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Special Expanded Issue • Exercise to Improve Mobility
Published by the Multiple Sclerosis
Symptom Management Update
Association of America
Douglas G. Franklin
By Diana M. Schneider, Ph.D . 3 This expanded cover story gives an overview Gary Wallace, CPA
of the strategies and agents used to manage Vice President of Finance & Administration the symptoms of MS.
Robert Rapp
Vice President of Programs & Evaluation
Bruce Makous
Vice President of Development
Up Front By Douglas G. Franklin. 2
Andrea L. Griesé
MSAA's president and CEO notes topics of importance Vice President of Communications & Mktg.
to the MS community.
Jack Burks, MD
Chief Medical Officer
Ask the Doctor By Jack Burks, MD . 46
MSAA's chief medical officer answers questions sent in by readers.
MSAA Board of Directors
Eric Simons, Chair
Research News By Susan Wells Courtney. 48
Robert J. Reichenbach, Treasurer
Updates are provided on drugs in clinical trials, FDA approvals Thomas J. Vassallo, Secretary
Jeri Canter, RPH
and applications, as well as recent study findings.
Annette M. Howard, MD
Joseph R. King
Program Notes By Peter Damiri . 50
I. Ross Maclean
The benefits of MSAA's Networking Program are highlighted, along with John McCorry
the announcement of a free DVD set with two MSAA video programs.
Robert Manley
William Saunders
Thoughts about Giving By Bruce Makous . 52
MSAA's generous contributors, gift annuities, and charitable IRAs.
The Motivator Staff
Andrea L. Griesé, Editor & Advertising Manager
Symptom Awareness By Patricia G. Provance, PT, MSCS . 56
Susan W. Courtney, Sr. Writer & Creative Dir.
This second article in a series of three provides important information Amanda Bednar, Contributing WriterPeter Damiri, Contributing Writer and strategies for improving mobility through exercise.
John Masino, Contributing Writer Stories to Inspire By Sophia and Michael Crisomia . 62
MSAA National Headquarters
Second-grader Sophia writes an award-winning paper on helping 706 Haddonfield RoadCherry Hill, New Jersey 08002 her dad with MS.
Spread the Word . 64
Three informative books from MSAA's Lending Library are featured.
The Motivator's purpose is to inform and The Multiple Sclerosis Association educate those with MS and their families.
of America's mission is to enrich MSAA does not endorse or recommend the quality of life for everyone any specific products, services, therapies, affected by multiple sclerosis.
or activities mentioned in articles oradvertisements that appear in The Motivator.
MSAA, its staff, and those affiliated with MSAA strives to provide useful, up-to-date information on matters of concern to the writing of this publication cannot be MS patients and their families. This material is intended for general informational held responsible for any unintentional errors.
purposes only, and it does not constitute medical advice. You should not use theinformation presented as a means of diagnosis or for determining treatment.
For diagnosis and treatment options, you are urged to consult your physician.
Copyright Multiple Sclerosis Association of America, 2009. All rights reserved.
No part of this publication may be reproduced, stored in a retrieval system, or A portion of this magazine has
transmitted in any form or by any means, electronic, mechanical, photocopying, been printed on recycled paper
recording, or otherwise, without prior written permission from MSAA.
using soy-based ink.
By Douglas G. Franklin
MSAA President and CEO
t the same time that this issue of The Motivator is beingprinted and mailed, MSAA is hosting several public educa- ness Month," which occurs in March of each year. I encourage you
to visit our website, www.msassociation.org, to learn about events
in your area – not only in March, but throughout the year. While on
our site, please take a moment to view one of our free educational
videos in our MSi video library, read one of our award-winning pub-
Douglas G. Franklin lications, or look at the many volunteer opportunities available.
Also in March, I am traveling with six other members of the MS Coalition (MSC) to the National Multiple Sclerosis Society (NMSS)Public Policy Conference in Washington, DC. This conference pro-vides an excellent opportunity for so many of us to gather in one room and discuss the issues facing everyone af- "MSAA will continue to work
fected by MS. Our three days of meetings cul-minate in a march to "The Hill," where we tirelessly toward fulfilling
hope to again shine a light on the needs of the our mission to enrich the
MS community to members of Congress.
quality of life for everyone
I would also like to note that these are affected by MS, especially
challenging economic times for all of us, and at a time when our clients
we are inspired by the degree of support may be in greatest need of
MSAA's donors and clients have shown. Please know that we will continue to work tirelesslytoward fulfilling our mission to enrich the qual- ity of life for everyone affected by MS, especially at a time when ourclients may be in greatest need of our assistance. N Doug Franklin joined MSAA as President & CEO in 1999. He has a distinguished career in nonprofit leadership and is a former national trainerin strategic planning for the Peter Drucker Foundation. A published interna-tional expert in social marketing and corporate social investment, he is agraduate of four universities. He currently serves on the National Board of the Key Philanthropic Organizations Committee of the American Society of Association Executives;on the Executive Committee of Health First – America's Charities Board inWashington, DC; and as President of the Multiple Sclerosis Coalition. A comprehensive overview of strategies and medicationsused to manage MS symptoms, along with initial findingson many experimental treatments presently being studied Written by Diana M. Schneider, PhD Edited by Susan Wells Courtney Reviewed by Jack Burks, MD and Randall T. Schapiro, MD ased on the positive review to the The information provided is based on a "MS Research Update" articles that wide range of sources, including the exten- 2008 issues of The Motivator, this article ex- ment, a review of ongoing clinical trials, and pands the coverage of MS management to papers presented at major national and inter- discuss the second arm of the MS treatment national meetings dedicated to neurologic spectrum, the management of the many conditions and MS. These include the an- symptoms of the disease. Although most of nual meetings of the American Academy of the media attention given to MS focuses on Neurology (AAN), the Consortium of Multi- the disease modifying agents, many of the ple Sclerosis Centers (CMSC), and the symptoms of MS can and should be man- American and European Committees for aged effectively. The article is organized by Treatment and Research in Multiple Sclerosis symptom, and discusses both non-pharma- (ACTRIMS and ECTRIMS).
cologic and pharmacologic approaches. For Editor's note: MSAA does not endorse or
each medication, we have provided basic in- recommend any specific products or thera- formation on usage, dose, and effect. This is pies. Readers are advised to consult their not a complete list and not all studies and physician before making any changes to their their research are included.
medication, diet, exercise, or other regimen.
SYMPTOM MANAGEMENT UPDATE
Many – even most – of the medications used to Multiple sclerosis (MS) manage the symptoms of MS may be associated with a were first developed for use wide variety of symptoms, in other conditions, or the which can occur in almost same symptom in people any combination and vary who do not have MS. When widely among individuals.
a drug has been approved by These symptoms are man- the United States' Food and aged with both rehabilita- Drug Administration (FDA) tion strategies – including for use in one condition, physical and occupational physicians may use it on an therapy – and a range of "off-label" basis in other sit- uations, whose symptoms Many people with MS may resemble that of the one take multiple medications, for which the drug was orig- and it is important that any inally approved. Because physician prescribing any new drug know FDA approval includes a detailed review of ALL of the medications you are currently safety and reliability testing, the physician taking. This is especially important for can be reasonably confident that the side ef- those drugs that have either a depressant fects of the drugs are well known.
or stimulant effect on the central nervous We note recommended dosages for drugs system (CNS). Such depressants include wherever guidelines exist, although each in- the benzodiazepines and other tranquilizers, dividual responds differently and optimal sedatives, prescription medications used dosages may be outside this range depending for pain, antihistamines, and alcohol.
on a variety of factors. In the case of many Stimulants include drugs used to manage drugs used off-label, the dosage may be dif- ferent than that used for the original condi- Some drugs are used to manage more tion for which the drug was approved, and than one symptom. For example, some anti- will be adjusted for each individual to maxi- depressants are also effective in managing fa- mize therapeutic benefit and minimize side tigue, and a number of agents originally developed as anti-seizure medications are All drugs have side effects, and it can be helpful in managing pain and spasticity. For difficult to determine the specific cause of these multi-use agents, we have included the any new side effect to a specific agent if you drug under its major indication, and cross- are taking multiple medications. Many of the referenced it as appropriate.
drugs used to treat MS have side effects that include dizziness, sleepiness, fatigue and they have the potential to interact with weakness, confusion, and gastrointestinal medications that you may be taking. Don't disorders. Most of these symptoms disappear begin any program or supplement without as your body becomes used to the medica- first discussing with your physician or nurse tions. However, report any sudden changes whether the therapy might affect your MS in your physical or psychological health to adversely or interact with your current your physician to rule out an un- usually severe effect of a new In the pages to follow are Just as the
the most commonly reported In most cases, medica- symptoms of MS
symptoms of MS, along tions used to treat any differ from one person
with the different strategies symptom of MS should not to another, how an
used in treating these be discontinued abruptly.
symptoms. Just as the individual reacts to a
These medications are usu- symptoms of MS differ certain treatment will
ally tapered off gradually, as from one person to another, differ from person to
indicated by your healthcare how an individual reacts to a provider, and some drugs may person as well.
certain treatment will differ have severe side effects if suddenly from person to person as well.
stopped. Please consult a physician be- Often a physician will need to try dif- fore making any change to your medications.
ferent therapies, dosages, and even combina- In the event of a severe or allergic reaction to tions, before finding the treatment plan best a drug, contact a medical professional or seek suited for a specific patient. The following emergency help immediately.
information is not to be used to determinetreatment, but rather to inform readers of the A Word about Complementary and
different treatment strategies available. As Alternative Medicine (CAM)
noted earlier, MSAA does not endorse or rec- The term "CAM" can be broadly defined ommend any specific products or therapies.
as therapies that are somewhat outside of the And as always, please consult a physician be- medical mainstream, and used to manage fore making any changes to your treatment various symptoms or illnesses. Some, such as acupuncture, have been the subject of At the conclusion of this listing is a page major studies that have shown a positive ef- of resources for more information. This in- fect on specific symptoms. Others, such as cludes books, videos, and MSAA publica- tai chi, yoga, and meditation, are generally tions. Readers looking for more information beneficial to many people, not just those or support are also encouraged to speak with with MS. Still others, including a wide vari- one of MSAA's Helpline consultants by call- ety of herbs, should be used with caution as ing (800) 532-7667.
SYMPTOM MANAGEMENT UPDATE
SECTION 1: FATIGUE
Fatigue is one of the most common symptoms of MS. The term is generally used torefer to a "lassitude" characterized by an overwhelming sleepiness that often comeson suddenly. A number of strategies and medications may be helpful.
Energy conservation
You may be able to see a pattern to your fatigue. For example, many people find that their fa-
tigue is at its worst in the afternoon. You can learn to plan your activities to take advantage of
those times when you tend to have the most energy, and to pace your activities to allow for rest
periods. An occupational therapist can help you conserve your energy by balancing activity and
rest, so that you are able to enjoy the things you most want to do.
Cooling
Because many people with MS are heat-sensitive and find that their fatigue is increased in hot
weather or in warm indoor environments, a variety of cooling techniques have been found use-
ful. These include swimming in cool water, taking cool drinks on warm days, using air condi-
tioning, and using cooling apparel or other accessories. MSAA has a Cooling Equipment
Distribution Program, which provides various types of apparel (such as vests, neck wraps, and
wristbands) to individuals who qualify. These types of products may also be purchased through
various retailers.
Manage Secondary Causes
Fatigue can result from a variety of metabolic and hormonal conditions, sleep deprivation, de-
pression and anxiety, and a variety of medications. It is important that your health provider ad-
dress these problems with a comprehensive checkup if you are experiencing fatigue. Stress
management techniques such as meditation may be helpful in managing fatigue. Because de-
conditioning, contributes to fatigue, exercise – especially aerobic exercise in moderation – may
also be helpful in decreasing fatigue.
A number of drugs have been used effectively to manage fatigue. Many of them were first de-veloped to treat other disorders such as alertness or depression.
Provigil® (modafinil)
This is an oral medication whose usual dose is 100 to 200 mg daily, although dosages up to 400
mg are sometimes needed. It should be taken early in the day to minimize sleep disturbances.
This drug promotes wakefulness, and was originally developed to treat narcolepsy, a neurologic
condition associated with uncontrollable daytime sleepiness.
Reports of the drug's effectiveness in MS have been mixed. Its use in MS was first based on a2002 study from Ohio State University showing improvement in 65 patients with a dose of 200mg per day. A more recent randomized, placebo-controlled, double-blind study in Germany wasperformed in 121 patients who had a high baseline score on the Fatigue Severity Scale (FSS)and an Expanded Disability Status Scale (EDSS) score of less than 7. Initial evaluation of thedata showed significant improvement in fatigue, cognitive impairment, and walking. However,a study comparing modafinil to antidepressant therapy in 64 patients found that antidepres-sant treatment was more effective as measured by a number of test criteria.
Side effects most commonly seen are headaches, insomnia, nausea, and constipation.
Amantadine
This generic medication was previously available as Symmetrel®. This is an oral medication whose
usual dose is 100 to 200 mg daily. The drug should be taken early in the day to minimize sleep
disturbances.
