ms newsletter 0 fall 2013

InforMS Fall 2013Volume 29, Issue 4Rocky Mountain Multiple Sclerosis Center

“I would be in Fiji right now if I had a nickel for every time I heard that very phrase on

a day when I felt absolutely miserable.” MS has many troublesome symptoms, and

some can’t be seen with the naked eye.by Patricia Daily

Page 8

YOU DON’T LOOK SICK

“” INSIDE

Defending Social Security .................................Page 2

RMMSC Hydrotherapy ........Page 5

A Hydrotherapy Story .........Page 6

MS Center Annual Gala Honors Nancy Davis and Celebrates Hollywood ..........................4

2 F InforMS F Rocky Mountain MS Center

8845 Wagner Street Westminster, CO 80031

EditorPatricia Daily, LCSW [email protected]

DesignCorey Nikoloric

[email protected]

InforMS is published quarterly by the Rocky Mountain MS Center.

No part of this newsletter may be reproduced in any format without prior written consent

from the publisher. All requests for permission to reprint must be made in writing.

Board of DirectorsPaul Wisor, JD, Chairman

Brett Hanselman, Vice-ChairmanJerry Buck, Co-Treasurer

Jennifer Fackler, Co-TreasurerJames A. Mills, Jr., Secretary

Del ArnoldScott BakerTod Baker

Ryan ChaseChris FickelLisa Hunter

Brian LuptowskiJennifer MayesJennifer NelsonCasey Nikoloric

Michael PersichetteAnne Marie Pewterbaugh

James TarpeyJeff Wren

Kevin Zwick

Ex-Officio MembersDerek Sevier, Past Chairman

Sebastian Roesinger, MS YPN ChairSandra Walling, Friends of MS CenterTimothy Vollmer, MD, Medical DirectorRenelle Darr, Interim Executive Director

RMMSC Mission Statement:To improve the lives of people with MS and their families through care, support,

education and research.

ROCKY MOUNTAINMS CENTER— the answers begin here —

continued on page 6

by Thomas Stewart, M.S., J.D., PA-C During the last year, a number of high profile media sources have criticized Social Security Disability programs. Most recently—and perhaps most damag-ingly—was a program on 60 Minutes, which presented one-sided, anecdotal information about how non-disabled people are able to receive SSDI benefits, thereby swindling the American taxpay-er. Certainly abuses have occurred and should be exposed. However, to focus only on abuses is to miss the larger story: for many people who are truly disabled—including many thousands of people with multiple sclerosis—SSDI benefits provide their only safety net. It is home-saving, family-saving and life-saving.

Social Security imposes the most restrictive dis-ability standard in the developed world. Such strict eligibility require-ments mean that no more than four in ten applicants are approved for benefits. As such, the number of people who cannot work due to significant health problems and yet are denied Social Security Disability benefits is much more concerning than the few who may wrongly re-ceive benefits despite be-ing able to work. (Media reports that emphasize this aspect of the deter-mination process are rare.) Demon-strating eligibility requires extensive medical evidence, and many individuals are denied benefits despite significant disabilities and chronic illnesses. This is a particularly important issue for the MS community because the most disabling symptoms—fatigue and cognitive prob-lems—are often unsupported by objec-tive medical evidence.

As is often pointed out by the media and some politicians, many more people receive disability benefits now than in 1970. The growth in benefits is some-

times shown in absolute terms—not as a percentage of the working population—which creates the illusion of an out-of-control government giveaway. This was, however, an entirely predicted change as described by Social Security’s actuar-ies as early as 1994. Overwhelmingly, the growth in the ranks of the disabled is due to three demographic factors: 1) a greater number of people entering the work force, particularly women; 2) the aging of the baby boomers into high disability years, and 3) the increase in Social Security’s retirement age.

The growth in disability beneficiaries is not due to a relaxation of disability standards. In fact, the percentage of ap-plicants awarded benefits has declined since 2007 from 39 to 33 percent at the initial determination level. On appeal, that per-centage drops even more dramatically to 10 percent over that same period of time. This decline occurred despite a particularly high unemployment rate.

