Multiple Sclerosis Uncovered

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COURTNEY WILLIAMS, HOST: From KVMR, and in partnership with FREED, this is Disability Rap.

KELLEY HARTMAN: I think for a couple years after I got that diagnosis, I just tried to ignore it and pretend it wasn't there. I didn't really adapt much in the beginning, and the result of that is, again, that stress and fatigue and the toll it takes on you.

WILLIAMS: Today, a conversation in honor of Multiple Sclerosis Awareness Month and the life impacts of this long-term neurological condition.

MARY PANCOAST: The question was, what do I do with myself now? I still want to be a contributing member somewhere. But then I realized that I needed to think about myself. For me, it was, what else am I interested in?

WILLIAMS: That's all coming up on Disability Rap. Stay tuned.

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WILLIAMS: Welcome to Disability Rap. I'm Courtney Williams. March is Multiple Sclerosis Awareness Month. Multiple sclerosis, or MS, is a long-term neurological disease. Symptoms of MS may include chronic fatigue, trouble seeing, numbness in different parts of the body, difficulty walking or moving around, and brain fog and depression. MS manifests itself differently in each person who has the condition, and the symptoms vary widely, so not all people who have MS experience all of the symptoms.

MS is caused by a breakdown of the protective covering of the nerves in the brain and spinal cord. This breakdown and the resulting scar tissue make it harder for messages from the brain to travel to other parts of the body. There is no cure for MS, but treatments can help reduce symptoms and slow the progression of the condition.

We're joined today by two guests who have multiple sclerosis. Kelley Hartman is a retired occupational therapist and administrator, joining us from outside of Denver, Colorado. From Steuben, Maine, Mary Pancoast is with us. Mary is an artist and retired Montessori teacher. Disability Rap's co-hosts, Carl Sigmond and Alexa Guerrero, spoke to Kelley and Mary last week.

CARL SIGMOND, HOST: Well, Kelley and Mary, welcome to Disability Rap. It's great to have both of you with us. Kelley, we want to begin with you. How did you find out you had MS, and what was the diagnosis process like for you?

HARTMAN: Again, thank you for having me on the show. I'm really excited about sharing my journey with MS. I was familiar with MS because my mom was actually diagnosed when she was in her late 50s. When I started having some of the same symptoms that she did, with numbness, tingling in my lower extremities, the fatigue, and some of the brain fog; in 2016, I went ahead and scheduled an appointment with a neurologist.

The diagnosis process was a little confusing because at first it was like, "No, you don't have MS," followed by, "Yes, you do have MS." Going through the MRI process and then also the spinal taps, which in the end showed that, yes, I did have the diagnosis of MS. I would just say about the process, sometimes it can be lengthy and a little bit confusing for people who are trying to complete that process and understand the diagnosis of MS.

ALEXA GUERRERO, HOST: Mary, I would like to ask you the same question. What was your diagnosis journey like?

PANCOAST: I was in the middle of moving across New York State, and for our children's education, we were moving to a Quaker boarding school. I was driving our car, and all of a sudden, my right eye, like a shade went down over my eye, and I didn't have any idea what was going on. I went to a new- obviously, new doctors, and the doctor came in and said, "Well, how have you been since the last time I've seen you?" I said, "We haven't ever met," and I said, "I don't know what's going on." He said, "Well, you have optic neuritis, and you have MS."

That was very shocking because I didn't have MS in our family. I obviously knew about MS, but I didn't know how it presented, and that is one of the ways it could present. They put me on steroids for three days, and I had to go into a center and get IV steroids. Then I guess that took a year before they said, "Well, really, we wait for the second episode. This is your first episode, so the second episode, and then we'll consider medication." Just about that time, they started to change that protocol, and they said, "You can go on one of three drugs," and I chose to go on a weekly injection called Avonex.

That was the way I presented with it, but I certainly did not know-- it came out of the blue. I suspect it came from stress and just moving to a different place, and also not knowing how to proceed with it and having all new health people, because even my primary care had to be new. It was a process for me.