Amantadine is an antiviral medication used to prevent or treat influenza; it has also been usedin Parkinson's disease. Its mechanism for relieving fatigue in some individuals with MS is un-known, although it may increase levels of the neurotransmitter dopamine in the brain.
Side effects include rashes, dizziness or lightheadedness, insomnia, nausea, and constipation.
Ritalin® (methylphenidate)
This is an oral medication whose usual dose is 10 to 60 mg daily, usually taken 30 to 45 min-
utes before eating – or as your physician directs. Because it may cause difficulty sleeping, it is
recommended that you take your last dose before 6:00 pm.
Methylphenidate was originally developed as a treatment for attention deficit disorder, and hasalso been used to manage narcolepsy.
SYMPTOM MANAGEMENT UPDATE
A Phase I trial in 2003-2005 enrolled 80 patients with either RRMS or SPMS. It evaluated theeffect of methylphenidate on cognition, not fatigue, but the link between the two supports itsuse for fatigue.
Side effects include nausea, dizziness, insomnia, severe or persistent headache, high bloodpressure, and tachycardia (rapid heart rate); it should not be taken by individuals with seriousheart problems.
Dexedrine® (dextroamphetamine)
This is an oral medication whose usual dose is 5 to 40 mg daily. This is a stimulant that has
been used to improve wakefulness, boost energy, and decrease fatigue and appetite.
Side effects are similar to Ritalin® and include nausea, dizziness, insomnia, constipation, highblood pressure, and rapid heart rate.
Cylert® (pemoline)
Pemoline was withdrawn from the United States' market in 2005 due to rare but severe liver
damage, resulting in death or liver transplant.
Selective Serotonin Reuptake Inhibitors (SSRIs)
including Zoloft® (sertraline), Paxil® (paroxetine), and Prozac® (fluoxetine)
SSRIs are antidepressants, and are discussed in the section on Depression (page 24); managing
the effects of depression may also alleviate symptoms of fatigue. These medications may need
to be taken for several weeks before seeing an effect.
Side effects include drowsiness, mouth dryness, headache, nausea, and sleep difficulties.
Caffeine
Caffeine taken as coffee, tea, or caffeinated soda, in moderation, can be helpful in managing
fatigue. Individuals should speak with their doctor about their intake of these beverages, to be
sure they are not exceeding levels of caffeine or sugar that are appropriate for them.
SYMPTOM MANAGEMENT UPDATE
SECTION 2: SPASTICITY
This common symptom of MS usually affects the muscles involved in walking andmaintaining upright posture. With normal muscle function, opposite muscles work inopposite directions, meaning that one muscle pulls while the other relaxes. Spasticityis a condition that occurs when opposite muscles both contract or relax at the sametime, causing an increase in muscle tone. This can often lead to muscle stiffness,muscle spasms, reduced joint mobility, and related discomfort. It also contributes tofatigue, because more energy is required to perform daily activities.
Manage Secondary Causes
Because spasticity may be worsened by a variety of other MS symptoms and non-MS-related con-
ditions, it is important that spasticity be managed as part of a comprehensive strategy. Com-
mon MS symptoms that contribute to an increase in spasticity include fatigue, stress, heat,
urinary tract and other infections, and pain. Therapies designed to relieve these symptoms may
result in significant improvement in spasticity.
Stretching and Range of Motion Exercises
A physical therapist can develop a specific stretching and range of motion (ROM) exercise pro-
gram for your specific issues. Aquatic exercise may also be helpful.
Orthotics and Walking Aids
Simple devices such as an ankle-foot orthosis (AFO) may help walking by relieving the effects
of foot-drop and by reducing spasticity.
A variety of pharmacologic agents can be helpful in managing spasticity, some of which areused "off label." This means that they have been approved for use in other conditions, but havealso been shown (for example) to be effective in spasticity management for individuals with MS,despite not being specifically approved by the FDA for this purpose. Optimal management issometimes achieved by combining several medications, which has the benefit of reduced sideeffects.
Baclofen (formerly available as Lioresal®)
This is an oral medication whose escalating dose is usually begun at 5 mg daily, with a typical
effective dose of 30 to 90 mg daily; some individuals may require higher doses. Most doctors
start with a low dose and increase it gradually. Discontinuation of the drug is also done by grad-
ually lowering the dose to avoid seizures. This is the most commonly prescribed drug used to
manage spasticity, and most people with MS respond well to it.
Side effects include drowsiness, dry mouth, and lightheadedness. Again, the drug should not bestopped abruptly, as seizures, hallucinations, and/or agitation may result.
Zanaflex® tablets and Zanaflex Capsules® (tizanidine hydrochloride)
This oral medication is available as tablets or capsules, however, these have slightly different
formulations from each other and from the generic versions, so you should not switch without
consulting your physician. The starting dose is usually 2 to 4 mg daily, gradually increased to a
maximum of 36 mg daily. It is particularly useful for nighttime spasticity, and is often combined
with baclofen.
This is a short-acting drug. Because it reaches maximum effectiveness in 1 to 2 hours, and lastsfor a maximum of 6 hours, its dosing schedule needs to be carefully monitored. Clinical trialshave demonstrated safety and efficacy. A preliminary study suggests that 12 mg tizanidine takensublingually (under the tongue, for rapid absorption) just before bedtime, results in a statisti-cally and clinically significant reduction in next-day spasticity (this type of administration hasnot yet been approved).
Side effects may include sedation, low blood pressure, weakness, constipation, and dry mouth.
Valium® (diazepam)
This is an oral medication in tablet form, with initial doses of 2 to 5 mg that may be increased as
needed. The sedative effects of diazepam and other anti-anxiety medications make it especially
helpful for nighttime use; it is not recommended for daytime use because of its sedative properties.
Side effects include drowsiness, dizziness, lightheadedness, low blood pressure, and shortnessof breath.
Klonopin® (clonazepam)
This is an oral medication in tablet form, whose usual dose is 0.5 to 1 mg. Clonazepam is chem-
ically related to diazepam, and is used in MS to treat tremor and pain as well as spasticity. Be-
cause it is sedating, it is most commonly used at night.
Side effects include dizziness, lightheadedness, constipation or diarrhea, mouth dryness, andrapid heartbeat.
SYMPTOM MANAGEMENT UPDATE
Dantrium® (dantrolene sodium)
This is an oral medication with a usual dose of 10 to 20 mg. Dantrolene acts directly on mus-
cles to relieve cramping, and may be helpful in some situations. However, its use is limited be-
cause it can induce weakness, even at low levels.
Side effects most commonly seen are weakness, unusual tiredness, drowsiness, nausea, diarrheaor constipation, sleep difficulties, and headache. Periodic blood tests to evaluate liver functionare recommended.
Neurontin® (gabapentin)
This is an oral medication available in tablet form. The dose may vary widely, from 100 to 1,600
mg per day. Gabapentin and other chemically-related anti-seizure medications have anti-spas-
ticity properties and are effective in some people. They are frequently used as "add-on" drugs
to enhance the effects of other medications such as baclofen.
Additionally, gabapentin may be a useful treatment for dysesthesia (a burning sensation alongthe nerve) and other painful conditions that may be associated with MS.
Side effects include fatigue, sleepiness, dizziness, and balance problems.
Tegretol® (carbamazepine)
This is an oral medication in tablet form. The dose normally ranges from 400 to 1,000 mg per
day. Carbamazepine was also originally developed as an anti-seizure medication. It is especially
useful for flexor spasms of the extremities. (Flexor spasms usually affect the lower limbs, often
worsening at night, and may be very painful.)
This medication is also used to manage trigeminal neuralgia (sudden and brief periods of se-vere facial pain, occurring on one side of the face), as well as other dysesthesias.
Side effects include dizziness, drowsiness, nausea, and balance problems.
Keppra® (levetiracetam)
This is another oral anti-seizure medication that has been found useful for some of the symptoms
of MS. A 2003 study of 12 patients at the University of Texas showed a significant improvement
in spasticity following treatment with levetiracetam. Three of the 12 also reported improvement
in neuropathic pain. The drug was well tolerated; large, well-controlled trials are needed to con-
firm these findings. Until then, this will not be considered a routine treatment.
Side effects may include sleepiness and dizziness.
Requip® (ropinirole)
This is an oral medication in tablet form. Ropinirole was developed for use in Parkinson's disease,
and is also effective for restless legs syndrome. This may explain its usefulness as a treatment
for painful nighttime spasticity.
Side effects include nausea, dizziness, drowsiness or trouble sleeping, constipation, and headache.
PHARMACEUTICAL THROUGH PHYSICAL INTERVENTIONS
Botox® and Myobloc® (botulinum toxin)
Botulinum toxin is administered by injection into a muscle (or muscles) that is involved in se-
vere spasticity, and has almost completely replaced the phenol blocks used earlier for spastic-
ity. It temporarily blocks the nerves that lead to specific muscles, for a period of months. The
drug should only be administered by an experienced physician or other healthcare provider.
Side effects may include unexpected weakness.
Baclofen Pump (Intrathecal Baclofen)
When spasticity is severe and does not respond to oral medications, administration of baclofen
directly to the spinal cord is often effective. This involves the placement of a tube into the
spinal canal that is connected to a pump implanted under the skin. It decreases spasticity with
a much lower dose of baclofen than would be needed orally, and with a much lower incidence
of side effects. The most frequent complications of this therapy are catheter malfunction and
infections, with a higher incidence of malfunction in people who are ambulatory.
Side effects are the same as those for oral baclofen (details given on page 11), although they areless common because the dose is significantly lower.
In rare instances, when spasticity cannot be resolved through standard pharmacologic man-agement strategies, irreversible surgical procedures may be considered. This involves cuttingnerves to specific muscles that do not respond to the procedures discussed above.
Phone Number Change for Women's Resource
In our Fall 2008 issue of The Motivator, our cover story on Women with MS highlighted
some helpful resources on page 20. The fifth listing, Ethel Louise Armstrong Foundation,
has a new phone number. This foundation may now be reached by calling (805) 252-7983.
SYMPTOM MANAGEMENT UPDATE
SECTION 3: WEAKNESS
Weakness is a common symptom in MS, resulting from the demyelination of neuronsin the brain and spinal cord that control the muscles. It most commonly affects thosemuscles involved in walking.
Exercise
An exercise program that involves extensive work with weights is not generally effective in re-
ducing weakness, although a general exercise program prescribed by a physical therapist or
other healthcare provider can lessen weakness by improving your overall level of conditioning. It
should incorporate passive exercises that include range of motion and stretching, as well as ac-
tive exercises tailored to the individual. These often include progressive-resistance exercises and
aerobic exercises to whatever extent safely and comfortably possible for the individual patient.
Drugs that reduce spasticity and fatigue may also help to reduce weakness.
Fampridine SR® (long-acting fampridine, 4-aminopyridine)
When and if it is approved by the FDA, this oral medication has been studied at a dose of 10 mg,
once to twice daily.
This drug may improve communication between damaged neurons to increase neurologic func-tion, as indicated by an improvement in walking speed and strength.
A 14-week, Phase III, multi-center trial in people with MS found that approximately 35 percentof the treated group showed consistent improvement in walking speed, versus just over 8 percentof the placebo group. The treated group also experienced an increase in strength. Patients whoresponded to the drug also reported feeling less disabled in activities that required mobility.
The favorable results of a second phase III study (sponsored by Acorda Therapeutics), which eval-uated the safety, tolerability, and activity in individuals who participated in the original trial, werepresented in the fall of 2008. An FDA application was submitted in January 2009, and is nowbeing reviewed for possible approval.
Side effects included dizziness, falls, back pain, insomnia, fatigue, nausea, and balance problems.
SECTION 4: BALANCE
Balance difficulties are common in MS, and can result from a combination of:MS lesions in various areas of the brain that are involved in the control of movement;the presence of weakness, tremor, and fatigue in the muscles involved in walking; andby symptoms such as visual problems and numbness.
Treating other symptoms that affect balance, such as spasticity, weakness, and tremor, can beof help. Balance can also worsen from being "out of condition," and a physical therapist withexperience in MS can design an exercise program and teach helpful techniques. Hippotherapy(therapeutic horseback riding) may improve balance as well. Some individuals may benefit fromRitalin® (methylphenidate), which is a medication developed for attention deficit disorder. Theusual dose for this oral medication is 10 to 60 mg daily, normally taken 30 to 45 minutes be-fore eating – or as your physician directs. Because it may cause difficulty sleeping, it is recom-mended that you take your last dose before 6:00 pm.
SYMPTOM MANAGEMENT UPDATE
SECTION 5: DIZZINESS AND VERTIGO
Vertigo, or the sensation of "spinning," may occur as the result of lesions in the brainareas that coordinate balance.
Physical Therapy
If changes in head position are a component of vertigo, a physical therapist can develop an ex-
ercise program that will help to reduce the effects of these positional changes.
