Progressive forms of MS are characterized by a sustained build-up of symptoms with an insidious increase in disability. With Primary Progressive MS (PPMS) in particular, disability accumulates twice as fast as in those with Relapsing MS (RMS). This means that people with PPMS experience more problems with walking, more difficulty remaining in the workforce, and require more assistance with everyday activities.
Ben Thrower, MD and the medical director of the MS Institute at Shepherd Center, discusses maintaining a healthy lifestyle with progressive MS.
Selected Podcast
Healthy Living with Progressive MS
Featured Speaker:
Dr. Thrower is a clinical instructor of neurology at Emory University and participates actively in clinical research. He serves on the board of directors of the Georgia Chapter of the National MS Society and has served on the board for the Consortium of Multiple Sclerosis Institutes.
Learn more about Ben Thrower, MD
Ben Thrower, MD
Ben Thrower, MD., is the medical director of the Multiple Sclerosis Institute at Shepherd Center. He previously served as the medical director of the Holy Family Multiple Sclerosis Institute in Spokane, Washington. In 2000, Dr. Thrower was awarded the Norm Cohn Hope Chest Award by the National MS Society, recognizing his work with the MS community. In 2005, he was the first physician inductee into the Georgia Chapter of the National MS Society Volunteer Hall of Fame.Dr. Thrower is a clinical instructor of neurology at Emory University and participates actively in clinical research. He serves on the board of directors of the Georgia Chapter of the National MS Society and has served on the board for the Consortium of Multiple Sclerosis Institutes.
Learn more about Ben Thrower, MD
Transcription:
Healthy Living with Progressive MS
Melanie Cole (Host): For a person living with MS, physical wellness involves so much more than disease and symptom management. Research shows that a healthy diet, exercise, not smoking and ongoing preventive care cannot only contribute to overall health but can also impact a person’s MS progression and lifespan. My guest is Dr. Ben Thrower, he’s the medical director of the MS Institute at Shepherd Center. Dr. Thrower, what is progressive MS?
Ben Thrower, MD (Guest): Progressive MS can be two things. It can be what we call primary progressive MS. These are people that start with a progressive form of MS from day one and just generally have slow progression over years or it can be an evolution of relapsing and remitting MS. These are individuals who have attacks with their MS early on and then over years evolve into a form of slow progression.
Melanie: So, we have heard about how many medications that people with MS have to be on. Is this any different and how as we are talking about lifestyle and wellness today, how is managing the medications part of this ongoing condition?
Dr. Thrower: We have so many different medications for managing symptoms and now we have our first FDA approved medication in ocrelizumab or Ocrevus for actually changing the course of primary progressive multiple sclerosis, so we are very excited about that. We really do try to get the message out that being well with any form of MS, but especially with progressive forms of MS, can be more than just medications. The average person with multiple sclerosis is on six medications just for their MS, not counting any other health conditions and that’s – that can be problematic. Sometimes we get into drug interactions or side effects with medicines. One of the things that we are really focusing on here at our MS Center, is wellness and rehabilitation. We have a wellness center where we talk about nutrition, exercise, socialization, outside of just regular medication management.
Melanie: So, let’s talk about that then. So, managing the physical health and side effects of all of those medications; what do you tell your patients pretty much every single day about dealing with some of those and possibly some comorbid conditions that they might have that go along with their MS?
Dr. Thrower: So, what I encourage people to do is as much as they can, when they come into see their health care provider, write down what’s going on and try to put the most bothersome things at the top of the list. Sometimes when we step back, and we look at what’s going on in a person’s life, we realize that symptoms are playing off of one another. And we also try to be mindful that not everything in that person’s life is due to their multiple sclerosis. You mentioned comorbidities. Just because you have multiple sclerosis doesn’t mean that you couldn’t have thyroid problems or heart disease or diabetes. So, again, we try to look at that big picture and if we are going to start a medication, we try to think about what medication could be used to manage maybe more than one symptom, so that we are not sort of guilty of polypharmacy or just piling one medicine upon another.
