living with progressive ms · (ppms),thediseaseisprogressive fromthebeginning.thistypeofms...

Living withProgressive MS

© Multiple Sclerosis Society of Canada, 2005, 2008.

: Greenwood Tamad Inc.

Written by: The Medicine Group

Canadian Editing: Nadia Pestrak

Acknowledgements: Thanks also to Jennifer Carstens and Paul O’Connorfor their contributions. Special thanks to Paul Bernard and Marie-ClaudeTremblay. Through their added insight as persons with MS we hope thispublication effectively meets the needs of others with MS.

ISBN 0-921323-95-6

LIVING WITH PROGRESSIVE MS

Multiple Sclerosis Society of Canada, 2008Legal Deposit –National Library of Canada

Design

:Printing Arcade Press

COVER ARTWORKBill MillerOpportunitus 4b

"Representing the potential of pursuing any or allopportunities that are continually available."

Opportunitus 4b is part of a series of works by Edmontonartist Bill Miller, which he calls,‘Chairbrush Paintings.’ Bill, whohas had progressive MS for over 25 years, uses hands-freecomputer technology to create beautiful expressionist imagesfrom photographs of his wheelchair tracks in the snow.For more information about Bill and his work, visit his site:http://www.theartmiller.ab.ca/bluewind/

Table of Contents

Introduction...........................................................................3

Understanding progressive MSWhat is going on in my body ................................................4Different types of MS ............................................................5Diagnosing progressive MS/what to expect ..........................7

Improving quality of lifeSpecialized MS clinics............................................................8Get the most out of visits to your physicians........................9Rehabilitation services ........................................................10Staying healthy: diet, exercise, decreasing stress ................12Asking for help....................................................................15Group support .....................................................................15Educate yourself .................................................................16

Treatment optionsDisease modifying therapies ...............................................17Symptom management .......................................................19Complementary and alternative medicines .........................25A note on family .................................................................26Thinking long-term..............................................................27

AppendixesResource tools.....................................................................28Glossary...............................................................................30

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INTRODUCTIONIf you’re reading this publication, you may have been told thatyou have a progressive form of multiple sclerosis (MS). Adiagnosis of progressive MS can stir up many different feelings.The uncertainty that surrounds MS can make people feelfrightened, vulnerable, frustrated, and even angry. You mayhave many unanswered questions.

This publication is designed to offer you some information andpractical suggestions. We will begin by explaining the basics ofprogressive MS. From there, we’ll look at some simple, yetpractical ways to improve your quality of life. We’ll also focuson some of the major symptoms that individuals may experienceand suggest how these symptoms may be managed. To furtherassist you, we’ve included a glossary of commonly used termsat the end of this publication. Each of the terms found in theglossary are underlined (as is the word symptoms above)throughout the text. This glossary will help you understandwhat these terms mean when talking about progressive MS.

This publication may not answer all of the questions you have,but we hope that it will put you on a path to finding someanswers, locating helpful resources, and increasing your qualityof life. Living with a chronic illness such as MS can be verydifficult. Many people feel that they have ‘lost’ their former selfand former life. While MS may affect many parts of your life, itdoes not need to define who you are and what you have to offer.

UNDERSTANDING PROGRESSIVE MS

What is going on in my body?Your central nervous system (CNS) iscomprised of your brain and spinalcord. The CNS communicates with therest of your body by sending electricalmessages along your nerves. Nervefibres have a layer of protectionaround them called myelin which iscrucial for transmitting thesemessages quickly. We do not yetunderstand why, but with MS, yourimmune system mistakenly attacksthe myelin, leading to scarring ordemyelination. As well as damage tothe myelin, injury to the nerve itself may also occur. As a result,

messages get sent through the bodytoo slowly or not at all. For example,when your brain tells your arm tomove, your arm may be very slow torespond or may not move at all. Thescarring or lesions can occurthroughout the CNS and theirlocation will have some impact onthe symptoms experienced.

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Different types of MSThere are four types of MS — relapsing remitting MS (RRMS), andsecondary-progressive MS, primary-progressive MS andprogressive-relapsing MS. Half of MS patients have RRMS and theother half have a form of progressive MS. The majority of peoplewho develop MS are initially diagnosed with RRMS. Many of thesepeople will eventually shift to a progressive form of the disease.Much research is still being done on the different types of MS.Let’s take a closer look at the different types of MS: [Figuresadapted from Coyle PK, et al. Figure 1.3. Demos 2001.]