SIGMOND: Thank you, Mary. Kelley, can you tell us more about how your MS affects you? Because, like we said at the top, MS impacts each person differently.

HARTMAN: Yes, and I think that's one of the really frustrating things about the diagnosis of MS, because it does-- the symptoms that people have or display are different. For me, it's not as much on the physical side. While I do have a little bit of leg drop and some numbness and tingling in my lower extremities, it's more cognitive-based for me. After I left the field of occupational therapy, I worked in director level in higher education, state, and local government. One of those roles included being a CFO of the Division of State of Colorado, which was actually vocational rehabilitation, just to add a little plug for that.

Being able to look at numbers and remember numbers, remember sequences; really complex things are difficult, and I basically just have to review them over and over and over, double and triple-check myself to make sure the information I'm entering or reviewing or adding is correct. Then the fatigue for me is a huge issue as well. When you're working in a high-stress environment, that stress brings on fatigue anyway. Then when you put that together with MS, it is a little bit more challenging.

Those are the two issues that I have faced. Heat is a third. Living in a hot climate or trying to do intense exercise can bring on some symptoms as well. That's been challenging. Then I would just say the last part is dealing with insurance and trying to get medications covered and paid for because the medications for MS are extremely expensive, and insurance really will look for any avenue not to pay for that. That also adds to the stress and frustration of having the disease of MS.

GUERRERO: Okay. My next question is for you, Kelley. After your diagnosis, how did you adapt your lifestyle, or did you?

HARTMAN: Alexa, that's a great question because I think for a couple years after I got that diagnosis, I just tried to ignore it and pretend it wasn't there. I didn't really adapt much in the beginning, and the result of that is, again, that stress and fatigue and the toll it takes on you. Four years ago, my work environment, it was just so stressful because, like I said before, the comprehension and the cognitive functions are so challenged that I had to double, triple-check work, and that slows me down.

Again, I don't have a lot of physical disability. When people look at me, they don't see someone who has MS, and so expectations sometimes are high. Even after you share the fact that you have MS, a lot of workplaces are not really willing to put anything in place to help you with that disability and to help cope.

Four years ago, I decided, I made the big jump, and I said, "You know what? This is too hard on me. This is too hard on my health. I'm not taking care of myself. I'm not addressing the MS issues." I decided to retire. That was a very scary thing because then you go into the world of no insurance, and how am I going to deal with that, with MS and medications, but it really was a good thing for me because it allowed me the time to really look at that diagnosis and do the things I need to do, change my lifestyle to help and assist with that.

Part of that is letting people know that I do have MS, and cutting myself some slack when I do have to double, triple-check something. Using a sense of humor. I'm sure no one in this group has ever used that before, right? When I make mistakes with numbers or this and that, having a sense of humor about it because I can't change the MS process. I can't change that diagnosis, but just being a little bit more upfront about it and willing to do the things I need to do and take the steps I need to take to take care of myself has made a big difference.

I do think it's challenging for people with this diagnosis, in the school and work setting, especially when they might not demonstrate those physical symptoms or signs. Again, Alexa, I think that was a good question. If you have any follow-ups, or if I didn't answer you in-depth the way you wanted to, feel free to ask it in a different way.

SIGMOND: Thank you, Kelley. Mary, I want to ask you the same question. How does your MS affect you?

PANCOAST: Well, thank you, Carl. I have to say that I'm doing very well. I probably have had MS for 30 years, and it's the relapsing-remitting. That is the milder form, but I can see myself progressing towards it possibly changing. I have to say that I was teaching small children in Montessori from three to six years of age, and it was at a point where I really was having problems with the cognitive aspect of it. I sometimes would call children by a different name, and they would say, "Mrs. Pancoast, my name isn't Johnny." [chuckles] I would laugh because I would say, "Oh, I know that."

