 Hello, and thank you for joining this Neurology Live® Cure Connections® program titled “Strategies for Managing Progressive Multiple Sclerosis During COVID-19.” This program is the second in the series designed for those affected by or interested in multiple sclerosis [MS]. We hope to provide you with different perspectives on a challenging disease. Our faculty represents a community of caring clinicians, patients, and families. I am your host, June Halper, a certified adult nurse practitioner who has specialized in MS since 1978. I’m the CEO of the Consortium of MS Centers in Hackensack, New Jersey, an organization that has set up a unique model of care. That model of care is represented by our panel. Joining us is Dr Mary Ann Picone, whom I used to work with at the MS Center at Holy Name Medical Center in Teaneck, New Jersey. Dr Picone is an MS specialist, and she recently became a certified MS doctor, and we’re very proud of her. Also joining us is Richard, who’s going to share the details of his journey with multiple sclerosis. Thank you for joining us. Let’s begin.

Dr Picone, this has been a very difficult year. Actually, we’re in 2021, but 2020 was a terrible year, and you’ve had a very busy practice. How did you incorporate telehealth into your practice?

 First, thank you and NeurologyLive® for inviting me to be part of this program. When June and I started working together many years ago, she was the person who, through her efforts in MS, introduced me to the comprehensive care model in MS. We continue to try to follow that.

It has been a tough year. COVID-19 really turned everybody’s lives upside down, including patients and our practice here. When it began, we had to pivot to see how we could best serve patients because many people were fearful of leaving their homes. There were shelter-in-place restrictions, so many people were fearful of leaving their homes and coming to doctor’s offices. But they needed to keep up with their medical care, so we did televisits. We did a lot of televisits initially so that patients could still interact with their physicians. We could monitor what they were doing, make sure they were taking their medications, and see if any changes had to be made. It helped them avoid coming to the office.

Patients who were getting infusions were more of a challenge because many people were fearful of coming in. Our hospital here at Holy Name was part of the epicenter of COVID-19, so many patients were very scared of being exposed, but they also had to be able to continue their infusions. As an MS community, we were not sure if it was safe for patients to continue with their Ocrevus infusions, Tysabri infusions, and other therapies. “Should we hold their infusion? Should we delay it a couple of months?” Those were questions we had. You had to weigh the benefit of perhaps holding their therapy so that there might be less risk of exposure to COVID-19, but you didn’t want their MS disease activity to get worse. It was a real challenge.

 Yes. The psychological impact of it seemed to be significant. How did you handle those, Dr Picone? I’m sure patients were very frightened and pretty much socially isolated. How did you handle that?

It was very frightening. There was a lot of anxiety and a lot more depression. We’re fortunate that we have a neuropsychologist who works with us who was also able to do telehealth visits with his PhD students. He was working with patients on their anxiety and depression issues, giving them an outlet to discuss what was going on in their lives.

How did you handle specialists referring patients to you with newly diagnosed MS?

 Those were the most challenging patients because the patients who were already established at the center and had follow-up visits were able to do telehealth. It was a little easier. It’s very difficult to do a televisit with someone we’ve never seen before, who’s newly diagnosed, who might be referred to us from another physician in the area or other family member. You really need to see someone who’s newly diagnosed in person, so those patients came in person. Emergency patients also came in person. Some patients delayed their visit. Some patients who were newly diagnosed and had appointments scheduled delayed their visits if they were reluctant to come in. It was also a challenge for clinical research.

We made it through, and we’re still doing a mix of televisits and in-person visits.

I want to thank our audience for watching this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to our e-newsletter to receive information about upcoming programs.

Treating MS During COVID-19

 Richard, you live pretty far away. Did you find that COVID-19 challenged you to get to the office, or did you use the virtual visits? How did you feel about them?

