TOPIC: COPING WITH MS
QUESTION: How do I handle and cope with knowing that I am going to live with MS for the rest of my life?
Answer from Deborah: Receiving the diagnosis of MS can be unsettling, for anyone at any age. It is important to know that there are different points along the continuum of life with MS. The person will go through a grieving process related to changes in their life that comes with the realization that MS is a part of their life. The key to managing this realization is that MS is only a part of your life, and there is much in the person’s life that remains as it was before their MS. It is very important to find a place for MS in their life without it being the entire focus of their life.
QUESTION: I am struggling with a general weakness and instability in one of my legs. It is progressively getting worse and though I am working at keeping it strong, it is getting weaker. I get frustrated with the work I am doing not having any effect.
Do I keep working at it or give up?
How can I tell when I have reached the point of diminishing return?
Answer from David Jones: It is important to be aware that people should not “overdue it.” Over-exercising can bring on issues of fatigue and over-heating. It has been well known for years that patients with MS will have worsening of symptoms when they get overheated in the setting of fever or in the setting of infection. Realize that slow, gradual increase in physical activity is important. There always is a role for exercise in MS, but do not over extend yourself with physical activity.
Answer from Juliann: How intensely is this person working? Perhaps the exercise regimen at the moment is a little bit too intense. It could be appropriate to scale back the exercise program, with the mindset that “less is more”. It has been well-documented that fitness is important, but it is especially important with MS, as there are wonderful neuro-protective properties to exercise. I would recommend to look up a physical therapist that is versant in MS and symptom management and to go over your routine with them. There are three components to an exercise routine: flexibility, strengthening and aerobic capacity. It may be that the exercise routine needs to be tweaked so that you are pacing yourself.
Answer from Deb Miller: One of the biggest challenges for people who are living with MS is to overcome the mindset that “If I don’t keep doing things (such as exercise) the way I’ve always done them, then I am giving up.” Exercise is a crucial aspect of living with MS, regardless of where you are in the disease process. It may be that the exercise routine that you’ve done in the past needs to be modified. For example, if you were an aggressive runner in the past, you may need to move to a less impacting exercise (such as a water exercise). Keep a focus on what you want to do and what is important to you. Try to find new ways to include those three components of exercise into your routine.
TOPIC: DRUG THERAPY
QUESTION: Should I consider switching to oral MS medications if my Copaxone seems to be keeping my MS under control?
Answer from David Jones: This is a question that I hear almost daily in my clinic. Most everyone would prefer to no longer take shots, and there are several issues to consider. There are now 10 FDA approved therapies in the US. Not everyone responds to every therapy, and there can be side effects to these therapies. If someone’s MS is indeed under control, there are some risks to switching therapies. They may not respond as well to the next therapy, and they may have more side effects to the new medication as they do not have with Copaxone. Copaxone and injectable medicines have a long track record of success, where the oral medicines have been out for three years or less. So, the long term safety issues with oral medicines are not there. “If it’s not broke, don’t fix it”.
QUESTION: My ability to enjoy going to fairs, walks with friends, family vacations, grocery shopping and/or doing anything else is getting very troublesome. I can walk, but after walking about an hour, my legs and upper thighs hurt so badly that I have to sit down for short spells. After I sit for a while, I am able to go again for about an hour and then sit down again.
If I don't sit down, then my legs begin to go numb and a burning sensation takes over making walking any at all unbearable.
What can I do? Is this part of M.S.?
Answer from David Jones: Is this a problem with conditioning? Or, is this an effect of overheating or heat sensitivity? I think it would be reasonable for this patient to be evaluated by a neurologist to be sure that this is an effect of MS and not a vascular problem in the legs. Sometimes, when a patient has MS, the patient and family members assume that everything that a person with MS feels is directly related to MS, which is not always the case.
Answer from Juliann: It may be helpful to find information about fatigue management and to also sit down with an occupational therapist to talk about how to manage your fatigue. Pacing skills is a part of fatigue management and is also one of the trickiest things to incorporate correctly into your exercise regime. A suggestion would be to take a 2-5 minute break/rest every 30 minutes during your walk. This is an example OF pacing your walking to prevent pain. It also may be helpful to USE a cane or an aid to support your walking. Also, there could be tightness issues or decrease in flexibility that could be improved by implementing a flexibility program in your exercise schedule.
Answer from Deb Miller: The person who asked this question was really emphasizing that the walking was associated with activities that they enjoy doing with other people. It may be time to step back and change perspectives about what you want to accomplish during these activities. Walking fast may not be the most important part of these activities. Sitting down and taking a rest may be an opportunity to have a more extended casual conversation with the people you are going to the fair with. You do not ever want to stop doing something that is important and meaningful to you. It is essential to continue to do those activities, but perhaps do them in a different way or accomplish less and enjoy more. You do not need to walk 10 miles to accomplish the goal of enjoying time with friends. You can accomplish your goal by perhaps walking 2 miles and taking a break while spending time with your friends and family.
