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    I have learned several new and important pieces of information from Can Do MS's webinars. It is the type of information that you don't even know to ask about. So I wouldn't have asked my doctor about it. I am especially pleased to find out about neuroplasticity and pre-cooling and post-cooling as related to exercise. Thank you for your efforts on behalf of MS patients like myself.

    Lollie, Webinar Attendee
    •  

    Ask the Can Do Team Q & A


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    QUESTIONS
    I have primary progressive MS and have recently gotten a brace for foot drop. Is there anyone that makes these customized to the patient? The one I have is carbon, and I can only wear it with tennis shoes. I live in Florida, and it is hot here; tennis shoes are miserable. The brace does not fit around the heel or going up the leg, and I was told it is one size fits all. I am an average woman, weigh 140 pounds, and it does not work for me. There must be a better way.

    I am a wheelchair driver, have had MS since 1992 and am 75 years old. My problem is my lift. I have had to call the local volunteer fire department to help me in -20 degree temps to wind up the lift manually. Any advice on what I can do?

    I have spasticity in my legs that prevents me from walking very well. I take oral Baclofen for this. Why is it that I seem worse at times, but without rhyme or reason, at different times of the day, or with or without exercise or activity?. What is the maximum dose of Baclofen, and when is an internal pump indicated?

    I understand that MS affects the myelin that covers nerves. Does MS affect only the myelin in the central nervous system (brain and spinal cord), OR can it also affect myelin on nerves throughout the body? Is myelin only on nerves in the CNS? If myelin is affected on nerves in other parts of the body, is that MS or a different disease?

    I’ve learned that MRIs of people with secondary progressive MS often show no new activity and no new enhanced lesions, even as their walking and balance worsen through time. After those same results for many years, should I continue to get more MRIs?

    My sister can no longer write well. What equipment or tools do people with MS use to keep track of phone numbers, appointments, etc. when they can no longer read their own writing?

    How can I easily make stretching a part of my daily routine? I benefit greatly from doing it, but I forget to incorporate it into my day. I am also active, finding it difficult to make the time for stretching. I would love to get it done in the morning, but I can’t seem to incorporate it successfully into my routine.

    I have deafness due to my MS. I guess it is rare so it’s hard to find help. I have a hearing aid that makes things louder but not clearer. I feel lonely in a crowd. Any tips for me?

    I am mostly concerned with my cognitive problems. Is there anything I can do to help with this? I am also concerned with fatigue. Can more fatigue and sleeping be considered a relapse – particularly after some very stressful days?

    Because of the 80-90 degree heat, my body is really having trouble moving, especially walking. I very much would like to stay indoors near a fan. However, I need to go out to address a few chores. What can I do to keep my legs moving? Thanks.

    I am a physical therapist and I have a patient with MS. We are having issues training her to get up from the floor without an assistive device. We have tried getting into half kneeling which she is able to achieve, but is unable to get up from this position without furniture or help. She enjoys walking, but even using her single point cane she can't recover from a fall. Do you have any resources or webinar clips that might give me a few ideas of ways to progress getting her off the floor?

    I like most MSers experience Uhthoff Phenomenon when I work out. After I cool down, things return to "my normal" physical abilities. I have always been told that no permanent damage is done by getting warm when you work out, but I just heard that continued overheating can eventually cause nerve damage in MS. What is true? Do they really know this answer?

    I have an ongoing loss of strength in my left leg and accompanying left foot drop. Do you know of any exercises or muscle stimulation therapies?

    I have a very mild form or Relapsing MS. So far only my eye sight has been affected but lately I find that I often fall for no particular reason and I'm also often dizzy. Are these signs of a relapse? Is there anything I can do about that? I like walking with my dog but I unfortunately fall and it's embarrassing. Any suggestions would be welcome.

    I have a very mild form or Relapsing MS. So far only my eye sight has been affected but lately I find that I often fall for no particular reason and I'm also often dizzy. Are these signs of a relapse? Is there anything I can do about that? I like walking with my dog but I unfortunately fall and it's embarrassing. Any suggestions would be welcome.

    What is your opinion regarding the effectiveness of oral braces alleviating trigeminal neuralgia by changing one's bite such that pressure on the trigeminal nerve will be reduced?

    I'm considering getting a small home water exercise pool. I don't do laps so I don't need the current provided by an Endless Pool. It just needs to be deep and wide enough for me to do standing exercises. Does anyone have a recommendation? If you have it - do you really use it?

    I have had MS for 13 years. I have gotten worse in the past 2 1/2 years. Since this has happened it has been much harder for my family to care for me. I have a family and my husband is having a hard time dealing with this. I need to make our home handicap accessible so I can do things much easier. I know I'm capable but it's very hard without the right setup. Can you help me to get started to take my life back and be the person I know I can be?

    I'm on Avonex and take my shot on Monday. I have accepted the fact I lose Monday and Tuesday to the flu symptoms. My husband and son have learned these are "MS Monster days" and to let it run its course. Emotionally I feel lost, behind on life and feel as if I have to get so much done and push myself until I am where I am in a cycle of exhaustion, cognitive confusion, and my body is in spasticity, pain which leads back to sleep. How can I stop this cycle and what tools best help keep persons like me caught up and not so disorganized to accomplishing organization within life’s tasks that occur daily? Even this is scatter brain...

    “I learned exercise is good from Jimmy at meeting at Plymouth, MN '06. I still walk my dog. But it’s getting harder. I have success with Ampyra...nothing else...I don't know what to ask my doc?”

    With rising U.S. food costs, are there any money saving tips/ideas you can provide for those who don’t make much money?

    “I would just like to know if exercising on an exercise bike with an ankle brace is beneficial for multiple sclerosis. I have done it without the brace but my drop foot got worse. I am now trying with the ankle brace.”

    Does self catheterization increase your chances of urinary tract infections? Is there a higher reported incident?

    Why is vitamin D so important? Can it help someone who already has MS?

    Is there any other option to start taking a new drug? Can it only be prescribed by a neurologist?

    When I consulted two physical therapists about my ankle weakness, one gave me exercises and the other told me to stop. Advice?

    Are there any treatments that are particularly effective in slowing the progression of my primary progressive MS?

    Is there a safe and viable way for MS patients to recover from physical fatigue and help maintain muscle mass and body weight?

    I'm told I don't drink enough water. I can't persuade myself to drink water. Can you help motivate me?

    What is the best way to exercise when there is limited access to a gym and I suffer from MS fatigue?


    Question: I have primary progressive MS and have recently gotten a brace for foot drop. Is there anyone that makes these customized to the patient? The one I have is carbon, and I can only wear it with tennis shoes. I live in Florida, and it is hot here; tennis shoes are miserable. The brace does not fit around the heel or going up the leg, and I was told it is one size fits all. I am an average woman, weigh 140 pounds, and it does not work for me. There must be a better way.
    Answer:

    Physical Therapist Response
    Patty Bobryk, PT 
    Can Do MS Programs Consultant

    There are many styles of braces (also known as ankle-foot orthoses - AFO’s) that are utilized for foot drop. The main purpose of the brace is to hold the foot and ankle approximately at a 90 degree angle to the leg so that as you swing your leg through to take a step and your toes and/or foot do not drag. A properly prescribed and fitted AFO can make a huge difference in your walking pattern, keeping the mechanics of your walking as close to normal as possible and also decreasing the amount of energy it takes to walk. Without an AFO, many people are at high risk for falling because of their foot drop, or they develop painful musculoskeletal problems that occur because of poor body mechanics.

    The best way to obtain an AFO is to ask your physician to refer you to a physical therapist who has experience in gait analysis and bracing. If you physician does not know a therapist in your region, contact your local chapter of the National MS Society for a referral. Your walking pattern should be thoroughly assessed and recommendations should be made by the therapist on the type of brace that is most appropriate. Ideally, the orthotist (the person who fabricates the brace) should be included in the analysis and your team (your physical therapist, orthotist and YOU) should make decisions on what brace is right for you.

    Braces can be custom-made which can provide the necessary support and can be tailored to your needs. They are typically worn in a shoe that ties because you want the shoe and the brace to act as one unit to provide the support you need. Having said that and living in Florida myself, I understand the heat factor when it comes to close toed shoes. With some strict parameters, I have worked with my patients to use their brace in a sturdy sandal (the sandal MUST have a back strap and hold your brace in it, otherwise the benefit of the brace is lost).
    Another option to consider is the technology of functional electrical stimulation coupled with the walking cycle. As you take a step, a small electrical current causes a contraction in the muscle that lifts your foot so it does not catch as you swing through. The two companies that manufacture these units are Bioness and WalkAide. You can learn more about them on their websites (www.bioness.com and www.walkaide.com). The units are expensive and not all insurance companies provide coverage for them. You can work with your therapist to do a trial to see if this is something that you may be a candidate for.

    I agree that you need to have a product that works for you. You may have to advocate for yourself and contact your insurance company to discuss your particular situation and see what can be done to obtain the appropriate brace for you.

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    Question: I am a wheelchair driver, have had MS since 1992 and am 75 years old. My problem is my lift. I have had to call the local volunteer fire department to help me in -20 degree temps to wind up the lift manually. Any advice on what I can do?
    Answer:

    Occupational Therapist Response
    Linda Walls, OTR
    Can Do MS Programs Consultant

    I would like to share a couple of thoughts regarding your dilemma with your wheelchair lift. 

    First, I would like to suggest that the extreme temperature of -20 degrees can cause many mechanical devices to not work.  In these temperatures, the lift may not work, but the lift is not damaged.  Once the temperatures rise, the lift will probably resume working.  If you feel you still have concerns, an inspection from a company that installs wheelchair lifts may ease your fears.  Don’t let one negative experience influence your confidence in a lift which has probably worked for you many other times. 

    Second, I think you should feel positive about your ability to use your community resources.  Your community volunteer fire department is an appropriate resource for you to call upon in such an extreme situation when temperatures are that low.  Follow up with the volunteer fire department by sending a thank you card, or even visiting them in the spring and bringing them a basket of cookies.  They will appreciate your thoughtfulness and gratitude.  This will then help you to build a relationship with the volunteer fire department should you need them again. 

    A final thought may be for you to look at this situation as a motivator to explore other mobility options that may be available in your area.  Talk with the MS chapter in your area, if they have suggestions for mobility for people with power wheelchairs.  You can also contact the local chapter for people who have suffered a spinal cord injury and are in power wheelchairs. 

    Most important is that you do not allow this unusual situation stop you from being active!  It is important to have your independence and ability to get out of your home and access your community.  

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    Question: I have spasticity in my legs that prevents me from walking very well. I take oral Baclofen for this. Why is it that I seem worse at times, but without rhyme or reason, at different times of the day, or with or without exercise or activity?. What is the maximum dose of Baclofen, and when is an internal pump indicated?
    Answer:

    Physical Therapist Response
    Patty Bobryk, MHS, PT, MSCS, ATP
    Can Do MS Programs Consultant

    Spasticity is a common symptom of multiple sclerosis.  More than 80% of individuals with MS experience some degree of spasticity during the course of their disease.  Spasticity is an abnormal stiffness in the muscles anywhere in your body.  You may also see the terms “increased tone” or “hypertonicity” when someone is referring to spasticity.  The amount of spasticity can vary from a mild sensation of tightness to being so significant that it can cause painful active muscle spasms which actually move the extremity. 

    Spasticity is an imbalance between opposing muscle groups.  For instance, if you have increased spasticity in your quadriceps (the large muscle on the front of your thigh) it may overpower the action of the opposing muscle on the back of the thigh (the hamstrings).  In this case, you may find it difficult to bend your knee because the stiffness in the quadriceps (which functions to straighten your knee) overpowers the action of the hamstring (which functions to bend your knee).  You may feel like you are moving stiff legged or that it takes extra energy to perform the movements to walk.