Though critical, the financial support paid to disabled people is mod-est. The average is just over $500 per month for Supplemental Secu-rity Income beneficiaries (welfare) and approxi-mately $1,130 per month

for Social Security Disability Insurance beneficiaries (people with a sufficient work history). Once awarded benefits, there are very strict rules that prevent earning any additional income. Indeed, Social Security provides very generous return-to-work programs that incentiv-ize those who are able to do so. As MS treatment improves and some recipients are able to attempt a return to work, the need for Social Security benefits will increasingly be a temporary, transitional solution for the MS community. Regard-less, no one is getting rich off of Social

Defending Social Security

To focus only on

abuses is to miss the

larger story: for many

people who are truly

disabled—including

many thousands of

people with multiple

sclerosis—SSDI

benefits provide their

only safety net

In two pivotal trials 35% and 43% of patients taking AMPYRA responded to treatment vs. 8% and 9% of patients taking placebo.

Talk to your doctor to see if AMPYRA may be right for you.

AMPYRA® (dalfampridine) is indicated as a treatment to improve walking in patients with MS.

This was demonstrated by an increase in walking speed.

IMPORTANT SAFETY INFORMATIONDo not take AMPYRA if you have ever had a seizure, or have certain types of kidney problems, or are allergic to dalfampridine (4-aminopyridine), the active ingredient in AMPYRA.Take AMPYRA exactly as prescribed by your doctor.You could have a seizure even if you never had a seizure before. Your chance of having a seizure is higher if you take too much AMPYRA or if your kidneys have a mild decrease of function, which is common after age 50.Your doctor may do a blood test to check how well your kidneys are working, if that is not known before you start taking AMPYRA.AMPYRA should not be taken with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same.

AMPYRA® is a registered trademark of Acorda Therapeutics®, Inc. AMPYRA is marketed by Acorda Therapeutics, Inc. and is manufactured under license from Alkermes Pharma Ireland Ltd. © 2013 Acorda Therapeutics, Inc. All Rights Reserved. 05/13 AMP2446

AMPYRA may cause serious allergic reactions. Stop taking AMPYRA and call your doctor right away or get emergency medical help if you have shortness of breath or trouble breathing, swelling of your throat or tongue, or hives.

Please see the full Patient Medication Guide on the following page.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Visit Ampyra.com to fi nd out more about a FREE* TRIAL.

*Limitations and Restrictions apply.

Walking better mattersOnly AMPYRA® (dalfampridine), an oral medication, improves walking in people with multiple sclerosis (MS).

AMPYRA is not a disease-modifying treatment (DMT).DMTs are not indicated to treat walking in people with MS.

AMPYRA can be taken with or without a DMT.

In people with MS—

AMP2446_IMS.indd 1 7/9/13 5:15 PM

AMP2446_IMS.indd 2 7/9/13 5:15 PM

Rocky Mountain MS Center F InforMS F 5

WAYS TO START YOUR PROGRAM • Call the Rocky Mountain MS Center at (303) 788-4030.

• Call your local recreation center or YMCA.

• Talk to your physical or occupational therapist about designing a program appropriate for you.

• Ask your health care provider about local hydrotherapy programs offered in your area.

RMMSC classes are held at public swimming pools and open to people living with MS at minimal or no cost. Some programs offer financial assistance. n

Hydrotherapy Strengthens Body and Mind by Monica Tall

“We work on strengthening everything that moves,” said Harrison. “The water is gentler on people’s joints, and allows them to move with less pain and force.”

Hydrotherapy can also be used to improve function. For example, a participant might work on strengthening a golf swing, practice walking, or learn how to sit and stand correctly.

THE BENEFITSParticipants can be more independent in the water because the water’s resistance can allow them to perform more controlled movements. Because the water’s buoyancy and hydrostatic pressure makes it easier to stand, people also have the opportunity to exercise in an upright position and practice higher level skills.

Hydrotherapy classes use a variety of aquatic techniques in both deep and shallow water

and incorporate stretching and strength training and improve balance, coordination and endurance. Instructors can also work with individuals to address specific needs.

Other hydrotherapy benefits include: • Increased mobility • Aerobic conditioning without heat liability

• Increased muscle strength

• Increased range of motion and flexibility

• Improved self-esteem

• Improved endurance

• Socialization opportunities

To participate in hydrotherapy you don’t have to be able to swim. “If you are scared of the water or cannot swim, you can still participate,” said Harrison. “There are tools and volunteers to keep you safe in the water. You can stay in the shallow end of the pool as well.”