QUESTION: I recently start having problems with heavy legs. They are heavy which is causing walking problems. What can I do to stop this problem?
Answer from David Jones: This sounds like a relatively new change and problem, which could suggest that if this is an MS problem, perhaps the current disease modifying therapy is not holding the disease at bay, or something is changing with the MS. It is important to be sure that this is indeed an MS problem and not another issue that is not related to MS. The first step is to see a neurologist and assess if the MS has become worse and to treat it for the short term and the long term. Also, it is important to see a physical therapist to receive rehabilitative care.
Answer from Deb Miller: There are many possible causes for the type of problems this patient is experiencing, and not all of those causes are directly related to MS. Therefore, it is important to have a general practitioner, such as a primary care physician or nurse practitioner, as an essential part of your care team to be sure that your general health is being considered and treated. If the heavy legs are related to disease progression, it is important to take time to recognize that there may be changes in your functional ability and to emotionally and physically prepare yourself and your family for the transitions that you may be experiencing. No one ever “accepts” multiple sclerosis, but people make changes to adjust to the disease. It is very important to not let these changes take control of you and your health and happiness.
QUESTION: My husband, who has primary-progressive MS, does not walk anymore. Should he still continue to go to PT twice a week?
Answer from David Jones: 10-15% of people with MS have primary-progressive MS, which is a slow, gradual worsening of problems as opposed to relapses. It involves the spinal cord and typically there are issues with walking and spasticity. Just because people do not walk anymore does not mean there is no function left in the legs. There are lots of things that can be done to maintain function, whether it is the ability to transfer, toilet or use power mobility aids independently. Physical therapy is beneficial because there are still functions to maintain, regardless of whether someone is able to work or not. Sometimes even the passive exercises such as stretching can be very important and effective throughout the progression of MS.
Answer from Juliann: Exercise is so important for overall health and also for overall comfort level. It is critical to implement a flexibility program for this patient’s comfort, especially since he is sitting in the wheelchair for the majority of the day. Incorporating this type of exercise into the husband’s program will provide more ease and flexibility when dressing, changing, or transitioning to and from his wheelchair, all with a level of comfort. Going to a program twice a week will also provide weight-bearing on his legs to improve his overall physical health and also his overall mental health. Additionally, arm bikes or swimming pool can be very helpful for this patient to provide aerobic activity for the patient. It is important to continue to nurture the health of his entire body, even if one part is not used as often.
Answer from Deb: Unfortunately, most insurance companies do not cover physical therapy or occupational therapy on an ongoing basis for individuals who are not showing active improvement in their conditions. Insurance companies are geared toward goals that lead to improvement. The routine that this husband is going through is to maintain function, and not to improve function. Unfortunately, people can become quite frustrated because insurance companies do not support this type of routine. PTs and OTs especially receive the brunt of this frustration, but they are trying to convey that it is potential that patients can continue to receive therapy but not be covered by the insurance company. Obviously, this can be a devastating blow. To the extent possible, patients want to avoid expenses that will not be covered by insurance companies. Often times, PTs and OTs will recommend that family members become part of the exercise team, and they accompany the person with MS to learn the exercise routine and to continue that routine at home on a regular basis, with occasional checks with the PT and OT to be sure that the exercises are done appropriately. We also recognize that it may be asking too much for a spouse or a child to do these daily routine exercises without the benefit of a PT. But, many MS societies have programs that allow for provision of an assistant to come to the house occasionally to help with these exercise routines. If by chance you get the message from your therapist that they are not able to continue ongoing twice a week therapy, please understand it is not because of their lack of desire to help you but it is because of insurance constraints. These professionals will work with the families to devise a program to continue these exercises at home on their own.
Answer from Juliann: Often, we will work with exercise clubs and there will be exercise trainers at the club that are willing to learn about MS, so they can carry-on to help with your exercise routine. This can help to get the patient out of the house and receive these active benefits both physically and socially.
TOPIC: EMERGING THERAPIES & RESEARCH
QUESTION: Are there any new drugs coming out for Primary Progressive MS?
Answer from David: The number of research and presentations on PPMS is increasing. Although we do not have proven drugs with PPMS, there is a lot of research happening with ongoing trials. I do believe the future is bright, not close enough yet to say “when” or “what”, but there is certainly a lot of ongoing activity.
QUESTION: What progress on stem cell research related to MS has been made?
Answer from David: Stem cell research is an interesting topic that is very exciting where research is being done in MS. The research that is furthest along is in bone marrow transplant in an attempt to reset the immune system. This is a procedure being done in some centers experimentally that does come with a fair amount of risk but has some potentially exciting results.