 I was able to use a virtual visit with Dr Picone. It was actually seamless. We worked ahead of schedule to make sure that the video was going to work and everything was spot on. Then you dial up and we were able to have a televisit without any issues. Dr Picone is astute enough to take the time, and we discussed a lot of issues. Other than the physical prodding, it worked really well. We had no problems with the telehealth visit.

 I’m hearing a lot of patients saying, “These were so good. I wish they would continue afterward.” How do you feel about that, Richard? Do you think this is going to last?

 As technology changes, the telehealth visits will probably become more commonplace. Maybe they’ll be able to check our blood pressure online and things will change. It’s the beginning of a new way of medicine. For me, living so far away, it’s a breeze to get online and have the doctor look at me, listen to me, and talk to me. A big part of what we’re doing during COVID-19 is just trying to assess our mental state and things like that. It’s definitely a way for the future.

 Yes, I agree with you. Do you monitor your symptoms? Do you keep track of it so that when you have televisits, you’re able to tell Dr Picone all the details?

I don’t monitor my health to the point where I take my blood pressure every day or things like that. About once a month, my wife will take my blood pressure to make sure it’s in a good range. I try to go on and have a day without all the medical issues. I want to explore life instead of being bogged down with those issues all the time.

Are you physically active? Do you exercise or participate in yoga or some of the exercises that are recommended?

For years, I swam. I lost the ability to go to my pool because the pool is closed. For me, swimming was the best. You’re buoyant in a pool, you get to relax, and you get to exercise and work out at your rate in a pool. I thought it was the best exercise. Because I’m home most of the time, I do a lot of stretching. I stretch every day. My No. 1 goal is probably to stretch, so even if I’m making dinner or talking to my son, I may be in a forward fold just to try to get a hamstring stretch.

That’s great. Do you normally go to physical therapy throughout the year?

I don’t. I stay extremely active around my home. I use an adult tricycle to get me out. If the weather is good, I’ll be on that every day. I try to stay active but to a point that it doesn’t fatigue me.

You’re a good role model. You’re the person we like to tout and say, “Keep moving.”

 I want to thank our audience for watching this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to our e-newsletter to receive information about upcoming programs.

Patient Appointments During COVID-19

We were talking about Richard’s disease and how he’s managing it. Dr Picone, 1 of the mysterious things about MS [multiple sclerosis] is that it’s not 1 disease. It seems to be a number of diseases, and nobody has been able to figure out what happens. Can you briefly describe the 4 types that you see at Holy Name Medical Center? We hate to put people in boxes, but I guess we do for treatment’s sake. Can you talk a little about CIS [clinically isolated syndrome], relapsing forms, and secondary progressive and primary progressive MS?

 Sure. Over the years, we’ve gotten better at diagnosing and treating patients earlier, which has helped make an impact on slowing disability progression, but it’s still a significant challenge. I joke with patients that clinically isolated syndrome is CIS and not NCIS, like the television show. It stands for that first clinical episode that’s suggestive of MS, along with diagnostic findings on MRI of the brain and often in the spinal cord. That’s excluding all other MS signals, so it’s very early on. It’s the first episode, years before a clinically definite diagnosis of MS would be made, because this is just 1 attack. There are other objective findings that help establish the diagnosis. We’re finding that so many of our MS therapies are approved for treatment at this stage, very early on in the disease process.

Relapsing forms can be the phenotype of MS where patients might have an attack—whether it’s optic neuritis with blurred vision, weakness in the arms or the legs, or difficulty walking—and then there’s improvement. It may not always be 100% improvement, but there’s a period of relative clinical stability that can follow, although we can still perhaps see activity on MRI of the brain or the spinal cord. It’s like this up and down where you have an attack, you may get better, and then you’re OK for a period of time until the next clinical relapse. Although you’re not really OK, because you could still have activity going on subclinically on your MRI. It’s like an up-and-down pattern.