1. Relapsing-remitting MS(RRMS). Eighty-five percent ofpeople with MS are initiallydiagnosed with this form.People with RRMS haverelapses (also called attacks,flare ups, or exacerbations)followed by full or significant recovery (also called remission).During remission the disease does not worsen.Notice how the lines in Figure 1 resemble steps. Thisdiagram illustrates initial attacks followed by full recovery,with later attacks followed by partial recovery.

2. Secondary-progressive MS (SPMS) starts as RRMSbefore becoming progressive, where the disease typicallygets slowly worse over time. Attacks often continue tooccur , especially earlier in the cours of secondaryprogressive MS. The transition from RRMS to SPMS isusually very gradual and is often best recognized in


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retrospect. An example would be aslow increase in leg weaknessoccurring in someone who has hadattacks of their MS for many years.Notice how the line in Figure 2increases and continues to climb.This diagram illustrates increasingdisability even after an attack is over.Of people starting with RRMS, 50%will have SPMS within 10-20 years.

3. In primary-progressive MS(PPMS), the disease is progressivefrom the beginning. This type of MShappens in 10–15% of people withMS. It affects men and womenequally, often with a slow onset ofwalking difficulties, and usually

appearing after 40 years of age. It is characterized by anincrease in disability with or without plateaus and occasionaltemporary minor improvements as shown in this figure. 4.

4. Progressive-relapsing MS(PRMS) like PPMS is progressivefrom the beginning, but it has clearrelapses with or without fullrecovery. Notice how the lines inFigure 4 show increasing disabilitywith intermittent relapses. PRMS isthe least common type of MS,occurring in 5% of people.

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My doctor said there is no test to confirmwhether I have progressive MS. How doeshe/she know I have it?There is no test to confirm progressive MS. Instead, thisdiagnosis is based on monitoring how your MS progresses. Thisis done by recording a description of how your symptoms haveevolved over time together with measuring changes on yourneurological exam (your exam is graded according to the EDSSscore). Perhaps surprisingly, other tests such as MRI scans orspinal fluid exams do not indicate the phase of your MS. It isimportant that you let your doctor know if you’ve noticedchanges in your level of functioning. Whether or not suchchanges represent progression of your illness, discussing themwith your doctor will help you to develop the best health carestrategy possible.

What can I expect with progressive MS?It is hard for your doctor to predict what your future holdsbecause MS varies so much between individuals and there isno typical rate of progression or disability. Some people withprogressive MS may, at some point, experience a plateau,where their progression seems to level off. Others may becomevery disabled. Many people fear that they will die from theirMS, but this is very unusual. In the small percentage who havea shortened life span, it is almost always due to complicationsassociated with severe progression. Minimizing suchcomplications will be beneficial for an individual’s health,quality of life, and ability to function.


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The important thing to remember is that there are resourcesevery step of the way to help inform and support you. Thisinformation and support will assist you in finding the bestways of managing your illness, both physically and emotionally.

IMPROVE YOUR QUALITY OF LIFEBefore looking at treatments for progressive MS and symptommanagement, let’s look at some general ways for you toimprove your quality of life. Coping with a chronic illness suchas MS takes planning and can be especially challenging if youexperience fatigue, depression, cognitive difficulties, or havetrouble getting around. Below are some strategies that mightbe helpful.

Try to visit a specialized MS clinicLocated across the country, these clinics offer a wide range ofservices and supports, provided by a multidisciplinary healthcare team including a neurologist with advanced knowledge ofMS. Most MS clinics also have a specialized nurse, whocoordinates initial and long-term management issues, andteaches you about medications (including how to take them)as well as self-care strategies. Ask the MS Society aboutwhether there may be financial assistance to cover some of thecosts of a visit to a MS clinic — either through the MS Societyor through provincial subsidies.

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Get the most out of visits to your physiciansLet’s begin this section by clarifying the roles of a few keyhealthcare professionals:� Family physician: provides general health care, including

check ups, immunizations, and preventative care. Yourfamily doctor can help treat simpler problems (such asurinary tract infections) and can refer you to other specialists.

� Neurologist: as well as determining your initial diagnosis,a neurologist will prescribe MS treatments and medicationsto manage your MS. Regular annual visits are recommended.The neurologist will refer you to other specialists, such aspain specialists, or urologists (for urinary symptoms notrelated to a urinary infection) etc.It’s important to work with your health professionals tomake sure you get the best care. Maximize the value ofeach visit by preparing in advance.

