The Paid Leave Podcast

An athlete with Multiple Sclerosis keeps on moving.

• The Connecticut Paid Leave Authority • Season 2 • Episode 18

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Nearly 1 million people are living with Multiple Sclerosis (MS) in the United States. More women are diagnosed with the disease and colder climates can be a contributing factor. MS can be a very tricky disease to diagnose, but quick treatment can help to slow the progression of the disease. 
UConn Medical Center's neurologist Dr. Hamza Coban explains the different types of MS and why a positive mindset can be very helpful. Marisa Goldsmith is his patient, and she fights for her mobility every day. Marisa says MS doesn't define who she is, and being an athlete has helped her tremendously.

For more information on Multiple Sclerosis (MS) :Connecticut-Rhode Island | National Multiple Sclerosis Society (nationalmssociety.org)
For more information or to apply for benefits go to: CT Paid Leave Authority (PFMLA)| Home | Official Site

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Nancy Barrow:

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. This podcast is about Multiple Sclerosis, and recent findings from a National MS Society study estimate that nearly 1 million people in the United States are living with MS, and this is more than double the last reported number, and the first national research on Ms prevalence since 1975 the society also estimates that 2.3 million people live with MS globally, and about 15 out of 100 people who have MS have A relative with MS, most often, a brother or a sister. Multiple sclerosis is a chronic disease of your central nervous system, and I'm sure our guests will talk more about the specifics of all of it. Connecticut, paid leave gives you income replacement so you can take time away from work to take care of your own serious health issues or that of a loved one, and it must include incapacitation and treatment from a healthcare professional. Ms, of course, is considered a chronic condition. So under Connecticut Paid Leave any period of incapacity due to treatment for a chronic, serious health issue which requires periodic visits for treatment by a healthcare provider at least twice a year, recurs over an extended period of time, and may cause episodic, rather than a continuing period of incapacity, which of course, Marisa would fall under. And you can take the leave all at once, in a block or intermittently, or you can do reduced schedule from work. So there's a lot of flexibility with Connecticut paid leave. My guests are a team, a doctor and a patient. Joining me today is UConn, Psychiatrist and Neurologist, Dr Hamza Koban and his patient and my friend, Marisa Goldsmith, who started a movement called fight for mobility after she was finally diagnosed with MS, her story is something you definitely need to hear thank you both for being on this podcast!

Hamza Koban:

Thank you, Nancy, thanks for having me!

Marisa Goldsmith:

Excited to be here.

Nancy Barrow:

Yeah so happy to have you here! Doctor Let me just talk to you. Tell me about your education.

Hamza Koban:

I'm an adult neurologist by I also see pediatric patients with multiple sclerosis and other autoimmune conditions. MS is an autoimmune condition, like like you mentioned in your in your introduction, it's common attacks and relapses, and we commonly see in young adults and mostly women. But as you mentioned earlier, as well, we see to some extent in pediatric population, in children also, thankfully, it's not as common as adults, though most typical patients or most common commonly in in their teenage years. It's around the same time for the most autoimmune conditions to emerge, and most of them pediatric patients in their early teens. There are other conditions, of course, other autoimmune conditions, similar to multiple sclerosis can be seen much earlier, even in infancy or early childhood. MS is more like a teenage and early adult, adulthood disease.

Nancy Barrow:

So what are the different types of MS?

Hamza Koban:

Multiple Sclerosis is the most common form of MS is the relapsing remitting form of ms, as in the name it comes in attacks, and each attack can be very disabling. It can cause variety of symptoms, and most, most common ones would be inflammation of the eye and weakness, loss of sensation and balance problems, sometimes speaking problems, swallowing problems. These symptoms come slowly and can get worse over time, over over a couple days, and peaks over a couple days and last them up to several weeks to several months, and then remits, as in the name sometimes it can resolve. All those symptoms can resolve completely, but sometimes they don't resolve completely, then can can leave some residual deficit, residual disability, which can be chronic. The other form of MS is called progressive form of Ms. When we say progressive forms of ms, we mostly mean the Primary Progressive MS, what it means it starts as a progressive disease, as opposed to relapsing, limiting which comes in attacks, if even in the beginning, when patients start feeling that their symptoms they don't get better. On contrary, those symptoms get worse slowly over time, most common symptoms. For those patients would be again walking disability and weakness and balance problems and spasms and similar symptoms. Another form we can classify, or most of our patients will talk about, is the secondary progressive form of Ms. That's another challenging part of ms, which we see in patients who start with relapsing, limiting multiple sclerosis at their early ages. But over time, if especially if not treated optimally, those attacks can build up. And after some point, instead of having attacks, they start having progressive symptoms, which becomes more chronic and more disabling over time. Thankfully, we have better diagnostic tools that we can diagnose these patients much earlier, and we have better treatment opportunities, treatment options that we can treat them properly at earlier ages, and hopefully we can prevent those kind of disability over time. But it's true that some patients, even now, it's possible that over time, they become progressive form of ms, or secondary progressive or primary progressive, and then they may end up in a wheelchair and even can be bed bound.