The problem is that with any type of a relapsing form, if a patient continues to have relapse after relapse and there’s more and more activity that we see in the brain, that’s irreversible. Once you have lesions that develop in the brain, we unfortunately can’t get rid of them at this stage. We don’t want patients to continue to have relapses because we know that whenever there’s a clinical relapse, it’s usually associated with new lesion development within the brain. About 85% of patients initially will have some relapsing form. Secondary progressive MS refers to the type of MS that may start as heavy relapses with what appears to be a period of clinical stability in between. Usually, after 10 to 15 years of having the disease, you have this slow progression clinically and you don’t have improvement. It can occasionally be interspersed with some relapses. We call it active secondary progressive MS. There’s also nonactive secondary progressive MS, in which you continue to progress in walking or have other disability but without clear relapses. We still don’t have approved treatments for nonrelapsing secondary progressive MS. Primary progressive MS is about 10% of patients who, from the onset, have a slow, insidious progression of disability. It often affects walking more than any other function. Patients may often have a stiff walking ability, and it slowly progresses over time without clear relapses.

When we look at secondary progressive MS with and without activity, is there a sudden change when you could say, “It happened yesterday,” or is it gradual?

That’s a great comment, June, because 1 of the most frustrating aspects I find is that, unfortunately, there isn’t. A lot of times, we are missing that slow worsening of the disability that’s occurring. Patients sometimes may not remember to say things when they come in for their visits of what’s going on between visits, but walking could decline. Someone could be having falls at home that we’re missing, cognitive problems that are changing, or increasing fatigue. That could be a sign that their disease is worsening, but we don’t pick it up early enough.

Clinical Subtypes of MS

 Richard, when were you diagnosed? How long have you had MS [multiple sclerosis]?

 I was originally diagnosed with relapsing-remitting MS about 12 years ago. A year later at another neurology center, I was diagnosed with neuromyelitis optica [NMO].

My wife and I—especially my wife—said, “Let’s get a second opinion on that.” We ended up at the Mayo Clinic for 2 weeks in Rochester, Minnesota. I met with a neurologist there, Dr Claudia Lucchinetti, who said, “No, you don’t have neuromyelitis optica.”

She’s quite the big researcher in that area.

She developed the testing for NMO, so we thought we were going to the expert for NMO.

After 2 weeks of testing, she said, “You don’t have NMO. You have primary progressive multiple sclerosis.” That sent me on a journey. I saw Dr Patricia Coyle in Long Island, New York. She agreed that the diagnosis was primary progressive MS and then suggested that I see 1 or 2 other doctors. One of them was Dr Mary Ann Picone, whom I’ve been with ever since and I’m never leaving.

 I’m glad. Dr Coyle was actually on our first episode of this series. She’s wonderful.

She’s another brilliant woman. Just amazing.

The symptoms you had were mainly related to your walking, right?

About 20 years ago, I had a bout of iritis. The ophthalmologists never went further than that. About 13 years ago, when I was walking, I noticed I’d started walking sideways a little instead of straight. Then when I was cutting the lawn, I noticed my legs were getting tired, and I would sit down. I thought, “This doesn’t make any sense.” I went to my primary care physician, who did a quick neuro test and said, “You need to see a neurologist.” It started with iritis, then that went away and it’s been walking. The issues are mainly walking.

 That’s interesting. When I worked with Dr Picone we had a patient who had iritis. There’s not a lot in the literature, but it turned out she did. I’m sure you’ve been through a very interesting journey, but it seems that you’ve gone to some very important and very knowledgeable specialists, including Dr Picone. When we started in MS—we both started working together in the early 1990s—we really didn’t have anything. Then along came the interferons and Copaxone. Today we are blessed with about 20 medications with a whole bunch of other drugs in the pipeline.

Patient’s Diagnosis of MS

Strategies for Managing Progressive Multiple Sclerosis During COVID-19

A panel including an expert neurologist give their perspectives on overall management of progressive multiple sclerosis and the impact of COVID-19.