    There are many things that can influence spasticity.  Sometimes it may be clear to you what has caused a change.  A poor night’s sleep, stress, or fatigue can certainly cause an increase in your spasticity.  Sometimes the reason for the change may not be as clear cut.  Something as subtle as a change in the weather, an increase in your body temperature (even from your normal circadian rhythm), an ingrown toenail or clothing or shoes that are too tight may alter your spasticity.  Certainly if there is an increase in your spasticity from the norm you have to consider the possibility that you may have an infection (the bladder is a common culprit) or that it may be the hallmark of an exacerbation.  Even when those factors are eliminated there may be no clear reason that you can pinpoint why you have an increase in your spasticity.  It may just be the “current state of your neurological system” when there is no other explanation for the change.

    Determining what works best to influence your spasticity is a very personal thing.   Working with your doctor and your rehab professionals to develop a plan to best manage your spasticity is the best course of action.   From a rehab perspective stretching exercises may be enough in some people to manage their spasticity.  It is helpful to have a rehab professional determine which muscles are spastic and to teach you ways to most effectively stretch them. A prolonged stretch is always the most successful (30 seconds to one minute, no bouncing, 2 to 3 repetitions for each muscle group).  Other activities which can have a positive influence on spasticity include yoga, relaxation exercises, meditation, massage and activities in a weight bearing position.  Strengthening exercises also play a role.  You may need to strengthen the opposing muscle, or once the spasticity is reduced, you may find that muscle is weak and needs strengthening.  Orthotics (braces or splints) may also influence spasticity.  Although we often think that spasticity is a negative sign, in some instances spasticity is actually beneficial to an individual’s functional skills.  Spasticity can give legs some stability in order to stand for transfers or walking when someone is very weak.  Again, working with a rehab professional that understands spasticity and can determine the best course of action is key.  If these interventions alone are not effective, the addition of medications can help modulate the spasticity.

    Placement of a Baclofen pump for spasticity management is a decision that is best made with input from your entire medical team.  Most people have the pump placed because the dose of oral medication is at its maximum safe levels, the individual is having side effects from the medications or that the interventions are not producing the desired impact on the spasticity.  The most important thing to consider when exploring if you are a candidate for the pump is managing your expectations of what the pump will do for you.  Have an honest conversation with your team to determine what specific outcomes you can expect and what you will have to do to achieve them.  Having the knowledge of what to expect will increase your chances of success with the pump.

    Neurologist Response
    John Schafer, MD, FAAN
    Can Do MS Programs Consultant

    The manufacturer of Baclofen indicates that the maximum dose of the drug is 80 milligrams a day.  The maximum dose of Baclofen is usually dependent on what can be tolerated by the patient.  It is difficult for me to say what the maximum dose of Baclofen would be for Victoria without having consulted with her personally. 

    Usually, an intrathecal baclofen pump is used for people who have very severe spasticity.  In these cases, the spasticity is so severe that the patient is unable to walk anymore and uses the pump to help transfer from the bed to wheelchair or to the toilet.  There are some selected cases in which the pump can help someone walk better; however, this is for patients with very severe spasticity. 

    I would recommend seeking advice from your medical care team or doctor to provide the most accurate and best advice for your situation.  

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    Question: I understand that MS affects the myelin that covers nerves. Does MS affect only the myelin in the central nervous system (brain and spinal cord), OR can it also affect myelin on nerves throughout the body? Is myelin only on nerves in the CNS? If myelin is affected on nerves in other parts of the body, is that MS or a different disease?
    Answer:

    Neurologist Response
    John Schafer, MD
    Can Do MS Programs Consultant

    Hi Deborah,

    Thank you for your very important question! 

    MS affects myelin in the central nervous system, which includes the brain and the spinal cord. Myelin in the optic nerve is the same as myelin in the brain and spinal cord.  Myelin on the peripheral nerves (those nerves outside of the central nervous system in the trunk, arms and legs) is different in some way that makes the immune system uninterested.  But, the immune system can attack the myelin on the peripheral nerves in disorders such as Guillain Barre syndrome or other immune mediated neuropathies. The treatment for demyelination in the central nervous system and the peripheral nervous system seems to be different.   

    I hope this helps answer your question regarding myelin.  

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    Question: I’ve learned that MRIs of people with secondary progressive MS often show no new activity and no new enhanced lesions, even as their walking and balance worsen through time. After those same results for many years, should I continue to get more MRIs?
    Answer:

    Neurologist Response
    David Jones, MD
    Can Do MS Programs Consultant

    Multiple sclerosis starts as a primarily inflammatory disease that we call “relapsing remitting,” which over time transitions into a more degenerative disease that we term “secondary progressive”; however, in actuality, most MS patients have pathologic evidence of both processes, so the relevance of these terms is somewhat suspect. Relapses and new MRI lesions are felt to represent inflammatory events, while disability progression (not attributable to a relapse) and brain atrophy are commonly thought to reflect degeneration. All of these processes (relapses, new MRI lesions, disability progression, brain atrophy) occur in both RRMS and SPMS, albeit typically with different frequencies.  Indeed, many MS experts think the inflammation drives the degeneration (or vice versa).

    Our current disease modifying therapies for MS are felt to primarily act on the inflammatory component of MS (heralded by relapses and new MRI activity), so the MRI can be a very valuable tool (but not the only tool) in assessing a therapy’s effectiveness. If I deem that a patient’s response to a therapy is sub-optimal, I will recommend changing therapy. That being said, I will often decrease the frequency of MRIs in patients who have not had a relapse or new MRI activity in years; however, I will reconsider this if the rate of disability progression seem to change (or is faster than expected) or if a change is made in a patient’s disease modifying therapy.

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    Question: My sister can no longer write well. What equipment or tools do people with MS use to keep track of phone numbers, appointments, etc. when they can no longer read their own writing?
    Answer:

    Occupational Therapist Response
    Juliann Hanson-Zlatev, OTR
    Can Do MS Programs Consultant

    This is a good question!  This can be a distressing turn of events, but the good news is that there are a variety of ways to adjust and accommodate limited handwriting.

    An important aspect of making any big change in life is recognizing that there will need to be an adjustment period where the “new” form of writing will improve to the individual’s needs and satisfaction.  In other words, it might take a little time and practice to come “up to speed” on a new system.

    If your sister enjoys technological systems (computers, iphones, etc), then she will be in good shape to shift to technology to answer her writing/scheduling needs.  Even if she is not, Apple products make using their systems very easy, and you can get a lot of help that is simple to come by to make the system work well.  (You can trust me on this from experience!!) 

    If technology is not your sister’s favorite tool, then there are a number of handwriting assists that she could try to see if they smooth out her coordination in order to make writing useful again. 

    1)   Technology.  I have a client who is blind and uses an iphone with voice activation to write and send emails, texts, schedule and make calls.  As you can imagine, this includes limited interaction with the keyboard as well.  A computer can be used with voice recognition software also.

    2)   Sometimes keyboarding is actually easier than writing because upper arms can be stabilized while typing, and at that point, I recommend switching to a computer that interfaces with your phone to schedule, write notes, etc. since the information can be easily shared between devices.  Again, I am an Apple fan, simply because their products are simple and easy to use, but the other businesses do this well, too!  She may want to see if using her finger on a Smartphone is easier vs. using a stylus.  I would encourage her to try both to see what works best for her. 

    3)    Hand-writing Tools:  There are a number of products out on the market to help with handwriting, and this is best decided by use.  Your sister may wish to visit a local outpatient OT to see what they have available or to discuss her situation specifically for specific recommendations.  A few of the choices:

    1-  pencil/pen grips
    2- weighted pens
    3- easy glide writer
    4- ergowriter
    5- klick pencil holder
    6-  ring pens
    7- magnetic pens
    8- claw pen
    9- wrist hold down

    As you can see, there a multitude of choices, some of which may be ideal for your sister and some of this would not be ideal.  If she decided to pursue a handwriting aide or tool, I would recommend a visit to an occupational therapist to exercise her options. Sometimes using a slanted writing board can be helpful, in addition to coordination and strengthening exercises! 

    I had a client whose handwriting became very challenging, but after a short rehab program involving coordination, strengthening and stretching, she was able to write again to her satisfaction. 

    I hope this answer has been helpful for you and  I thank you for asking a good question, since it is usually a disruption of the “little” events in our life that cause us considerable frustration!  

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    Question: How can I easily make stretching a part of my daily routine? I benefit greatly from doing it, but I forget to incorporate it into my day. I am also active, finding it difficult to make the time for stretching. I would love to get it done in the morning, but I can’t seem to incorporate it successfully into my routine.
    Answer:

    Physical Therapist Response
    Patricia Bobryk, PT
    Can Do MS Programs Consultant

    Being consistent with an exercise program is always a challenge. Many factors come into play:
    time constraints, energy level, other obligations and even motivation. My best advice for
    incorporating exercise into your daily routine (whether it is stretching or any other form of
    exercise) is to follow the philosophy of intermittent exercise. If you can view your exercise
    program as a series of short bouts of activity that you intersperse throughout your day, it
    becomes much more manageable than trying to carve out 30 or 40 minutes out at one time.
    Here are some examples of how you might incorporate stretching into your day:

    • Do one or two of your stretches before you get out of bed in the morning (as long as you
    can wait to use the restroom).
    • Do one or two standing stretches every time you stand up or go to the kitchen for a
    drink.
    • While you are watching television, stretch in between each show during the commercial
    break, or better yet, stretch during every commercial.
    • Find the stretches that give you the most “bang for your buck” – the ones that address
    the most problematic areas, and be sure you do those first. If you need help determining
    which muscle groups need the most work, consult with a rehab specialist that has
    knowledge of MS.
    • When you are on the phone, a passenger in a car, at a movie theater, sitting at your
    desk, standing at the sink to wash your hands, take a couple of extra minutes and
    stretch!

    A classic book on stretching is titled Stretching by Bob Anderson. This book provides hundreds
    of stretches that you can do in any position and also has specific stretches for specific activities.
    Although this book is not geared directly towards individuals with MS, it gives great suggestions
    on a variety of stretches. Remember, to reap the greatest benefit from a stretch, you must hold
    it at least a slow count of 30 seconds, repeat two to three times on each side and no bouncing
    (this can cause micro-tears in the muscle).

    Good Luck!

    Occupational Therapist Response
    Linda Walls, OTR
    Can Do MS Programs Consultant

    Stretching is an important part of helping us stay active, and though we often think we can not fit
    one more thing into our busy lives, it is possible. To begin with, you have identified that
    stretching makes you feel better, and you recognize it is important. This is the first step to
    making it happen! Managing our time helps us manage our energy.

    Managing our time can be organized into a few steps.

    • First, Plan ahead, if activities are planned they are more likely to occur
    • Second, Prioritize, if you feel something is important, you are more likely to find the time
    • Third, Pace yourself, consider your day and choose those activities that can be
    balanced between high and low energy tasks, for example while checking messages, sit
    and stretch your ankles, or stretch your arm down your side several times.