Nancy Barrow:

So it's really important to get the diagnosis as early as possible. Can you have MS and never have any symptoms after a first flare up?

Hamza Koban:

Yes, absolutely. MS is a spectrum, and like you mentioned, it's very, very important to recognize early on at this point, both for us as providers and physicians, also for our patients to recognize the symptoms. One other challenge from both provider perspective as well as from patient perspective, majority of our patients are young adults during their most productive ages, and they don't expect any any health issues in general, and they tend to ignore their symptoms sometimes, or may they may. They may complain of some symptoms, but maybe providers may not recognize the significant symptoms that can lead to diagnosis of Multiple Sclerosis. I think that's that's the most, most important aspect diagnosing early, recognizing and diagnosed, making a right diagnosis, and having a plan for for treatment early on to prevent disability in the future.

Nancy Barrow:

Yeah it seems really tricky, because some of these symptoms may not present itself as something that is ms, like, maybe they would think it would be ALS.

Hamza Koban:

Absolutely. It's, it's, it can be very tricky. That's, that's why it's important to be cautious at the same time seeing a specialist or someone is experienced in in this kind of neurological disorders. It's, it's very common to mix those symptoms with other kind of disease disorders, and it can delay diagnosis and delay treatment as well.

Nancy Barrow:

Thank you so much, doctor for all that information. Marisa, I'm going to turn to you. Why don't you tell me your MS story.

Marisa Goldsmith:

So very similar to what he was saying, is I had optic neuritis. I would try to run and I had at one point been part of the Saucony team, and I was like, I'm in my practice. I went to 18 miles, and all of a sudden I crashed. And I always think I had a shy bladder, until later on, after being diagnosed with MS, I'm like, Oh, I have urinary retention, and I have an implant. So I go to UConn, which, ironically, at the time, they didn't have a comprehensive health care and they do, which is awesome, which is why I boomeranged back. Dr Alessi, Dr Hall, Dr Edgar. I remember meeting with them, and I said, Aren't you guys the best sports medicine like doctors? And they kind of smiled, and we're like, yeah, we're pretty good. And I'll never forget, they're like, right? This is the last test, and it was the MRI, and I had the MRI done. And I remember Dr Hall's, like, you have a lot of lesions. That ended up being August. I'll never forget the day. And with August 18, 2018 and I remember doing a box jump because I wanted to be fit. I thought, if I'm just stay fit and strong, whatever's going on, I'll beat it. Right? Go to the doctors, and they're like, that's why you fell off your box jump because of the lesions. And of course, having Dr Kovan here could better explain it, but the lesions going up my spine, being in my brain, they were causing that numbness. You know, that's why sometimes I'll be walking and people will say, Well, why do you need your AFOs? Like, well, because my foot falls asleep and I can't move it.

Nancy Barrow:

And so how long did it take you to get diagnosed?

Marisa Goldsmith:

So it took six years of making to get to the to UConn, and it took them about three or four months.

Nancy Barrow:

Your journey has taken you to meet Dr Koban. Tell me how this partnership happened.

Marisa Goldsmith:

It's not too far from. I live. I had been part of a different ms center, but I always wanted to go back to UConn. I loved what they did. They took my situation seriously, not that I'm saying other doctors didn't. So to be able to go back, it was wonderful. And it worked out that I was able to have Dr Koban.

Nancy Barrow:

And Dr Koban when you first met Marisa, what were your thoughts about her? Because she wasn't going to let this stop her from running.