The goal of hydrotherapy is to help people improve their functioning, and become stronger and more flexible.

Hydrotherapy (aquatic exercise) is a water exercise program that is adaptable to people of all ability levels. “People can do more in water,” says Michele Harrison, a licensed physical therapist at the Rocky Mountain MS Center who has more than 20 years of experience working with people with MS. “Hydrotherapy is for people who want to work hard or who need to get out of their wheelchair.”

According to Harrison, aquatic exercise can be used for different types of physical training. Participants work in the water with a licensed physical therapist or another licensed instructor to improve their strength, balance, coordination, and endurance. The goal is to help people improve their functioning and become stronger and more flexible in body and mind.

TURN THE PAGE TO LEARN MORE FROM A HYDROTHERAPY

PARTICIPANT’S PERSPECTIVE.

Visit www.mscenter.org to learn more about

hydrotherapy.


Social Securitycontinued from page 2

Security Disability programs; working would almost always be more advantageous than receiving disability benefits. Additionally, many SSDI beneficiaries are terminally ill. Approximately one in five recipients dies within five or six years of beginning to receive disability benefits.

It is easy to judge others; even some in the MS com-munity are occasionally suspicious of others with MS who receive disability benefits, especially in the absence of obvious disability. Of course, as described in this issue of Informs, there are many invisible and yet potentially disabling MS symptoms.

There is an important deadline to know about. The Disabil-ity trust fund is financially strained and, by 2016, there will be a shortfall—so changes will be needed. There are many sensible ways to address the shortfall. One is for Social Security to implement an ac-counting change, altering, by a small fraction, the allocation of benefits between the Dis-ability and Retirement Trust Funds. Such reallocations have occurred eleven times in the past—and in both directions. Regardless of what solution is implemented, reforming the Disability Program must be coordinated with changes in Social Security as a whole, par-ticularly retirement benefits.

There are many who would like to see Social Security’s Disability program sharply curtailed or even eliminated. The MS community, indeed the entire community of people with chronic diseases, needs to advocate for Social Security Disability programs, including administrative sup-port for the program. Those

receiving benefits need to speak up about how dis-ability benefits have helped them and those who are working need to realize that these benefits may someday be their only safety net and should defend the program wherever possible. Pay atten-tion to the politics involved; contact your Representative or Senator and make sure they understand that disabili-ty benefits are vital to protect those who lose the ability to support themselves.

If you are in the process of applying for Social Security benefits, you should obtain expert legal counsel at any stage of the process. The Rocky Mountain MS Center offers a free consultation, and, where appropriate, rep-resentation to people with MS nationally. If we can help you early enough in the pro-cess, there may be no charge for representation.

If you would like a free consultation, please call (720) 301-9708 to schedule an appointment. n

Peggy Flynn was not interested in swimming before she was diagnosed with MS.

“Before I had MS, I was a computer programmer. I didn’t get into exercise programs,” said Flynn.

Now Flynn goes to the Rocky Mountain MS Center’s hydrotherapy or aquatic exercise classes every Monday and Thursday. She’s been participating for five years.

“I wish more people would participate because I know it would benefit a lot of people like it’s benefited me,” said Peggy.

Since Peggy has been attending hydrotherapy classes, she has increased strength in her core, legs, and overall body, which gives her the ability to keep walking. She has also noticed increased strength when working in the kitchen. With more core strength, she puts less weight and stress on her arms.

In addition to strengthening her body, Flynn has strengthened her mind. She is

“more at peace” and positive about her MS now than she was before she participated in the hydrotherapy program.

The Rocky Mountain MS Center’s hydrotherapy program allows Flynn to be part of a community that supports her needs, understands her challenges, and gives her joy.

For instance, the participants and volunteers sometimes go to dinner after class. Every month they celebrate participants’ birthdays with snacks, coffee and homemade birthday cake made by Michele Harrison, Rocky Mountain MS Center’s hydrotherapy coordinator.

To find hydrotherapy or aquatic exercise classes for people with MS near you, visit Multiple Sclerosis Association of America’s website, www.mymsaa.org, or National Multiple Sclerosis Society’s website, www.nationalmssociety.org. n— Monica Tall

Peggy Flynn Dives Into Hydrotherapy

Peggy Flynn, front, says the hydrotherapy community supports her needs, understands her challenges, and gives her joy.

