June Halper, MSN, MSCN

Richard, we’ve reached the end of our time together. I was wondering if there are any closing words that you’d like to share.

First, thank you for this opportunity. I wanted to return to the topic of support. Initially, I didn't accept a lot of support. I thought I could get it done. I thought, “We’ll get through this.” Then over time, you start realizing there are lovely people out there willing to help you. Accept the support. Take the support. If somebody is willing to drive you to an appointment, accept their help. As Dr Picone said, driving is a problem, especially early in the morning if you experience fatigue. Accept the support. It makes life a lot easier if you’re just willing. If people are honestly asking, “How can I help you?” tell them. It makes so much of a difference. If they ask, “Can I shovel your driveway?” That would be a huge help to me. Thank you. Anything like that. If we start accepting help, it makes our lives that much easier.

Absolutely. Dr Picone, I know you’ve been working in MS [multiple sclerosis] for many years and have done a fantastic job. Congratulations, again, on your new certification. Do you want to say something before we conclude?

What Richard said is key: accepting the help. I tell patients that they know their bodies better than anybody. They know when something isn’t right. Even with the initial diagnosis of MS, if you feel that something is wrong and you haven’t gotten the right help, seek out a doctor. Go to an MS center. There are therapies out there. We’re very fortunate. It’s a different time for MS care in 2021 than it was in the early 1990s. It’s tremendously different. There’s so much. I tell patients that if 1 medication may not work for you, there’s always a different option that we can try. We’re partners in this. Along with the MS therapies, you also have to work with me on taking care of yourself. As Richard said, reach out for help and be able to accept it if you need it.

 I really enjoyed talking to both of you today. 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. Dr Picone and Richard, thank you so much for this time together. I learned a lot, and I hope people out there are learning a lot as well. Be well, and be safe.

Videos

Final thoughts from participants on accepting help from others and listening to your body when you feel something is not right with multiple sclerosis.

Final Thoughts: Advice for Patients With MS

Dr Picone, it sounds as though we have a very intelligent, literate, productive, and exciting person in this conversation, but I know there have been specific challenges that you’ve faced on the treatment journey of some patients over the years. What situations have you found the most difficult? What resources have you utilized besides Frederick Foley and a psychological team?

One of the biggest challenges has been for patients who don’t have supportive family members or friends that they can rely on. That has been so difficult. Patients who have progressive disease have been the most challenging because, No. 1, prior to Ocrevus, there were no FDA-approved treatments at all for primary progressive disease. We still have not been able to reverse the disability that patients have. Patients who are isolated or don’t have good caregiver support are the patients who are most at risk for problems to develop. Patients who are unable to take care of themselves and are struggling to get support at home have been the most challenging throughout the years. Through some of the organizations, like the Multiple Sclerosis Association of America and the National MS [Multiple Sclerosis] Society, they’ve been able to get some resources. We try to reach out to social work to see what other community resources might be available. Transportation is a big challenge for so many patients because if you can’t drive because of your MS, particularly in a state like New Jersey where you really depend on your car, and if you don’t have transportation or an accessible transport, then that’s a challenge if you’re in a wheelchair or you use a walker. Uber has been very helpful for many patients because it has given them a transportation option if they don’t have family support. Over the last few years, they have been able to get Ubers. That has been helpful.

Yes, some Ubers are accessible. One of the nice things that we’ve been able to get through a donor here at the center is a transportation van, which has helped people who otherwise wouldn’t have been able to get to their MRIs or their blood work done, along with other necessary tests.

Because MS is a lifetime disease, and the community neurologist doesn’t have the resources you do at the MS center, what advice would you give them in terms of treating their patients with MS?

As we’ve been talking about today, you can see how many aspects and facets are involved in MS care with the different treatments, the education that’s involved, the nursing support, and the rehabilitation support that you need for patients to live their best life. If a patient has MS, they’re best served in this day and age at an MS center because it’s so challenging. It’s challenging for us here and for community neurologists who have limited time to spend with a patient, who’s trying to deal with not just MS but patients who have epilepsy, headaches, stroke, etc. You cannot give a patient with MS the support they need to be able to maintain their best life.

 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.

Mary Ann Picone, MD, suggests that 1 of the biggest challenges is patients without strong support networks.

Challenges for Patients With MS

We have covered the bases, but now I’m going to ask you some personal questions, Richard. I know you’ve been through a lot, and you’ve done amazingly well. Have you had any support from friends who know you casually or from family members besides your wife and son? Has anybody been particularly helpful to you over these past years in dealing with MS [multiple sclerosis]?

