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 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 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 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.

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 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 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.