Contact Us Administration

303-788-4030Medical Appointments 720-848-2080 x 3The King Adult Day

Enrichment Program 303-433-6887RMMSC@ MCPN 303-360-3712

RMMSC@ Anschutz Medical Campus 720-848-2080

Hydrotherapy 720-273-7461

Social Security Legal Clinic 720-301-9708

Tissue Bank 303-788-4030

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MS One to One™ isn’t your typical program. It’s a conversation that starts with you. We offer dedicated services to people with MS and MS health care providers.

Round-the-clock access To ensure that patients get the support they need, when they need it, an MS One to One™ Nurse is always available to talk, 24 hours a day, 7 days a week.

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continued on page 9

WHEN PROBLEMS PERSISTAcute illnesses disturb your life temporarily; they come, but then they go. The problems they cause are primarily physical and usually time-limited. Chronic illnesses change your life. Chronic illnesses are medical problems that linger and because they don’t go away, they affect more than just the physical body. They cause disruptions and reorganizations in your psychological, and social functioning as well.

The physical impact of a chronic illness includes what symptoms do to your body, how they complicate and disrupt what you want and need to do physically, and the treatments and medications you use to manage them.

Chronic illnesses are

accompanied by a complex range of emotions, from grief and sorrow to guilt and anger. They can disrupt your self-image and self-confidence, especially when they significantly alter what you can do. They impose psychological challenges that include accepting limitations, developing realistic expectations, learning to manage anxiety about the future, and (for extra credit) coming to some sort of workable conclusion about why this all happened to you in the first place.

Chronic illnesses also have an impact on your relationships and your role in society. They may change what you can do in the world with respect to employment and recreational activities. They may change your circle of friends. Very obvious

MULTIPLE SCLEROSISNOW YOU SEE ITNOW YOU DON’T

A symptom is something experienced by a patient as a result of a medical problem. It is a signal to warn us that something may be amiss with our health. Some diseases, like

hypertension, are known as silent killers. Although they cause severe health problems, they have subtle or no symptoms associated with them to alert people to their presence. Other medical problems, for example a spinal cord injury, have very visible physical manifestations. That there is a medical problem is obvious to everyone. However, some medical conditions such as migraines, cause symptoms that interfere with life and health but are not usually visible to others. Medical problems that have invisible symptoms are frustrating because others often fail to recognize the limitations that they impose and often assume that people are able to do things that they actually can’t do.

Multiple sclerosis is a chronic neurological disease that can cause silent, visible and invisible symptoms. This issue of InforMS focuses on the different kinds of complications that these different presentations cause for someone living with MS.

by Patricia Daily


Symptomscontinued from page 8

symptoms can provoke changes in how people treat and react to you and what they expect from you.

How big an impact a chronic illness will have on any one of these areas and on all of them in combinations, is influenced by the type and magnitude of symptoms that come with it.

MS: AN OVERVIEWMultiple sclerosis is a chronic neurological illness that looks different on each person who has it. How it affects someone will depend on what part of the central nervous system is damaged. MS can cause a range of visual, cognitive, sensory and motor symptoms. Some illnesses have patterns of symptoms that develop along a time line. There are specific symptoms in the beginning and different symptoms as the disease progresses, so you can sometimes tell where someone is in a disease course by looking at the

symptoms they have. MS is different because it doesn’t “progress” in any particular way and you can’t usually tell, by looking at a list of symptoms, how “bad” someone’s MS is. That someone is using a wheelchair or a cane doesn’t necessarily mean they have “worse” MS than someone who is not: it does mean that they have damage in a different part of the central nervous system (CNS). Some people are unable to walk not because they have “bad” MS but because they have a little MS in a bad place.

Sometimes MS symptoms are chronic and sometimes these become progressively more severe. Sometimes symptoms are relapsing-remitting, which means they come and go, and sometimes symptoms go away completely. Although symptoms may go away, the disease process in the central nervous system does not, so the presence or absence of symptoms doesn’t tell you much about the actual state of the disease. The absence of symptoms doesn’t mean you are “better” and the presence of symptoms doesn’t mean you are “worse.”

There are at least nine disease-modifying

therapies on the market that slow the progression of the MS and it is generally recommended that all people who have a relapsing form of MS use one of them. None of these medications cure MS but all of them, to varying degrees, help contain how much damage it causes in the central nervous system. The medications have different routes of administration, ranging in complexity from daily injections to monthly infusions and, more recently, to three different oral drugs. All the medications are expensive, most of them have side effects, and some cause rare but serious adverse events.