It was over time that I realized that it was hard to drive an hour to work and take care of my classroom and the children that I loved being with, so I did go back and get disability. It is a process, but it was one in which I needed to do. I remember when I first got the disability, or realized that I didn't have the responsibility of a job, it was like, I felt very inadequate, I guess. I felt very frustrated. Well, I have so much to offer children because I had been teaching for decades.

The question was, what do I do with myself now? I still want to be a contributing member somewhere. But then I realized that I needed to think about myself and, like Kelley mentioned, to take care of herself. For me, it was, what else am I interested in? What do I want to learn? What direction do I want to head in? It was the area of art, so I started taking some online classes and going to classes.

Overall, now that I'm retired, have been retired and been living not in Western New York State any longer, but also we've moved to the Coast of Maine, above Bar Harbor. We're really right out on a peninsula, so we get a nice, cool ocean breeze, and because I'm also affected by the heat, having MS, I live in a perfect place for that. I'm meeting lots of artists and taking lots of classes.

I've been able to deal with many of the symptoms and issues that I have with my MS by being not committed to a job. I do volunteer every Friday. I go to a- outside of Blue Hill and help with a place that helps animals have operations and expenses for that. That is a second-hand store. That's really fun. I enjoy working with the people. I love having some responsibility, but also my life is mostly my own time, so I can really work with my issues if I have them, whether it's numbing, or being extremely tired, or needing to sleep in, which I sleep in every morning and go on my own routine versus for a job.

I think, overall, I'm maintaining my life and doing the things I want to do. We even have been able to travel. A year ago, last April, we went to Europe and went on the Viking Rhine tour, from Amsterdam all the way to Basel, Switzerland. It's been really wonderful to still be able to travel. I'm very fortunate that I have the opportunity to do that.

Regarding the drug. My copay, when I first started on Avonex long ago, I think it was $750 a month, and I put it on Mastercard. After two months, the company, Biogen, called me and said, "You've got a really high copay." I said, "Yes, that's why I have a Mastercard." They said, "We have this program, and if you fulfill the requirements, you might get the next nine months for free." I filled out all the paperwork for it and was awarded that. Then my copay changed to $5 a month. I called them back, and I said, "I can afford the $5-a-month copay." I said, "Please give it to someone else who needs it," and they go, "We'll get back to you on that." They did, and they called back and said, "You've fulfilled the requirements for this. We're sending you the next nine months." I've been in that program ever since.

Now being on Medicare, because of my age, being over 65, it changes. That was a worry for me, but I'm still a program where I pay once a month for the maximum. I think it's a little under $200, and that covers all of my drugs, not just the Avonex. I've been very fortunate with that because it is a very expensive drug. It's helped me. It's served me very well.

I just want to say I've been on a few other drugs, so that I didn't want to get an injection every week, and I was off of every drug. This was just about four or five years ago. My MRI, I ended up having five brain lesions. I was going to a neurologist at Tufts down in Boston. I asked Dr. Babinski, I said, "How often do you see that?" She said, "I've only seen that once." I said, "Do you mean me?" She goes, "Yes." Obviously, my MS is still very active at 71, and I have to continue staying on a drug. I'm very fortunate that I'm still able to do that. I don't like the injection. I am sick for a day after my injection, so I miss one day, but it's worth it because it's keeping me going.

SIGMOND: Real quickly, we should explain a lesion is essentially a bruise to the myelin sheath. Then when that heals, it leaves scar tissue on the myelin sheath which is around the nerve. Alexa?

GUERRERO: Yes. Kelley, I know both of you decided to move for your health. What made you decide, and how did you know your body would benefit?

HARTMAN: We actually had a house in Puerto Rico for 10 years. Puerto Rico is extremely hot and humid. I noticed that when I spent time there, especially outside, my fatigue would get a lot worse. When that fatigue gets worse, I had problems sleeping, and then the cognitive issues would worsen as well. For me, that external temperature, the heat, the humidity, would significantly impact my MS symptoms.