Antihistamines
including Benadryl® (diphenhydramine), Antivert® (meclizine), and Dramamine® (dimenhydrinate)
Mild vertigo may be controlled with these agents, originally used to treat vertigo associated with
motion sickness. Dose is usually 25-50 mg every 8 hours.
Side effects include drowsiness, blurred vision, constipation, and dryness of the mouth.
Scopolamine Transdermal Patch
This is an anticholinergic agent, meaning that it acts on neurons that use acetylcholine as their
transmitter. One of its main uses is the treatment of motion sickness and its associated vertigo.
Side effects are similar to the antihistamines, listed above.
Benzodiazepines
including Valium® (diazepam), Klonopin® (clonazepam), and Serax® (oxazepam)
These medications decrease activity in the areas of the nervous system that control the inner ear.
Please refer to the Spasticity and Anxiety sections (pages 11, 26) for details on these drugs.
SECTION 6: TREMOR
Tremor is an involuntary, rhythmic shaking movement of the muscles. It is most com-monly due to the loss of myelin on axons in the central nervous system pathways thatcoordinate muscle movement and balance. It can affect many parts of the body, and isone of the most frustrating symptoms of MS.
Physical or occupational therapists may be able to reduce the effects of tremor by teachingspecific positions for some activities or by balance and coordination exercises. These might in-clude patterning, which involves repeating a series of movements related to an activity such aseating, until those movements essentially become automatic and can be performed without ac-companying tremor. Rehabilitation therapists may also teach exercises that focus on stimulat-ing the balance centers of the brain.
Weighting involves using utensils and other devices that are modified so that the extra weighthelps to stabilize arm tremors.
Atarax®, Vistaril® (hydroxyzine)
These oral antihistamines may be useful for minor tremors that are made worse by stress.
Klonopin® (clonazepam) and Buspar® (buspirone)
These are oral medications originally developed as anti-anxiety agents. Clonazepam may help
tremor by causing sedation. Buspirone primarily is not a sedating or habit-forming drug. At a
dose of 5 to 10 mg, three to four times daily, buspirone may help with tremor and is well toler-
ated. Please refer to pages 11 and 26 for details on clonazepam.
Side effects include oversedation (with clonazepam).
Neurontin® (gabapentin)
Please refer to the Spasticity section (page 12) for details on this oral medication.
Inderal® (propranolol)
This oral medication is a beta-blocker, originally developed as a medication to regulate heart
rate. The initial dose is 80 mg, and it is increased slowly until an effective dose is reached.
SYMPTOM MANAGEMENT UPDATE
It provides modest relief for some tremor.
Side effects include abnormal heartbeats, lightheadedness, gastrointestinal symptoms, and confusion.
Zofran® (ondansetron)
This is an oral medication originally developed as an anti-nausea drug for use with cancer
chemotherapy. The usual dose is 4 to 8 mg, taken 3 to 4 times per day, and may produce a de-
crease in tremor in some patients. This medication has few side effects.
Keppra® (levetiracetam)
This is an oral medication in tablet form. It was originally developed as an anti-seizure medication.
Small Italian and British pilot studies were encouraging, but more research is needed. For more
information, please see the Spasticity section (page 12).
Side effects include sedation, weakness, and dizziness.
Mysoline® (primidone)
This oral medication was developed as an anti-seizure drug. It has some anti-tremor effects
when used in lower doses than those prescribed for epilepsy. The initial dose is 50 mg, which
is increased gradually.
Side effects include significant sedation.
Laniazid®, Nydrazid® (isoniazid)
This oral medication was developed to treat or prevent tuberculosis. It is effective for certain
types of tremor; its mechanism of action is unknown.
Side effects may include nervousness, sleep difficulties, headache, and nausea.
Thalamotomy and Deep Brain Stimulation
Because tremor results from damage to axons in an area of the brain called the "thalamus," it
is sometimes treated surgically. One technique, known as a thalamotomy, destroys a section of
the thalamus. Another technique, deep brain stimulation, was originally developed to treat the
tremor associated with Parkinson's disease. Instead of destroying the area of the thalamus that
causes tremor, an electrode is implanted in the region, and connects a wire lead to a control de-
vice implanted under the skin. Activating the device sends impulses into the thalamus, disrupt-
ing the signals that cause tremor.
SYMPTOM MANAGEMENT UPDATE
SECTION 7: PAIN
MS may be associated with a variety of symptoms characterized as "pain." In additionto the types of pain experienced by everyone – with or without MS – some types ofpain are directly related to the MS process itself. Other pain may be the result of thephysical effects of MS, such as the stress on joints produced by problems such asimbalances associated with walking difficulties. More than 50 percent of all peoplewith MS will experience pain in one form or another during the course of their dis-ease. A recent Canadian study indicated that pain is the second most common symp-tom of MS, with fatigue being the most common.
Dysesthesias are types of pain that are experienced as a burning or aching sensation. They arethe most common types of pain seen in MS. The most frequently prescribed drugs used to treatthis type of pain were originally developed as anti-seizure medications or antidepressants.
Anti-Seizure Agents
including Neurontin® (gabapentin), Tegretol® (carbamazepam), and Keppra® (levetiracetam)
Please refer to the Spasticity section (page 12) for details on these oral medications.
Anti-Anxiety Agents
including Cymbalta ® (duloxetine hydrochloride), Valium® (diazepam), and Klonopin® (clonazepam)
Please refer to the Spasticity, Depression, and Anxiety sections (pages 11, 25, 26) for details on
these oral medications.
Tricyclic Antidepressants
including Elavil® (amitriptyline), Pamelor® (nortriptyline), and others
Please refer to the Depression section (page 25) for details on these oral medications.
Dilantin® (phenytoin)
This is an oral medication in tablet form. The dose normally ranges from 100 to 400 mg per day.
Dilantin is an anti-seizure medication that is commonly used to manage the pain of trigeminal
neuralgia, but it may be helpful for other pain conditions as well.
Side effects include dizziness, drowsiness, and balance problems.
Lyrica® (pregabalin)
This is an oral medication in tablet form. The dose normally ranges from 150 to 600 mg per day.
This agent was approved by the FDA in 2004 for the treatment of neuropathic pain associatedwith diabetes, fibromyalgia, and certain types of seizures. It has not specifically been approvedfor MS, but has proven effective for many people.
Side effects include drowsiness, constipation, and balance problems.
B. TRIGEMINAL NEURALGIA
Trigeminal neuralgia is a "lightning-like" stabbing pain in the face. It is the result of damage tothe trigeminal nerve, which innervates (provides the nerve supply to) the side of the face.
Trigeminal neuralgia can usually be treated with medications such as anti-seizure agents.
Neurontin® (gabapentin), Tegretol® (carbamazepine), and Dilantin® (phenytoin)
Please refer to the Spasticity and Pain sections (pages 12, 20) for details on these anti-seizure
medications.
Surgical procedures to reduce pressure on the trigeminal nerve are possible in some situations.
C. LHERMITTE'S SIGN
Lhermitte's sign is a brief, stabbing pain that occurs when the neck is bent forward. It moves fromthe head down the spine, and usually lasts for less than a second. It may go away without spe-cific treatment, as inflammation in the spinal cord decreases with other types of treatment orsimply over time.
Soft neck collar
A soft neck collar is often used to prevent the forward movement that triggers the pain.
Medications such as anti-seizure drugs may help to prevent the pain. Pharmacalogic treatmentis usually accompanied by physical therapy.
SYMPTOM MANAGEMENT UPDATE
D. BACK AND OTHER MUSCULOSKELETAL PAIN
Back and other musculoskeletal pain in MS can have many causes, including spasticity. Pressure onthe body caused by immobility, incorrect use of mobility aids, or the struggle to compensate for gaitand balance problems may all contribute. An evaluation to pinpoint the source of the pain is essential.
A variety of strategies may prove helpful in managing musculoskeletal pain. These may includeheat, massage, ultrasound, physical therapy, and treatment for spasticity. A variety of relax-ation techniques have proved helpful, as have acupressure and acupuncture.
Tylenol® (acetaminophen), or non-steroidal anti-inflammatory drugs (NSAIDs) such as Advil®(ibuprofen), may be helpful in managing a variety of types of musculoskeletal pain. Individualstaking these pain relievers should check with their doctor and be sure to follow prescribing in-structions. Too much of these medications can cause serious side effects, including liver damage.
COMPLEMENTARY AND ALERNATIVE MEDICINE THERAPIES
Acupuncture
Acupuncture has been studied as a possible therapy for a number of MS symptoms. Pain is the
one symptom that has shown a consistent positive response to this approach, and it may be ef-
fective when provided by an experienced practitioner. The technique involves inserting and ma-
nipulating fine needles in specific points on the body. According to traditional Chinese medical
theory, acupuncture points are located along meridians through which chi (vital energy) flows.
There is no known anatomic basis for the existence of acupuncture points or meridians, but the
technique may work in certain specific situations.
Acupressure
Acupressure is essentially a variation of acupuncture, but involves applying physical pressure to
acupuncture points. As with acupuncture, the points to which pressure is applied may or may
not be in the same area of the body as the targeted symptom.
Guided Imagery
Guided imagery is a meditative process focused on self-healing, relaxation, and self-awareness.
It is a relaxation technique that is based on the concept that the mind and body function as a
single entity, and may help manage stress and reduce tension.
Biofeedback
Biofeedback involves measuring bodily functions such as blood pressure, heart rate, skin tem-
perature, sweat gland activity, and muscle tension. In theory, this ultimately allows you to in-
crease your conscious control of what are normally unconscious physiologic activities. By
providing you with information about physiologic functions that are normally not perceived at
a conscious level, it is believed by some to allow people to achieve control over these functions.
Yoga and Tai Chi
Both yoga and tai chi are based on traditional Asian medicine, and both have been shown to be
of significant value in managing MS by allowing individuals to increase strength, flexibility and
balance. Several excellent books and videos are available that can help people develop a pro-
gram that will assist in an overall management program for MS.
Cannabis
The use of cannabis (marijuana) is illegal in the United States and cannot be recommended.
Additionally, there have been reports of adverse cognitive effects on people with MS.
SYMPTOM MANAGEMENT UPDATE
SECTION 8: DEPRESSION
Depression is common in MS. It can be the result of difficult life situations or stresses,but may also occur from the MS disease process, because of damage to areas of thebrain that are involved in emotional expression and control. Additionally, depressioncan also be a side effect of various medications used in the management of other MSsymptoms.
Because of the wide-ranging issues that affect people with MS and can also contribute to de-pression, the effective results are usually obtained with a combination of "talk therapy," (throughsome type of counseling or therapy), pharmacologic agents, and exercise.
A wide variety of antidepressant medications are useful in managing depression associated withMS. Most of them appear to work by slowing the removal of specific neurotransmitters, thus in-creasing their activity because they stay in the system longer. This means that the chemicals thatmake us feel good remain in the body longer, and this positively affects mood. The two mainneurotransmitters affected by antidepressant medications are serotonin and norepinephrine.
These medications belong to a variety of subcategories, depending on the neurotransmitterthey affect.
SSRI antidepressants (Selective Serotonin Reuptake Inhibitors)
including Prozac® (fluoxetine), Zoloft® (sertraline), Paxil® (paroxetine), Celexa® (citalopram),
and Lexapro® (escitalopram)
This group of antidepressants was developed to treat general mental depression and panic dis-
orders, and has proved effective in treating depression and anxiety, as well as several other
symptoms of MS. SSRIs inhibit the reuptake of serotonin (a chemical produced within the body,
which is known to elevate mood), allowing it to remain in the body's system longer.
Side effects of this class of drugs include decreased sexual drive or ability, drowsiness, drymouth, headache, and weakness, as well as psychological symptoms that may include agitationand nervousness.
SRNI antidepressants (selective Serotonin and Norepinephrine Reuptake Inhibitors)
including Cymbalta® (duloxetine hydrochloride), Serzone® (nefazodone), Wellbutrin®
(bupropion), and Remeron® (mirtazapine)
These are oral medications in tablet form. With side effects similar to the SSRIs, SSRNIs are a
newer type of antidepressant and provide additional treatment options.
Side effects vary with the specific drug, but may include gastrointestinal problems, fatigue,sleepiness, drowsiness, and dizziness. Contact your healthcare provider if you experience anysudden emotional or behavioral changes while taking this medication.
Tricyclic Antidepressants
including Elavil® (amitriptyline), Tofranil® (imipramine), Pamelor (nortriptyline)
These are oral medications in tablet form. The dose normally ranges from 10 to 150 mg per day
(amitriptyline), 75 to 150 mg per day (imipramine), and 10 to 175 mg per day (nortriptyline).
Side effects include dry mouth, constipation, sexual problems, dizziness, and drowsiness.
SYMPTOM MANAGEMENT UPDATE
SECTION 9: ANXIETY
Anxiety is common in MS, and may be related to depression. In many cases, medica-tions used to treat depression will also alleviate symptoms of anxiety. A recent studyat the University of Washington indicated that about one-quarter of all people withMS experience anxiety, and most of them also experience depression.
As with depression, and because of the wide range of issues that can contribute to depression,the most effective results are usually obtained with a combination of "talk therapy" (counsel-ing) and pharmacologic agents.