Melanie: Okay, so where do exercise and nutrition fit into this picture Dr. Thrower, living that healthy lifestyle, where does all this fit in?
Dr. Thrower: Exercise is a huge part of being well with multiple sclerosis. It wasn’t that many years ago that people with multiple sclerosis were specifically told do not exercise. They were told that you are going to use up what little energy you have, and that exercise is not a good thing. We know now that not only is exercise tolerated in people with multiple sclerosis, but it is actually desirable. So, studies have shown that exercise that is appropriate for the person’s abilities can improve their sense of wellbeing, it improves their mood, it improves their energy levels, their mobility. The trick is finding what’s right for that person. So, we frequently get asked, what’s the best exercise for a person with MS? The best exercise is one that you have access to, that you are going to stick with and that you tolerate. So, we have people work with a wellness program with a physical therapist, with an exercise physiologist, some sort of team of people that’s going to help them develop a plan and a strategy to let them be successful in their exercise program going forward.
We don’t know what the best diet is for people with MS. We know people with MS tend to die of heart disease, cancer and stroke so we want to be sort of mindful that in picking a diet, do things that are good for your health overall. Every few years, someone says they have figured it out, they have the perfect diet for a person with multiple sclerosis. Whether it’s the Swank diet or MS diet from years ago or now there’s a lot of interest in things like the Paleo diet or the Wahl’s protocol. We just don’t know. What we do know is that again, finding something that focuses on a healthy diet, maybe something that looks like a Mediterranean diet with portion control, something that helps lower your risk of heart disease, keeps your weight in check. I think that that’s where the best evidence is right now.
Melanie: What about things like managing mental health? Because with progressive MS, it could seem to be a little bit damaging to that mental psyche and looking forward to the future and even things like, if you’re single, having a sex life or going out and meeting new people. How do you work with patients about that?
Dr. Thrower: Yeah, so what’s interesting is we know that depression and anxiety are much more common in the MS community than in people without multiple sclerosis. Some of that could be a natural reaction to a change in your life plans and your health state. Some of it may be part of the biology of MS itself. It may be what’s going on in the brain and in the immune system that are driving some of these mood changes that we see. So, again, we want to as part of a comprehensive management plan for multiple sclerosis, take a look at mood. People before they are diagnosed with MS, MS was not part of their plan and so MS frequently affects people in the prime of their life, they are getting married, they are starting jobs, they are thinking about family planning and now MS comes along. We are sometimes a vain society, we look at people. We make judgements about people and their health based upon things like their mobility or whether they are using a piece of adaptive equipment to help get around. So, it can be an issue.
I think having people work with support groups, with counselors, getting out and doing traveling with other groups of people and this is something our physical therapists do a great job with. Showing people that you can still have a very active life, even though you may have challenges in your mobility. One of the things that I’m very proud of at Shepherd is our recreational therapy department where we actually have – you name it for sport, we have adaptive programs so that people can participate even though they may have mobility challenges. The dating and sex life part is – I mean that’s a part of being a human and so we try to make sure that people are comfortable number one, bringing it up. A lot of times people when they are having sexual issues whether it’s a guy with erectile dysfunction or a woman who might have say delayed orgasm; they don’t want to talk about it because they are embarrassed. And it’s our job as the comprehensive medical team to make sure that people are comfortable talking about that. That we are asking those questions, or the nurse is asking those questions and creating an environment where we can help people work through those things.
Melanie: So, really, I mean for anybody, not just people with MS; it’s all about looking forward to the future. What would you like to tell listeners about progressive MS and looking forward to the future, some exciting things going on maybe in research and what you are doing there at Shepherd Center.
