Shepherd Center engages in research to improve clinical outcomes and the quality of life for individuals with multiple sclerosis (MS). At the hospital’s MS Rehabilitation and Wellness Research Program, researchers study the effects of rehabilitation and exercise interventions for people with MS, and studies also address vocation and quality of life. Researchers also make a concerted effort to share their findings to people with MS, as well as MS healthcare providers, caregivers and healthcare payers in hopes of optimizing function and quality of life for all people living with MS.
Shepherd Center’s MS research program is unique in that it is truly an integration of clinical and research endeavors. This integrated team, led by Dr. Deborah Backus, PT, Ph.D., FACRM, is comprised of physical and occupational therapists, speech therapists, exercise specialists, physicians and research collaborators from various related fields and institutions, who endeavor to answer meaningful questions that can be translated into clinical practice.
Research to Improve Quality of Life for People with Multiple Sclerosis
Featured Speaker:
Learn more about Deborah Backus, PT, Ph.D., FACRM
Deborah Backus, PT, Ph.D., FACRM
Deborah Backus, PT, Ph.D., FACRM, is the director of multiple sclerosis research at The Eula C. and Andrew C. Carlos Multiple Sclerosis (MS) Rehabilitation and Wellness Program at Shepherd Center. She is president-elect of the American Congress of Rehabilitation Medicine (ACRM). Dr. Backus has 30 years of experience as a rehabilitation clinician, educator and researcher. As part of the MS Rehabilitation and Wellness Program at Shepherd Center, Dr. Backus coordinates research efforts to study the health and wellness needs of people at varying stages of MS.Learn more about Deborah Backus, PT, Ph.D., FACRM
Transcription:
Research to Improve Quality of Life for People with Multiple Sclerosis
Melanie Cole (Host): Multiple sclerosis is a chronic autoimmune and inflammatory disease of the central nervous system. Shepherd Center engages in research to improve clinic outcomes and the quality of life for individuals with multiple sclerosis. My guest today is Dr. Deborah Backus. She is the Director of Multiple Sclerosis Research at the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program at Shepherd Center. Welcome to the show, Dr. Backus. Tell us a little bit about multiple sclerosis. What is involved with it and what are some of the barriers to a good quality of life for patients?
Dr. Deborah Backus (Guest): Thank you for having me. As you said, it is an inflammatory disease of the nervous system. It affects over two million people worldwide. The patterns of inflammation and scarring and effects on the neurons that occur throughout the brain and the spinal cord lead to several different kinds of symptoms that affect people’s function and their level of disability which, then, affect their quality of life. They will often have symptoms of fatigue, pain, spasticity – which is hyperactivity in their muscles--that can affect their entire body or just different parts of their body. Oftentimes, they will have difficulty with walking which will limit their physical functioning and their mobility which limits their participation in daily life and interactions with people. It can really have a huge impact on someone’s quality of life when they have restricted mobility.
Melanie: Currently, what are some of the treatments that go on to improve those quality of life issues for people with MS?
Dr. Backus: One of the common treatments is what’s called “disease modifying therapies”. These are drugs that are focused on decreasing the damage from the disease, decreasing the inflammation that can occur in the hopes that it will prevent further relapses or further disability. However, there are a lot of symptoms that remain and so there are drugs that can affect fatigue, pain and spasticity but oftentimes these don’t completely resolve those symptoms. Oftentimes, they can affect things like mobility.
Melanie: Let’s talk about what Shepherd Center is doing to improve the quality of life of people with MS if they have the spasticity or movement issues. What is some of the research that you’re doing there that can help people with this?
Dr. Backus: One of the things that is very clear is that people with MS need to stay active. For a long time, it was thought that they shouldn’t stay physically active; that they should be careful with how they use their energy and how they are active in their environment; they should not exercise. But now, we know that exercise is safe. That’s one of the first things is we try to encourage people to stay active and we have a wellness program that includes exercise programs for people with MS and they’re specially tailored. The research we’re doing is we collect outcomes around those programs to see if they’re being effective and how their being effective and for whom so that we can further tailor those programs. We also are very interested in helping people who are not able to walk, who are in wheelchairs, who are further limited in their physical ability and physical mobility. They, oftentimes, are challenged for getting in the amount of physical activity and exercise that they need. It’s very difficult for them to go into a gym, for instance, even it’s a YMCA or a local gym, because that equipment may not be accessible to them. There may not be knowledgeable professionals who can help them know what the best ways are to exercise. We are actually doing research evaluating different approaches that might help those people. One of the ones is functional electrical stim cycling where we stimulate the muscles in someone’s legs to allow them to cycle. The hope is that we’ll be able to get enough exercise to improve their functional mobility and decrease some of the symptoms – the fatigue, the pain and spasticity – so they can be more interactive and be able to participate more in their daily lives.
Melanie: So, what are you seeing?