A number of relaxation and therapeutic therapies can also be very helpful in reducing anxiety.
Among others, these include exercise, biofeedback, guided imagery, self hypnosis, yoga, tai chi,and massage.
Benzodiazepines
including Valium® (diazepam), Serax® (oxazepam), Ativan® (lorazepam), Klonopin®
(clonazepam), and Xanax® (alprazolam)
Valium was the first benzodiazepine approved by the FDA for the treatment of anxiety, and
most of the agents used to manage this symptom in MS are derivatives of this drug.
Doses vary depending on the specific molecular structure of the diazepam derivatives. All areuseful in treating anxiety and panic disorders, as well as the anxiety that is directly related todepression; these conditions are normally treated as a single entity. These drugs must be care-fully monitored as they may cause dependence.
Side effects include confusion, depression, drowsiness, insomnia, light-headedness or dizzi-ness, headache, urinary difficulties, and tremor. Habituation – a decrease in response after re-peated use – is a concern.
SECTION 10: SLEEP DISTURBANCES
Sleep problems are common in MS, and may be the result of a variety of symptomssuch as spasms, urinary frequency, depression, or anxiety, as well as medications usedto manage a variety of symptoms associated with the disease. This can lead to theproverbial "vicious cycle," in which symptoms disturb sleep, and the lack of neededsleep in turns worsens a variety of symptoms, such as fatigue.
A variety of strategies can help manage sleep problems.
Develop Good Sleep Habits
Some fairly simple changes can help enormously to ensure a good night's sleep. They include:
• Keep a regular schedule; go to bed and get up at the same time every day, including week- ends. This will help your body adjust to a normal sleep pattern.
• To minimize nighttime trips to the bathroom, don't drink a lot of fluids in the evening.
• Don't exercise in the evening; whatever your exercise program, do it earlier in the day.
Manage Other Symptoms that May be Contributing to Sleep Problems
Many symptoms of MS can affect sleep, including spasticity, pain, depression or anxiety, and
bladder and bowel issues. Addressing these problems can go a long way to improving your sleep.
Relaxation Techniques
There are many meditation tapes and other relaxation-oriented approaches to improving the
amount and quality of your sleep. Your nurse or other healthcare professional may be able to
guide you to strategies that may be effective.
Pharmacologic Management
Although the occasional use of sleep medications may be helpful, routine use of "sleeping pills"
should be avoided, as they lose their effectiveness quickly, are potentially addictive, and do
not provide a normal night's sleep. Over-the-counter Benadryl and Benadryl-containing prod-
ucts may be helpful, but should not be used on a regular basis. If sleep aids are needed, con-
sult your doctor for an optimal treatment plan. This will ensure the best rest possible using the
least amount of medication.
SYMPTOM MANAGEMENT UPDATE
SECTION 11: COGNITIVE FUNCTION
The term "cognition" refers to a group of mental processes that include functions suchas memory, decision making, and concentration, which is the ability to focus on specifictasks and planning. Since other symptoms of MS can affect concentration, and drugsused to treat some symptoms can affect how quickly thoughts may be processed, it isimportant that any cognitive symptoms be evaluated carefully in the overall context ofyour MS management. The relationship between fatigue and cognition is significant,and there is a clear association between feelings of tiredness, difficulty concentrating,and memory issues. For this reason, symptoms of cognitive difficulties are often im-proved by the strategies discussed in the Fatigue section, beginning on page 6.
COGNITIVE TESTING AND REHABILITATION
A baseline cognitive evaluation is important and can serve as the basis for a comprehensivemanagement strategy by identifying the areas of difficulty. This testing procedure is generallyadministered by a neuropsychologist or other specialist.
A variety of strategies have been designed to help improve cognitive function. These rangefrom keeping simple task lists, to planning how you use your time to take on more complextasks when you are at your best, to more advanced computerized programs designed to improvememory and other cognitive issues.
The results of a study on cognition were reported at the AAN's annual meeting in 2008. Thisstudy measured improvements in general memory, working memory, and processing speed inpeople who participated in a targeted cognitive rehabilitation program, compared to those whodid not participate in a program. The results suggested a clinically statistical improvement. Arecent study from Israel suggested that a computer-based cognitive training program (MindFit®)led to an improvement in memory skills in people with MS.
Disease Modifying Therapies
A number of studies suggest that the disease-modifying therapies (DMTs) delay or improve cog-
nitive problems. The approved DMTs for MS include: Avonex® (interferon beta 1-a); Betaseron®
(interferon beta 1-b); Rebif® (interferon beta 1-a); Copaxone® (glatiramer acetate); Novantrone®
(mitoxantrone); and Tysabri® (natalizumab).
Several drugs may be effective in reducing the cognitive symptoms of MS.
Anti-Fatigue Agents
including Provigil® (modafinil) and amantadine
Separating the effects of fatigue and cognition can often be difficult, but there is ample evi-
dence that fatigue worsens the effect of cognitive difficulties, and that fatigue-management
strategies are often effective in decreasing cognitive symptoms. Please see page 7 for details.
Aricept® (donepezil)
This is an oral medication in tablet form. The dose normally ranges from 5 to 10 mg per day.
Aricept® is one of a group of cholinesterase inhibitors that were originally developed for usein Alzheimer's disease. It prevents the breakdown of one of the main neurotransmitters in thebrain, acetylcholine, thus increasing its levels in the brain and improving the function of thoseneurons that are dependent on this sub-stance for normal functioning. Preliminarystudies suggest that they may improve A residential personal care home .
learning and memory.
MS trials using drugs for Alzheimer's disease esigned by those with MS
need more rigorous results before they cangain wider acceptance and are FDA-ap- for those with MS.
proved for the cognitive symptoms some-times experienced with MS. Several smallclinical trials have shown a modest improve-ment in memory as measured by test scores,and up to two-thirds of the participants re-ported improvement.
Side effects may include gastrointestinalproblems, painful or difficult urination,seizures, fatigue, or sleep difficulties.
Providing 24-hour care Other Alzheimer's disease treatments
Other pharmacologic agents approved for
treating Alzheimer's disease are used in some patients. The effects are usually not dramatic.
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SYMPTOM MANAGEMENT UPDATE
SECTION 12: BLADDER
Bladder problems are common in MS, and result from demyelination in the nervoussystem pathways that control the muscles of the bladder and the sphincters of theurinary tract. The three categories of bladder problems are usually referred to as"failure to store," "failure to empty," and a "combination" of the two. They can usu-ally be managed successfully, once the cause is identified.
A. FAILURE TO STORE
This problem results from a hyperactive or spastic bladder, and is the most common type of blad-der dysfunction in MS. Symptoms include increased urgency and frequency of urination, in-continence, and the need to urinate during the night (nocturia).
Dietary and Fluid Management
Changes in your diet combined with timing urination – rather than waiting to feel the urge – may
be effective. Your nurse or other healthcare provider can help you to develop an effective man-
agement plan. Meanwhile, don't restrict your water intake! Dehydration and constipation will
only add to your problems.
Ditropan® and Ditropan XL® (oxybutynin)
This medication may be taken orally, and it is also available through a patch, which is replaced
every 3 to 4 days. The dose for regular release is 5 mg two times per day; XL is 5 to 10 mg once
daily; and a new patch is usually applied two times per week. This medication decreases the spasms
associated with failure-to-store bladder problems, reducing urge and frequency of urination.
A study now recruiting participants, sponsored by Astellas Pharma Inc., will compare the ef-fects of oxybutynin against solifenacin (brand name: Vesicare®; please see individual listing onnext page for more information about this drug).
Side effects include dry mouth, constipation, headache, and blurred vision.
Detrol® and Detrol LA® (tolterodine tartrate)
This is an oral medication in tablet form. The dose ranges from 2 to 4 mg per day. It reduces
the frequency and severity of the bladder spasms that result in many of the symptoms associ-
ated with failure-to-store problems.
Side effects include dry mouth, headache, and gastrointestinal symptoms.
Vesicare® (solifenacin)
This is an oral medication in tablet form. The dose ranges from 5 to 10 mg per day.
As mentioned earlier, a study now recruiting participants, sponsored by Astellas Pharma Inc., willcompare the effects of oxybutynin against solifenacin in MS.
Side effects include dry mouth, constipation, and blurred vision.
Enablex® (darifenacin)
This is an oral medication in tablet form. The dose ranges from 7.5 to 15 mg per day. Its actions
are similar to those of Detrol® and Ditropan®.
Side effects include dry mouth, constipation, and blurred vision.
Levsinex® (hyoscyamine)
This is an oral medication in tablet form. The dose ranges from 1 to 2 mg per day.
Side effects include dry mouth and difficulty swallowing.
Flomax® (tamsulosin) and Other Antihistamines
This is an oral medication in capsule form. The dose ranges from 0.4 to 0.8 mg per day. Flomax®
was originally developed to treat enlargement of the prostate. It acts by relaxing the muscles
of the bladder.
Side effects include low blood pressure, dizziness, and sleepiness.
Hytrin® (terazosin); Minipress® (prozosin)
These are oral medications in tablet form. The dose for either drug is 1 mg once to twice daily.
These medications were developed to treat high blood pressure. They are also effective in re-
laxing the muscles of the bladder.
Side effects include dizziness, weakness, and nausea.
DDAVP (desmopressin)
This drug is administered as a nasal spray, as directed, and is also available as an oral formula-
tion. The nasal spray is usually taken once in the evening, as a treatment for nocturia (nighttime
urgency). The dose is one squirt (spray) or 0.2 mg (oral), both given at bedtime. Desmopressin
is a hormone that controls frequent urination by its action on the kidneys.
Side effects include runny or stuffy nose and headache.
Botulinum Toxin (Botox®)
Botox injections into the bladder wall and sphincters decreases spasticity and may permit in-
creased retention of urine. However, this technique is still somewhat experimental.
B. FAILURE TO EMPTY
This condition is the result of the muscles of the bladder being flaccid due to a loss of abilityfor the bladder muscles to adequately contract. Symptoms include urgency followed by diffi-culty in starting the stream of urine, incomplete emptying, and increased frequency of urina-tion – often the result of incomplete emptying.
Catheterization
The most common management strategy is intermittent catheterization, usually done every few
hours. In some cases, an indwelling catheter that remains in place for a period of time is needed,
especially in people with significant disability.
Pharmacologic Management
Medications are generally not effective for this type of bladder dysfunction. Urecholine has
been used by some doctors. The dose is usually 50 mg twice daily.
C. COMBINATION BLADDER DYSFUNCTION
As its name suggests, this problem results from a failure of the muscles of the urinary tract sys-tem to act together in a normal pattern, so that bladder contraction and the release of urineoccur together.
Catheterization
As with the failure-to-empty situation, intermittent catheterization or an indwelling catheter is
often effective.
SYMPTOM MANAGEMENT UPDATE
The medications noted earlier for use with failure-to-store difficulties, in combination withcatheterization, is often effective. Baclofen may also be of help to some patients; please referto the Spasticity section (page 11) for details on this drug.
D. BLADDER INFECTIONS
Bladder infections are relatively common in people with MS. They are treated with antibiotics,the most common of which are listed below. The specific antibiotic depends on the type of bac-teria causing the infection. Increasing the urine's acidity may reduce the risk of infection. Cran-berry juice in moderation is commonly used for this purpose.
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ministered either as a single dose twice a for MS – ideal
day or a double dose once a day.
for all ages
Side effects include dizziness, headache,and gastrointestinal symptoms.
. and many more
ways to help
Cipro® (ciprofloxacin)
This is an oral medication in tablet form.
Learn more at
The dose ranges from 500 to 1000 mg per or call (800) 532-7667, ext. 8
Side effects include dizziness and sleepiness.
SECTION 1 3: BOWEL
A significant percentage of people with MS develop bowel problems at some time inthe course of their MS. Constipation is fairly common for individuals with MS, and thisproblem may be ongoing or periodic in nature. Incontinence or diarrhea is far lesscommon with MS and is often temporary. Medications are sometimes a cause of bowelincontinence, and these can include antibiotics and even treatments used to relieveconstipation.
Constipation is the most common bowel problem in MS, and results from lesions in the nervoussystem that control the rate at which stool is passed through the bowel. This slowed movementresults in more water being absorbed, causing hard, dry stools. It can also occur in people wholimit their intake of fluids to minimize bladder problems, as the result of a lower activity level,and in some cases by medications taken to control other MS symptoms.
The management of constipation has three main components: diet – including at least 24 ouncesa day of water and 20-30 grams of fiber; a consistent bowel program; and the use of stool sof-teners or other substances that stimulate more rapid passage of stool through the bowels andincrease its bulk.
STOOL SOFTENERS
Stool softeners help to retain liquid in the stool to allow easier passage through the bowel.
Colace® (docusate)
This is an oral medication in softgel or tablet form. The usual dose is 1 to 2 softgels or tablets
each day, taken morning and/or evening.
Surfak®
This is an oral medication in pill form. The usual dose is 1 pill a day, most commonly taken in
the morning.
