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.

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
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. 

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. 

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/.    

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.

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.”

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

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!

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.”

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. 

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.

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.

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.

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.

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.

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.

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!

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.