I’m really fortunate that I have some neighbors who are absolutely amazing. They just seem to get it. They know I do my own cooking. I’ll get a phone call and they’ll say, “There’s a lasagna for you.” There’s also a man that bakes his own bread too, and he’ll say, “Rich, I have two loaves of bread for you.” We are so lucky. I’m very fortunate to have a brother who helps me by taking care of my elderly mom. He knows my situation. There’s even support there. My brother-in-law says, “I’m here to help you if you need housework,” because he can help me fix things. I’m very lucky to have a ton of support from family members who may not be right down the road, but if I need them, I know they’re there. But there are friends in the community who have been amazing for me.

You must be pretty nice to know and collaborate with as well. What advice would you give to other people with MS with the progressive form of your disease? There are some people who are nice throughout their lives, and MS didn’t make them any nicer. There are also some people who aren’t so nice, and MS can certainly make them a little more difficult to work with.

Because it’s progressive, it doesn’t stop. It’s just a slow decline, and you have to adapt. You have to work with it. In terms of support and caregivers, I was talking to my wife about this earlier. As a patient, I need to recognize that my caregivers, my wife and son, are under a ton of stress because of what’s happening with me, yet they’re still trying to go to work and do all these other things. As a patient, I sometimes have to remind myself that this can’t all be about me. I have to somehow give back a little support. I try to cook the food my wife likes. They’re under a ton of stress too.

The 1 thing I would say to a patient is it’s a slow decline. It’s tough. Yes, there’s suffering, but there’s a beautiful world out there. We have done things because of my MS that I never thought I would. I went to a sky park in Pennsylvania at night last year with my son and wife. I never previously went to see the stars at night in a certified star park. We found it because it was accessible with a wheelchair. The only reason we did it is because we looked up locations with wheelchair accessibility. We’re doing things that, if you think outside the box, are really amazing. I would say to a patient: Think outside the box, and be a little more delicate with your caregiver, because they’re under a lot of stress too. This isn’t easy for them, so let’s try to take the ride together. We can both make this as nice as we can.

The importance of utilizing support from family and friends when managing multiple sclerosis.

Support Networks for Patients with MS

 Here in New Jersey, cannabis is now legal. That has been a topic for as long as I’ve worked in MS [multiple sclerosis]. Dr Picone, have you had any challenges or discussion with patients about the use of cannabis for psychological as well as physical problems?

 Yes. Richard can tell you his experience with cannabis, but it has been helpful for many patients. It’s funny, June, because I’ve never used cannabis at all in my entire life. Counseling patients about the benefits that cannabis could potentially provide, particularly for pain, spasms, spasticity, anxiety, and helping with sleep in some situations, has been very helpful. Cannabis is available in New Jersey. It recently passed and is now legal, but there are a lot of medical dispensaries. We often work with pain specialists who are on the registry for medicinal marijuana to help with these situations, particularly for pain and spasticity. There’s more and more research in the MS field for the benefits of cannabis in these areas. The downside is that it could have a negative effect cognitively, particularly if people overuse it. There has to be a balance. It has been very helpful for many patients. It has actually enabled some patients to come off other narcotic medications that weren’t really helping them. They’ve noticed more of an improvement with the cannabis.

Richard, you mentioned earlier about stretching. It sounds as though you’ve had some muscle tightness or spasticity. Have you used cannabis at all for that symptom?

Yes, I have tons of spasticity and especially tightness. I’ve been using medicinal marijuana for nearly 7 years. Right after the program came out, Dr Picone and I had a lengthy conversation about it. Here’s the wonderful thing about Dr Picone: She’s willing to think of alternatives. Medicinal marijuana was something she would consider. It’s been a game changer. I have a movement disorder that’s associated with the MS where my legs will fire off and flail, usually at night. I get 3 benefits from using it. I have a tough time sleeping because of the neurological symptoms. It’s tough to break through and get some sleep. It’s a great sleep aid. It really flips the switch off for neurological symptoms and your pain. It’s really something. It also helps with my movement disorder, especially at night. If I wake up in the middle of the night and my legs are kicking, if I just use a little medicinal marijuana, my legs will relax, and I’ll get back to sleep.

She does. It’s been a huge game changer for her because she’s the one who’s working. She needs a good night’s sleep. For years, she didn’t get a good night’s sleep. When I started using medicinal marijuana, she was able to get a good night’s sleep, so it has benefited her as well as me. The medicinal marijuana has been a game changer because I don’t need a sleeping pill. That will take care of it. We also reduced the dose on the seizure medications for the leg movement, so that’s big. And I don’t take any pain medications.

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

Experience with cannabis use for treatment of pain, spasms, and anxiety due to multiple sclerosis is shared by Dr Picone and her patient Richard.

Cannabis Use for Treatment of MS Symptoms

 One of the more prominent problems, which Richard doesn’t seem to be experiencing, unless he hasn’t told us, is the cognitive issue. Some patients have problems with things like short-term memory or managing their lives. How do you handle that at the Holy Name Medical Center, especially with COVID-19 and the isolation people are experiencing?