� Think about what you want to accomplish during yourupcoming visit.

� Make a list of important questions or concerns you wouldlike to discuss.

� Tell your doctor about any changes in symptoms (see thetracking graph at the back of the book).

� Review which medications you are taking and when/howyou are taking them.


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� Mention any problems or questions you have aboutyour medications.

� Let your doctor know if you have seen any other healthcareprofessionals recently that she may not know about.

� Consider bringing a friend or family member to yourappointment for support and to help keep track ofanything discussed.

Because MS symptoms can be so diverse, people tend toassume that any symptom is related to their MS. But this is notalways the case. Be sure to see your doctor about symptomsthat are troubling you. Your doctor or community pharmacist islikely a very good source of information, but sometimes he/shemay not be as knowledgeable about MS as you. Help yourdoctor to help you by sharing new information. For instance,sometimes people with MS will bring their doctor informationabout symptom medications their doctor may not be aware of.The MS Society of Canada can assist by offering youinformation on existing symptom management medicationsand techniques. If you’ve tried to partner with your doctor andfind that he/she simply does not offer you the support youneed, consider finding another doctor.

Use rehabilitation servicesRehabilitation, also called rehab, can help you maintain orreach your best physical, emotional, and functional level nomatter what disabilities you have. It can play a very importantrole in enhancing your day-to-day living. One type of rehab,referred to as restorative rehab, aims to regain function after it

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is lost, which can be difficult (for example, reducing spasticityor strengthening muscles). It tends to be focused with measurableresults (for example, improved mobility in a specific limb).

With progressive MS, maintenance or preventative rehab tendsto play a larger role. The goal of this type of rehab is to makeup for lost functions with strategies and techniques that let aperson function at their highest level despite the severity oftheir MS. Maintenance rehab focuses on the whole person andis more general (for example, helping an individual tomaximize independence). Below are a few specific types ofrehab specialists. Be sure to ask your doctor about how eachmight help you.

� Physiotherapists (PTs) evaluate your movement andfunctioning —including your strength, mobility, balance,posture, fatigue, and pain management. PTs can help youmeet the physical challenges and demands of your life. Theycan also suggest an appropriate exercise regime andshould be consulted regarding the proper use of motor aidssuch as orthotics (shoe inserts or braces), canes, crutches,walkers, wheelchairs, or scooters.

� Occupational therapists (OTs) help work on the everyday skills that you need to function as independently aspossible at home and at work. They target upper bodystrength, mobility, and coordination and can help you useassistive technologies to increase ease of access andindependence. OTs offer ways to simplify work or managefatigue and stress. They can also teach you strategies forfunctioning despite thinking, sensation, or vision problems.


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� Psychologists and psychiatrists may be helpful if youexperience cognitive or mood changes. Having to deal withMS can cause depression for some, but the disease processitself can also play a role. Depression can have a powerfulimpact on a person’s estimation of their quality of life. It isimportant to know that while depression is very common inpeople with MS, it is also very treatable throughmedications and psychological therapy.

� Speech and language therapists help work on speechor swallowing problems that result from impaired musclecontrol. Sometimes they are also involved in the evaluationand management of cognitive dysfunction, especially whenit affects communication.

� Social workers assess social needs and can help refer youto resources about income maintenance, insurance,housing, long-term care options, etc.

There are many other resources to help you, includingpsychiatrists, neuropsychologists, dieticians, orthotists, andurologists, to name a few. If you think you would benefit fromany of these specialists, consider visiting an MS clinic, or speakto your doctor about possible referrals.

Stay healthyThere’s so much you can do to optimize your health.� No diet has been proven to impact the course of MS. That

said, it makes sense to choose healthy, nutritious foods. Adiet low in saturated fats (meat, eggs, dairy products) andhigh in monounsaturated fats (canola oil, olives and olive

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oil, nuts, seeds, avocados) and polyunsaturated fats(flaxseed oil, fish and fish oil) may be helpful. Some MSpatients believe that avoiding wheat and dairy productshelps their symptoms. Eating plenty of fruits, grains andvegetables helps to keep your heart healthy, avoidconstipation, and maintain a healthy weight.