Chronulac®
This is an oral medication in syrup form. The usual dose is once or twice a day, in the morning
and/or evening. It is usually taken after meals, as its taste may be unpleasant.
SYMPTOM MANAGEMENT UPDATE
BuLK FORMERS
Bulk formers absorb liquid and swell to form soft, bulky stools. They increase both the bulk and
fluid content of stool, stimulating faster and easier passage. They should be taken with 1 to 2
glasses of water.
Metamucil® (psyllium hydrophilic mucilloid)
This is an oral medication in either gel capsule form taken with water or juice, or as a powder
mixed with water or juice, usually at bedtime.
Fibercon®
This is an oral medication in tablet form. The usual dose is 2 tablets, taken 2 to 4 times per day
with 8 ounces of liquid.
Citrucel®
This is an oral medication in powder form. The usual dose is 1 tablespoon, 2 to 3 times daily,
mixed into 8 ounces of water.
Fiberall®
This is an oral medication in chewable tablets, wafers, or powder. The usual dose is 1 to 3 times
daily with 8 ounces of water.
LAXATIVES; ORAL MEDICATIONS
This group includes over-the-counter laxatives taken orally. Only mild laxatives are recommended.
Miralax®
This is an oral medication in powder form. The usual dose is 1 capful dissolved in 4 to 8 ounces
of water or juice, 1 to 2 times per day.
Pericolace®
This is an oral medication in capsule form. The usual dose is 1 to 2 capsules at bedtime, which
may be increased to twice a day if needed.
Milk of Magnesia® (magnesium hydroxide)
Magnesium hydroxide acts by stimulating the movement of fluid into the bowel, causing a bowel
movement within a short time. This fairly harsh laxative should not be used on an ongoing basis.
The dose is 30 cc at bedtime.
Mineral Oil
Mineral oil coats the bowel and stool, helping to retain moisture in the stool. It is normally taken
at bedtime so that a normal bowel movement will occur the next morning.
Laxatives; Rectal Stimulants
Traditional enemas should be avoided, as they are too harsh for routine use. The following gen-
tler stimulants should be used only as needed, as extended use may result in dependence.
Glycerin Suppositories
These mild suppositories contain no medication and are often used when establishing a regu-
lar bowel program. They draw water into the bowel, helping to soften stool.
Dulcolax® (bisacodyl) Suppositories
This suppository contains a medication that stimulates movement of the rectal muscles to fa-
cilitate a bowel movement.
Enemeez® Mini Enema (docusate)
This is an enema-type medication in an easy-to-use, single-dose squeeze container. A bowel
movement usually occurs within several minutes.
Fleet® (sodium phosphate) Enema
This is a rectal enema that usually produces a bowel movement within 2 to 5 minutes.
B. DIARRHEA
Diarrhea and fecal incontinence are less common than constipation, but can be debilitating.
Management primarily consists of making the stool firm and bulky, yet soft and easy to movethrough the bowel.
Metamucil®
This is an oral medication in powder or capsule form. Although used to treat constipation, when
used to prevent diarrhea, the bulk former is taken no more than once a day and without any ad-
ditional water.
Imodium® and Related Medications
These are oral medications in tablet form. These work by slowing the passage of stool through
the bowel. These medications should not be taken on a regular basis, as dependence may result.
SYMPTOM MANAGEMENT UPDATE
SECTION 14: SPEECH AND SWALLOWING
A wide variety of speech and swallowing difficulties may occur with MS, dependingon the areas in the brain where demyelination occurs. These problems are usuallyconsidered together, because they tend to result from the same problems in themuscles of the throat used for speech production and for swallowing. These includespasticity, tremor, or weakness in the muscles involved in producing speech or con-trolling swallowing, or from a lack of muscle coordination. Speech and languagetherapists are trained to manage both types of problems.
A. SPEECH
The most common speech problems seen in MS are dysarthria and dysphonia. Dysarthria involvesspeech that is slurred or poorly articulated; it can involve a loss of volume control, unnatural em-phasis on words or sentences, and a slower rate of speaking. Dysphonia results in changes in thequality of speech, such as a breathless quality to the voice, or speech that sounds harsh.
A speech therapist can help with exercises and adaptive equipment, depending on the type ofproblem you are experiencing.
Exercise
Some exercises can strengthen and improve the muscles involved in the production of speech,
or improve breathing through relaxation of the affected muscles.
Modifying Speech Patterns
A speech language therapist can teach techniques to help slow speech so that it is more un-
derstandable, as well as techniques such as improving the way words are articulated and cor-
rectly pausing between words. One technique that is particularly helpful is to listen to your own
voice using a tape recorder.
Alternative Speech Production
When speech difficulties are severe and cannot be corrected with exercise or speech modifi-
cation, alternative means of speech production can restore the ability to communicate. These
range from technology that amplifies the voice, to alternative communication systems such as
computer boards.
No medications can specifically improve speech difficulties. However, medications that relievesymptoms such as spasticity may provide some improvement.
Swallowing is a complex process that involves chewing, then moving food to the back of themouth, the pharynx, and through the esophagus into the stomach. Depending on lesion pattern,one or more of these processes may be affected. A speech/swallowing pathologist will evalu-ate the source of the problem and determine how best to manage the problem. The goal oftherapy is to ensure that swallowing is safe, to prevent food from entering the airway and lungs,where it can cause aspiration pneumonia. It will also focus on ensuring that food and fluidintake is sufficient for optimal health.
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SYMPTOM MANAGEMENT UPDATE
SECTION 1 5: VISION
Visual difficulties are common in MS. The most common problems are decreased orblurred vision (optic neuritis), double vision (diplopia) and what is termed, "involuntarymovements of the eyes" (nystagmus). All are the result of MS lesions in areas of thebrain that control and coordinate vision.
Optic neuritis is an inflammation of the optic nerve, which – unlike the nerves that inner-vate most of the body, which are part of the peripheral nervous system – is actually a partof the central nervous system and is myelinated in the same way as axons in the brain andspinal cord. Many individuals experience optic neuritis as their first symptom of MS.
Double vision and involuntary eye movements are the result of lesions in the brainstem, a part of the nervous system between the brain and cervical spinal cord.
Because these conditions are all the result of MS inflammation and myelin damage,treatment is generally the same for all three.
Like other MS exacerbations, it is often sufficient to take a "wait and see" attitude; these prob-lems often resolve on their own, after the attack or relapse has subsided. With certain visualproblems, prisms in eye glasses may help some patients.
Very High-Dose Steroids
The same steroid treatment used to treat other types of MS relapses is often effective in short-
ening the duration of visual problems. These are usually given via IV for a few days, but steroids
may also be given orally. An example of a "very" high dose of steroids would be 1,000 mg of
Solu-Medrol® (IV methylprednisolone).
MS Disease-Modifying Therapies
Mentioned earlier, six disease-modifying therapies favorably reorganize the immune system and are
currently approved for treating the relapsing forms of MS. Several studies have shown that these can
reduce the number and severity of attacks, which in turn reduces the development of visual difficulties.
Low-Vision Management
If visual problems persist, an ophthalmologist who specializes in low vision can help provide low-
vision devices that include magnification and computer modifications. He or she can also de-
sign a variety of helpful strategies for managing daily activities.
SECTION 16: SEXUALITY
Both men and women may experience sexual difficulties as the result of MS, which can in-clude a loss of libido, altered genital sensation, and decreased frequency and intensity oforgasms. Men may experience difficulties with erection and ejaculation, and women mayhave reduced vaginal lubrication and pain during intercourse. Other symptoms of MS mayalso affect the ability to enjoy the sexual experience. Depending upon the cause of sex-ual dysfunction, a variety of pharmacologic and psychosocial approaches may be helpful.
TREATMENT OF MS SYMPTOMS THAT CAUSE SEXUAL DIFFICULTIES
A number of symptoms associated with MS may affect sexual function and enjoyment. Identi-fying and treating these symptoms may also relieve what are termed secondary dysfunctionssuch as those that affect sexual function. These may include fatigue, depression, spasticity,pain, and bladder or bowel issues.
magic TMINTERMITTENT CATHETER with m3 technology SYMPTOM MANAGEMENT UPDATE
COUNSELING AND SUPPORT
Open communication between partners is essential to managing sexual dysfunction. Both part-ners need to understand both the medical and psychological issues that can affect sexuality, andwork toward open communication and the possibility of alternative approaches to sexual sat-isfaction.
A. ERECTILE DYSFUNCTION
Phosphodiesterase Inhibitors
including Viagra® (sildenafil), Levitra® (vardenafil), and Cialis® (tadalafil)
These are oral medications in tablet form. Dosages are 50 to 100 mg per day (Viagra), and 5 to
20 mg per day (Levitra, Cialis). These agents were developed to manage erectile function due
to many causes, but they have proved effective for many men with MS. They are chemically sim-
ilar, and all delay the actions that interfere with developing and maintaining an erection.
Side effects may include headache, nasal congestion, and gastrointestinal symptoms.
Injectible Agents and Vacuum Pumps
Medications that are directly injected into the penis, including vasodilators and papaverine, are
less frequently used.
Vacuum pumps are another alternative if medications are not feasible.
B. VAGINAL DRYNESS
Lubrication agents, Estrogen-containing vaginal preparations, and topical creams
These may be prescribed for women experiencing vaginal dryness and/or genital sensitivity.
Cold packs before intercourse can reduce sensitivity and muscle spasms.
MORE INFORMATION: Managing MS Symptoms
Managing the Symptoms of Multiple Sclerosis, MSAA's MSi (Multiple Sclerosis information) online 5th Edition, by Randall T. Schapiro, MD; Demos video program offers a variety of subjects through Medical Publishing, 2007 its A Closer Look series. Among others, topics in- Complementary and Alternative Medicine and clude: managing various symptoms; MS fatigue; Multiple Sclerosis, 2nd Edition, by Allen C. Bowl- emotions; stress; intimacy; complementary and al- ing, MD, PhD; Demos Medical Publishing, 2007 ternative medicine; and exercise.
These books and many others are available Videos may be viewed for free by visiting msas-
through MSAA's free Lending Library. Please see sociation.org and selecting "MSi" video programs.
page 64 of this issue for ordering information.
Some of these videos are available on DVDthrough MSAA's free Lending Library. Please seepage 64 of this issue for ordering information.
MSAA PUBLISHED ARTICLES from The Motivator (listed by symptom):
Fatigue: Summer 2005, page 50; Spring 2004,
Swallowing issues: Fall 2007, page 38; Fall
Spasticity: Winter 2008, page 36; Winter
Visual changes: Summer 2004, page 32
Sexual dysfunction: Fall 2004 (Cover Story),
Weakness: Fall 2006, page 44; Fall 2006, page 47
Pain: Spring 2005, page 53; Winter 2005, page
Heat sensitivity: Summer 2007, page 36; Sum-
48; Fall 2004, page 38 mer 2005, page 44 Depression: Winter 2006, page 47; Fall 2005,
Mobility, exercise, and weight management:
Fall 2008, page 40; Spring 2008, page 34; [MSAA also has a separate publication, Under- Winter 2008, page 40; Winter 2004 (Cover standing and Treating Depression in Multiple Involuntary Emotional Expression Disorder
Anxiety: Winter 2008 (Cover Story), page 8
[IEED]: Summer 2006, page 36
Sleep difficulties: Fall 2003, page 32* (call for
copy)
All MSAA articles and publications beginning Cognitive changes: Spring 2006, page 42
from 2004 may be viewed, downloaded, and
printed by going to www.msassociation.org
Bladder problems: Winter/Spring 2007, page 50
and clicking on "publications." For earlier arti- Bowel dysfunction: Winter 2006, page 38
cles (marked by an asterisk*), and for individu- Speech problems: Fall 2003, page 19* (call for
als without internet access, please call MSAA copy); Spring 2003, page 40* (call for copy) at (800) 532-7667 to request a copy.
By Dr. Jack Burks
Chief Medical Officer for MSAA
Q: I have heard of an
error may be the best solution. A physical MS treatment used in
therapist may serve as a good "coach" for Europe that is having
you, and may offer additional strategies to amazing results and I
help reduce your symptoms. Additionally, know there are a few
Lyrica® (pregabalin) has been approved by physicians in this
the United States' Food and Drug Adminis- country who are using
tration (FDA) for treating pain associated with fibromyalgia. This might be another op- Dr. Jack Burks proved treatment. It
tion to discuss with your doctor.
involves amino acid injections. Do you
have any information on this treatment and
Q: I've been taking Copaxone for my MS.
how I might locate a physician using it?