 It’s been very difficult. And the depression and anxiety have made cognitive problems worse. We are fortunate. We try to screen patients using a test called the SDMT, the Symbol Digit Modalities Test, when they come in for their visit. That gives us a bit of an idea about information processing, or how quickly patients can learn new information. If we detect a change on that or if a patient says they’re having more difficulties trying to do things, especially with Zoom meetings and having to do things at home, we are fortunate that we have a neuropsychologist here. It is not uncommon for MS [multiple sclerosis] centers to have that resource. He works on trying to see where patients are having difficulties by doing some memory tests to see where they might be having cognitive problems. He then tries to work on strategies to help compensate for problems that they might be having. In regard to fatigue, some patients have actually found that working from home has been a blessing because they don’t have the stress of the commute in the morning or the afternoon, which is very tiring. They are also able to better pace themselves at home as they’re working. They can control the temperature in the home too, which they weren’t able to do in the workplace all the time. So being able to work from home has been a silver lining for many patients.

It’s going to be a challenge, as Richard and I talked about earlier regarding telehealth. Some people are probably going to get quite comfortable working from home. It will be a big challenge for them to shift gears and get up and get out early.

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

Strategies for diagnosing and treating cognitive issues of multiple sclerosis during COVID-19. 

Management of Cognitive Issues of MS During COVID-19 

One thing we spoke about earlier was lifestyle issues. A lot of information is starting to emerge about things like complementary and natural therapies. Certainly, we’ve always talked about proper nutrition. We always examined how people were eating. Richard, are there any other strategies, other than what we spoke about earlier, in terms of your diet? Are you eliminating certain things, adding certain things, or taking supplements?

Yes. When I was diagnosed with MS [multiple sclerosis], we had to look at the whole picture. I don’t want to let all the other issues, like blood pressure, weight, or the other issues of my health, become secondary. They all had to become important to manage the MS. I do all the cooking in my house, so we’ve really changed the way we cook. I cook with virtually no processed foods anymore. I make everything from scratch, and it takes more time.

Exactly. When are we coming over for dinner?

Anytime. But I do. I make a lot of my breads from scratch. If we’re making muffins, the muffins are from scratch. I try not to use anything processed. It has helped me lose weight. It has helped me keep my blood pressure and cholesterol in check. We have changed our entire diet in terms of just eating natural, healthy foods that are not processed.

We eat virtually everything now. We eat very little beef, but we do eat chicken. We’ll eat anything, but in moderation. And I probably prepared it, so I know what’s in it.

 I experience terrible MS fatigue. That with a couple of the other issues, like mobility and lack of sleep, are some of the big ones. It seems as though I have to manage my day with fatigue. I get a certain period of time, let’s say from 11 AM to 6 PM, where I can get most of my work done, whether it’s cooking or me getting outside for myself. I have to do it within a certain time, because mornings are very difficult. It’s almost as if there’s a fog of war. And I’ll tell you what fatigue feels like, because people think it’s like, “Are you tired?” To me, it feels like I ran a marathon yesterday, and now I have to get up and I have to walk in quicksand. I have to do that every day. That’s just how it is. So the fatigue is just a crushing experience. I have to manage and moderate all my activities to get my workload done that I want to get done. So I plan. I plan and I plan and I plan.

 Dr Picone, he should be 1 of the teachers at the MS center.

 I wish everybody were like Richard. No. 1, he listens to what I tell him to do most of the time. I shouldn’t say “tell you what to do.” He’s very proactive about taking care of his health, and it’s not easy to be. It’s not easy for me—and probably for you, June— to prepare and cook everything from scratch as Richard has been doing. It takes time, but it’s not impossible. People can do it. There are so many ways that patients can work on improving their nutritional status and manage it, because it makes such a big difference. We are learning more and more about the importance of a healthy diet, its effect on the gut microbiome, and how it impacts MS disease activity. Being able to do these things, like exercise and activity, on a daily basis has a big effect. I try to encourage patients. No matter what your ability is, try to do a little bit of something each day.

Maintaining a healthy diet and exercise when combating multiple sclerosis. 

Maintaining a Healthy Diet and Exercise for Patients With MS

 Richard, I hate to be nosy, but are you on any therapy? If so, what therapy are you on?

I am. I’m on Ocrevus, and that’s an infusion we get twice a year. I go to the infusion center for the Ocrevus.

 Do you have any adverse effects or anxiety related to the therapy, such as the day before a treatment?