    To help you incorporate stretching into your daily routine, here are a few suggestions to help
    prioritize stretching into your day:

    1. Make a plan. Identify three to five stretches that you feel are most important. Try to
    match these stretches to movements you are already doing. For example, while in the
    shower, be sure that you are standing tall and pulling your shoulder blades back. Or,
    when you are drying off after your shower, concentrate on stretching slowly up and down
    each leg. Another example may be while at the bathroom sink brushing your hair or
    brushing your teeth, try doing several arm reaches to the ceiling, or leg lifts to the side.
    Another example would be when you are getting dressed, sit down and stretch your leg
    out in front, to the side or add a few trunk twists. Though this may seem like adding time
    to your morning routine, the stretching will allow your movements for the day to become
    smoother, as you work out the stiffness in the mornings.
    2. Another consideration in time management is to start simple. Identify a few stretches
    that make your feel good. Adding three stretches to your morning routine should only
    take a few minutes. As you do these stretches every day, they will start blending and
    become part of your routine. Then as these stretches blend into your routine, you can
    add or switch stretches to address other muscles in your body that would benefit from
    daily stretching.

    Hopefully, with these ideas you can find a starting point for yourself, and move into your daily
    stretching plan!

     

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    Question: I have deafness due to my MS. I guess it is rare so it’s hard to find help. I have a hearing aid that makes things louder but not clearer. I feel lonely in a crowd. Any tips for me?
    Answer:

    Neurologist Response
    David E. Jones, MD
    Can Do MS Programs Consultant

    The first tip is to ensure that your deafness is due to multiple sclerosis because unfortunately, it is common for every symptom that an MS patient may experience to be attributed to the disease. Hearing loss can occur because of issues with the sound conduction system in the middle ear, because of inability to translate sound waves into electrical singles in the inner ear (cochlea), or issues with transferring these electrical signals to the brain, the organ that can be affected by multiple sclerosis, for interpretation of these signals.

    Indeed, hearing loss is a very common issue, with some estimates suggesting up to 10% of the population has some hearing deficits. Despite this, reports of hearing loss caused by MS are distinctly uncommon, and most reports of hearing loss due to MS consist of mild symptoms affecting a single side. The VIII cranial nerves carry both auditory and vestibular information from the ear to an area of the brain called the pons which is a very congested area from the point of view of number of functions controlled. For this reason, most cases of reported hearing loss due to MS have accompanying symptoms, especially dizziness, but also potentially including clumsiness, eye movement abnormalities, or facial numbness / weakness. It is certainly possible for MS to affect interpretation of signals from the ear, especially at a level higher than the pons, although there is little data regarding this.

    Besides a comprehensive hearing evaluation to ensure that the deafness is not due to another problem, there are ways to compensate for this problem beyond hearing aides. Many of these are potentially simple, including attempting to reduce amount of peripheral noise, looking at the individual speaking and improving skills at interpreting non-verbal communication, acknowledging the problem (it is OK to ask someone to speak up), and thinking about positioning yourself to optimize hearing (i.e, not sitting in the back row).

    Speech Language Pathologist Response
    Janet DeClark, MA, CCC-SLP
    Can Do MS Programs Consultant

    Hearing loss is an infrequent symptom of MS, but it can occur. You echo a concern expressed by many people with hearing loss, regardless of the root cause. Hearing aids do make things louder, but they can also amplify ambient sound; this interferes with the ability to weed out what's important from unusable background noise. This often results in feelings of loneliness and isolation in crowds and withdrawal from social interactions. Fortunately, there are strategies you can use to improve the situation!

    • Advocate for yourself: Explain how hearing loss/hearing aids may make it difficult for you to hear speech clearly, and let communication partners know how to help you. Ask them to face you when speaking, to enunciate their words more instead of speaking louder, and to keep hands away from their faces when talking with you. Ask a communication partner to "rephrase" instead of "repeat." People are often too polite to ask about challenges someone may be having, so addressing it in a proactive way gives them permission to discuss it and allows them to share responsibility for successful communication.
    • Modify your environment when possible to make it easier to follow conversations:
      1. Move to a quieter place with less background noise.
      2. Try to converse in a well-lit area. Much communication is non-verbal, and includes facial expressions, body language,  gestures, context and situational cues. Being able to see what is being said and how it is being said can be as important as hearing it.
      3. Divide and conquer. When you are in situations where many are speaking, such as a dinner party, work within your limitations and converse with those closest to you. Speak to one or two people next to or across from you instead of trying to follow a conversation farther away.
    • Aural rehabilitation: Many speech/language pathologists and audiologists can help you with learning and employing strategies to help you hear and communicate better. Aural rehabilitation involves the above strategies along with hearing aid adjustment and refinement, learning how to listen with amplified sound, use of assistive listening devices in addition to aids, speech-reading training and mastering visual cues, help with handling conversations, and optimizing your environment to maximize hearing and communication success.

    Remember to stay in touch with your care team. Notify your physician if hearing worsens significantly or suddenly, and inform the audiologist of new developments or challenges with your hearing. Know that there are many things you can do to help you hear and engage with others, making that loneliness in a crowd a rare event. Try a few of these strategies and get professional help with an audiologist or SLP if you need more individualized or intensive aural rehabilitation.

     

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    Question: I am mostly concerned with my cognitive problems. Is there anything I can do to help with this? I am also concerned with fatigue. Can more fatigue and sleeping be considered a relapse – particularly after some very stressful days?
    Answer:

    Clinical Health Psychologist Response
    David Engstrom,Ph.D., ABPP

    Can Do MS Programs Consultant

    Regarding your concern with fatigue, I think a lot depends on your patterns of fatigue and whether they have changed. Fatigue is very common with MS and can be a result of many things including the disease process itself, medications you take, stress and depression. My suggestion is that you keep careful records of the times when you feel fatigued during each day for at least 2 weeks. Does fatigue come on a regular basis and predictable times each day, or does it vary? Talk to your neurologist about this, and ask if they think any medications may play a part. Keep track of your moods during that same period, and see if the fatigue is connected to feeling depressed or “stressed out”.

    On the subject of sleep, normal sleep for most adults is in the range of 7.5-8.5 hours per night. This should not vary too much with MS; although, the fatigue might cause you to sleep more. In general, sleep is good for you as long as it’s not overdone. Again, I suggest keeping a “sleep log” for several weeks to see if there are patterns. Do you sleep more following stressful events? This could be quite normal too, and I wouldn’t immediately see it as a “relapse”. If you are alert and rested on most days, see if sleep has been better leading up to those days. Do you have less daytime sleepiness after a good night’s sleep?

    It is very important to self-monitor your sleep patterns and moods to see if there is a connection. Take these records to your healthcare providers to get their opinion, and don’t be afraid to ask questions!

    Speech Language Pathologist Response
    Pamela H. Miller, MA, CCC-SLP, MSCS
    Can Do MS Programs Consultant

    It sounds like you have multiple concerns about increasing sleep, fatigue, stress and cognitive problems.  You should be aware that they can influence each other. For example, difficulty with sleep and fatigue can make it more difficult to think as clearly.  Mental fatigue has been shown to interfere with cognition. Our brains need to be well rested, so that we can be alert, attentive, able to process information and recall it later. Unfortunately, fatigue is one of the most common problems in people with MS. The good news is that its effect on cognition is typically temporary, meaning that your performance on thinking tasks improves back to baseline when fatigue is properly dealt with. So it is very important to manage your fatigue through planned rests, applying energy efficiency strategies to daily tasks, and taking fatigue medicines prescribed by your physician. 

    Speak with your doctor regarding your cognitive concerns also. They are also present in ~50-65% of those with MS. Describe them specifically and how they are practically interfering with your daily life.  Ask for a referral for cognitive evaluation and treatment. This can be performed by a neuropsychologist, a speech/language and/or occupational therapist , depending on the nature of problems that you would like addressed. There are many cognitive strategies that a therapist can provide to help you attend, organize, learn and remember better ; as well as manage your sleep, fatigue and stress.

    Keep in mind that when symptoms persist longer than 48-72 hours and interfere with your daily functioning, it is important to contact your physician to rule out an MS exacerbation and discuss symptoms, treatments and referrals.

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    Question: Because of the 80-90 degree heat, my body is really having trouble moving, especially walking. I very much would like to stay indoors near a fan. However, I need to go out to address a few chores. What can I do to keep my legs moving? Thanks.
    Answer:

    Physical Therapist Response
    Kathy SanMartino, PT, NCS, MSCS
    Can Do MS Programs Consultant

    There are a few things you can try.

    1) First of all, I'm sure you are being practical in what you wear in terms of clothing i.e., Wearing the least amount of clothing and clothing that breathes.

    2) Bring a cold, non-caffeinated drink with you to cool off your core.

    3) Try to limit your outings during the hottest parts of the day.

    4) If you have a wheelchair that will get you somewhere quicker -now is the time to use it.  That will limit how much time you spend outdoors.

    5) Blast the AC in the car so your core temperature is lower before you open that car door. 

    6) You could try a bringing a personal fan with you.

    7) Use a cooling tie. You can find these in many stores selling outdoor equipment. I have also seen these ties on www.vermontcountrystore.com.

    8) If all else fails - get a cooling vest. You can call 1-888-MSFOCUS (1-888-673-6287) or visit http://www.msfocus.org for financial assistance for the cooling vests. www.polarproducts.com seems to be a popular source for cooling vests.

     

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    Question: I am a physical therapist and I have a patient with MS. We are having issues training her to get up from the floor without an assistive device. We have tried getting into half kneeling which she is able to achieve, but is unable to get up from this position without furniture or help. She enjoys walking, but even using her single point cane she can't recover from a fall. Do you have any resources or webinar clips that might give me a few ideas of ways to progress getting her off the floor?
    Answer:

    Physical Therapist Response
    Susan Kushner, MS, PT
    Can Do MS Programs Consultant

    It is hard to assess exactly what is weak on this patient that is not allowing her to come to standing with ease. It could be any of the leg or trunk muscles, or balance, lack of range of motion, etc…

    That being said, I would have a few suggestions:

    -If possible, always walk with someone who would be able to help in case of a fall, or if she is alone, make sure she is in an area where someone could help her if she does fall.

    -Use 2 forearm crutches, 2 canes, 2 walking sticks, or a walker when going for a walk. If she would fall, she can use the 2 points of support to help push herself up versus just the single cane. Or she may want to have a single cane, but carry one of the folding canes in a bag or purse so again, she’d have 2 bases of support to help herself up.

    There is a great resource from the NMSS for both the patient and the PT. It is a binder that is an 8 week, once/week course that is titled “Free from Falls: A Comprehensive Fall Prevention Program for People with MS”. It is excellent.

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    Question: I like most MSers experience Uhthoff Phenomenon when I work out. After I cool down, things return to "my normal" physical abilities. I have always been told that no permanent damage is done by getting warm when you work out, but I just heard that continued overheating can eventually cause nerve damage in MS. What is true? Do they really know this answer?
    Answer:

    Physical Therapist Response
    Laurie DeMayo, MSPT
    Can Do MS Programs Consultant

    With spring upon us and the weather getting even hotter this is a very timely question.

    Uhthoff’s Phenomenon is a very common symptom in multiple sclerosis. The symptoms generally do increase with the core body temperature increasing. There is no evidence that there is permanent damage from repition. There are several ways to keep your body cool and beat the heat.

    1) STAY HYDRATED (With ice water)

    - Dehydration can lead to fatigue, dizziness, and muscle cramps.  The general recommendation is to drink 2 cups or 16 ounces of water about two hours before your work out.
    - Drink ice water before, during and after your exercise. Keep your core temperature low.
    You can freeze your water bottle overnight or you can use a hydration pack for your convenience.

    2) EXERCISE IN A COOL ENVIRONMENT

    - A COOL POOL IS A NICE OPTION
    - When possible exercise indoors with air-conditioning on or outside during the cooler times of the day.
    - Utilize cooling devices such as a cooling vest or even a wet bandanna around your neck or an EverCool Bandana.
    - A twenty minute very cold shower or cold bath can cool your body temperature for quite a while.