Dr. Thrower: So, progressive MS is not a death sentence. It is – people with MS typically again don’t die from their MS. It is a quality of life issue, not a quantity of life issue. And people can still have a great life with any form of MS including progressive forms of multiple sclerosis. Right now, we have in Ocrevus and we have got another drug around the corner that we hope is going to get FDA approval for secondary progressive MS, we have options that may slow that further progression. The holy grail of multiple sclerosis management is neurorepair. This is true for spinal cord injury, it’s true for MS, true for brain injury, a lot of different neurological conditions we would like to have the ability to reverse the damage that has been done. And I think we are getting closer. So, we have clinical trials here at Shepherd Center, a number of other centers in the US and throughout the world are looking at ways of potentially reversing that damage. Whether it’s through adult stem cells or treatments like a therapy called anti-LINGO, I do feel like that is on the horizon for people with multiple sclerosis.
Melanie: Thank you so much for being with us today. And you are such a great guest Dr. Thrower. Thanks for all the great work that you are doing. You’re listening to Shepherd Center Radio. For more information please visit www.shepherd.org that’s www.shepherd.org. I’m Melanie Cole. Thanks for tuning in.
Healthy Living with Progressive MS
Melanie Cole (Host): For a person living with MS, physical wellness involves so much more than disease and symptom management. Research shows that a healthy diet, exercise, not smoking and ongoing preventive care cannot only contribute to overall health but can also impact a person’s MS progression and lifespan. My guest is Dr. Ben Thrower, he’s the medical director of the MS Institute at Shepherd Center. Dr. Thrower, what is progressive MS?
Ben Thrower, MD (Guest): Progressive MS can be two things. It can be what we call primary progressive MS. These are people that start with a progressive form of MS from day one and just generally have slow progression over years or it can be an evolution of relapsing and remitting MS. These are individuals who have attacks with their MS early on and then over years evolve into a form of slow progression.
Melanie: So, we have heard about how many medications that people with MS have to be on. Is this any different and how as we are talking about lifestyle and wellness today, how is managing the medications part of this ongoing condition?
Dr. Thrower: We have so many different medications for managing symptoms and now we have our first FDA approved medication in ocrelizumab or Ocrevus for actually changing the course of primary progressive multiple sclerosis, so we are very excited about that. We really do try to get the message out that being well with any form of MS, but especially with progressive forms of MS, can be more than just medications. The average person with multiple sclerosis is on six medications just for their MS, not counting any other health conditions and that’s – that can be problematic. Sometimes we get into drug interactions or side effects with medicines. One of the things that we are really focusing on here at our MS Center, is wellness and rehabilitation. We have a wellness center where we talk about nutrition, exercise, socialization, outside of just regular medication management.
Melanie: So, let’s talk about that then. So, managing the physical health and side effects of all of those medications; what do you tell your patients pretty much every single day about dealing with some of those and possibly some comorbid conditions that they might have that go along with their MS?
Dr. Thrower: So, what I encourage people to do is as much as they can, when they come into see their health care provider, write down what’s going on and try to put the most bothersome things at the top of the list. Sometimes when we step back, and we look at what’s going on in a person’s life, we realize that symptoms are playing off of one another. And we also try to be mindful that not everything in that person’s life is due to their multiple sclerosis. You mentioned comorbidities. Just because you have multiple sclerosis doesn’t mean that you couldn’t have thyroid problems or heart disease or diabetes. So, again, we try to look at that big picture and if we are going to start a medication, we try to think about what medication could be used to manage maybe more than one symptom, so that we are not sort of guilty of polypharmacy or just piling one medicine upon another.
Melanie: Okay, so where do exercise and nutrition fit into this picture Dr. Thrower, living that healthy lifestyle, where does all this fit in?
Dr. Thrower: Exercise is a huge part of being well with multiple sclerosis. It wasn’t that many years ago that people with multiple sclerosis were specifically told do not exercise. They were told that you are going to use up what little energy you have, and that exercise is not a good thing. We know now that not only is exercise tolerated in people with multiple sclerosis, but it is actually desirable. So, studies have shown that exercise that is appropriate for the person’s abilities can improve their sense of wellbeing, it improves their mood, it improves their energy levels, their mobility. The trick is finding what’s right for that person. So, we frequently get asked, what’s the best exercise for a person with MS? The best exercise is one that you have access to, that you are going to stick with and that you tolerate. So, we have people work with a wellness program with a physical therapist, with an exercise physiologist, some sort of team of people that’s going to help them develop a plan and a strategy to let them be successful in their exercise program going forward.