Interestingly enough, while we live in Colorado, we do also live in Mississippi, which is also hot and humid, but we've made the conscious effort to be in Mississippi in the winter when Colorado is brutally cold, and in Colorado in the summer when Mississippi is brutally hot. For me, it was just really looking for those locations where the temperature was optimal, like Mary was talking about as far as living in Maine, because that's one thing that I could personally control.

It didn't make sense to me to be in a climate that would make my symptoms worse if I could control that and be somewhere else. That was a conscious decision, but again, even when you're going on vacations—Mary talked about her Viking Cruise—I really have to think about, where am I going to vacation and how hot is it? I love being at the ocean and at the beach. What toll is that going to take on my MS symptoms? That environmental piece is really important.

SIGMOND: I want to ask more about the cost of having MS. Mary, you talked about needing to put copays on a credit card, and then getting into a special program. Kelley, you talked about deciding whether or not to retire early and thinking about whether you would have health insurance. How do these questions impact your decisions, and what kinds of changes would you like to see in the medical care for MS?

HARTMAN: Well, this is Kelley, and I'll jump in on that one because that's a huge hurdle for people diagnosed with MS. When I was working full-time, I had a high-deductible insurance plan, which meant that I paid the first $10,000 out of pocket. At that point, I was doing an injection therapy, it was inpatient-- I'm sorry, not injection, but infusion program where you had to go to an inpatient infusion center once every six months, so twice a year.

I would basically go in in the beginning of January, and my out-of-pocket cost would meet that high-deductible limit, so $10,000 right off the top in January. You have a lot of time to think when you're in the infusion center. One time, my husband and I calculated the cost of that drug by milliliter compared to the cost of gold. That drug was actually more expensive than gold. It ends up being $250,000 for one infusion. It's a huge thing.

Making the decision to retire early, way before Medicare age, was challenging because top of mind is that diagnosis. Thank goodness, insurance has been changed where they can't consider a prior diagnosis. They have to cover you or insurance has to cover you, but through the Affordable Care Act, those plans don't always cover these expensive MS drugs. Which leads to the whole appeal process being denied, having to submit extra paperwork, having your neurologist verify this and that. It adds significant stress to an already stressful situation.

Something I would like to see change, for sure, is some advocation for bringing down these costs. Mary talked about the copay programs, and some of the companies do have that, but then there are also hurdles you have to clear for that as far as when you do go on Medicare, or if you have Medicaid, and whether or not you still are able to participate in those programs. It's always an unknown in the back of your mind. Every year when your plans change, it's whether or not you're going to have coverage for these drugs. I will say I went for about eight months after I retired not getting medication as I worked through the denial and appeals process.

Carl, thank you for asking that question. I'd love to hear Mary's response too, as far as what kinds of things she'd like to see about the- changes about the system.

PANCOAST: Thank you, Kelley. I really have seen a lot of different changes that basically are like the costs for treatment keep getting higher and higher and higher, and that is-- Because I've looked at different treatments. I think that that is very frustrating as a patient with MS because it's one of those where, with insurance, you're not really going to get better. You're going to be maybe maintained, but you're not going to ever get rid of this disease, and it's going to change, for many people, as we age. That's very frustrating.

I know that I've had many different neurologists over the 30 years or so that I've had it. I think one of the things that has been really helpful to me is to be going to a neurologist that has a team and works with other people, works with a psychotherapist, works with another type of neurologist. That's something that I worked with when I went to Buffalo, New York, because I lived outside of Western New York. Then I went, again, to Rochester, New York. It's Strong Hospital, where they also had a team. That is very helpful because you don't-- for me, I didn't have to fill out the paperwork to get the drugs. They have a nurse practitioner, nurse that does that for you, and they have your medical records.