    3) WEAR CLOTHING THAT BREATHES

    - Use exercise clothing designed to wick away sweat, allowing your skin to do a better job at cooling your body.
    - Lightweight, breathable, and light colors are good choices.

    4) UTILIZE AIDS TO KEEP YOUR BODY COOL

    - If you're exercising outside wear a hat to protect your head.
    - Consider performance socks to keep your feet cool and dry.
    - Use sunglasses and sunscreen.
    - Use a cooling vest, a cold and wet bandanna around your neck, or any other cooling device.
    - Sip ice water throughout your exercise.
    - Split your workouts into two times a day if necessary. Shorter workouts reduce the potential increase in your core body temperature. Allow yourself to exercise at the cooler times of the day in the morning and at night. The benefits of exercise are cumulative.

    5) COOL- OFF AFTER EXERCISE

    If you have experienced an increase in your symptoms such as Uhthoff’s phenomenon, cooling off should help you return to your functional baseline.
    You can seek further suggestions from a local PT, OT, Exercise Physiologist and of course your doctor.  Also, I have found no evidence of permanent damage.
    Enjoy all the benefits of your commitment to exercise!

    Neurologist Response
    Janice Miller, MS, MD
    Can Do MS Programs Consultant

    Many individuals with MS experience Uhthoff’s phenomenon, a temporary recurrence of previous MS symptoms or worsening of MS symptoms with increased body temperature, whether from fever, exercise, or hot weather. As body core temperature cools to normal, the symptoms go away.  Thus, there is NOT any lasting or permanent change in one’s neurologic status. This is due to the fact that heat slows conduction speed of nerve fibers that are partially or fully demyelinated.

    We may soon be able to validate that Uhthoff’s is a temporary condition causing no lasting injury to nerve conduction. Researchers are measuring precise eye movement velocity in the MS condition called intranuclear ophthalmoplegia (INO) during systematic core body temperature increase and then during and after cooling. In addition to establishing whether nerve conduction returns to normal, therapeutic agents to prevent Uhthoff’s can be tested.

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    Question: I have an ongoing loss of strength in my left leg and accompanying left foot drop. Do you know of any exercises or muscle stimulation therapies?
    Answer:

    Physical Therapist Response
    Jane L. Wetzel PT, PhD
    Can Do MS Programs Consultant

    Exercise may improve all types of gait dysfunction in persons with MS.1 Muscles must be strengthened according to the amount of force they are able to produce. Aggressive exercise may actually make some muscles weaker. Resistive exercise for muscles that are graded 4/5 (60% of Normal) or 5/5 will actually help reduce overall fatigue and help your body compensate for those muscles that are unable to work against gravity (2/5 [10% of Normal] or less). However, if muscles are very weak (3/5 [20-30% of Normal] or less) orthoses are important to help protect the weak muscle and prevent overuse – especially during periods of exacerbation. Overworking weak muscles with exercise or ambulation without a leg brace may make the muscle weaker. Assistive devices and balance training may reduce gait dysfunction from imbalance.

    Electrical stimulation may be used as a method of strengthening weak muscles. An investigation on the effect of 8 weeks of surface Functional Electrical Stimulation (FES) training to the quadriceps on the levels of general, central, and peripheral fatigue in MS patients revealed that general fatigue, central and peripheral fatigue and impact of fatigue significantly improved [Fatigue Index: FI (p = 0.01), Central Fatigue Index:CFI (p = 0.02), and Modified Fatigue Impact Scale:MFIS (p = 0.02)] after FES training.2 In this study it is likely that increasing strength helped improve the stronger muscles and decreased the amount of total contraction time of muscles during gait. Less contraction time happens when you move more efficiently and this means there is less chance for fatigue.

    You can use electrical stimulation while moving light resistance to assist in strengthening your muscles for 3/5 muscles. However, long-term resistance training with electrical stimulation is no better than traditional strength training for improving function.3 One study recently demonstrated an improvement in EDSS score. Individuals with MS in this study had on average an EDSS score of 5.9 (range, 4.5-6.5). They received electrical stimulation for 140 days (range, 22-495). Mean EDSS scores improved by 0.78 (range, 0-2.0).4    

    Electrical stimulation may also be used as an orthotic in gait. There is evidence that walking with an FES stimulator may actually strengthen central nervous system connections as well as assist in the activation of weak muscles.5 Walking speed increased with the stimulator off (therapeutic effect) by 24% (P = .008) and 7% (P = .014) in the non-progressive and progressive groups, respectively. So it appears that individuals with non-progressive neurological conditions (like stroke) will receive a greater benefit in terms of improving central nervous system connections than people with MS who have a progressive condition.  Another study examined patients with secondary progressive MS placed in one of two groups (home exercise vs. electrical stimulation). Those individuals who were given the home exercise program had significant improvements in their walking speed over 10 meters and distance walked in 3 minutes than those using FES training. Those with FES training did not have a significant improvement after 18 weeks of exercise6 when walking was tested without the stimulator in use.

    However, the group using FES as an orthotic walked much faster with the FES than without the FES. So there is clearly a functional benefit. However, once the orthotic is off (walking to the bathroom at night) the PT guided exercise program offered greater improvement. There are many times when someone with MS and foot drop may need to move around without the stimulator.

    What can you do with all this research??? Find a good physical therapist who has good knowledge of MS and who has examined your muscle strength in detail. If electrical stimulation is able to assist in clearing your foot during gait then it may be a wonderful tool to help you walk better. If your MS is involving your hip and knee flexion you may not find as much benefit from electrical stimulation designed to assist foot drop (common peroneal n. stimulation). Consider working on strengthening all muscles that are 4/5 or better in your hip and knee. This may reduce your fatigue. Be sure to work with your therapist so you know which muscles to try to strengthen and which muscles should really be protected (especially during an exacerbation). Sometimes a solid or articulating ankle brace may be a good way to protect your ankle muscles and keep you from overworking weak muscles. It may also allow you to safely clear your foot. Pay attention to all your symptoms whenever you try a new brace or a new exercise. If the new exercise makes you weak then let your therapist know. Exercises will need to be modified several times before the right strengthening program is achieved.

    References:

    1. Cameron MH. Wagner JM. Gait abnormalities in multiple sclerosis: pathogenesis, evaluation, and advances in treatment. Current Neurology & Neuroscience Reports. 11(5):507-15, 2011 Oct.
    2. Chang YJ. Hsu MJ. Chen SM. Lin CH. Wong AM. Decreased central fatigue in multiple sclerosis patients after 8 weeks of surface functional electrical stimulation. Journal of Rehabilitation Research & Development. 48(5):555-64, 2011.
    3. Broekmans T. Roelants M. Feys P. Alders G. Gijbels D. Hanssen I. Stinissen P. Eijnde BO. Effects of long-term resistance training and simultaneous electro-stimulation on muscle strength and functional mobility in multiple sclerosis. Multiple Sclerosis. 2011;17(4):468-77.
    4. Wahls TL. Reese D. Kaplan D. Darling WG. Rehabilitation with neuromuscular electrical stimulation leads to functional gains in ambulation in patients with secondary progressive and primary progressive multiple sclerosis: a case series report. Journal of Alternative & Complementary Medicine. 2010;16(12):1343-9.
    5. Everaert DG. Thompson AK. Chong SL. Stein RB. Does functional electrical stimulation for foot drop strengthen corticospinal connections? Neurorehabilitation & Neural Repair. 2010; 24(2):168-77.
    6. Barrett CL. Mann GE. Taylor PN. Strike P. A randomized trial to investigate the effects of functional electrical stimulation and therapeutic exercise on walking performance for people with multiple sclerosis. Multiple Sclerosis. 2009; 15(4):493-504.
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    Question: I have a very mild form or Relapsing MS. So far only my eye sight has been affected but lately I find that I often fall for no particular reason and I'm also often dizzy. Are these signs of a relapse? Is there anything I can do about that? I like walking with my dog but I unfortunately fall and it's embarrassing. Any suggestions would be welcome.
    Answer:

    Neurologist Response
    George Garmony, MD
    Can Do MS Programs Consultant

    Thanks for asking this important question. One of the most complex functions of our central nervous system is to keep us upright and to help us to avoid falling. Anything that impairs the way the brain and spinal cord work together puts a person at risk of unsteadiness and causes a sense of dizziness. The broad term for this symptom is dysequilibrium, or a loss of normal balance.

    In persons with MS, loss of equilibrium is usually a sign of an exacerbation in the brain stem, but there are many other possibilities. The problem could be related to an infection in another part of your body, a medicine that you are taking, weakness that you haven't noticed in your legs or feet, or some other factor specific to your body. It's important that you see the physician who treats your MS (probably a neurologist.) He or she will do physical tests with you to help to determine the exact cause of your dysequilibrium. An MRI may be recommended to see whether there is evidence of a recent exacerbation. Lab tests may be ordered to see whether there is a separate condition that affects how your central nervous system is working. Most importantly to you -- after these tests are completed, treatment will probably be recommended. This could include anything from medical treatment to physical therapy, and may well include both approaches. There are certainly things that you can do to reduce your risk of falling.

    Since MS can have many different symptoms, it's important that you develop a spirit of cooperation with your doctor and the other members of your treatment team. And you should make sure to use disease modifying medication correctly to reduce the risk of further exacerbations even though your disease has been mild in the past.

    Physical Therapist Response
    Tammy G. Roehrs, PT, MA, NCS
    Can Do MS Programs Consultant

    Our balance systems are complex, and are supported by our vision, our vestibular system (in our ears), and by our somatosensory systems (the sensations of pressure, joint position, and joint movement in our legs and spine).  It is not unusual for visual difficulties to lead to dizziness and falls for individuals with MS.  This may be true even if a person has a mild form of MS, or if a person is not having a relapse. 

    We must also consider the context in which we are trying to balance, especially the environment in which we are moving, and the task we are trying to perform.  You mentioned that you are falling when walking your dog.  Is this the only time you fall, or are there other times?  Spending some time thinking about when you fall, or when you nearly fall, and trying to identify a pattern is important.  Is it always outside?  When you are distracted or trying to do more than one thing at a time?  When you are fatigued, or perhaps overheated?  Sharing the pattern of your falls (and "near falls") with your physical therapist is one important step in designing a plan to prevent future falls. 

    There is good news!  Our nervous systems have a great ability to learn, and balance can improve, with a tailored program to meet each person's specific needs.   I would suggest working with a physical therapist who specializes in treating individuals with MS or vestibular/ balance impairment.  Contacting the MS Society, your neurologist or nurse practitioner, or investigating websites of local PT practices are all methods to identify a physical therapist with these qualifications.

    Walking your dog is a great activity for so many reasons!  You Can Do something to improve your balance, decrease your number of falls, and keep exercising with your pet. 

     

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    Question: I have a very mild form or Relapsing MS. So far only my eye sight has been affected but lately I find that I often fall for no particular reason and I'm also often dizzy. Are these signs of a relapse? Is there anything I can do about that? I like walking with my dog but I unfortunately fall and it's embarrassing. Any suggestions would be welcome.
    Answer:

    Neurologist Response
    George Garmony, MD
    Can Do MS Programs Consultant

    Thanks for asking this important question. One of the most complex functions of our central nervous system is to keep us upright and to help us to avoid falling. Anything that impairs the way the brain and spinal cord work together puts a person at risk of unsteadiness and causes a sense of dizziness. The broad term for this symptom is dysequilibrium, or a loss of normal balance.