My neurologist says I don't have any new le-
Also, in addition to MS, I have been diag-
sions. I'm 51 and I also have epilepsy, fi-
nosed with fibromyalgia and it seems that
bromyalgia, rosacea, arthritis, and I've had
whatever helps the MS (i.e., cooling vest)
extensive orthopedic work done, including
exacerbates the fibromyalgia, which re-
implanted rods and screws.
sponds well to a heating pad. Can you give
I take lots of medicine and see lots of
any suggestions as to how to balance the
doctors, but I don't have answers for the
following question. For years, both of my
legs feel like they are full of bees, and they
A: Your first question on amino acid injec-
vibrate and shake – sometimes so hard, I
tions for MS is not specific, and the names of get sick to my stomach. No one sees the
the amino acids are needed before I can moving because it is happening on the in-
comment. Peptides and amino acids are the side. Now the shaking has also moved to
building blocks of proteins. Vast numbers of my arms and hands. It's very difficult to
amino acids are used to treat a variety of deal with. Please, can you tell me what it is,
medical conditions. For example, all four of and how to stop it?
the current first-line MS therapies involvepeptides, amino acids, and/or proteins.
A: Your symptoms must be very distressing.
Your second question is difficult because While it is most likely related to your MS, every patient responds uniquely. The posi- some epilepsy patients have similar intermit- tive effects of cooling to help MS, and heat to tent symptoms. In MS, damage to the spe- help your fibromyalgia, need to be balanced cific areas of the spinal cord and brain with their negative effects for each condi- pathways which control sensation, can cause tion. Individual patient responses vary with these symptoms.
these different types of therapies. Trial and The treatment of these types of MS symp- Ask the Doctor
toms usually begins with anti-seizure med- on it. Do you think that the MS treatment
ications. Are you already taking epilepsy is better in the United States, or is it the
medication? Examples of medications used same all over the world, as my doctor has
to treat such MS symptoms include Neuron- told me? I've always felt that America is so
tin® (gabapentin), Tegretol® (carba- much more advanced in many things, espe-
mazepine), Lyrica® (pregabalin), Cymbalta® cially in terms of medical treatment.
(duloxetine), Topamax® (topiramate), Dilan-tin® (phenytoin), and tricyclic antidepressant A: Treatments for MS care are similar in Ire-
medications. If your doctor believes that the land and in the United States. In fact, the sensations are related to an acute MS attack, standard treatments for MS are available steroids might be helpful.
worldwide. These are helping to control the In addition, immunomodulating MS treat- disease, treat the symptoms, increase func- ments are designed to reduce further damage tions such as mobility, increase employability, which may otherwise cause an increase in and provide support to family and friends.
symptoms. The six FDA-approved disease- New MS treatments are being developed in modifying therapies (DMTs) for MS are: many countries, with scientists and physi- Avonex® (interferon beta 1-a); Betaseron® cians working together internationally to- (interferon beta 1-b); Rebif® (interferon beta ward a common goal. You have access to the 1-a); Copaxone® (glatiramer acetate); No- best available treatments in Ireland, and the vantrone® (mitoxantrone); and Tysabri® (na- neurologists in your country are very well talizumab). The first four therapies listed are trained. I wish you all the best.
given via injection at home, while the lattertwo are given via IV infusion at a medical fa- Q: I am 61 years old. I was diagnosed with
cility. For more information about these ther- MS in 1981 and right now I can't stand or
apies, please see the Summer 2008 issue of walk. Sometimes my body gets too hot
The Motivator. This may be viewed, down- while sleeping with just a sheet at a room
loaded, or ordered through MSAA's website at temperature of 60 degrees. I become so hot,
www.msassociation.org and selecting "pub-
I must remove the sheet and turn on
lications." You may also call MSAA at (800)
my two table fans using remote controls.
532-7667 to request a copy or to speak with
Also, I can't sweat at all. Is this a common
a Helpline consultant.
symptom of MS? I have been on Copaxone
for one year and I can feel significant im-
Q: I am 28 years old and I live in Ireland. I
provement. I'm hoping that one day I will
am a social worker and I work with people
be able to walk again.
with physical and intellectual disabilities. I
was diagnosed with MS this past summer,
A: It is good to know that you feel better on
so everything is still very new. I am taking
Copaxone. Your feeling of being too hot may Rebif three times a week and feeling okay
continued on page 55
Written by Susan Wells Courtney
Reviewed by Dr. Jack Burks
Oral Cladribine Meets Primary Endpoint in Phase III Trial
In January 2009, Merck Serono (Geneva high-dose active drug, or placebo. These were Switzerland) announced results of their Phase given in two or four treatment courses during III CLARITY trial. According to the release, the first year, followed by two treatment cladribine tablets met the two-year endpoint courses during the second year. A treatment of reducing the relapse rate in patients with course consisted of one oral tablet taken daily relapsing-remitting MS (RRMS). More than for four to five consecutive days. Lymphope- 1300 patients with RRMS participated in the nia, which is a decrease in the number of CLARITY study, which was a 96-week, ran- lymphocytes (white blood cells) in the blood, domized, double-blind, placebo-controlled, occurred more often in the treated group.
This was expected given cladribine's pre- Two different dose regimens were com- sumed mechanism of action. Both the treated pared to placebo, and those taking the lower and the placebo groups reported headaches total dose had a 58-percent relative reduction and nasopharyngitis (nose and throat irrita- in annualized relapse rate (ARR) versus those tion) as the most frequent adverse events.
given a placebo. Patients given the higher Oral cladribine is the first oral therapy for dose experienced a 55-percent decrease in MS to have Phase III trial data reported to the ARR versus placebo. Secondary endpoints in- FDA. This drug reduces the number of cer- cluded reductions in lesion activity, propor- tain T-lymphocytes, which are believed to be tion of patients who were relapse-free, and involved with the inflammation and damage progression of disability. All of these second- that occurs in MS. Merck Serono plans to ary endpoints were met as well.
submit an application for the approval of oral Study participants received low-dose or cladribine to the FDA in mid-2009. N Results Announced from Study of Dirucotide (MBP8298) in RRMS Patients
Dirucotide, previously known as MBP8298, has been in clinical trials primarily for the treatment of secondary-progressive multiple sclerosis (SPMS), but also for relapsing-remitting multiple scle-rosis (RRMS). On January 30, 2009, dirucotide's developer (BioMS Medical Corp.), announcedthe results of MINDSET-01, an exploratory phase II clinical trial designed to evaluate the effec-tiveness and safety of dirucotide in patients with RRMS.
MINDSET-01 enrolled 218 patients with RRMS at 24 sites in Europe. While the treatment did not meet its primary endpoint of reducing annualized relapse rates or reducing associated sec-ondary MRI endpoints, it did meet certain secondary endpoints relating to the progression of MS.
Changes in progression were measured using the Expanded Disability Status Scale (EDSS) andthe Multiple Sclerosis Functional Composite (MSFC) score.
In this 15-month study, dirucotide (or placebo) was given via three single intravenous injections Oral BG-12 Reduces Brain Lesions in Patients with MS
According to the data from a Phase IIb These data suggest that BG-12 may have study, Biogen Idec's oral compound BG-12 neuroprotective as well as anti-inflammatory ef- (BG00012, dimethyl fumarate) reduced the fects. Inflammation and damage to the myelin number of new gadolinium enhancing (Gd+) and nerves within the CNS play an important lesions by 69 percent in patients with RRMS, role in the MS process, particularly for those compared to placebo. This data was published with the relapsing-remitting form of the disease.
in the October 25, 2008 issue of The Lancet.
BG-12 has also been shown to activate the Data also showed a 53-percent reduction in "Nrf2 transcriptional pathway." This pathway the mean number of T1-hypointense lesions helps defend against the destruction of nerves, and a 44-percent reduction in cumulative new protects the blood-brain barrier, and supports Gd+ lesions in patients taking BG-12 versus the integrity of myelin within the CNS.
those on placebo.
In the Phase IIb study, the treatment arms The presence of Gd+ lesions is thought to included two dose levels of BG-12 given one indicate continuing inflammatory activity to three times daily, or placebo. The drug was within the central nervous system (CNS), administered orally (by mouth) for 24 weeks.
while T1-hypointense lesions (also known as BG-12 met all of the study endpoints when "black holes") are associated with significant given at the higher (240 mg) dose level, three damage and loss of brain tissue. According to times daily. Adverse events in the group re- Biogen Idec, an ad hoc analysis conducted ceiving active treatment included flushing, during the study showed that Gd+ lesions headache, nausea, diarrhea, upper abdominal were less likely to evolve into T1-hypointense pain, hot flush, and [lower] abdominal pain.
lesions in patients taking BG-12 versus Many of these side effects decreased over continued on page 55
at zero, three, and nine months. Dirucotide was generally well tolerated and no patients withdrewfrom the study due to side effects – the most common of which were redness and burning sensa-tion at the injection site.
Measuring progression according to the EDSS and MSFC scores are the primary and secondary out- comes in the ongoing SPMS trials, all of which are fully enrolled. These include the MAESTRO-01 (apivotal phase III study taking place in Canada and Europe with 611 patients), the MASESTRO-02 (anopen-label follow-up study with patients who have successfully completed the MAESTRO-01 trial),and the MAESTRO-03 (a pivotal phase III study taking place in the United States with 510 patients).
Dirucotide (a peptide) is a synthetic fragment of myelin basic protein (MBP). It replicates the site on the MBP molecule that is believed to be a target of attack by cells of the immune system –in 65 to 75 percent of all people with MS. This treatment is believed to induce or restore im-munologic tolerance to attack. N "… It's Good to Know – You've Got a Friend."
MSAA's Networking Program
You may recognize this as a lyric from the link up with others who are affected by MS famous James Taylor song, but it also reflects and face similar challenges. Additionally, this the feelings of many clients who participate online format allows people to participate in the MSAA Networking Program. One from their home around a schedule that best such person is Michelle from Maine; she is fits their lifestyle. Using email correspon- married, a mother of four young children, dence is especially helpful for those who are and living with MS since 2007.
unable to attend traditional support group "It's nice to correspond with people who meetings but still want to stay connected to have MS and truly understand what you're the MS community.
going though," says Michelle. "When I "Living in rural Maine, I find it very con- joined the Networking Program, I wasn't venient to sit at home and stay in touch sure what to expect. But, I was happy that without traveling long distances," notes people emailed me back and we ‘talked' Michelle. "Plus, you don't have to worry about medicines, symptoms, diet, exercise, about how you look when you're in front of how to stay at my job… really all kinds of Recently Michelle made a decision to sus- Revised last year to operate from the pend her return to school, understanding MSAA website, www.msassociation.org, the
that something had to give between work Networking Program is an online commu- and her family. With this slight break in her nity of individuals with multiple sclerosis schedule, she plans to spend more time "net- and their care partners, who are interested in working" with her friends in the program.
finding peer support and corresponding "So far, the feedback has been positive," through email exchange. Clients have the said Michelle. "Whether it's the Networking opportunity to post information about them Program or other websites, there's helpful in- in the directory and email other members formation out there. I encourage everyone to through a number of searchable categories.
go out and get it." Access to the directory is password protected MSAA welcomes new members to the and made available once registration is ap- Networking Program. To learn more or register, log onto www.msassociation.org/
As described by Michelle and expressed programs or contact Peter Damiri at (800)
to MSAA by many, participants in the pro- 532-7667, extension 109.
gram find it very helpful and reassuring to Two MSAA Programs
their diagnosis. Talking with Your Children Now Available as a Free DVD Set
about Multiple Sclerosis: A Place to Begin fea- Among the 16 videos now posted on tures three families who have a parent with MS, with touching interviews from both the two programs have been made available as a children and the parents on how they talk free, two-DVD set. An Introduction to Multiple about, adjust to, and live with MS on a daily Sclerosis and Talking with Your Children about Multiple Sclerosis: A Place to Begin are ideal Both videos include Spanish translations.
resources for newly diagnosed clients or par- To receive your free DVD set, please go to ents ready to have this important conversa- tion with family members.
and select the order form below either pro- An Introduction to Multiple Sclerosis is a gram. If you're unable to order online, four-part video featuring comprehensive ex- please call (800) 532-7667, extension 129
planations of the disease, treatments, and and leave your complete name and mailing management techniques through graphic an- imations and interviews with neurologist Dr.
This program is made possible through Joanna Cooper; MS certified nurse Lynn the generous support of Teva Neuroscience Jehle; and several MS patients who recall and produced by Direct Health Media. N their physical and emotional adjustments to MSAA's Life Coaching Program
Coping with the Challenges of Multiple Sclerosis
MSAA's Life Coaching Program teaches strategies to help people cope
with multiple sclerosis. Developed with direct input from more than 800
individuals diagnosed with MS, this program will offer toll-free teleconfer-
ences throughout the nation. These will focus on a variety of topics such as:
• Finding joy and cultivating happiness• Resilience ("how to keep going")• Employment issues• Managing emotions• Big questions, "Why me, why now, what next?" If interested, please visit support.msassociation.org/lifecoaching and complete the survey. Doing
so allows us to send you announcements about upcoming programs. In Life Coaching, you will
participate in group telephone sessions, respond to questionnaires, and complete a variety of
coaching exercises between sessions to develop skills and insights. Get ready to learn about
yourself and new ways to meet life's challenges through the support of peers and Life Coaching!