Dr. Backus: Actually, the first thing is that people, as I said, can exercise. Even people who are in wheelchairs can exercise and can get benefits from the exercise. For the people who have been in our study with the functional electrical stim or FES cycling, they actually are reporting decreased fatigue and decreased pain and they’re feeling better. For some of those people, that has led to making getting up out of the wheelchair to get into their bed or into the car easier. For other people they might be able to walk a little bit further then they were before. It’s increasing their ability to participate and helping them feel better which, hopefully, will increase their quality of life.
Melanie: What about massage therapy as a way to help to manage fatigue or pain or the spasticity? Is that something you’re looking at too?
Dr. Backus: Yes, we were very pleased to see that if we offered massage therapy to people with MS one time a week for six weeks, they experienced less fatigue and less pain. That’s really encouraging because if we can decrease, for instance, their pain with massage therapy we might be able to take them off of their pain medications. Pain medications have other side effects. They can actually increase fatigue, which is a big problem if you consider the fact that fatigue is just a primary problem for people with MS anyway. If we can take away that medication and improve their feeling of comfort and participation, then, again, we might improve their quality of life.
Melanie: Do people with MS, Dr. Backus, deconditioned quicker than people without? So, that if they start an exercise program with you it’s something they really need to keep up as a lifestyle now.
Dr. Backus: That’s right--just like for anybody—only they’re at a further risk because as disability accumulates or as their physical activity decreases that often leads to less physical activity. It becomes a vicious cycle where they have less physical activity that causes them to feel tired and often will increase their pain and spasticity. It oftentimes will make them feel less confident about going out and doing things, whether it be just walking out in their community or doing exercise. Then, they just spiral and get further deconditioned. Actually, one of the things when we first started our research program we thought we would be focusing a lot on rehabilitation but what we found was that there is such a need for finding ways for people with MS to safely exercise so we can combat the deconditioning so that they can benefit from rehab. But, they have to continue doing it and it’s really imperative that we find ways that they can access these options, even if it means expanding our programs out into the community or educating more professionals so that they can help people with MS. We need to find ways for them to be able to exercise.
Melanie: What wonderful work you’re doing. I applaud all of this great effort you’re putting into it. Tell us a little bit about the MS Rehabilitation and Wellness Research Center at Shepherd Center.
Dr. Backus: It’s really exciting. It does combine both wellness and rehabilitation. The wellness component includes, not only exercise classes, but also classes related to nutrition, how to improve energy expenditure, or to save energy for daily activities, but other kinds of issues that people with MS might have. It’s something that anybody with MS can join. They can also access our promotion, our exercise center, our aquatic therapy or pool therapy. That’s something that will help decrease the barriers; help them learn how to live with their MS; help them to live a healthier life because just because they have MS doesn’t mean they can’t feel good. We just have to find the ways that they can. The rehab component is focused on helping decrease the impairments or the problems they have with mobility and functional activities. There’s physical therapy that’s focused on improving their ability to walk, their ability to go out into the community. There’s occupational therapy. There’s speech therapy which helps focus on cognitive related issues that might help somebody better do their activities of daily living, like managing their checking account, working--those sorts of things. It’s a real nice combination of both and people can access the different components based on what their needs are.
Melanie: Thank you so much, Dr. Backus. It’s such great information and for more information on the MS Rehabilitation and Wellness Research Program at Shepherd Center you can go to Shepherd.org. That’s Shepherd.org. You’re listening to Shepherd Center Radio. This is Melanie Cole. Thanks so much for listening.
Research to Improve Quality of Life for People with Multiple Sclerosis
Melanie Cole (Host): Multiple sclerosis is a chronic autoimmune and inflammatory disease of the central nervous system. Shepherd Center engages in research to improve clinic outcomes and the quality of life for individuals with multiple sclerosis. My guest today is Dr. Deborah Backus. She is the Director of Multiple Sclerosis Research at the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program at Shepherd Center. Welcome to the show, Dr. Backus. Tell us a little bit about multiple sclerosis. What is involved with it and what are some of the barriers to a good quality of life for patients?
Dr. Deborah Backus (Guest): Thank you for having me. As you said, it is an inflammatory disease of the nervous system. It affects over two million people worldwide. The patterns of inflammation and scarring and effects on the neurons that occur throughout the brain and the spinal cord lead to several different kinds of symptoms that affect people’s function and their level of disability which, then, affect their quality of life. They will often have symptoms of fatigue, pain, spasticity – which is hyperactivity in their muscles--that can affect their entire body or just different parts of their body. Oftentimes, they will have difficulty with walking which will limit their physical functioning and their mobility which limits their participation in daily life and interactions with people. It can really have a huge impact on someone’s quality of life when they have restricted mobility.
Melanie: Currently, what are some of the treatments that go on to improve those quality of life issues for people with MS?
Dr. Backus: One of the common treatments is what’s called “disease modifying therapies”. These are drugs that are focused on decreasing the damage from the disease, decreasing the inflammation that can occur in the hopes that it will prevent further relapses or further disability. However, there are a lot of symptoms that remain and so there are drugs that can affect fatigue, pain and spasticity but oftentimes these don’t completely resolve those symptoms. Oftentimes, they can affect things like mobility.