    In persons with MS, loss of equilibrium is usually a sign of an exacerbation in the brain stem, but there are many other possibilities. The problem could be related to an infection in another part of your body, a medicine that you are taking, weakness that you haven't noticed in your legs or feet, or some other factor specific to your body. It's important that you see the physician who treats your MS (probably a neurologist.) He or she will do physical tests with you to help to determine the exact cause of your dysequilibrium. An MRI may be recommended to see whether there is evidence of a recent exacerbation. Lab tests may be ordered to see whether there is a separate condition that affects how your central nervous system is working. Most importantly to you -- after these tests are completed, treatment will probably be recommended. This could include anything from medical treatment to physical therapy, and may well include both approaches. There are certainly things that you can do to reduce your risk of falling.

    Since MS can have many different symptoms, it's important that you develop a spirit of cooperation with your doctor and the other members of your treatment team. And you should make sure to use disease modifying medication correctly to reduce the risk of further exacerbations even though your disease has been mild in the past.

    Physical Therapist Response
    Tammy G. Roehrs, PT, MA, NCS
    Can Do MS Programs Consultant

    Our balance systems are complex, and are supported by our vision, our vestibular system (in our ears), and by our somatosensory systems (the sensations of pressure, joint position, and joint movement in our legs and spine).  It is not unusual for visual difficulties to lead to dizziness and falls for individuals with MS.  This may be true even if a person has a mild form of MS, or if a person is not having a relapse. 

    We must also consider the context in which we are trying to balance, especially the environment in which we are moving, and the task we are trying to perform.  You mentioned that you are falling when walking your dog.  Is this the only time you fall, or are there other times?  Spending some time thinking about when you fall, or when you nearly fall, and trying to identify a pattern is important.  Is it always outside?  When you are distracted or trying to do more than one thing at a time?  When you are fatigued, or perhaps overheated?  Sharing the pattern of your falls (and "near falls") with your physical therapist is one important step in designing a plan to prevent future falls. 

    There is good news!  Our nervous systems have a great ability to learn, and balance can improve, with a tailored program to meet each person's specific needs.   I would suggest working with a physical therapist who specializes in treating individuals with MS or vestibular/ balance impairment.  Contacting the MS Society, your neurologist or nurse practitioner, or investigating websites of local PT practices are all methods to identify a physical therapist with these qualifications.

    Walking your dog is a great activity for so many reasons!  You Can Do something to improve your balance, decrease your number of falls, and keep exercising with your pet. 

     

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    Question: What is your opinion regarding the effectiveness of oral braces alleviating trigeminal neuralgia by changing one's bite such that pressure on the trigeminal nerve will be reduced?
    Answer:

    Neurologist Response
    John Schafer, MD
    Can Do MS Programs Consultant

    Trigeminal neuralgia is caused by irritation of the trigeminal nerve as it arises from the brainstem (the part of the brain roughly behind one's ear). The pain is felt not at this site of irritation but rather "downstream" at the end of the trigeminal nerve in the face and jaw.  The pain of trigeminal neuralgia is very distinctive and consists of sudden, brief jolts of pain, described by many as like an electrical shock. These jolts may occur in isolation or in trains, one after the other. Often a milder pain is present even between the jolts. Trigeminal neuralgia may occur in bouts, present for weeks or months and then disappearing completely, though it may recur again and sometime in the future, and not all with trigeminal neuralgia experience these remissions.  

    The jolts of pain are often triggered by mechanical stimulation in the area of the pain. Most commonly, touching along the side of the nose, chewing or even talking trigger the jolts of pain, leading some with this disorder to stop washing their face or even stop talking or eating.   

    Because there are so many triggers to the jolts of pain, devices to relieve the mechanical triggers, including braces, would not likely solve more than a small part of the problem.  Additionally, these types of triggers may change over time.

    The most effective treatment for trigeminal neuralgia are medications. Carbamazepine and oxcarbazepine, in particular, almost always stop the pain, often dramatically, though they may cause side effects which limit their use in some people. Other medications may be helpful in some individuals. Several surgical procedures are available which may bring relief for some.

    Neurologists tend to be the most well versed in causes and treatments of trigeminal neuralgia. Information about the disorder and help in locating a neurologist are available through the website of the Trigeminal Neuralgia Association:  http://www.fpa-support.org/.    

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    Question: I'm considering getting a small home water exercise pool. I don't do laps so I don't need the current provided by an Endless Pool. It just needs to be deep and wide enough for me to do standing exercises. Does anyone have a recommendation? If you have it - do you really use it?
    Answer:

    Physical Therapist Response
    Michele Harrison, P. T., CSMS, ATRIC, ATP
    Can Do MS Programs Consultant

    We know that exercise is essential in our lives to maximize our health and to improve our ability to participate in all the activities that comprise our lives.  Once we have committed to this concept there are a few things we need to do to be successful: 

    1. Choose an activity you enjoy participating in.
    2. How accessible is the exercise chosen to my abilities?
    3. How accessible is the exercise chosen to my location?
             a. What local and financial resources are available

    Aquatic exercise is a great option for exercise for many reasons.  A couple of benefits include:

    1. Greater ability for movement and standing up due to buoyancy in the aquatic environment.     
    2. If the water is the appropriate temperature, it is a great way to be active and stay cooler. 

    The next step is to locate a pool in your area.  If this is a recreation center, then there may be exercise classes and programs available, or a person may choose to participate in their own workout during open swim times.  Contact your local physical, occupational, recreational therapist or exercise physiologist for information regarding an effective aquatic exercise program that can address endurance/fatigue, strength, balance, flexibility and mobility is important.  The local National MS Society chapter or MS clinics may offer classes as well. Sometimes there really are no local pools close enough to utilize.  Some people have private pools or decide to have one built for their own residence.  The options for this are numerous and varied.  A custom therapy pool could be designed and fabricated to most any specifications desired.  There are above ground pools and pools that are in ground.  There are pools that accommodate only one person or multiple people.  There are pools with a variety of sizes, depths, pool surfaces, seats and whirlpool jets, for example.  A decision for pool design will be driven by the types of activities the person wants to participate in.  For example, if a person want to swim laps but has limited space in their home or yard, they may want an endless pool.  This is a pool that is 1 lane and has a current to allow a person to perform laps while swimming in place.  This style could be used with or without the jets for water walking but configuration will limit other uses.  Someone that wants to do other exercises may need a space that is bigger to move around in. 

    Other considerations include pool depth for the best utilization of buoyancy, ability to sit for rest breaks during a workout if needed and access to a pool.    There are a variety of ways to get in and out of the pool including a ladder, steps with or without a railing, ramp or a lift (this could be a permanent lift or mobile).  A pool that is above ground may not be as easy to get into and out of but more economical and easier to install.  Safety and ease of getting in or out of a pool consistently is important.  There are small walk-in types of pools with a door but these are very limited in space and sometimes expensive options.  The person putting a pool in there residence also needs to think about the expense of putting the pool in but also the continued maintenance to keep the water clean and safe for use.  The tests to keep the chemicals and Ph levels often require daily maintenance.  Is the pool indoors or outdoors with only seasonal availability for use?  This needs to be considered as well. 

    Do people use a private pool?  This is the $1,000 question.  As with any type of exercise equipment, it is up to the person and their motivation to use the equipment, not to just look at it.  If you are motivated and able to schedule use of the pool 3 – 5 times per week, it may be a good investment.  However, if you only use it occasionally, finding an existing local pool may be a better choice.   

    There are a number of custom therapy pool designers and manufacturers.  There are often local pool designers as well. 

    Endless Pools or Waterwell
    1601 Dutton Mill Road
    Aston, PA  19014
    (866) 559-7946

    Hydroworx
    1420 Stoenridge Drive
    Middletown, PA  17057
    (800) 753-9633

    Ferno
    70 Weil Way
    Wilmington, OH  45177
    (937) 382-0895

    Whitehall Manufacturing
    15125 Proctor Ave.
    City of Industry, Ca  91744
    (800) 782-7706

    Aquatic Access Inc.
    417 Dorsey Way
    Louisville, KY  40223
    (800) 325-5438

    Physical Therapist Response
    Mary Kay Hausladen Foley, PT, GCFP, CHTP
    Can Do MS Programs Consultant

    First of all congratulations on your obvious commitment to exercise and self-care!

    As you probably know aquatic therapy and exercise can be a wonderful choice for people with MS.  The water, given it is an appropriate temperature, helps to keep your core temperature down during exercise, while the buoyancy of the water often allows for greater function and freedom of movement.  Having a pool at home can help alleviate some of the common pitfalls of aquatic exercise including travel time to a pool, heavy chlorination of public pools, and finding a place to do standing exercise if the pool is being utilized for lap swimming. 

    Some aspects to consider in your decision to get a home pool would include;

    1) Do you truly enjoy aquatic exercise?  Some people start aquatic exercise because of its benefits, which are many.  However, unless you truly enjoy pool exercise it may not be a wise investment.

    2)  Have you thought about safety considerations?  Are you able to transfer safely into and out of a pool, or do you have someone to assist you?  Will someone be home while you are in the pool if you need assistance? 

    3)  Do you enjoy exercising alone?  Some people prefer the camaraderie of an aquatic class setting, while others much prefer a quiet place to do their exercise alone.

    4)  Have you tried aquatic therapy?  Even if you have done some pool exercise in the past, I would recommend consulting with an aquatic therapist before making this purchase.  They can help you look at your specific needs and recommendations for exercise presently, as well as considering what might be appropriate for you in the future.  They can also help you look at the different pool models which are available and recommend what features are important to maximize your exercise potential, as well as safety.  The American Physical Therapy Association has an Aquatic Physical Therapy Section which has a locator for aquatic therapists.  The link is: http://www.aquaticpt.org/findaclinic/index.cfm  (I did notice that all resources are not listed on this site, but it is a good place to start.  If they do not have a listing for someone in your area, I would ask a local physical therapist for a recommendation.)

    I work in a physical therapy clinic where we have a Swim Ex exercise pool.  We have had patients come in to use our pool on a regular basis for their exercise programs.  Most have not used the current for swimming, but several have used it for resisted walking.  You might want to consider this use when deciding whether or not to get a pool with current. In addition to allowing you to work on walking for functional distances, a current allows you to more easily include resisted walking or running for cardiovascular exercise in your routine.

    Aquatic exercise is a wonderful way to feel refreshed and energized while gaining the cardiovascular, strength and flexibility benefits of exercise.  I wish you the best with your decision on this potential investment in your health.  Whether or not you decide to get the pool, be sure to keep moving.

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    Question: I have had MS for 13 years. I have gotten worse in the past 2 1/2 years. Since this has happened it has been much harder for my family to care for me. I have a family and my husband is having a hard time dealing with this. I need to make our home handicap accessible so I can do things much easier. I know I'm capable but it's very hard without the right setup. Can you help me to get started to take my life back and be the person I know I can be?
    Answer:

    Occupational Therapist Response
    Ann Mullinix, OTR/L
    Can Do MS Programs Consultant

    First, I want to commend you for your motivation and determination to enhance your independence! I know you are working very hard to care for your family and keep up with the demands of life.  It is not easy, and your health is a priority, which has become more consuming over the past 2 ½ years.

    Know that yes, there are ways to modify your home environment to enhance your independence and there are resources in the community to assist. 

    Your first step will be to contact a MS Navigator through the National MS Society (1-800-582-5296). An application will be sent to you to fill out to receive financial assistance/start the process for a home evaluation by a medical professional, such as an occupational or physical therapist, pending on who is available where you live.  A home evaluation will give you the specific recommendations you are looking for to make your home handicap accessible.