SILENT MS: OUT OF SIGHT, OUT OF MINDPeople are diagnosed with MS because they have symptoms that lead someone to suspect a neurological problem. Clinical exams and different diagnostic tests, especially MRI, are then done to confirm the diagnosis. To receive a diagnosis of MS, a person has to have

continued on page 10

Signs & Symptoms Consistent with Demyelinating Disease Visual Blurred vision; Unilateral loss of vision;

Oscillopsia; Diplopia (double vision)

Motor Trunk/Limb weakness; Spasticity; Hyperreflexia; Gait disturbance; Balance problems

Sensory Numbness; Dysesthesias (tingling, burning and abnormal sensations); “MS hug”; Trigeminal neuralgia (facial pain)

Cerebellar Tremor; Ataxia; Incoordination

Urinary urgency, frequency, and retention; Incontinence; Frequent UTIs; Constipation; Impotence; Anorgasmia

Impairment of memory, Concentration, attention, and/or processing speed; Depression; Irritability; Anxiety

Fatigue Prominent intractable fatigue with no other cause

MULTIPLE SCLEROSISNOW YOU SEE ITNOW YOU DON’T

Bowel/Bladder and Sexual Function

Cognition and Mood



symptoms, history, clinical exam, and laboratory findings that support the diagnosis.

Because early on, MS usually has a relapsing-remitting presentation—that is, symptoms come and then they go—sometimes after diagnosis a person’s symptoms will go away entirely and stay away. On the surface this is ideal—an illness with no symptoms and minimal physical demands would seem easier to manage on every level and generally it is. The physical, psychological and social consequences are often most troublesome at diagnosis, but tend to subside as the symptoms do. The most significant physical demand may be adherence to a medication regimen.

However, for some people the absence of symptoms can foster denial and complicate psychological adjustment. It can cause people to think they do not actually have MS or have a very mild (benign) form of the disease that doesn’t

require treatment. While it is true that someone can be misdiagnosed and that some people do have a benign form of MS, misdiagnosis is not common and benign MS is much less common (perhaps 10% of people with MS) than we used to think. It is now established that 90 to 95 percent of MS disease activity in the brain is asymptomatic and does not cause the patient to experience symptoms, so the absence of symptoms does not mean the absence of disease.

People with silent MS sometimes stop taking medication because it just doesn’t seem necessary and others make the choice not begin a treatment at all. In either case it is recommended that they still receive neurological follow-up care and regular MRIs to ensure that the disease isn’t silently progressing, but if someone has a lot of denial, they might not see the need to comply with even that minimal demand.

Sometimes MS symptoms stay quiet for a long time and people don’t begin to experience them again until they have developed significantly more CNS

damage. We can’t fix the damage caused by MS; we can only try to prevent it. At a minimum, it is important for someone with asymptomatic MS to get regular neurological evaluations to ensure that the MS isn’t progressing silently.

VISIBLE MS: SEEING IS BELIEVINGObservable physical impairments present challenges in the physical, psychological and social aspects of life. Some MS symptoms, for example problems with walking, hand tremor, or slurred speech, are very visible, troublesome and disruptive. They can complicate your physical functioning and interfere with everyday tasks such as going to the store, drinking a cup of coffee or ordering something over the telephone. They alter your social identity when they interfere with employment, hobbies, recreation, and restrict the things you want to do.

They can also change how others interact with you. Our society abounds with stereotypes about appearance—very tall people play basketball, physically beautiful people have a great social life, the list is endless. We vastly overestimate what we can actually know about someone based on how they look. We take for granted that we can tell if someone is healthy just by looking and when someone is different from the norm we make snap judgments about the cause. If you use a wheelchair or have balance problems it is common for other people to jump to erroneous (and sometimes ridiculous) conclusions about why you do and what can be expected of you. One of the big hurdles for people with visible impairments is to manage the misconceptions that others may have about them. A woman with MS who has used a wheelchair for years reports, “Strangers are surprised to know I have a husband and kids, drive a car, have a good job and can order off of a menu by myself. The thing I can’t do is walk.”