I think for anyone who has MS and is looking for what kind of approach they should take, and they're trying to get some MS drug to help with their treatment, they should really look at how resourceful their neurologist and their team is, because they don't really-- We don't know how to do that. They know the ins and outs and what's being expected in terms of the insurance requirements, so I would recommend that.

As well as I think we need to have-- One thing that we haven't done, living now in Maine, is we used to go to more support groups. In Western New York, we had several that we went to, and it was invaluable. There were people there that had different experiences with doctors and their MS journey, and it was so helpful to hear everyone's story. You had this support group. We all have the same disease, but it's all affecting us in different ways.

That's something, now living in Maine, there really isn't-- When I get connected with, when I write or call the MS Society, they suggest, "You should start a support group," and I'm thinking, "I really don't have the energy to do that." I think that's one of the drawbacks when you move to a place where there are plenty of people that have MS. I've met them at a gardening place. [chuckles] We just start talking, and we don't look like we have MS, but all of a sudden, another person is saying, "Oh, well, this--" We get talking, and then you realize, well, there should be a support group locally for this.

I just would hope that more work could be done to bring people together and have some way to discuss our journeys, because we do learn from each other. I learned their doctor's experience, and maybe I should see this particular individual. It's very helpful, but I don't know if-- I think it's mostly what I'm willing to do, especially in a state like the state of Maine.

GUERRERO: Thank you, Kelley and Mary, for that. You both mentioned having thriving careers at the time of your diagnosis. What has the journey been like accepting life with a chronic condition and balancing taking care of yourself with continuing to be a contributing member of society, as Mary brought up before?

HARTMAN: I'll jump in first, and I'm glad that Mary brought that up because when she said when she retired, it's like, "What's the next chapter? I still have a lot to offer, and how do I do that?" I think I definitely felt the same way. I think I overcompensated for so many years, trying to make up for those deficits, that when I actually retired, it was like, "But I can still contribute."

That is a challenge, but I'm on the same page with Mary. It's like you look at your life, and you look at different ways and how you can contribute differently. I think that sometimes we all get wrapped up in who we are at work and the titles we had at work and lose that personal perspective. I do have to say, one of the most refreshing things about interacting with my friends who are all retired is the question about, "What do you do? What kind of work do you do?" Or, "Who do you work for?" Don't even come up anymore, and it's a beautiful thing.

It's just really letting yourself be at peace with the fact that you did your part work-wise. Mary contributed and helped all of those children along their learning journey. How many people did she impact through her professional career? We did our part in that respect, and so now it's just time to concentrate on something else, and to take care of ourselves, and to recognize MS is a part of who we are, but it doesn't define who we are.

GUERRERO: Mary, what are your thoughts on this?

PANCOAST: Thank you, and thank you, Kelley, for what you said because that really is it in a nutshell. We move forward, and we need to look ahead. I feel like I've put a lot of energy into-- We have two grandchildren that are south of us in Boston, and so we're six hours away, and so we meet halfway. We bring them back to our house, and we have them for a week, and try to bring them on boat rides and to beaches and looking for shells and going for tennis lessons for them.

It's just I'm focusing on my love of children and, I guess, expertise in children with my own grandchildren. That is really important to me. Also, I've often thought about maybe volunteering at a local school, but then it ties me down to being, "Am I going to feel well enough on that particular morning or that particular day?" I know that I'm not going to set myself up for that.

It's one of those things; I'm just doing what I can do. I'm not going to put more on myself. I've learned to, I guess, not overdo because I definitely was someone who did over and above what I should have done for my health, and I found that maybe I did set myself up for this. I don't know, but it's a question I live with and think, "Well, okay. Now I can figure out how to function, but function in a way that is healthy for me."

WILLIAMS: That was Carl and Alexa's conversation with Mary Pancoast and Kelley Hartman for our show honoring Multiple Sclerosis Awareness Month.

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And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and me, Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We're brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. For Carl Sigmond and Alexa Guerrero, I'm Courtney Williams with another edition of Disability Rap.