    Modifications that are made to homes include structural adaptations such as increasing width of doorways for accessibility; railings, ramps, or stair glides, if stairs are a challenge. More minor changes may include obtaining durable medical equipment such as grab bars in the bathroom or shower chairs; bed rails and commodes.  Other examples of easy modifications include changing doorknobs to levers, and hinges on doors to swing clear hinges. Some modifications don’t require purchasing or installing anything, but only simple re-arrangement of where frequently used items are located for easier, energy saving convenience. The MS Navigator will also be able to assist you will obtaining items needed, and know there is grant money for medical equipment, daily living aides, and even household chores!

    There are many ways a home can be modified, from simple to more complex, and a health care professional’s evaluation will give you the specific direction you need to take.  With the right set up, you can do it and like you said Maria, you can “take your life back.”

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    Question: I'm on Avonex and take my shot on Monday. I have accepted the fact I lose Monday and Tuesday to the flu symptoms. My husband and son have learned these are "MS Monster days" and to let it run its course. Emotionally I feel lost, behind on life and feel as if I have to get so much done and push myself until I am where I am in a cycle of exhaustion, cognitive confusion, and my body is in spasticity, pain which leads back to sleep. How can I stop this cycle and what tools best help keep persons like me caught up and not so disorganized to accomplishing organization within life’s tasks that occur daily? Even this is scatter brain...
    Answer:

    Registered Nurse Response
    Jennifer Smrtka, ANP-BC, MSCN
    Can Do MS Programs Consultant

    Unfortunately, flu-like symptoms are common potential side effects with all interferon beta therapies used in MS. But there are some important tips that one can utilize to lessen the likelihood of losing days due to these symptoms.

    First, make sure to be hydrated; especially on days of injections and “MS Monster days”, this can decrease flu like symptoms and their severity. Secondly, it may be helpful to take acetaminophen (Tylenol®), ibuprofen (Advil®), or naproxen sodium (Aleve®) an hour before injecting (at bedtime) and then re-dose again in the morning after breakfast. It may be helpful to take these medications for 24 hours after the injection. Thirdly, it may be helpful to take the injection in the evening before bedtime in an attempt to sleep through some of the side effects. Lastly, if you continue to struggle with your injections, speak to your neurologist and let him/her know your troubles. There are many options available and there may be a better option for you.

    Emotionally, sleep deprivation can lead to feeling overwhelmed and “scatter brain”, as well as having difficulties with concentration, and coping strategies. It is hard to stay organized when you are exhausted and not feeling well. Perhaps using some organizational tools maybe helpful- such as a smart-phone to set reminders and alarms, or a personal organizer with a calendar. A centrally located “family calendar” may also be helpful with your husband and son’s assistance to complete for upcoming events. Weekly or even daily family staff meetings over dinner to communicate and establish what needs to be done on a day to day basis can also be helpful and share the burden of family tasks. There are websites that also have organizational tools for families.

    Check out: www.parents.com; www.grocerylists.org; www.chorebuster.com; www.cozi.com

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    Question: “I learned exercise is good from Jimmy at meeting at Plymouth, MN '06. I still walk my dog. But it’s getting harder. I have success with Ampyra...nothing else...I don't know what to ask my doc?”
    Answer:

    Physical Therapist Response
    Kit Concilus PT, MS, OCS
    Can Do MS Programs Consultant

    I am glad to hear that you are still walking your dog. You are right about exercise being very important for you. 

    It sounds like it would be helpful for you to analyze what specifically is making the activity of walking the dog more difficult for you. It may be that you are experiencing problems with balance, endurance, coordination, fatigue, spasticity, muscle weakness, muscle tightness, joint stiffness, or some combination of these things. You can talk in detail with your doctor to help figure out which is affecting your dog walking the most, and come up with a plan to improve the situation. Sometimes subtle improvement in one of these areas can make a big difference in function. Maybe medication, exercise, bracing or other options can help you meet your goal. You can discuss the possibility of working with a physiatrist (doctor who specializes in rehabilitation) too.

    My guess is that you could benefit from working with a physical therapist who is familiar with Multiple Sclerosis at this point. Therapists love to work with people who come to them with a clear, measurable goal such as "I want to be able to walk my dog for (so many) minutes." Your physician can help you find the physical therapist. The therapist can measure your walking speed, take a close look at your musculoskeletal status and walking pattern, and develop a home exercise program that will help improve your ability to walk your dog, and fit into your lifestyle. During this process, remember to focus on what you CAN do. Happy dog walking!


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    Question: With rising U.S. food costs, are there any money saving tips/ideas you can provide for those who don’t make much money?
    Answer:

    Question submitted by Denise., CAN DO Program Graduate

    Registered Dietician’s Response
    Denise Nowack, RD
    Can Do MS Programs Consultant

    Eating well doesn't have to take a bite into your budget.  A little work up front can save you time and money down the road.  Here are some tips to keep a few pennies in your pocket without compromising your health.
     
    Have a plan. 
    Look for healthy recipe ideas using budget-conscious ingredients.  (Search the internet using the ingredient as the key word.)   Create a master shopping list to keep your refrigerator and pantry filled with staples that are quick and easy to cook, and kind to your wallet. These can include:
    * Pastas
    * Quick-cooking grains (like quinoa, couscous, brown rice)
    * Canned beans (a great source of fiber and protein)
    * Soups (choose reduced-sodium varieties)
    * Canned & frozen fish
    * Canned & frozen varieties of fruits and vegetables
    * Nonfat powdered milk (use when milk is needed as an ingredient in cooking)
     
    Shop smart. 
    * Clip coupons…or go online to look for discounts on the products you use most. 
    * Check your list and stick to it!  Resist the urge to pick up “extra” items from end-of-aisle displays or at the checkout counter.
    * Buy in bulk and store in ready-to-use portions.  If storage space is limited consider splitting packages with a friend to take advantage of volume savings.
    * Look for specials. Stock up on staples when they go on sale.
    * Take advantage of fresh fruits and vegetables in season.  For other produce, frozen and canned products can be good choices and just as nutritious as fresh.  Opt for low-salt products and avoid those prepared in sauces or with added sugar. 
    * Go generic.  Buying the store's brand of canned, frozen or bagged foods can provide great savings without compromising nutritional value. 
     
    Make the most out of meals. 
    When you have the energy to cook, double up on recipes! Freeze the extra in oven-ready containers, or use later in the week for lunches or quick dinners. Leftovers from a roasted chicken at dinner can be reinvented the next night in as chicken pesto pasta or for lunch in a chicken salad.  Leftover vegetables can give canned soups, rice or pasta a nutritional boost.
     
    While pre-cleaned and precut produce can save time and energy in the kitchen they can be more expensive than their standard counterparts.  Go for whole fruits and vegetables and cut them up yourself. Chop and package them in common portion sizes for the recipes you use most, or slice and store them for an easy snack.  
     
    Be a savvy snacker.
    Healthy snacking can be your best friend in managing fatigue.  However, single-serving snack foods can be costly.  Create your own individuals snack packs.  Make them in advance and package in individual snack bags so you can “grab & go.”

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    Question: “I would just like to know if exercising on an exercise bike with an ankle brace is beneficial for multiple sclerosis. I have done it without the brace but my drop foot got worse. I am now trying with the ankle brace.”
    Answer:

    Question submitted by as K. Perumal, living with MS

    Physical Therapist Response
    Susan Anacker, MSPT
    Can Do MS Programs Consultant

    Congratulations on showing your Can Do spirit and modifying your exercise world to fit your MS! 

    Yes, I agree that you should use your ankle brace when you use your exercise bike.  The brace will help protect your foot and ankle, keeping them from slipping off the pedal and possibly getting injured by the spinning pedals.  With the brace you will be able to bike further.  Using an exercise bike will improve your cardiovascular health, strengthen your legs and fuel your “Can Do” optimism.  I would suggest starting with frequent short sessions.  (for example, 5 minutes 6 days per week is better than 30 minutes 1 day per week)  Start with low resistance.  Your goal is a brisk cadence with a free, light feel.   The best indication of how hard to work is the perceived exertion scale. (my.clevelandclinic.org/heart/prevention/exercise/rpe.asp)  This is a method to rate how you feel as you exercise, and use this feeling as a guide to exercise intensity.  Generally you should strive to exercise in the moderate, 3-4 range on a 1-10 scale.  Increase both time and resistance slowly. (For example, increase time 1 minute every 2 or 3 days).  At the end of the session you should feel pleased with you accomplishment and eager to bike again tomorrow.  Make sure to take a moment at the end of each workout to celebrate your accomplishment.  This is the fuel that keeps all of us coming back to exercise again.

    As you continue on your exercising adventure you may want to do some daydreaming about real life biking (with ankle brace, of course), trying one of the numerous biking options available these days.  (Reclining bike, tandem bike, three wheel bike, cruiser bike, electric bike…assist when you need it, no assist when you feel fresh.)

    Again, the goal for all of us is to modify our environment to allow us to exercise more and feel the joy of movement.  Thanks for showing us the way!  See you on the bike trail!

    Here are a few links to information on biking for people with differing abilities. 

    www.dsusa.org/equipment-cycling-Providers.html
    www.thebikerack.com

    www.ilovebikes.com

    Occupational Therapist Response
    Linda Walls, OTR
    Can Do MS Programs Consultant

    There are several points to make in answering this question.  First, exercise is good for someone who has MS, just like it should be a part of everyone’s regular routine.  Your body benefits from exercise in that it keeps your muscles stretching and strong, exercise also gives you the benefits of a good cardiovascular system. If you used to use an exercise bike in the past, then finding a way to continue using it, is a good idea.  Sometimes, in order to accommodate the changes in our body, we need to make modifications so that we can continue to exercise.

    Second, to address the concerns with the ankle brace.  The best answer would be to talk with the professional who provided you with the brace, to make sure there are no contraindications.  If the brace is a simple device designed to help promote your ability to keep walking safely, then you can consider moving to the next step.  If you decide to try using the bike with the brace on, make sure the brace fits well and does not irritate your skin anywhere.  Each time you exercise with the brace on, check your skin afterwards and look for red irritated areas that do not fade within the hour.  Also, begin with a short period of time, and slowly build.  For example, exercise with the brace for 10 to 15 min. then check your skin.  After successfully tolerating the 10 to 15 min. interval for several days and no skin irritation, increase the amount of time slowly, always checking your skin.  This general idea of slowly increasing your tolerance for wearing a brace while exercising applies to many types of braces and supports. 

    Thirdly, when you begin to participate more in your exercise routine, take time to pay attention to how your body is responding to the increased exercising.  Take time to allow your body to recover, and notice if the increased exercising impacts your overall level of fatigue.  A regular exercise program should help you manage your energy levels and hopefully even provide your with an increased level of energy. 

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    Question: Does self catheterization increase your chances of urinary tract infections? Is there a higher reported incident?
    Answer:

    Question submitted by Ann, 2007 CAN DO Program participant

    Urologist Response
    Dr. Susan Kalota, Urology
    Can Do MS Programs Consultant

    In general self catheterization decreases the number of symptomatic infection.  It is much safer than an indwelling catheter.  The idea is to completely drain the bladder several times per day.  Bacteria will often be introduced into the bladder but they tend to live there without causing problems (colonization).  Non urologists often confuse colonization with infection.  If there are no symptoms of infection and the organism is not Proteus, the bacteria should not be treated.  If someone is getting frequent symptomatic infections they need to make sure their technique is good, that they are not having problems with a spastic bladder and they should then make sure they are using a new catheter each time.