Youth Ski Retreat January 17-20, 2014This is a NEW program designed for ages 12-17 who live with MS. Two days of skiing and riding on the slopes of Breckenridge. Based out of our rustic cabin. You’ll have fun, make new friends and challenge yourself. Other activities may include snowshoeing, and ropes course.

Cost $650.00 (ask about our scholarship program) includes staffing, meals, lift tickets, rental gear, individual professional ski lessons, transportation to/from Denver, and 24 hour BOEC staff support.

Save the Date: Adult Winter Ski Trip March 1-5, 2014

Find your Adventure Within at the Breckenridge Outdoor Education Center A cooperative effort of the BOEC and the Rocky Mountain MS Center

To register please call or email Claire DiCola at the BOEC (800) 383-2632 or email [email protected] • www.boec.org.



Changes in your physical and social world create psychological challenges as well. They can cause anger, grief, guilt, depression, and impact self-esteem. It can take a long time to find a comfortable way to present yourself in the world and to accept assistance without feeling diminished, damaged and dependent.

INVISIBLE SYMPTOMS: THERE IS MORE TO THIS THAN MEETS THE EYEInvisible symptoms affect you and how you function in the world, but they are not evident to other people. Although they alter what you can do, they don’t necessarily alter what other people expect you to do. Vision impairments, numbness, fatigue, and cognitive problems are a few of the common problems caused by MS that other people can’t see and sometimes do not even accept as genuine MS symptoms.

Nevertheless, invisible problems have a big impact on physical, emotional and social aspects of an MS person’s life. A 2008 study that compared the life impact of visible verses invisible MS symptoms found that, at least in the first 11 years, invisible symptoms were significantly more likely to cause health distress.

Invisible is a word that has multiple meanings. It can mean “to obscure or hide ” like the magic cloak that Harry Potter used to prevented other people from seeing him. Invisible can also mean “imaginary, made-up” like the invisible friend you might have had when you were five. MS symptoms can present as both kinds of invisible—those that are hidden and those that feel made-up.

Visual disturbances, sensory problems such as numbness, and bowel and bladder problems are MS symptoms that are apparent and troublesome to the person who has them, observable to your doctor on exam, but unseen by the people around you. These are examples of the invisible-hidden symptoms.

The physical impact of these invisible-

hidden symptoms can be quite life altering, but in more subtle ways. Visual problems can make it hard to read and impossible to drive. Numbness can make it harder to button buttons, tie shoes, and type, and make it easier to burn your fingers because you can’t feel heat. You might be more apt to drop things or bump into tables and this can cause you to look and feel like a klutz. Invisible-hidden problems can be emotionally draining because they may require you to explain yourself or talk about MS and some people really don’t like to do that.

Although others don’t see these problems, once you explain that you have blurry vision when you get overheated or numb fingers that make it hard for you to pick up small objects, they usually accept them as legitimate MS symptoms. However, even though you’ve explained to someone that you have a problem, because they can’t see it, they may forget it exists. It can be tedious, frustrating and demoralizing to have to remind someone repeatedly


“I’m forever better because of the

MS Center.”— Sarah R., artist living with MS

Read Sarah’s story and give online today at www.mscenter.org


that there is something “wrong” with you. Some problems, for example vision, also fluctuate, and it can also be hard to explain that sometimes you have the problem and sometimes you don’t.

Other problems, especially those involving bowel and bladder function, are embarrassing and people who have them may not want to explain them. They may cope with them instead by avoiding situations where the problem could become evident. This can lead to restrictions of social activities, rumors that you’ve suddenly become anti-social or may be depressed, and a generally shrinking world.

Although fatigue, depression, cognitive problems, and pain are also common MS symptoms that are invisible, in addition, they are hard to measure and are not easily identified in the doctor’s office. These are examples of invisible-made-up symptoms. You can poke someone with a pin to see if they are numb, but

there is no simple test to prove that someone has MS fatigue. Because these problems are both hidden from other people and hard to quantify, it is not uncommon for the person experiencing them to wonder (at least occasionally) if they really are MS symptoms or if they are making them up, exaggerating their severity, or using them as an excuse.

Some invisible problems such as blurry vision are recognized as abnormal experiences that don’t happen in everyday life unless there is a problem. When something is recognized and validated as an MS problem, it changes other people’s expectations of what you can do, and gives you permission to change your expectations of yourself.

