceries and stuff. I learned early on, if you're low on something, you better tell her because she's going to put it on the list. Those are the things, those are her strengths. Or when we have...my family's back in Iowa...and so when we have nieces, nephews need birthday presents, need this to the post office and stuff, that's her wheelhouse. I don't worry about that stuff. But by the same token, there's a lot of other things that I do. So it's like, I always say for as much as I am her caregiver, she's mine as well. It's just where it fits. I think it's very much a 50/50 kind of split.

Dr. Correa:
And within co-caregiving partnerships and relationships, sometimes it's described as inter-abled relationships. For our listeners, how would you two define that term as an inter-abled couple or an inter-abled relationship?

Jennifer Digmann:
We are inter-abled. It's very interesting. What I can't do, Dan can pick up the slack for me. Likewise, what he can't do, I try and pick up the slack for him. It's like he said, we play to each other's strengths. It's very important we don't keep score. Dan will never say, "Oh, Jennifer, I cooked dinner for you last night. It's your turn tonight." He knows the reality, there are things I can't do, and likewise. So we don't keep score, and I think that really helps in the relationship with being cognizant of both of our abilities and what we can do, and what the disease will allow us to do.

Dr. Correa:
I think that's a beautiful point and something that strikes me, that some people might hear something like a co-caregiving or an inter-abled relationship as somehow being different. But really what you're telling me is that this is actually tips and beautiful examples of a good relationship. The both of you have worked with so many other family members and individuals living with MS. You've grown a lot in the community. I wonder, each of you, what do you wish someone said to you after your MS diagnosis? Or when you were sitting there in the room with the neurologist or you were sitting at home with a family member, if you could go back, put yourself in that setting and tell that person, Jennifer and Dan, at that time, what do you wish someone would have said? How would you support that person?

Jennifer Digmann:
That it's going to be all right. It's going to be bumpy. It's going to be hard. That as trite as it may sound, you can do this.

Dan Digmann:
I just wish somebody would have just said, this is what you have. Just give me the green light to say, okay, now go and take control of it as best as you can, and that includes opening yourself up to other people.

Dr. Correa:
We appreciate so much each of you opening up to us, allowing us in, sharing with us both your stories, your love together and the time and the strength you've developed together, and for everything you've done with the MS community.

Dan Digmann:
Thank you.

Jennifer Digmann:
Oh, thank you.

Dan Digmann:
Thanks for having us.

Jennifer Digmann:
Thank you. This has been really, really nice. And just the community, I mean, just don't forget, there's nearly a million people living with multiple sclerosis. You're not alone. You can find other people out there.

Dr. Correa:
Yeah. I think for everyone living with any neurologic condition and especially a chronic progressive condition, just for them to remember, they're not alone. There's a large community out there. We hope resources through the National MS Society, the AAN and Brain & Life can help them find those communities and that support structure. But they're there, so please reach out.

Dr. Nath:
Today's episode highlights people living with MS in various different ways. Lisa Cohen shared with us how her life in her 20s was transformed after her diagnosis with MS, and now that she works with other women with MS to help them live their best lives, even in the face of disability.

Dr. Correa:
I really appreciated how she and the Digmanns have used their experiences to help advocate for a better understanding and living within the MS community. The Digmanns serve as a wonderful model for all of our relationships, of a couple caring and loving for each other. We all need to remember, regardless of our current health, if we have the privilege of aging, we will all at some point develop a condition or disability where we need our own caregiver support.

Dr. Nath:
Absolutely, every one of us. Both Lisa and the Digmanns shared how their diagnoses don't define them and how they've learned to feel empowered in sharing their stories. Hopefully, more of us can take this inspiration in supporting other groups living with neurologic conditions.

Dr. Correa:
Gracias and thank you for joining us. Please tune in again next week as we continue to talk with our community about living better with neurologic conditions. Thank you for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episode. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.

Dr. Nath:
Also for each episode, you can find out how to connect with us and our guests, along with great resources in the show notes. You can also reach out by email at blpodcast@brainandlife.org.

Dr. Correa:
Follow me and Audrey and the Brain & Life Magazine at your preferred social media channels.

Dr. Nath:
We are your hosts.

Dr. Correa:
Daniel Correa joining you from New York city and online at neurodrcorrea.

Dr. Nath:
And Audrey Nath, beaming in from Texas and on Twitter at AudreyNathMDPhD.

Dr. Correa:
Thank you to our community members that trust us with their health and everyone living with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Voices from the Multiple Sclerosis Community

Additional Resources

Follow us!

Episode Transcript