Hamza Koban:

Absolutely. The first thing I recognize about Marisa, she she was very tough and very and strong woman, and also she knew a lot about ms already, and I didn't have to explain her a lot about about her disease and disease, course, but in the first patient, as I always do, I try to get to know her a little better, especially her own personal risk factors for MS, as well as disability For in the future, and try to identify them in the first visit, and try to address them one by one, and start working on them together. And we as as, as I, as we do with all of our patients. We reviewed everything, every possible detail in her history, even though she was diagnosed with MS in 2018 we found we found out her symptoms probably associated with MS started very early on, maybe in 2007 with optic neuritis, and then, and then we reviewed her disease course over the over the past couple of years, since the diagnosis and until now, and we came up with a plan moving forward in terms of one ms management, how to how to keep ms at bay, how to prevent relapses, and how to prevent disability and and progression. At the same time, we try to focus on her symptoms, because sometimes it can be very challenging with MS, even though we have great tools, great treatment options for Ms. Treating MS doesn't necessarily fix the symptoms, so we need to identify them separately, and we didn't. We need to combat them separately, and we try to identify those they could be fatigue, could be spasms, pain, urinary symptoms, urinary retention, urinary urgency, frequency, or whatever they may have. And we try to identify.

Nancy Barrow:

What is the treatment plan?

Hamza Koban:

For Ms. We, especially at UConn, we have a comprehensive approach. On one hand, hand we have MS, and which is the underlying and major driver of of the disability. On the other hand, we have symptoms associated with with MS which are related to Ms. We we focus on the MS treatment first, and treat them. Treat MS with immunotherapy and for the symptoms, depending on on the symptom, we rely a lot on our our our comprehensive team, especially if they if they were to have like Marisa, if they had a foot drop or or weakness in their legs, if they have spasticity, we try to identify them, and we work with physical medicine and rehabilitation providers as well as Physical therapists and occupational therapists. Also for urinary symptoms, we collaborate with with a urologist who is familiar with with multiple sclerosis. And for pain, we try to work with pain specialists, if possible, and try to target them specifically.

Nancy Barrow:

And what was your treatment Marisa? Like, what would you were you going to rehab? Is that one of the big ones for you?

Marisa Goldsmith:

Speech therapy was huge. I would stutter, and I didn't know what was going on. So I had to go through speech therapy. Initially, I had to go through physical therapy. And from time to time, which Dr goban knows, recently I've had to go back, you know, from falling, you fall, you get hurt. You have to go to therapy, you know. So you have to just communicate. And oftentimes I tell everyone, Multiple Sclerosis is multiple stuff. So today you'd be fine. Tomorrow you're not. You just got to be cognizant of what's going on.

Nancy Barrow:

Rightand what are your limitations? Do you feel like you have any because I know, because I know that you did the marathon. You know, not many people with MS are like, I'm gonna beat this, and I'm gonna go do a marathon and and there's Marisa doing a marathon.

Marisa Goldsmith:

The interesting part of MS is that there's fatigue. And everyone always says to me, How come you're not like in bed, and how come you're not in a wheelchair, and how come you're not then. This. And I'm like, well, because everybody's body's different, and everyone's will and desire is different, but I always say just because someone's in a wheelchair doesn't mean they want to be in one no more than I want to wear double AFOs, right? It's about being cognizant again of what's going on and being you have to accept what's going on too.

Nancy Barrow:

Do you think a big portion of this too is mental wellness? What is the mental aspect of it? And do you encourage patients to seek counseling?

Hamza Koban:

Absolutely, mental health is a major part of MS, MS and in general, and MS management as well. And it's been shown that mental health issues, especially depression and anxiety, common conditions, comes with MS, and we more commonly see in MS patients, and it's very important to address in the beginning, because over time, it can have other consequences and make overall ms trajectory on the on the worst way. So that's absolutely true, to identify and treat mental health issues in the beginning, but at the same time, it's MS is it is a challenging disorder. Just getting the diagnosis in the beginning can be very overwhelming, and sometimes I try to give my patients some some space, some time to contemplate and and learn more about ms before moving forward with the treatment, we don't want to rush anything until we have a common understanding together with our patients and we have a plan together to follow on again in in this age group, people don't expect to have this kind of disability and this kind of chronic condition that they will be dealing with for later life. It's very important to have an understanding of the disease. I always encourage my patients to do their own research and come back in the next visit and discuss with me together. Another problem with MS, unfortunately, can be misinformation, and sometimes our patients, unintentionally, can compare themselves to other people they're reading online or seeing in their environment, and comparing their disease to someone else's disease, and can be much overwhelming and can be discouraging, so we try to educate to empower them as well.

Nancy Barrow:

Do you go and seek therapy when you first got diagnosed?

Marisa Goldsmith:

I'm in it. Yeah, and I always tell people it's nothing to be ashamed about, because your brain is attached to your body, so if you're having issues with your body, you're more likely going to have issues emotionally. I have someone that actually specializes in behavioral therapy for people that have MS, you know, there's times where it probably make her crazy, because I'm like, Alright, I'm going to do a FaceTime zoom, and I'm walking, and then she'll see me like walking on the wall, and she's like, and this is why we need to sit down.