In addition, people with MS sometimes wonder whether theyshould take extra vitamins or food supplements. There is noscientific evidence that they will make a difference withperhaps one exception. Researchers are now looking carefullyat vitamin D as a way to possibly reduce the risk of MSdeveloping in the first place. In terms of food supplements,people with MS should avoid those that claim to boost theimmune system. That could be a problem in MS, which resultsbecause of a misdirected immune attack on myelin within thecentral nervous system.

As mentioned, vitamin D – whether delivered through sunlight,fish such as salmon or tuna, milk, or in pill form – may play arole in preventing MS. Many physicians now suggest thatpeople with MS themselves might benefit from taking a dailyintake of 1,000-2,000 IU of vitamin D because many people inCanada are vitamin D deficient and this deficiency may play arole in the disease. This idea is interesting but unproven.

If you do change your diet radically or increase your intake ofvitamins, it is a good idea to consult your doctor or a nutritionspecialist. You could also contact the nutrition service of yourcommunity health service or provincial health ministry. Inaddition, the MS Society’s Healthy Eating: A guide for personswith multiple sclerosis examines what makes up a healthy diet.


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� Exercise can be of great benefit in MS, however it is importantto find the right balance of activity and rest for you. Studieshave shown that appropriate exercise can improve fitnessand decrease fatigue. However, this does not mean overdoingit. Too much exercise can result in more fatigue and weakness.It is also important to try to keep your temperature downwhen exercising, as this can worsen symptoms or producenew ones. For this reason, some people prefer to exercise ina cool pool where possible, or will take a cool bath beforeand after their exercise. It is best to consult with a professional(such as a physiotherapist) when choosing an exercise regimeto ensure that it is suitable for you. There are many differenttypes of exercise: some that increase mobility throughstretching and range of motion (helpful for weakness andstiffness), some that improve balance, some that are aerobic,and some for relaxation.The best exercise regime is balanced and helps you feelbetter and stronger. The MS Society of Canada offers thepublication, Everybody Stretch, which approaches stretchingand exercise from varying levels of ability.

� Try to decrease your stress levels — stress is generally nothelpful to well being. Ensure that you get some time to relaxand surround yourself, where possible, with people and thingsthat are fulfilling to you. You might even consider regularmeditation practice. Simple practices such as meditating for15 minutes a day, learning yoga or T’ai Chi, or going for amassage can help relieve tension and have psychologicalbenefit. Ask your local community centre or MS chapter aboutclasses being taught in your neighbourhood. You might wishto refer to the MS Society publication, Taming Stress in MS.


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Asking for help can be a strengthEveryone needs help sometimes. Consider your friends, family,doctor, local MS chapter, or trained counsellors when you’relooking for support. Your friends and family may appreciateyour explaining how they can best support you. Sometimespeople want to help, but they don’t know how to be the mosthelpful. Some people with MS want very specific support (forexample, help getting groceries every couple of weeks). Inother cases, the situation may be quite the reverse. Sometimespeople with MS have to ask well-meaning family or friendsnot to rush to help every single time they have difficultydoing something.

Whatever ‘help’ means to you, asking for it does not need tomake you feel less capable. Instead, asking for support canenable you to be more functional, by freeing up more energy,time, or emotions for other priorities.

Consider group supportTalking about MS with others can offer you the support you needto get through difficult times. It can also connect you to a hugenetwork of people who are coping with MS. By getting involvedwith support groups, you not only increase your network ofknowledge, but you may find others that can relate to yourstruggles, and who may help you to uncover resources (bothinner and outer) that can improve your situation. The MS Societyof Canada has many self-help groups. Call your local chapter formore information.

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Educate yourselfEducate yourself about MS, but always consider the source ofinformation. Check with your doctor, nurse, or the MS Societyto find out if the information you’ve found is correct. Here aredifferent sources of information available to you:� MS Society of Canada – is accurate, up-to-date, and can

help you assess the information you’ve found.Updated information on research can be found by visitingthe Society’s Web site and clicking on MS Research.Call toll-free in Canada: 1-800-268-7582Email: [email protected]: www.mssociety.ca

� Medical journals – a source of credible and currentinformation on MS, but may be difficult to understand.

� Medical or science magazines – explain the findings inrecent medical journals and how this information affectsyour life. You may find these sources easier to understand.

� Articles in newspapers – information may be worthlooking into further, but often sensationalized, and notalways accurate.

� Books or websites – can be good sources of informationbut be careful that the authors aren’t trying to sell you anidea or product.