 That’s a great question. For me, it’s really not about the Ocrevus. It was the Solu-Medrol that you get before the Ocrevus. I just had a problem with the Solu-Medrol prior to the Ocrevus infusion. Dr Picone has worked with me to where I’ve eliminated the premedication of the steroid for the Ocrevus. That was my only concern. Other than maybe being a little tired for a day or 2, it doesn’t have a great effect on me in terms of any issues.

 Do you find the experience in an infusion center semi-rewarding? In other words, you have a bunch of nurses around. I’ve been to that center, and it is a very comfortable setting. Do you get to meet other patients while you’re getting your infusion and get to see some of the staff?

 I don’t usually interact with the other patients, especially this year. They keep us very sequestered. But the staff are such amazing people. You get to know Matthew, the nurse. All these people are just amazing. You do get to know them a little on a personal level. My wife comes with me for the infusion, and we almost make a day of it. We pack a lunch. We try to make it as positive as it can be. If I have to be hooked up to an IV [intravenous] for 4 or 5 hours, we’ll try to make it as best as we can.

 When I worked at the center, I always thought that the infusion also gave the nurses a chance to educate patients, because normally you’re in and out. I know Dr Picone always likes to stop by and visit. She would come by, say hello, and ask if there were any questions. But once you go home, are you OK? Do you get any adverse effects from the Ocrevus?

 Usually just a day or 2 of rest; that’s about it. I don’t really have any major adverse effects from it.

 And you have still been going in, even with the pandemic?

 I go in for the infusions. I also had an MRI at a hospital during the pandemic with no issues. The hospital, Holy Name Medical Center, has been very safe. The nurse meets you at the door and takes your temperature before you go in for an infusion, so you feel very safe and secure there. It has been no problem having infusions at the hospital.

 Holy Name was, as D. Picone said earlier, the center of the whole pandemic at the beginning, in Teaneck, New Jersey. I think they’re nearing 50,000 vaccinations.

I want to thank our audience for watching this 

®. If you enjoyed this program, please subscribe to our e-newsletter to receive information about other upcoming programs.

Richard shares his experience receiving his infusion therapy for treatment of multiple sclerosis.

Patient’s Experience With Infusion Treatment for MS

 What does the conversation with the patients sound like? Do you talk about drugs in terms of some of the newer therapies, including 1 that’s probably still under investigation: Mayzent, Ocrevus, ibudilast? I think I pronounced that right.

 It definitely is an interesting time. We are very fortunate that there are so many treatment options. It certainly is a much longer conversation nowadays than it was in the early 1990s, when there were no therapies until Betaseron was approved in 1993. Then people were arguing about the interferon therapies. Here’s what I try to do. It can be challenging. I feel that patients are coming to me at an MS [multiple sclerosis] center in particular because they really want to know what my recommendation is for them. It’s overwhelming for patients to be given an array of choices and then told, “You choose which medication to take.” I try to give a bit of an overview of the various treatments, starting with the treatments that have been around the longest: the interferon therapies and glatiramer acetate. These therapies have the longest track record in terms of safety, but efficacy can be a little lower compared with our newer agents.

Then I look at the second bucket of oral medications, of which Mayzent, or siponimod, is 1. Then I talk about the S1P1 receptor modulators as a class. I say that they are very effective therapies and also approved for the types of MS we talked about: relapsing and active secondary progressive MS. I mention that they’re higher in efficacy. They work by preventing the egress of lymphocytes from lymph nodes so that there are fewer inflammatory lymphocytes in the peripheral vasculature to enter the central nervous system [CNS] and cause the immune-mediated attack on myelin in the CNS. But there is a little more risk associated as we increase the higher efficacy. Then I talk about other oral medications that are available: Tecfidera, Aubagio, and now Mavenclad. As a second bucket, I look at Mavenclad, or cladribine, as a little higher in efficacy.

The third bucket contains the higher-efficacy therapies: the IV [intravenous] therapies, Ocrevus, Tysabri, and Lemtrada. Depending on a patient’s level of disease activity, there are many factors that go into the discussion: the age of the patient, the type of MS they have, how active their disease is, if they are planning to get pregnant in the near future, other medical comorbidities that the patient may have that could interact with a certain disease-modifying therapy, and lifestyle issues. Is someone going to be able to remember to take a pill every day, or would it be easier for them to come into the center to have an infusion done? We can also better monitor how they’re doing from visit to visit. It’s a long discussion, but it really has to be an understanding for the patient to know what’s going on, the importance of being on a disease-modifying therapy to slow down the disease process, risks of each therapy, and efficacy.

 I want to thank our audience for watching this 

An expert neurologist discusses treatment options for progressive multiple sclerosis.

Overview of Treatment Options for Progressive 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.

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.

Richard describes the journey of his diagnosis with multiple sclerosis.

Patient’s Diagnosis of MS

 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.”

A patient, Richard, discusses his positive experience with multiple sclerosis virtual visits during COVID-19.