Nancy Barrow:

How important was that aspect for you with a chronic condition like MS?

Marisa Goldsmith:

To go into that form of therapy? It was huge, the way I can and I remember somebody has, MS, me your brain, because sometimes feel like this, like a wire that just and so you're fine and everything's great. And then and you have to figure out, what is it. And then I have to look back, am I getting enough sleep? I have to be aware of what my limitations are. And with MS, you have to accept it.

Nancy Barrow:

And that's probably a very hard part of your life changing because of the diagnosis.

Marisa Goldsmith:

There's a song by Sarah McLachlan that says she used to be mine, and I like played that on the way here, and I like cried, and I was like, right, don't have a moment. It's not time to have a moment. But it's, it's you go through that, and I you go through that. I used to be someone else, but I'm like, No, and embrace who I am today, because I have the opportunity to help other people. Maybe that's me deflecting, but it's also a positive.

Nancy Barrow:

Yeah, you have to make lemonade out of lemons, and

Hamza Koban:

There have been multiple studies over the years. you do that all the time. A question for you, Doctor, is colder climates more susceptible to Ms? Three women that I know who have MS all lived in the northern states, like in the It's been shown that that's in fact true. The farther away from northeast. the equator, the higher the incidence and prevalence of Ms. The exact reason behind it, there are several theories. We know. There are several risk factors associated with Ms. One of them is vitamin D deficiency, especially in adolescence years, we know if you don't get enough sunlight, the vitamin D deficiency is going to be higher. And in the northern states, especially in our area, in Connecticut and New England, we don't get enough enough sunlight, and vitamin D deficiency overall also very prevalent, and that can be one reason behind it. Another thing to think about those I'm recognizing the disease may be not not not in the United States only, but in in the world in general, since the medicine is more advanced in western Western countries and diagnosis. Of MS is probably more accurately made, but we now know in even in Africa, people are getting diagnosed with multiple sclerosis. But overall, it's still true. Maybe northern states, or as we go farther away from the Ecuador and getting less sunlight, may be associated with high risk and higher prevalence of multiple stars with MS, since it's affecting the myelin sheath around the nerves, it's basically an insulation around the nurse with MS, we lose that insulation, and during these circumstances like heat, even stress, some illnesses, during those times, our body is heating up from external sources or internal sources, and during that warmth period, the transmission on the nerves are further slowing down and causing all symptoms to come back. But it's important to understand that it's not a real relapse. There is no further damage to the nervous system, but just a temporary phenomenon that we try to educate our patients.

Nancy Barrow:

What about cognitive issues? Are there a lot of cognitive issues that come up with MS?

Hamza Koban:

Absolutely it can affect major part of the brain that can be involved in cognitive functions, but most commonly, we see slowing and cognitive speed since the multiple sclerosis affecting white matter portion of the brain there's slowing down, and most of our patients tend to feel or have cognitive slowing. But it's not the only only type of cognitive symptom they experience. Short term memory problems can be another one, and in advanced cases, even dementia is possibly can be seen.

Nancy Barrow:

With the lesions Marisa had talked about and that you're just talking about. Do you know what is the attack on the brain and the spinal cord? How does this disease do that?

Hamza Koban:

MS is an autoimmune condition. What we mean we have our immune system, which is designed to fight with infections, right? And also maybe keep keep everything in check, prevent cancers and those kind of things. But sometimes our immune system can overreact. This overreaction can be due to misrecognizing, maybe confusing a pathogen or a virus, and some viral or bacterial proteins can look similar to our own body, and our immune system can recognize them as enemy. This is the problem, Major, main concept in autoimmune conditions, there are many autoimmune conditions. If it's affecting the skin, it can cause psoriasis. If it's affecting the liver, it can cause autoimmune liver disease, or if it's affecting joints, rheumatoid arthritis, as in MS, when it's affecting the brain and the spinal cord, and recognizing myelin around the nurse as an enemy by our immune system leads to multiple sclerosis.

Nancy Barrow:

Being that Marissa was an athlete. Do you think that helped her be better equipped to fight MS.

Hamza Koban:

Absolutely, it's very important. Since she was an athlete, she had much more reserve, probably compared to others, and probably that's why she had better recovery. Initially. That's one aspect, the other aspect. After each attack, we try to do intensive physical therapy for all of our patients, and she was already doing that by herself, and gaining that function quicker and maybe better is very important with physical activity, staying active.