Melanie: Let’s talk about what Shepherd Center is doing to improve the quality of life of people with MS if they have the spasticity or movement issues. What is some of the research that you’re doing there that can help people with this?
Dr. Backus: One of the things that is very clear is that people with MS need to stay active. For a long time, it was thought that they shouldn’t stay physically active; that they should be careful with how they use their energy and how they are active in their environment; they should not exercise. But now, we know that exercise is safe. That’s one of the first things is we try to encourage people to stay active and we have a wellness program that includes exercise programs for people with MS and they’re specially tailored. The research we’re doing is we collect outcomes around those programs to see if they’re being effective and how their being effective and for whom so that we can further tailor those programs. We also are very interested in helping people who are not able to walk, who are in wheelchairs, who are further limited in their physical ability and physical mobility. They, oftentimes, are challenged for getting in the amount of physical activity and exercise that they need. It’s very difficult for them to go into a gym, for instance, even it’s a YMCA or a local gym, because that equipment may not be accessible to them. There may not be knowledgeable professionals who can help them know what the best ways are to exercise. We are actually doing research evaluating different approaches that might help those people. One of the ones is functional electrical stim cycling where we stimulate the muscles in someone’s legs to allow them to cycle. The hope is that we’ll be able to get enough exercise to improve their functional mobility and decrease some of the symptoms – the fatigue, the pain and spasticity – so they can be more interactive and be able to participate more in their daily lives.
Melanie: So, what are you seeing?
Dr. Backus: Actually, the first thing is that people, as I said, can exercise. Even people who are in wheelchairs can exercise and can get benefits from the exercise. For the people who have been in our study with the functional electrical stim or FES cycling, they actually are reporting decreased fatigue and decreased pain and they’re feeling better. For some of those people, that has led to making getting up out of the wheelchair to get into their bed or into the car easier. For other people they might be able to walk a little bit further then they were before. It’s increasing their ability to participate and helping them feel better which, hopefully, will increase their quality of life.
Melanie: What about massage therapy as a way to help to manage fatigue or pain or the spasticity? Is that something you’re looking at too?
Dr. Backus: Yes, we were very pleased to see that if we offered massage therapy to people with MS one time a week for six weeks, they experienced less fatigue and less pain. That’s really encouraging because if we can decrease, for instance, their pain with massage therapy we might be able to take them off of their pain medications. Pain medications have other side effects. They can actually increase fatigue, which is a big problem if you consider the fact that fatigue is just a primary problem for people with MS anyway. If we can take away that medication and improve their feeling of comfort and participation, then, again, we might improve their quality of life.
Melanie: Do people with MS, Dr. Backus, deconditioned quicker than people without? So, that if they start an exercise program with you it’s something they really need to keep up as a lifestyle now.
Dr. Backus: That’s right--just like for anybody—only they’re at a further risk because as disability accumulates or as their physical activity decreases that often leads to less physical activity. It becomes a vicious cycle where they have less physical activity that causes them to feel tired and often will increase their pain and spasticity. It oftentimes will make them feel less confident about going out and doing things, whether it be just walking out in their community or doing exercise. Then, they just spiral and get further deconditioned. Actually, one of the things when we first started our research program we thought we would be focusing a lot on rehabilitation but what we found was that there is such a need for finding ways for people with MS to safely exercise so we can combat the deconditioning so that they can benefit from rehab. But, they have to continue doing it and it’s really imperative that we find ways that they can access these options, even if it means expanding our programs out into the community or educating more professionals so that they can help people with MS. We need to find ways for them to be able to exercise.
Melanie: What wonderful work you’re doing. I applaud all of this great effort you’re putting into it. Tell us a little bit about the MS Rehabilitation and Wellness Research Center at Shepherd Center.
Dr. Backus: It’s really exciting. It does combine both wellness and rehabilitation. The wellness component includes, not only exercise classes, but also classes related to nutrition, how to improve energy expenditure, or to save energy for daily activities, but other kinds of issues that people with MS might have. It’s something that anybody with MS can join. They can also access our promotion, our exercise center, our aquatic therapy or pool therapy. That’s something that will help decrease the barriers; help them learn how to live with their MS; help them to live a healthier life because just because they have MS doesn’t mean they can’t feel good. We just have to find the ways that they can. The rehab component is focused on helping decrease the impairments or the problems they have with mobility and functional activities. There’s physical therapy that’s focused on improving their ability to walk, their ability to go out into the community. There’s occupational therapy. There’s speech therapy which helps focus on cognitive related issues that might help somebody better do their activities of daily living, like managing their checking account, working--those sorts of things. It’s a real nice combination of both and people can access the different components based on what their needs are.
Melanie: Thank you so much, Dr. Backus. It’s such great information and for more information on the MS Rehabilitation and Wellness Research Program at Shepherd Center you can go to Shepherd.org. That’s Shepherd.org. You’re listening to Shepherd Center Radio. This is Melanie Cole. Thanks so much for listening.