We don’t know what the best diet is for people with MS. We know people with MS tend to die of heart disease, cancer and stroke so we want to be sort of mindful that in picking a diet, do things that are good for your health overall. Every few years, someone says they have figured it out, they have the perfect diet for a person with multiple sclerosis. Whether it’s the Swank diet or MS diet from years ago or now there’s a lot of interest in things like the Paleo diet or the Wahl’s protocol. We just don’t know. What we do know is that again, finding something that focuses on a healthy diet, maybe something that looks like a Mediterranean diet with portion control, something that helps lower your risk of heart disease, keeps your weight in check. I think that that’s where the best evidence is right now.
Melanie: What about things like managing mental health? Because with progressive MS, it could seem to be a little bit damaging to that mental psyche and looking forward to the future and even things like, if you’re single, having a sex life or going out and meeting new people. How do you work with patients about that?
Dr. Thrower: Yeah, so what’s interesting is we know that depression and anxiety are much more common in the MS community than in people without multiple sclerosis. Some of that could be a natural reaction to a change in your life plans and your health state. Some of it may be part of the biology of MS itself. It may be what’s going on in the brain and in the immune system that are driving some of these mood changes that we see. So, again, we want to as part of a comprehensive management plan for multiple sclerosis, take a look at mood. People before they are diagnosed with MS, MS was not part of their plan and so MS frequently affects people in the prime of their life, they are getting married, they are starting jobs, they are thinking about family planning and now MS comes along. We are sometimes a vain society, we look at people. We make judgements about people and their health based upon things like their mobility or whether they are using a piece of adaptive equipment to help get around. So, it can be an issue.
I think having people work with support groups, with counselors, getting out and doing traveling with other groups of people and this is something our physical therapists do a great job with. Showing people that you can still have a very active life, even though you may have challenges in your mobility. One of the things that I’m very proud of at Shepherd is our recreational therapy department where we actually have – you name it for sport, we have adaptive programs so that people can participate even though they may have mobility challenges. The dating and sex life part is – I mean that’s a part of being a human and so we try to make sure that people are comfortable number one, bringing it up. A lot of times people when they are having sexual issues whether it’s a guy with erectile dysfunction or a woman who might have say delayed orgasm; they don’t want to talk about it because they are embarrassed. And it’s our job as the comprehensive medical team to make sure that people are comfortable talking about that. That we are asking those questions, or the nurse is asking those questions and creating an environment where we can help people work through those things.
Melanie: So, really, I mean for anybody, not just people with MS; it’s all about looking forward to the future. What would you like to tell listeners about progressive MS and looking forward to the future, some exciting things going on maybe in research and what you are doing there at Shepherd Center.
Dr. Thrower: So, progressive MS is not a death sentence. It is – people with MS typically again don’t die from their MS. It is a quality of life issue, not a quantity of life issue. And people can still have a great life with any form of MS including progressive forms of multiple sclerosis. Right now, we have in Ocrevus and we have got another drug around the corner that we hope is going to get FDA approval for secondary progressive MS, we have options that may slow that further progression. The holy grail of multiple sclerosis management is neurorepair. This is true for spinal cord injury, it’s true for MS, true for brain injury, a lot of different neurological conditions we would like to have the ability to reverse the damage that has been done. And I think we are getting closer. So, we have clinical trials here at Shepherd Center, a number of other centers in the US and throughout the world are looking at ways of potentially reversing that damage. Whether it’s through adult stem cells or treatments like a therapy called anti-LINGO, I do feel like that is on the horizon for people with multiple sclerosis.
Melanie: Thank you so much for being with us today. And you are such a great guest Dr. Thrower. Thanks for all the great work that you are doing. You’re listening to Shepherd Center Radio. For more information please visit www.shepherd.org that’s www.shepherd.org. I’m Melanie Cole. Thanks for tuning in.