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    Question: Why is vitamin D so important? Can it help someone who already has MS?
    Answer:

    Question submitted by Dan Melfi, 2011 CAN DO Program Graduate

    Nutritionist's Response
    Baldwin Sanders, MS, LD, RDN 
    Can Do MS Programs Consultant

    Vitamin D is a fat soluble vitamin most famous for its role, along with calcium, in bone density. It is actually a hormone because it can be manufactured in the skin, with the exposure to sunlight. Whether you receive your vitamin D from sun or food, it must be activated by the liver and then the kidney to function.  The active form of vitamin D is Calcitriol.  We obtain 80 to 100% of our vitamin D from sun exposure. The amount of sun needed depends on skin color, age, season, location and time of day. Generally, 15 minutes of sun exposure to hands, face and arms is adequate to synthesize the vitamin D precursor that is required.  Seniors and those with dark skin need about 5 times as much.  Other things that may affect your ability to absorb sunlight are pollution, geographic latitude, cloud cover, window glass, intestinal and kidney disease.  There are few dietary sources of vitamin D.  In the US, we fortify milk with 400 IU per quart by law, so all dairy products are good sources.  Fatty fish are another good source.  The Recommended Dietary Allowances for calcium have recently been increased to 600 IU for ages 1 – 70 years, and 800 IU for those over 70 years. One cup of milk contains 400 IU. Meeting the vitamin D RDAs may be difficult for people with lactose intolerance.

    The main function of vitamin D is to maintain a normal calcium range and prevent rickets and osteoporosis. More recently, vitamin D is being studied as an important immune modulator in Multiple sclerosis. Low vitamin D levels are associated with a higher risk for MS. The geographic distribution of MS adds evidence as areas with more sunlight have a lower incidence of MS. Many physicians with MS clients are monitoring their blood levels of vitamin D and prescribing supplements.  Please note:  Blood levels should be monitored, and people should not dose themselves with Vitamin D without a physician's supervision.

    Neurologist's Response
    Barbara Giesser, MD
    Can Do MS Programs Consultant

    Vitamin D is gaining increasing recognition as an agent that has immuno modulating and anti-inflammatory effects. There are studies that indicate that sun exposure and Vitamin D levels early in life may influence a person's risk of getting MS, i.e. less sun and lower Vitamin D levels are correlated with increased risk. For persons who already have MS, there is data that suggests that lower Vitamin D levels may increase the chance of an exacerbation.

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    Question: Is there any other option to start taking a new drug? Can it only be prescribed by a neurologist?
    Answer:

    Question submitted by Mark T., CAN DO Program Graduate, 2011

    Neurologist’s Response
    Randall T. Schapiro, MD, FAAN
    Can Do MS Programs Consultant & Board Member

    Finding a neurologist is not a simple question.  There are a lot of factors that go into that choice and some of them are out of one's practical control.

    The first is: are you in an area of the country that has enough neurologists to offer a choice?  If not, one may need to travel to where there are appropriate choices and that may be difficult for some but I recommend that if necessary. 

    The second "out of control" issue is insurance coverage.  Does your insurance allow you to choose as you desire?  Given that you can make a choice, I would recommend you talk to others with MS about who is actually interested in sincerely treating MS in your area.  While all neurologists will express interest, clearly some have more interest than others.  The National MS Society is a good place to start as each chapter should be keeping a list of interested neurologists.  After the list is obtained, the interview process should occur.  That may start with a call to the office and a listen as to how the staff treats prospective patients. Inquire about the nursing staff as they are important in long term care.   If all goes well an initial appointment should be made to discuss the situation.  Keep in mind your personality and will it mesh with the doctor's.  Are you one who likes to call all the shots and does not take advice well?  Is the doctor one who likes to dictate and does not discuss well, etc.?  "Chemistry" is important.  Make a list of questions that you want answered and see if it "feels" right. 

    Any physician can prescribe the treatments but not all know what they are doing.  You need a neurologist but it has to be one who has kept up with what is new in MS and there is a lot new.  You do not want one who uses only one medicine at the exclusion of all the rest.  There are lots of options but without knowing your specific situation (that can only be determined by an appointment and evaluation) it would be inappropriate to suggest any specific treatment.  While most who have MS should be protected is some way, there are a few lucky ones who make it through without.  That has to be discussed with your physician to see where you are in the spectrum of MS.  Good luck to you!

    Nurse Practitioner’s Response
    Patricia Kennedy, RN, CNP, MSCN
    Can Do MS Nurse Educator & Programs Consultant

    I’m glad you are thinking about getting back on a disease management treatment.  While none of them is 100% effective against MS, they certainly do alter the course of MS in a positive way.  I personally feel all patients with relapsing MS should consider being on one of them.  There really is no other treatment that can deliver the same results.  Many patients want to consider an alternative kind of therapy to avoid cost or not require a neurologist to prescribe. Unfortunately, to date, there is no therapy available that will be able to alter the course of MS.

    As to your question about whether a neurologist has to be the prescriber; it is best to have a neurologist who specializes in MS or has many patients with MS and is knowledgeable about the medications to be managing you and your medication.  If you live a distance from someone like this, set your sites on who is most accessible and make the trip.  You can work with him or her to set up a secondary provider closer to you who they can consult with when you have issues and then you can visit the specialist maybe once a year.  Sometimes primary care physicians can work with the specialist to follow blood work or see you more immediately but they should not be prescribing for you or managing your MS by themselves.  Physician Assistants and Nurse Practitioners can also prescribe medications for you but should be collaborating with an MS physician specialist.  Some NP’s and PA’s have made a specialty of MS and follow many of their MS patients themselves.

    So, you need a primary care provider to take care of the whole of you.  That same provider can collaborate with your MS specialist, even if they are a distance away.  This is part of setting up your team.  The hard part is making a trip to see that specialist.  I hope you’ll be able to manage that.  There may be several MS issues the specialist may identify that you can work on once you return home.  This may enlarge your team, but using local resources.

    I wish you good luck with your efforts.  Good for you for making goals and reaching for them.

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    Question: When I consulted two physical therapists about my ankle weakness, one gave me exercises and the other told me to stop. Advice?
    Answer:

    Question submitted by Kay Roberts, CAN DO Program Graduate, 2001

    Physical Therapist’s Response

    Susan Kushner, MS, PT
    Can Do MS Programs Consultant

    Without knowing what the ankle problem is (weakness, bracing, etc) and whether you use an assistive device, I would suggest that you ask each physical therapist WHY they are recommending what they are recommending. Most likely they each have good rationale behind their decisions and advice to you. It is up to you to use logic and maybe even practice as to WHICH suggestions will be best for your case, as long as you feel that nothing detrimental will be done to the ankle or put you in harm's way, such as risking a fall. Feel free to gently say to one what the other one suggested and ask why the advice may be different. They both may have very good, valid points and a compromise may work.

    Without knowing the specifics, I hope these suggestions help you.

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    Question: Are there any treatments that are particularly effective in slowing the progression of my primary progressive MS?
    Answer:

    Question submitted by Ed Ferrera, CAN DO Program Graduate, 2007

    Neurologist’s Response
    Randall T. Schapiro, MD, FAAN
    Can Do MS Programs Consultant

    To my mind the management of primary progressive MS is a matter of science and philosophy.  By that I mean that an appropriate amount of understanding into multiple sclerosis as a whole is necessary to manage “primary progressive” MS.  The diagnosis itself is based on the presumption that the person has never had a relapse.  That is the definition of primary progressive.  However, if one delves hard enough into the history of almost everyone with that diagnosis, one finds a relapse somewhere and the diagnosis is then most appropriately called “secondary” progressive.  Thus the diagnosis, itself, is usually pretty flimsy.  To base a whole treatment scheme on that kind of flimsy clinical calling is pretty weak.  Yesterday I was on an airplane with a person (by coincidence) who came from a small town and supposedly went off her Copaxone because a physician called her “primary” progressive and she immediately had an attack.  Thus what is most important to me, philosophically, is: are you getting worse?  If so, then something has to be done.  Many of the common MS treatments have been tested in progressive (both primary and secondary) MS.  The studies did not reach statistical significance for their primary endpoints and thus were call “failures”.  However in each study there was a cadre of patients who clearly responded to the treatment.  There were just not enough to call the study successful statistically.  But to those patients that did respond, it did not matter that the others did not. 

    Thus I think it reasonable to try different treatments and see what the response is over 6 months to a year.  I think we can get hung up on the terminology and give up without trying.  Success is a slowing of the progression, maybe not entire stabilization but slowing.  There are new studies being done on a regular basis on progressive MS and we are buying time.  While we buy time with disease modification, symptom management becomes particularly important.  Thus with more advancing MS, it is important to look at the symptoms and manage them aggressively.  The tools are pharmacologic, rehabilitative, and psychological.  Therefore appropriate rehabilitative/exercise/mental management is essential.  I will leave to my co-answerer some rehabilitative pathways but they are essential.

    The point is that there is much to be done and when I hear some tell me their physician told them they have Primary MS and there is nothing to be done, I cringe.  There is a lot to do and continue to do with a can do spirit!

    Physical Therapist’s Response
    Beth Gibson, PT
    Can Do MS Programs Consultant

    We all have our habits and routines, but sometimes they just don’t seem to work. For example, if the MS causes your muscles and limbs to feel tight or spastic, you could spend a lot of energy trying to get out of bed in the morning. Discuss this with your doctor for the medical management that is right for you and get into the habit of stretching these muscles / limbs to reduce the stiffness or tone. Work with a Physical Therapist at an out-patient clinic or if needed, have a home Physical Therapist come to you. The National MS Society has the “Stretching for People with MS” and helper booklets (on their website). Try a yoga or adaptive yoga class through a local health club, your local MS chapter or the Arthritis Foundation.

    Working with a Physical Therapist can also give you information on mobility devices or tools to reduce the effort to move but increase your safety. A small bed rail can help you roll and get into and out of bed. If you like walking on a cane but your other hand likes to be on the wall or the back of the chair, look at a front wheeled walker for maximum stability or a 4 wheeled rolling walker for a bit less stability but that has a seat to rest on. If walking in the community is getting limited, look at the scooters – the 3 or 4 wheeled type or the power chair – or look at an electric wheelchair. I do recommend going to be evaluated by a PT/OT at a wheelchair or “Assistive Technology” clinic to get the device that is suited to you and your needs. And don’t forget about those Occupational Therapists – they have some nifty ideas for around the bedroom, bath and kitchen.

    These are just a few ideas to help simplify your day because you have important things to do. Whether going to the grocery store or delivering world peace, the day belongs to you.

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    Question: Is there a safe and viable way for MS patients to recover from physical fatigue and help maintain muscle mass and body weight?
    Answer:

    Question submitted by Kevin Walter, CAN DO Program Graduate, 2010

    Exercise Physiologist’s Response
    Alexander Ng, PhD
    Can Do MS Programs Consultant

    Kevin,
    The nature of your question leads me to believe that you are initially referring to recovery from physical activity or exercise. Recovery is directly related to the activity that causes the physical fatigue. The more intense or harder the activity, and the longer the duration of activity, the longer will be the recovery time. If you are having difficulty recovering from exercise then try to cut back on either the exercise difficulty, duration, or both. If you wanted to maintain a certain moderate or perhaps high intensity then I would recommend breaking it up into smaller time blocks.

    As mentioned in a previous question/answer the exercise does not have to be
    continuous for you to receive a benefit. Proper nutrition is also important to
    the recovery process. In addition, adequate nutritional support is necessary to maintain muscle mass and body weight… the second part of your question. If maintaining or increasing muscle mass and strength is a goal then I would make sure you are doing some appropriate strength or resistance exercise in addition to whatever aerobic exercise you may be doing. A YMCA would be a good place to start a formal strength training program as their personnel are usually pretty competent and can have experience with “special populations”.

    Regardless, speak to an experienced exercise, rehabilitation, or related professional for proper strength training techniques and programs. In addition, there is also good evidence that strength training can help decrease symptomatic or “MS fatigue”, which you may have referred to as the last part of your question.