By Bruce Makous
Vice President of Development
The Shade of Trees:
Leaving a Legacy for People Living with MS
As the ancient saying goes, Bobby Soileau at a recent MSAA donor recog- "We enjoy the shade of nition event. "That's where I met MSAA Presi- trees planted by those who dent Doug Franklin, several Board chairs, and have gone before us." This many other folks from MSAA headquarters. I is accompanied by the tra- found that they are good people, very dedi- ditional sense that we cated to the great cause of helping those who should replace the legacy live every day with this very difficult condi- Bruce Makous we have inherited, so that tion. I decided that I wanted to leave some- those who follow us may reap the benefits.
thing to this worthy organization from my Leaving a charitable legacy is a wonderful estate, so I named MSAA as a beneficiary of way to help future generations. This can sim- proceeds from my life insurance policies." ply mean remembering MSAA in your will Legacy giving such as this, supplements with a portion of your estate to help people the hundreds of thousands of annual gifts living with MS. There are also a number of contributed by generous donors across the other ways that people support MSAA country. I have the pleasure of traveling all through legacy giving.
around the country on behalf of MSAA and A generous man in Wyoming made MSAA meeting many of our donors. In November, I the beneficiary of the portion of his retire- traveled to meet generous donors in the Den- ment plan that may remain upon his death. A ver area, as well as Maryland. In December, it woman in Florida designated a specific was Tennessee, and in February, Florida.
amount for MSAA from a marital trust. An- At an MSAA President's Circle reception other individual in New York gave a portion held in Tampa, Florida in February, President of real assets remaining after he passes.
and CEO Doug Franklin, and our Board Contribution of life insurance benefits is members, met many Florida supporters.
another method for providing support for MSAA's recently released 2007-08 Annual generations who will come after you. Bobby Report features the theme, "Impact Through Soileau of Minnesota, an MSAA Board mem- Quality," and shows how our many supporters ber and supporter of many years, decided to nationwide have enriched the quality of life for name MSAA as the beneficiary of a portion of people living with MS through our high-qual- the proceeds of his life insurance policies.
ity programs. It is gratifying to see that our "I've been on the TransMontana Snowmo- President's Circle supporters, those who gener- bile Ride for MS for the past six years," said ously provide $500 or more annually, have Thoughts about Giving
Left: At the recent Tampa, Florida, President's
Circle reception, Board Member Bobby Soileau
of Minnesota, was inducted by MSAA Board
Chair Eric Simons and President and CEO
Douglas Franklin, into the John Robison Circle,
MSAA's recognition group for those who have
made provisions for MSAA in a will, trust, or
other means of leaving a charitable legacy.
Right: Also at the Tampa President's
Circle reception, Ann Murray and
Anne Donlin, Past Chief Daughters of
the White Heather Lodge #259 of the
Grand Lodge of the Daughters of Sco-
tia, received appreciation from MSAA
for their many years of support. The
Daughters of Scotia have contributed
$100,000 over the past 10 years.
grown by more than 45 percent this past year.
I give to the Multiple Sclerosis Association of Thank you, Bobby Soileau and many oth- America, Inc., a nonprofit 501(c)(3) Corpora- ers who have planted trees for future genera- tion (IRS ID# 22-1912812), headquartered in tions, creating charitable legacies by Cherry Hill, New Jersey, percent [spelled remembering MSAA in their estate plans.
out] ( _%) of my estate to go to MSAA's Thanks, too, to everyone throughout our [Equipment Distribution Program, for exam- country who provides thoughtful support for ple.]. This contribution is provided to establish MSAA, enriching the quality of life for every- the [e.g., John and Jane Doe Fund for Equip-
one affected by multiple sclerosis.
ment for People Living with MS.]
Ways You Can Leave a Charitable Legacy
Charitable Gift Annuity: Make a contribution
Donors frequently ask how they should go of $10,000 or more and receive a fixed income about leaving a legacy to MSAA. Here are a each year for life. Income rates vary from 5 few thoughts about ways to give wisely: percent to 11 percent, and increase with age.
A Charitable Bequest: Your attorney can help
(Please see the annuity table which appears on you make a provision in your will. Sample the back cover of this publication.) language would be: Thoughts about Giving
Charitable Remainder Trust: This also pro-
Any of these legacy-giving methods may pro- vides income for life. Appropriate for contri- vide funding for a specific program, a perma- butions of $100,000 or more. You may be nent endowment, or for general operations.
able to reduce associated taxes.
The fund name may be designated to honorthe donor or another person.
Gift of Retirement Plan Assets: Any pension
It is best to discuss your intentions with plan, IRA, 401(k), 403(b), or other plan has a MSAA staff today to make sure that your fund provision for designating the beneficiary of is established as you wish. You are welcome to the portion of the assets remaining at death.
visit MSAA headquarters near Philadelphia to Naming MSAA will create a fund that will meet us, or a senior staff person will be pleased benefit people living with MS.
to stop by your home to discuss your goals.
In making your designation, please re- Gift of Life Insurance: Donors may make
member that the Multiple Sclerosis Association MSAA the beneficiary of all or part of the of America is a nonprofit 501(c)(3) corpora- death proceeds from life insurance. You may tion headquartered in Cherry Hill, New Jer- also contribute ownership of the entire policy sey (IRS tax ID number 22-1912812). N to MSAA. The proceeds will create a fund thatwill benefit people living with MS.
If you have thoughts about giving, please feel free
to contact Bruce Makous at (800) 532-7667, ext.
148, or email [email protected].
THE PHILANTHROPY CIRCLE The following thoughtful corporations and foundations have contributed generously to MSAA to helpimprove the quality of life for people living with multiple sclerosis. Organizations providing gifts of$10,000 or more are shown in this listing. CHAMPIONS ($100,000 and up) INNOVATORS ($25,000 to $49,999) Bayer HealthCare Pharmaceuticals Bayer USA Foundation Medtronic Foundation EMD Serono, Inc. and Pfizer IncGenentech Foundation ADVOCATES ($10,000 to $24,999) Genentech, Inc.
Avanir Pharmaceuticals Novartis Pharmaceuticals Corporation Teva Neuroscience The Chatlos FoundationGrand Lodge Daughters of Scotia VISIONARIES ($50,000 to $99,999) The Horizon Foundation for New Jersey Acorda Therapeutics The Wal-Mart Foundation Ask the Doctor
continued from page 47
associated with feeling hot. A fluctuating be related to your reduced ability to sweat, fever can make you feel either excessively since sweating is one of the body's ways to re- cold or hot, so taking your temperature is an- duce body heat. A cool bath before bedtime or other good idea. Report any fever to your a cooling vest or other device may be helpful.
physician, as this could mean that you may MSAA has a Cooling Equipment Distribu- have an infection or other health issue. N tion Program for individuals with MSwho are sensitive to heat. Various types of Jack Burks, MD, is a neurologist, chief medical cooling apparel (such as vests, neck wraps, officer for MSAA, clinical professor of neurology at and wrist bands) are available at no charge the University of Nevada in Reno, Nevada, and to individuals who qualify. Please visit member of the Clinical Advisory Committee of the NMSS. He has edited two MS textbooks. Previously, or call MSAA at (800) 532-7667 for details.
Dr. Burks established the Rocky Mountain MS These same items may also be purchased Center and has served on several Boards of Directors, through companies which specialize in this including the American Society of Neurorehabilita- type of technology.
tion (past president), the Colorado Neurological In- Sweating is controlled by the autonomic stitute, the American Academy of Neurology, and nervous system, which can be affected in MS, the Consortium of MS Centers. In recent years, he although less commonly than other parts of has lectured in more than 30 countries. the nervous system. On the other hand, someMS patients complain of excessive sweating.
Everyone is different. I would recommendthat you check with your doctor to make cer- tain you are not having any other problems continued from page 49
To Submit Questions.
time. Frequency of infection was low and did Please submit your questions to: not differ between the active-treatment andplacebo groups.
The United States' Food and Drug Admin- Questions for Ask the Doctor istration (FDA) granted Fast Track designa- c/o Dr. Jack Burks tion for BG-12 in 2008. "DEFINE" and 706 Haddonfield RoadCherry Hill, New Jersey 08002 "CONFIRM" are two Phase III studies for BG-12, which will include more than 2,000 pa- Readers may also send in questions via tients in North America, Europe, and email to [email protected].
worldwide. Individuals with relapsing-remit- Please be sure to write "Ask the Doctor" ting MS who are interested in enrolling may in the subject line.
visit www.clinicaltrials.gov and search for
"BG-12" for more information. N
Mobility Independence and Safety
Written by Patricia G. Provance, PT, MSCS
Part II: Improving Functional Mobility with Exercise
(Please note that Part III will appear in a future issue of The Motivator.)
In Part I of this series on mobility inde- push you to failure and more frustration.
pendence and safety, appearing in the Fall My desire in writing this article is to help 2008 issue of The Motivator, we emphasized you become an informed advocate in devel- the need for a baseline evaluation by a physi- oping your own, customized, exercise and ac- cal therapist (PT). We also discussed the tivity program. The guidance of a PT with downside of inactivity; fatigue and energy experience in MS care can be helpful – but management; cooling tips; and some issues there are many things you can do on your and equipment related to ambulation. In this own. However, before starting, some planning article – Part II of the series – the focus will is necessary. Here are some questions to ask: be on an extremely important, and oftenoverlooked, component of wellness: exercise! • What positions, movements, or activities In the past, many physicians recommended are difficult for you right now? rest instead of activity because of fatigue issues • How much time and energy (if any) do and the fact that MS was a "progressive" neu- you have to devote to exercise? rological disease. However, research in the • Are you doing considerably less than you past 10 years has shown that well-paced exer- did a year or two ago? cise and activity can, indeed, result in positive • Are your goals realistic? outcomes relating to improved functional • Are you motivated to go into low-level strength, endurance and quality of life.
As a PT, I have many times heard the re- • Do you have support at home for this new frain, "Why exercise? I have MS!" Burdened change in behavior? by sometimes overwhelming fatigue and frus- • Can you be flexible if circumstances, tration, many individuals with MS feel that weather, energy, or other factors require exercise will just make their situation worse.
changes to your routine? In fact, that could be true – especially if theexercise or activity is not appropriate or is Helpful Advice for Planning
"overdone." Unfortunately, some therapists an Exercise and Activity Program
and trainers who are not familiar with MS 1. Activities This refers to "Activities of
(especially the symptom fluctuations, fatigue Daily Living" (ADLs) that are the corner- issues, and heat sensitivity) will unknowingly stone of functional independence. For ex- Symptom Awareness: Mobility Independence and Safety
ample, if you have trouble standing up 4. Realistic Goal Setting If you haven't
without using your arms to push off (or a done much activity in years, it's important grab-bar to pull up) – that is where you to realize that progress will be slow. Pa- need to start. If you use a wheelchair and tience and persistence are the keys to suc- have trouble sitting unsupported or doing a cess as you begin the process of "attitude chair push-up with good trunk control to adjustment" and "behavior modification." assist in transfers – that is where you need Setting realistic and attainable short-term to start. Simple exer- goals will ease frustra- cises or activities that tion – and seeing slow, Research in the past 10 years
are focused on func- steady progress will tion can be extremely has shown that well-paced
motivate you to con- helpful in the effort to exercise and activity can result
improve strength, in positive outcomes relating to
safety, and independ- improved functional strength,
5. "Training" In this
case, we are not refer- endurance and quality of life.
ring to the grueling 2. Time and Energy
workouts of athletes in Remember the four "Ps" – Planning, Pacing, the gym, but a commitment to improving Positioning, and Prioritization. This will both strength and health by starting a regu- allow you to incorporate some of the exer- lar wellness routine. This concept of "going cises throughout the day instead of trying to into training" includes healthful eating, do them in a single session. A good rule of good sleep habits, and regular, appropriate thumb is to try to do something (such as iso- low-level exercise and/or activity.
metrics, balance exercises, chair push-ups,walking practice, etc.) at brief intervals 6. Support I have had the opportunity for
throughout the day, with a focus on quality many years to work with thousands of pa- and control instead of quantity.
tients with MS. In spite of the wide varia-tion in symptoms and abilities, my 3. De-conditioning This is a common prob-
observation has been that those with the lem when activity declines, and it usually is highest quality of life had two things: a slow, steady process of muscles weakening SPUNK and SUPPORT. Those attributes will from disuse, resulting in less endurance.
greatly improve the chances of a positive The "primary" weakness caused by MS outcome as one begins an exercise program.
plaques in the central nervous system will Having the spunk and desire to do some- require some compensatory measures (such thing is important – but having support of as a foot-drop brace or cane). However, the family and friends (as cheerleaders and as- "secondary" weakness due to de-condition- sistants) will help to get it done! ing is reversible! "Use it, or lose it!" Symptom Awareness: Mobility Independence and Safety
7. Flexibility This does not refer to stretch-
breathe – relax and repeat.
ing (which is important for tight muscles), 2. Isometric Quads: tighten thigh muscles but the need to "flex" your exercises and that hold knee straight.
activities depending on many factors, such 3. "Foot Pumps:" pull toes toward your as how you're feeling, a busy schedule, nose until you feel a stretch in the back transportation or weather challenges, etc.
of your calf – hold – relax – then alter- Having a basic home program that can be nate with other foot; repeat several times.
done at any time (or many brief times) in 4. "Tummy Tucks:" pull lower belly up and in the day will allow you to continue on the – hold for several breaths – relax and repeat.
road to functional strengthening, balance, 5. "Bent-Knee Leg Lifts:" bend both knees and mobility.
with feet on bed or floor – then alternatelylift legs like you're marching; this is much Where to Start!?.
less strenuous than straight leg raises! The developmental model requires one 6. Overhead Reach: clasp hands together or to have stability before you can achieve in- put hands on opposite elbows and try to dependent mobility. Therefore, the first raise both arms completely overhead goals should be attaining good balance and until they touch the bed.
control in many positions – holding still (or 7. Roll to and from front to back and vice static) at first, and then moving (or versa; repeat.
dynamic). This will vary greatly, depending 8. Roll to each side and press up to raise on your strength and abilities, but it's al- shoulders off the bed.
ways good to review the basics.