Fatigue, mood changes, and forgetting things at the store are not abnormal experiences—they are common complications of life on earth. When they occur it’s hard to tell if they are symptoms of MS or further evidence that you simply are doing too much or not managing your life very well. If you tell someone that you have fatigue, there’s a good chance they will tell you

that they are tired, too. They may not see your fatigue as an MS symptom but rather an indication that you are lazy, lack motivation or don’t really want to have dinner with them, and they may not change what they expect from you. When there is no external validation of these invisible symptoms, it can be very hard for the person experiencing them to believe they really are MS symptoms and to modify what they expect from themselves. Instead of recognizing that they probably need to do less, they may decide that they really just need to try harder, stop feeling sorry for themselves, or quit being lazy.

The identification and acceptance of invisible-made-up symptoms is also complicated by the fact that they can have multiple causes, some of which stem from MS and some from other sources. You can have fatigue from doing too much, fatigue from sleeping poorly and fatigue from MS, all at the same time. These problems also develop slowly, and people make minor adjustment automatically, so it can be hard to recognize, over time, that a problem has grown.

There are lots of misconceptions about MS, and one of the most common is that the more visible a problem is, the more serious it is. If a problem isn’t visible, it isn’t serious. It is common to hear someone minimize the impact of invisible symptoms with the statement, “I’ve done really well with my MS. I haven’t had any problems at all except some cognitive things and fatigue.” Invisible-hidden and invisible-made-up symptoms are real MS symptoms and can be just as life altering and life-complicating as visible symptoms.

Another misconception that hinders the physical and emotional management of invisible symptoms is the belief that obvious physical handicaps are harder to manage than invisible problems. Therefore, you aren’t allowed to feel bad or struggle with your problems because someone else’s problems are worse. But you can’t assume by looking



Scientific Advances in MS Research & Treatments

Saturday, November 23, 2013 • 8:00 am –12:30 pmSummit Conference and Event Center 411 Sable Blvd. • Aurora, CO 80011

This seminar will delve into the dramatic advances in MS research and ongoing clinical trials that are exploring combination therapies and a host of other potential MS

treatments that could change the future of MS for everyone

To register free of charge for this seminar visit www.mscenter.org or call 303-788-4030.

ROCKY MOUNTAINMS CENTER— the answe� begin here —

The main steps of the Kurtzke Expanded Disability Status Scale (EDSS) 0 Normal neurological findings

1 No disability and minimally abnormal examination findings

2 Minimal disability in one functional area (see page 9 for list)

3 Can walk unaided, but has moderate disability in one of the functional systems or mild disability in three or four areas

4 Fully ambulatory, up and around most of the day, but has severe disability in one functional area

5 Able to walk unaided for at least 200 meters, but disability (without accommodations) may prevent full-time work

6 Requires cane, crutch or other aid to walk 100 meters, with or without rests

7 Can cover no more than 5 meters, even with walking aids, can propel wheelchair and transfer without assistance

8 Restricted to chair, bed or wheelchair, arms functional but requires assistance with transfer

9 Helpless and bedridden, arms not functional, but can eat and talk

10 Death due to MS (uncommon)


that the problems are worse—you can probably assume that the problems are different. Some people who have primarily spinal cord MS lesions do not have fatigue, so although they might have trouble walking, at least they can stay awake.

The misconception is further compounded by the fact that one of the most commonly used measures to assess MS disability, the EDSS (Expanded Disability Status Scale) focuses primarily on motor symptoms and mobility, and not on the equally disabling symptoms of cognitive problems and fatigue. How far you can walk is easier and quicker to measure accurately than how well you can think, so the EDSS is commonly used to measure disability and track disease progression, for example in clinical trials (see chart at right). However, as a measurement of the overall impact of MS on someone’s life, it is about as accurate as measuring a child’s total academic progress in sixth grade by counting how many words he can spell.

Understanding and believing invisible symptoms is hard enough. Managing them is even harder. Fatigue, mood disturbances, cognitive problems, and pain are complex problems. Each one of them can have multiple causes. There are at least a dozen causes for fatigue alone. These problems can also compound and complicate each other. At a minimum, it is important to get a good diagnosis and to treat the right problem. These problems are also complicated to treat. There aren’t many sure-fire, one size works for all solutions, so trial and error is often the way that treatment progresses. Medications are one treatment approach. Life-style modifications are another. A consistent exercise regimen is highly recommended. Most problems respond best to a combination of approaches. Chronic illnesses have chronic symptoms, so problems are more likely to be improved than removed. It will probably be easier

to find eight partial solutions that each improve a problem by a modest 10 percent than it is to find one solution that improves it by 80 percent.