    In short, pace yourself, eat well, and maybe add some strength exercise! I hope this helps. Good luck.

    Nutritionist’s Response
    Baldwin Sanders, MS, RD, LDN
    Can Do MS Programs Consultant

    Your diet can have a big influence on your fatigue level. Skipping meals or going too long without eating can exacerbate fatigue. A quick breakfast of cereal, banana and milk or yogurt and fruit are better than skipping breakfast.

    Having snacks available is important so you don’t go too long without food. High protein snacks are good as they tend to make you more alert. Sweets tend to make you sleepier. Carrying mozzarella cheese sticks, a handful of nuts, or a container of yogurt can help you make it to supper.

    A good idea is to have some frozen meals available so when you get home you have something quick and easy to microwave. Otherwise you tend to go with
    anything that is there, chips and salsa, etc. When you are cooking something
    good, cook in bulk and freeze for later. Make large batches of soup, and freeze
    in individual servings so you have a quick fix for lunch or supper.

    Occupational Therapist’s Response
    Juliann Hanson-Zlatev, OTR
    Can Do MS Programs Consultant

    This is an excellent question, Kevin.

    The first “trick” to managing physical fatigue is in utilizing 2 strategies to
    your advantage. Pacing yourself and prioritizing your schedule and intensity of activities is paramount to achieving your goals and managing fatigue.

    1) Pacing: To pace yourself effectively you must strive for a
    fairly consistent level of physical activity each day. It is helpful to think
    of the whole of your day in order to do this, including mundane/everyday chores
    because everything you do requires your energy. For example: Avoid working
    very hard for 1-2 days then “resting” or “collapsing” for several days because
    you will have depleted your resources and your body will have difficulty in
    anticipating your needs. This also applies to the intensity of your workout as
    well. The more consistent your work out is the better your body will maintain
    muscle mass and skill. The more consistent you are the more your body and mind
    “absorbs” the skill and you will use less energy to perform it as time goes on.

    (Another example: an Olympic skier exerts less energy skiing bumps than the
    rest of us; mundane activities use less of our energy than when we are learning
    a new skill).

    That said, there are always exceptions and you may wish to plan ahead with your
    schedule to anticipate a long or challenging day by planning into subsequent
    days your rest breaks. For example: you may wish to go out with friends or
    family one evening; the following day you may want to plan a lighter day so you
    will not use as much energy. However, you would still plan activities for the
    following day – just lighter.

    2) Prioritizing: This helps you get the chores/activities that are important to
    you done. When we fail to prioritize we set ourselves up for disappointment or
    overdoing it just to accomplish our list! Placing high priority tasks/chores at a time of day that ensure they will get done helps us do just that – accomplish
    our “’to do” list. Here is the great news: your priorities can shift and
    change and do not have to include only work chores. Exercise, hobbies, friends and interests should also move into the #1 and #2 spot to balance and round out your life. Keeping exercise close to the top of your priority list will ensure that you build endurance, maintain body mass and skill level, and improve your cardiac capacity for improved longevity (read: less fatigue).

    A final word on fatigue management; try to use as little energy as possible to
    complete a given task. For example: sitting to perform any activity requires
    less energy than standing to perform the same activity; so sitting to shave,
    brush your teeth, prepare food, etc.can save muscle exertion and thereby grant
    you more energy elsewhere in your day where you WANT to use it. Thank you for
    asking an important question.

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    Question: I'm told I don't drink enough water. I can't persuade myself to drink water. Can you help motivate me?
    Answer:

    Question submitted by Dennis, CAN DO Program Graduate, 2009

    Urologist’s Response
    Susan Kolata, MD
    Can Do MS Programs Consultant

    There is no specific amount of water needed daily. In Arizona in the summer you
    might need to drink 20 glasses of water to maintain a reasonable output if you
    exercise in the sun. The more important question is how much urine output is
    needed and what it takes to get there. If you produce stones, a reasonable
    preventative output is 2 liters of urine daily. If you just want a minimal
    output, it is one liter. In between would be best.  

    Many foods will help towards this goal as well, fruits, soups, vegetables, etc. Only high protein shakes/or bars, etc will take away fluids, but some drinks are
    less desirable such as coffee, sodas and alcohol. Using bottled water can be
    helpful in counting the volume -ie try and drink 1 bottle per 1-2 hours, or so
    many per day - for those goal oriented people. Adding lemon juice or orange
    juice to the water, making ice tea, finding a water, or water temperature that
    is enjoyable, can be helpful. The ultimate goal is to produce urine that is
    lighter in coloration (less concentrated), so stones are flushed out, bacteria
    is flushed out as well as routine toxins.

    Nutritionist’s Response
    Denise Nowack, RD
    Can Do MS Programs Consultant

    Water is an essential part of your body’s daily routine.   It helps in the digestion and transports other nutrients, controls body temperature and is important for brain function.  It’s something we can’t live without.

    It might be tempting to avoid beverages as a strategy to “manage” bladder problems. However, this can lead to dry mouth, loss of appetite, swallowing difficulties, headaches, constipation, deficiencies in certain nutrients, and increased risk for urinary tract infection.

    Don’t despair if you don’t like water.  It’s really about getting adequate fluids, and that can come from a variety of sources. 

    Here are a few tips to staying well hydrated:
    * Start with your oral medications. Make it a habit to drink a full glass of water or juice each time you take your pills. 
    * Include other beverages at meal and snack time like juice, milk or sparkling
    water. You can even make your own fruit spritzer by diluting your favorite fruit juice with sparkling water.
    * Build in “water breaks” throughout your day.
    * Pass a water fountain…take a drink.
    * Carry your own personal water supply when you are out and about.

    If you’re prone to urinary tract infections, include cranberry juice (or tablets).  In addition to providing fluids, cranberry juice can be of added benefit in preventing urinary tract infections by preventing bacteria from sticking to the cells that line the urinary tract.

    In addition to beverages, the foods you eat can help satisfy your body’s thirst.  In fact, about 20% of our daily water intake comes from food, with fruits and vegetables having some of the highest water content (upwards of 80%) . Topping the list of juicy fruits and vegetables are lettuce, squash and watermelon (95%), tomatoes and broccoli (92%) and strawberries and peaches (90%).

    A common serving of the following foods contributes about 8 ounces of fluids:
    * Spaghetti with meat sauce
    * Oatmeal with blueberries
    * Chicken noodle soup
    * Low fat cottage cheese with pineapple

    Soups and foods with broth or cereals with milk are other great options. 

    Hopefully with these ideas you might find it easier than you thought to fit in
    fluids into your daily routine.
    Good eating!

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    Question: What is the best way to exercise when there is limited access to a gym and I suffer from MS fatigue?
    Answer:

    Question submitted by John Francis, 1999 CAN DO Program Graduate & Fundraiser 

    Occupational Therapist’s Response
    Ann Mullinix, OTR/L
    Can Do MS Programs Consultant

    Occupational therapy’s main goal is to keep people performing the activities that are important to them, modifying or adapting as needed. When fatigue is a roadblock, we instruct strategies to overcome the barriers, allowing more success and accomplishment.  We all know how important exercise is for our overall health and wellness, and it is an important ingredient to also fight fatigue.  Making exercise a priority is essential for fatigue management!

    • One of the first steps and most important in preventing or lessoning fatigue is to schedule your daily routine.  Exercise during the time of day when you have the most energy.  Are you able to exercise in the convenience of your home, watching a video of seated aerobics, use an arm exercise bike, or perform strengthening exercises given to you by a licensed therapist or from a CAN DO Program? Exercise can occur in many different ways. If we let go of some traditional ideas of exercise, and realize performing chair push ups or moving arms at or above heart level for a 30 second to 1 minute period of time, can get the heart beating, blood pumping and feel good.  The National MS Society and your local chapter have  resources for local exercise classes and videos for home.
    • If you have access to a class, make sure it is a good time for you. Choose a time that will not be stressful to travel to (stress adds to fatigue and traveling takes energy).
    • Make sure you take a look at your expectations of exercise.  Are you exercising for a too long period of time?  Trying to do it too many days of the week?  A trained therapist can create a program for you to adjust to your level of function.
    • For some people, heat can be an issue when trying to exercise, and wearing a cooling vest, or having a cool cloth can help keep your temperature down.
    • Having a partner in exercise can help us stick to our goals or routine by keeping us motivated, make it more enjoyable and fun, and also can assist with some movements.
    • Make sure exercise is engaging for you, and that you are accepting of where you are at; with what your body is allowing you to do that day. Frustration only zaps our energy, and makes us feel defeated.
    • After exercise, rest.  Allowing for rest breaks in your daily routine, 20-30 minutes, can re-energize and prevent fatigue from taking control.
    • Being open to change, modifying your exercise routine, simplifying yet not compromising the effects for your health, these are important strategies to not let fatigue interfere with your goals of exercise.

    Neurologist’s Response
    Barbara Giesser, MD
    Can Do MS Programs Consultant
     

    People living with multiple sclerosis who experience disease progression resulting in limited mobility are at risk for some complications. They include deconditioning, decreased cardiovascular function, bone loss (osteoporosis) and blood clots. Because of this, it is important for you to try to exercise as much as is possible.

    For those individuals who cannot use their legs, you can participate in aerobic exercise with a hand cycle. Standing and weight bearing is also exercise, and for you since you cannot stand unaided, this may be accomplished with a standing frame. Stretching is also important to decrease spasticity, prevent contractures and maintain flexibility, and may be done with a helper, if you cannot do it independently.
     
    Physical Therapist’s Response
    Mandy Rohrig, PT
    Can Do MS Programs Consultant

    First, I would encourage you to get connected with a rehabilitation specialist (Physical Therapist or Occupational Therapist) who can help you prioritize exercises of greatest value, so that you are not exerting unnecessary energy on activities that are not providing you benefits to your overall function.  With your therapist, I would encourage you to set realistic goals so you know what you are working towards and why you are working towards it.  Having goals improves adherence to the exercise program, making it more likely for you to be successful!

    Often it is thought that all exercise has to occur during 1 session.  However, considering that fatigue is a significant issue for you, you may find it beneficial to complete smaller, incremental bouts of exercise intermittently throughout the day.  For example, flexibility exercises with a support partner when it is convenient for him/her in the evenings and strengthening activities for the arms in the morning when you may be less fatigued.  If you are unable to get to a gym and do require some assistance to effectively complete exercise, consider discussing with your health care team about resources that could come into your home to help with exercise.  For example, a rehabilitation professional could instruct a college student or physical therapy student how to properly help you with exercises. 

    Since you use a power wheelchair for primary mobility, it becomes increasingly important to have a consistent flexibility routine.  Prolonged sitting can exacerbate muscle tightness and spasticity.  Consider referring to the National MS Society for a partner stretching manual; also, www.mymsyoga.com is a nice resource for adaptive yoga poses.  Remember, these poses can be adapted even more for you in a seated or laying down position!  I would also strongly encourage you to adapt a consistent aerobic exercise routine.  Arm bikes or pedal exercisers can be purchased for around $30-$80 and can easily sit on a table.  Strengthening activities for the arms can be completed with soup cans or elastic bands.  Lastly, consider regular standing with assistance from walkers or standing frames.  Regular standing is beneficial for muscle strength and flexibility as well as esteem.  Consider the Multiple Sclerosis Association of America or National MS Society for assistance for funding of exercise equipment and discuss your needs with your health care team as insurance may help, too.

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    Formerly The Heuga Center for Multiple Sclerosis | Founded by Jimmie Heuga

    A national nonprofit organization, Can Do MS is a leading provider of innovative lifestyle empowerment programs
    that empower people with MS and their support partners to transform and improve their quality of life.