Nancy Barrow:

And Are you still feeling that you're strong and you're still fighting it that way, and being an athlete?

Marisa Goldsmith:

I am. I think at the end of the day, I have to do things. I have to keep moving. I even have it on my watch, and I don't have it on right now, but it says, Get up and I get up and I go for a walk. And, you know, being active outside the dogs is so important, because if I'm not, I'll lose it. You don't use it, you lose it.

Nancy Barrow:

And how important is it to have a support system and caregivers there for people who have MS?

Hamza Koban:

I think it's, it's very, very important, especially for for MS, especially in the beginning, when, when someone's getting diagnosed and and try, trying to adjust. They will need a lot of lot of support, both emotional and physical, sometimes, especially if they, if they had had a the attack that caused disability at that time, until they recover and and sometimes some, some of our patients can recover maybe quicker, maybe in a couple days, but some pay some, some, some of our patients can take a little longer to recover, even up to several months. And during those times, they will definitely need some some support from from family, friends or someone. who can support them.

Nancy Barrow:

This is The Paid Leave Podcast, so I just want to kind of bring it back to Connecticut Paid Leave. Do you think that your patients and the flexibility of Connecticut Paid Leave could really benefit MS patients or the caregivers of MS patients, so they can take time away from work and get income replacement and not stress so much, and and, maybe cause a flare up.

Hamza Koban:

Absolutely I think Connected Paid Leave is very helpful for our for our patients, we have been talking about different aspects of MS and possible symptoms associated with it. One of them, we talked about mental mental health, one of them, cognitive symptoms during those difficult times, when when they had an attack, a relapse, or when they're dealing with with a disability at some point, having a peace of mind not to lose their jobs and having a steady income during those periods on until they recover, I think it adds a lot to our patients overall health, as well as MS, MS recovery.

Nancy Barrow:

Yeah, I'm having it flexible so you can do it like all at a block if you really need a lot of time, or if you just need to take some time away from work for going to see you a doctor's visit. Or, you know, maybe you need to just do half days because you can't, you don't have the ability to do full days of work. You know, I think one of the great things that we have in the state is Connecticut Paid Leave so people can have those flexible, flexible times to be away from work and get income replacement.

Hamza Koban:

Our patients may require frequent visits, not just for doctor visits, but for for therapy, for other symptom management, as well as for for treatments, because we utilize a lot of infusion therapies that requires our patients to come in and wait several hours in the infusion center. And also, it's also very true that some of our patients will be dealing with cognitive symptoms or fatigue, and those symptoms can last much longer, and having more flexible work hours definitely would benefit them.

Nancy Barrow:

And Marisa, I know that you're, you're a fan of Connecticut Paid Leave. But we also talked about the fact that, like, 19% of people with disabilities don't have a full time job because they can't, and that's another thing that Connecticut Paid leave does. It's, you know, you don't have to be full time to get it. You just have to be part time, you know.

Marisa Goldsmith:

And that's very helpful, because you don't know. I mean, I know last year, for example, I had a huge flare up, and it meant a lot of appointments to try to get through it. And it was a pseudo flare. Having resources to keep the roof over your head is, is a good thing.

Nancy Barrow:

Marisa, I know that you've been fighting this for a long time. How are you doing now?

Marisa Goldsmith:

Feel good. I wake up though positive. I have to look back at people who paved the way. And, you know, we didn't have AFOs, then ankle foot orthotic, and we didn't have that, and now I have a different one that helps me, that's so I don't fall as as often.

Nancy Barrow:

Marisa, I just need to say congratulations, because you're being nominated for the Woman of the Year.

Marisa Goldsmith:

I know when I thought it was spam, when they called me just but I'm i They're like, No, you were, you were selected. And I said to one of my friends, I'm like, why she goes? Because you have, you have empathy, and, you know, and it's very important, but you know, and I, and I like it. I had somebody that said to me, and I like the fact that I was honored, but I like the fact that I can bring more awareness. That's what I that's what I appreciate about the award. The awards great, but I'm kind of like, that's what I do.

Nancy Barrow:

Dr. Kavan, thank you so much for coming in. Marisa Goldsmith, thanks for being such an inspiration to others. I appreciate you so much. And thanks for sharing your story. I appreciate it.

Marisa Goldsmith:

Thank you for having us.

Hamza Koban:

Thanks for having me. It was great. And I like I'd like to congratulate Marisa for the recognition she more than deserves it!

Nancy Barrow:

Yes, she sure does. For more information or to apply for benefits, you can go to ctpaidleave.org. This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.

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