Experience has taught me that most people with MS learn to live with it more or less successfully, whatever their symptoms, but it is not a simple or quick process. If the bad news is that MS doesn’t go away, the good news is that you have plenty of time to figure out how to manage it. If you are struggling, it’s likely because living with MS is a struggle and not because you are doing it wrong. Whatever your symptoms, MS isn’t easy to manage. Have patience with yourself. n

FOR MORE INFORMATION

The prevalence of different symptoms in 35,000 people with MS, over a period of 30 years ,

go to http://bit.ly/1cGQYAZ

Fatigue and its management, go to http://bit.ly/1cGR7oj

MS pain, go to http://bit.ly/1baKXtj

Mood disturbances, go to http://bit.ly/17bdham

Cognitive problems, go to http://bit.ly/19HRdIp


In the early steps of the scale, small increases in the number of symptoms can cause someone to advance one or more EDSS steps.

After Step 4, the ability to walk is the primary factor in determining EDSS score. Changes in other functional areas after this point, such as fatigue or cognitive function, although they have a definite effect on someone’s well being, do not result in an additional change of EDSS score.

her work to advance scientific research through her research collaborative, the Center Without Walls, and Race to Erase MS fundraising event held each year in Los Angeles. Ms. Davis announced that the Center Without Walls will make a research grant to the MS Center to help determine why Colorado has a high incidence of multiple sclerosis.

After a surprise appearance by Governor John

Hickenlooper, speakers included Christine Buck of the Barnett Family Foundation, who announced that the foundation will fund the Translational Research Program for a second year in the amount of $100,000—thanks to a match from gala attendees. The MS Center's Interim Executive Director, Renelle Darr, also announced a $1.7 million bequest from the estate of Louise Weldon Floeckher

(1928-2012). Her gift memorializes the life of

her son, Nick Cassavetes,


On Saturday, October 26th, 400 guests celebrated Hollywood at the Rocky Mountain MS Center's annual gala. Hosted by co-chairs Barry Hirschfeld and Dean Singleton, the evening raised $325,000 to support the MS Center's programs and services, including the Translational Research program and the Pediatric MS program. Joining

MS Center Community

Diane Writer and Jim Rumsey

presenting sponsor Colorado State Bank were lead sponsors Deb & Bill MacMillan with the Crazy Merchant, The Denver Post, the Grills Family Foundation, Dawn & Steve Huckaby with Meritage Midstream, MDC Holdings, and Novartis. Nancy Davis was honored for 20 years of service to the MS community and

RMMSC Gala Celebrates HollywoodMarcelina Rivera & Rick Pederson

Judy & Charlie McNeilArlene & Barry Hirschfeld

Bertha Lynn & Larry Naves

Back row, left to right: Cindy Farber, Arlene Hirschfeld, Ken Rickel, Nancy Davis, Lynn Palmer, Paul Palmer, Steve Farber Front row: Mariella Rickel, Isabella Rickel


Brett Hanselman, Paul Wisor and

Renelle Darr

Dr. John Grossman & Pam Grossman

Anita & Aaron Azari and Gala Chair, Casey Nikoloric

Christine Buck, Jerry & Julie Buck

Governor John Hickenlooper

Honorary Co-chairs Dean Singleton and Barry Hirschfeld

Andrea & Mark Moon

Cindy Agnew & Ben Victor

Jessica Hypes, Jeff Hypes, Joe McConaty, Robin Thurau,

Katie & Brian Moran

who lived in Colorado and suffered from MS for many years. The terrace at our Vista Grande campus will be named in his honor. Gala guests were treated to hors d'oeuvres and a wonderful dinner from Continental Divine Catering, with wines provided by Republic National Distributing Company, and dance music from jazz band Dressed in Black. Live and silent auctions offered many terrific prizes including a Denver Broncos helmet signed by Peyton Manning and John Elway and an event-filled trip for two to New York City. Auction services were provided by Jim Berz. n

photos by Brian Payne

8845 Wagner StreetWestminster, CO 80031

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ms newsletter 0 fall 2013

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