There is an interesting molecule that is being studied by Biogen Idec which is in Phase 2 trials (or soon will be). We know that there are stem cells at the borders of an MS lesion, and for some reason, they do not seem to get activated and we are not sure why. A group of molecules have been found that seem to inhibit these cells from being active, and this is a drug being developed to block that inhibition.
There are also a lot of internet reports about having stem cells injected overseas. There is not a lot of efficacy data on this type of therapy.
Answer from Deb: I do not intend to de-emphasize stem cell research. But, MS remains a disease with no known cause or cure. Many people feel that traditional medicine may not provide a complete overview of the way to approach treatment. Many people are invested in alternative treatments that may not be recommended by their neurologist. Complimentary alternative medicine (CAM) is certainly an accepted part of MS treatment; however, there are some treatments that go beyond CAM that have a potential negative effect on a person’s overall well-being. In general, the approach that MS specialists take towards aggressive CAM treatments should be shared with your physician. Hopefully, you have a relationship with your physician to be able to share that while you are following their treatment regime, there are other avenues of intervention that you would like to follow. This is very important to discuss with your healthcare team, because it can have an impact on the medications that are prescribed to you.
The drugs that are being prescribed are already very expense, and they have undergone FDA approval so there is evidence behind these drugs. Those who are trying expensive non-tested therapies should be very open to discussing the potential therapeutic value of these treatments with their clinicians.
QUESTION: How do relapses change over time? Do they become more frequent the longer the person lives with MS?
Answer from David Jones: There are two different processes that are defined in MS: Inflammatory component to the disease and the degenerative component to the disease. To be fair, there is not as much known about the degenerative component. Relapse has become less frequent as the course of the disease goes on. By definition, a relapse occurs over 24 hours of new or worsening symptoms that happen in the absence of fever or infection and preceded by 30 days of neurologic stability. People transition from the relapsing phase into the progressive phase. Sometimes when people feel they are getting worse, they use the word relapse, but the word progression may be more appropriate. Relapse becomes less frequent the longer they live with MS.
QUESTION: Do functional changes occur accordingly, as in more cognitive changes will occur with longevity of disease? Do relapses increase with age?
Answer from David: Everyone with MS is different. There are some people that only have significant physical changes, and there are others that only have significant cognitive changes. Cognitive changes can occur early, late or at the same time as some of the other changes that take place. Cognitive changes can get worse with the longevity of the disease, and as people get into the progressive phase of the disease, there may be slow gradual worsening and multiple symptoms – including cognitive symptoms.
Answer from Juliann: Anytime you have symptoms that are interfering with your daily life and how you perform those activities in your daily life, it is important to find support for yourself. It is helpful to define exactly what the issues are with your symptoms. For example, many people may claim that they are having memory problems when in fact, they are experiencing processing problems. I would make the recommendation to get some support and see an OT or a speech therapist for cognitive changes. Be very proactive on how you manage how your daily life is impacted.
TOPIC: SECONDARY PROGRESSIVE MS
QUESTION: I was just told that my MS has advanced from relapsing & remitting MS to secondary progressive. What exactly does this mean? What are some of the things I may experience?
Answer from David: The honest answer is: The MS community does not know the answer exactly. We know that over time, people transition from a relapsing phase to a progressive phase, but it difficult to know when this happens. MS goes from an inflammatory disease to more of a degenerative disease, and new lesions tend to occur less frequently in secondary progressive MS. Disability or symptoms tend to perhaps slowly become worse at different rates in different people. Everyone with MS is different, so the changes may be more rapid or may be very slow, physical or cognitive depending on each individual person. There is still much to learn about progressive MS – from what it is and how to treat it.
QUESTION: What is available to help MS patients with heat while exercising at the gym?
Answer from Juliann: Whatever you choose to manage heat while exercising, you are going to need to use it in the cool down phase after your exercise has finished. The bodies and muscles continue to produce heat, and to fully discredit the effect of heat, you want to keep the cooling strategies on for another 10 or 20 minutes.
Everyone is an individual, and everyone responds differently with their MS symptoms and their exercise. Some people get very hot and need to use multiple products to keep their core body temperature cooler. Others do not get as hot, so they may use fewer strategies. Make your cooling techniques personal and use what works specifically for you.
There are a multitude of cooling strategies that are available to patients with MS. Just a few to name: vests, caps with a cooling agent, fans with misters that can spray water,wristbands, ankle bands, evaporative cooling vests, etc. It depends on the part of the country you live in, evaporative coolers work well in the arid regions (and not as well in the humid regions). The National MS Society has done some vetting on these products. Go to http://www.nationalmssociety.org and type in “cooling vests”, and information on these strategies will appear.