9. Roll to each side and slide legs off the The list below can be a starting point bed and come to a sitting position.
for simple exercises in different positions –but please take caution not to try any exer- Position # 2: SITTING IN A STURDY
cise or position that may be too difficult or ARMCHAIR WITH FEET ON THE FLOOR
unsafe for you. If you are extremely weak, a 1. Sit away from the back of the chair and PT evaluation is strongly advised, and you correct posture: knees forward (like should have a care partner present to assist "headlights"), belly up and in, shoulder with your home program.
blades down and back, chin level and Editor's note: Please consult your
eyes forward (this is "static balance").
physician before making any changes to 2. "Trunk Clocks:" pretending that you're sit- your exercise and activity programs.
ting in the middle of a clock and lean fromside to side, forward and back, and diago- Position # 1: LYING DOWN
nally, as if aiming toward the "numbers" WITH HIPS AND KNEES STRAIGHT
on a clock (this is "dynamic balance").
1. Isometric Gluteals, or "Glut Sets:" 3. "Chair Push-Ups:" sit tall, put hands on squeeze buttocks together – hold and chair arms beside hips, and press up so Symptom Awareness: Mobility Independence and Safety
that your hips raise up from the seat of twisting slowly to work your trunk and the chair; hold, then slowly return to a buttock muscles.
sitting position.
4. Knee Flexion and Extension: sit tall and Position # 4: STANDING
slowly straighten, then bend each knee.
(with light hand support, as needed)
5. Low Back Stretch: clasp hands behind 1. Practice good standing posture: feet knees and pull your chest to your thighs; comfortably apart, knees forward (but hold, breathe, and relax.
not locked), hips straight, belly up and 6. "Arm Ballet:" sit tall and raise both arms in, shoulder blades down and back, chin overhead and out to the side in different level, and eyes forward.
patterns such as "a ballet dancer," "V for 2. "Mini-Squats:" do small, slow knee victory," "airplane wings," etc.
bends; then return, relax, and repeat.
7. Go from sitting to standing: work for 3. Single-Leg Stand: slowly lift one foot smooth control without using your arms, (forward, backward, or out to the side) if possible (but do not risk falling or los- and balance on the other leg – relax – ing your balance).
then do the same with the other foot.
4. Marching: slowly lift one knee after the Position # 3: ON HANDS AND KNEES
other while keeping good posture.
1. "Rocking:" balance on hands and knees and rock slowly forward and backward.
Other Exercise Options
2. Arm/Leg Lifts: from hands and knees po- Numerous other exercises and activi- sition, slowly lift one arm and then re- ties can provide both variety and fun when turn to starting position; then lift the the "basics" have been conquered. Many in- other arm and return. Next, try lifting dividuals with MS have found low-level ex- one leg out straight behind you – return ercise, yoga, tai chi, or pilates instruction on to starting position – then lift the other DVDs to be a convenient way to exercise at leg. If this is not a challenge, you can try home (alone or with a friend), and many to lift the opposite arm and leg at the programs can be done from a chair if sup- ported standing is not possible.
3. Crawling forward and backward.
Others report more motivation and so- 4. Static Kneeling: support with your cialization from joining an exercise class.
hands on a firm, soft chair or ottoman Aqua-exercises in a cool pool (at no more (or bed headboard) and tighten belly than 85 degrees) can have wonderful bene- and buttocks. If this is not a challenge, fits because the water provides support for try to maintain balance without hand balance, mild resistance for exercise, and support. If you can balance for several minimal interference by gravity. Hippother- minutes, then you are ready to attempt apy (or therapeutic horseback riding) is an- dynamic kneeling, by bowing and other popular activity that works on Symptom Awareness: Mobility Independence and Safety
balance and strength. If you choose to exer- slip. It is barely perceptible in some of us, cise in a gym or fitness center (or if you but a seriously inhibiting factor for exercise have equipment at home), it's important to in many of us. One can feel sloppy, clumsy, take plenty of rest breaks, to have an oscil- dizzy, and less coordinated. One may also lating fan keeping you cool, and to have an have visual problems and be less able to appropriate, effective and well-paced pro- concentrate or communicate. For example, gram. Aerobic conditioning is an option I have difficulty expressing myself in words, when exercise tolerance improves, but fa- during and immediately after I have been tigue must be respected and rest breaks exercising. I cannot write or push buttons, taken as needed.
and I also have difficulty lifting a glass to Regardless of the exercises or activities you my lips to drink. Using a straw helps me choose, there are some rules to remember: reach the glass, and drinking very coldwater can help improve how I feel.
• WHEN IN DOUBT – DON'T! "Individuals with MS need to be reas- • IF IT HURTS – STOP! sured that any symptoms brought on by ex- • MORE IS NOT BETTER! ercise and overheating are temporary and • FASTER IS NOT BETTER! resolve completely, once you have rested • YOUR ACTIVITY SHOULD BE A CHAL- and cooled down. They also need to know LENGE, BUT NEVER A STRUGGLE! that getting to this point, does not damagethem in some way, though it certainly feels that it would. Experiencing heat-related brought on by Exercise or Heat
symptoms isn't an ominous sign, but it Maureen Shanahan is a nurse with MS should be taken as a warning to be cau- and client of Pat Provance (the author of tious. People with MS who may experience this article). Maureen notes the impact of this symptom need to protect themselves "Uhthoff's symptom," which is a temporary from falls and other accidents. They also worsening of vision resulting from exercise should consider this when setting realistic or an increase in body temperature. Exer- goals, and have someone check on them cise (which naturally increases body tem- while exercising. The good news is that it perature) and other factors contributing to has been my experience that the tolerance feeling warmer – such as one's surrounding for heat and exercise is improved over time, temperature or taking a hot bath – can also and seems to correlate with endurance." cause a transient worsening of other (non- As noted in Part I of this article series, visual) symptoms, including weakness and individuals who are heat-sensitive may use numbness or tingling sensations.
cooling techniques to help avoid overheat- Maureen explains, "Once the internal ing and reduce the effects of heat-related temperature is raised in most persons with worsening of symptoms. Among others, multiple sclerosis, performance begins to strategies include taking a cool bath, Symptom Awareness: Mobility Independence and Safety
sucking on ice chips, or using cooling de- be easily done at home with a focus on care- vices such as collars or vests.
fully paced, functional strengthening activi- Editor's note: Individuals with MS are
ties. Just call it "Back to the Basics!" Then advised to stop, rest, and cool down if they when you're stronger, you might want to begin to feel such symptoms as weakness, supplement your exercise program by join- tingling, visual issues, lack of concentration, ing a program in your community, to en- or other neurologic changes during exercise.
hance the fun and fitness. Good luck! N Exercise Equipment Considerations
This article is one of a series of three that have been "Try before you buy!" Many tempting written and generously provided to MSAA by advertisements lure us into purchasing that Patricia G. Provance, PT, MSCS. Pat is an esteemed piece of "miracle" exercise equipment. If member of MSAA's Healthcare Advisory Council. you are seriously considering making amajor purchase, an evaluation by a PT is ad- Pat has 37 years of experience in physical rehabili- vised so that you can be assessed and tation, having been in clinical practice since 1971. trained by a professional. A treadmill, for In 1982, she started the first MS Rehabilitation example, needs to be both safe and user- Program in Maryland at The Union Memorial friendly, with features such as side hand Hospital, in addition to her orthopedic caseload. In supports, a wide belt, low ramp-up speed, 2000, Pat joined the University of Maryland easy controls, etc. Additionally, it does not Medical System at Kernan Hospital to dedicate her need to go faster than four mph if you will practice to MS, and continued as a clinical consult- just be walking. An exercise bike can help ant with the Maryland Center for MS until her with overall leg strength and conditioning – "semi-retirement" in December 2006. She became but it won't improve your "wobbly walk- an MS Certified Specialist in 2005 and continues ing," because you are exercising while sit- as a clinical consultant with the National Multiple ting! Hand weights are popular, but can be Sclerosis Society. Pat is also an active member of exhausting. A "Theraband," which is a spe- The Consortium of Multiple Sclerosis Centers. cially designed, large elastic band, is She currently is teaching and consulting on MS cheaper, more portable, and you can adjust care to patients and professionals throughout the the resistance for each exercise.
country. Publications include the clinical bulletin,"Physical Therapy in Multiple Sclerosis Rehabilita- tion," and co-authorship of the textbook, Muscles, In a recent MSAA survey, more than Testing and Function with Posture and Pain, one-third of the respondents reported that 4th and 5th editions. they rarely or never exercised! Hopefullythis article will help broaden your horizonsto understand that exercise does not have tobe an exhausting workout, but instead, can

Michael Crisomia (left) and daughterSophia, whose schoolpaper (below and op- posite) about helpingher father deal withhis MS earned her By Helping
three awards – andtouched her fatherand others deeply. In a letter sent to MSAA, proud father Michael Crisomiatalks about his daughter Sophia,who submitted a paper on "Ican make a difference by…" fora contest at her school. Shewrote about how she wouldmake a difference and be a goodcitizen by helping her dad.
Michael has MS, and to followare excerpts from his letter toMSAA.
"When I found out about Sophia's paper, I was amazed andinspired that my little girl, 7years old at the time, wouldeven think of writing about meand my MS. I was so touched byher words and how she under-stands the ways in which thisdisease affects me, that I criedwith happiness as I read herpaper. Sophia is one of my twolittle angels, with the otherbeing my younger daughter,

Stories to Inspire: Making a Difference By Helping Her Dad
Joanna – who is just as helpful,understanding, and loving.
"Sophia's paper won First Prize in the contest at herschool. Her paper was then en-tered in a contest held by theDelaware PTA, where she wonFirst Prize again, and receivedan Award of Excellence in Liter-ature along with a medal.
"I can't express just how happy this made me feel! I readher letter often, but it's not justthe words that she wrote; sheacts this way all of the time.
She is a blessing to me, and ifshe can inspire others… thiswould be awesome!" N "Do you know how I can make
a difference? I will be a good
citizen by helping my dad. I will
help him walk."
– Sophia Crisomia
The A to Z of
Living Well with Chronic
Fatigue Syndrome and
Written by Carol Turkington Fibromyalgia: What Your
and Kaye D. Hooper, RN, Doctor Doesn't Tell You…
MPH, MSCN; in collabora- That You Need to Know
tion with Rosalind C. Kalb, Written by Mary J. Shomon PhD, and Nancy Holland, Published by Collins Living EdD, RN, MSCN MSAA Book #1
Published by Checkmark Books
MSAA Book #157
The symptoms of chronic fatigue syndromeand fibromyalgia often overlap with those of This encyclopedia-style guide is an excellent MS – and some individuals have been diag- resource that features more than 500 entries nosed with these conditions concurrently.
relating to such topics as MS research, the im- This book helps people who are suffering mune system and MS, possible causes and en- from pain, fatigue, cognitive issues, and sleep vironmental triggers, as well as treatments, problems by offering treatment options and symptoms, and therapies. The appendices in- tips for developing a recovery plan.
clude organizations and MS centers for assis-tance, treatment, and research.
MSAA Lending Library
Finding the Joy in Today:
If you would like to borrow any of the books Practical Readings for Living
featured in this column or any other book in with Chronic Illness
MSAA's Lending Library, please send us your Written by Sefra Kobrin Pitzele name and address. We will send you an applica- Published by Hazelden tion and a list of books for the Lending Library. MSAA Book #42
MSAA and its clients greatly appreciate any dona-tions made to help build the Lending Library. If This uplifting publication provides daily you would like to donate a book to the Lending Li- readings to offer inspiration and hope, using brary you need only send it to us at the address consecutive dates of the year in place of below. Please address all correspondence to: page numbers. Its author, Sefra KobrinPitzele, holds positions on two national MSAA Lending Library
health associations, co-founded a magazine 706 Haddonfield Road
for people with chronic health conditions, Cherry Hill, NJ 08002
and speaks at conferences as well as on (Please reference book number)
radio and TV shows.

Source: http://www.mymsaa.org/PDFs/MSAA.MotivatorWS09.pdf