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Surround yourself with people and things that giveyou pleasure and energy

Happiness can come from something very simple like aconversation with people you love, enjoying a new craft orhobby, laughing with a friend, listening to music, or beingoutdoors. With a progressive illness such as MS, you may needto re-examine your dreams and plans as there may be newlimits that challenge you. But having a chronic illness withdisability does not have to mean that you have less meaning,activity, or enjoyment in your life.

Are disease-modifying therapies availablefor progressive MS?Disease modifying-therapies have been shown to reduce thenumber of relapses in MS. They do this by interfering with theimmune system’s attack on the CNS. Currently there are fiveapproved therapies in Canada for RRMS: Avonex®, Betaseron®,and Rebif® (which are beta-interferons) Copaxone® (glatirameracetate) and Tysabri (natalizumab). Because these drugs areaimed at reducing relapses, they are less helpful for progressiveMS (where relapses are not as common or well-defined). Thecost of therapy may be covered by your or your spouse’sprivate or employer-paid health insurance. Or, depending onwhich province you live in, you may be reimbursed for the costof these medications.

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There are currently no other approved drug treatments forprogressive MS in Canada. Drugs have to be approved byHealth Canada before doctors can give them to you. Once adrug is approved for one use, your doctor can sometimesprescribe it for another use if they believe it will help you.

In the rare case of very rapidly progressive MS, typically occurringin patients under age 40, doctors will sometimes prescribedrugs approved for the treatment of cancer such as Novantrone®

(mitoxantrone) or Cytoxan (cyclophosphamide). In these cases,it is critical that the person with MS is carefully monitored,given the risks associated with these treatments. It is importantto have an informed conversation with your physicianregarding any questions you have about your treatment.

There are hundreds of clinical trials occurring at all times ondifferent aspects of MS. Some of these are specifically forprogressive MS (for example immunosuppressive drugs),but most of the clinical trials for MS tend to focus onrelapsing forms.

This is because progressive MS is harder to study: the clinicaltrials take longer, are more expensive, include older and thereforeless healthy individuals, and have a higher risk of failure. Forthese reasons trial sponsors are less likely to study this form ofMS. Nonetheless many drugs that suppress inflammation havebeen looked at in progressive MS and so far they have notworked very well, if at all.


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Clinical trials should not be viewed as a substitute for treatmentbecause they are experimental and need to continue for anextensive length of time before they can be deemed to betherapeutic. Ultimately, the understanding gained from researchand clinical trials helps everyone with MS. You can find outmore about current trials from the MS Society of Canada orMS Clinics. You can also ask your neurologist or family doctorabout the possibility of participating in a clinical trial.

Symptom ManagementWhether or not disease modifying therapies are an option foryou, there are many pharmaceutical and non-pharmaceuticaloptions for your symptoms. Symptom management isimportant for helping you live as comfortably and asproductively as possible. If your doctor prescribes a medicationfor you, be sure to discuss any side effects.

Often there is more than one medication for any particularsymptom. You need to work with your doctor to find themedication or non-pharmaceutical therapy most suitable for you.

Treatments for MS symptoms

Here’s a look at some of the most common symptoms ofprogressive MS and information on how these symptoms canbe treated. Please note that it is rare for people with MS tohave all of these symptoms.

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Fatigue, the most common symptom of MS, is a sense oftiredness, lack of energy, or feeling of exhaustion that canseem overwhelming, and which can interfere with dailyactivities. In MS, there are two types of fatigue. Primaryfatigue, is related to the underlying disease process in MS.Secondary fatigue is caused by factors such as depression,medication side-effects, heat, lack of exercise, sleep difficulties,and stress. Speak with your physician about what might becausing your fatigue and available treatment options.

Avoiding heat (if you find your fatigue is heat-sensitive),resting regularly, ensuring adequate sleep, engaging inmoderate exercise, consulting an occupational therapistregarding energy management techniques, or visiting a sleepclinic are all things you could do to try to improve your fatigue.

Perhaps you’ve been thinking about mobility aids, but feelreluctant to become reliant on them. Remember thatsometimes they can actually improve your quality of life byreducing the energy you use to get around, freeing up energyto do other things. For more information, contact yourphysician, make an appointment at an MS Clinic, or call theMS Society of Canada.

Depression can be very common in MS. While it is not hardto see how a chronic illness might make someone feeldepressed, there is also evidence that depression may be aprimary symptom of MS; that is, part of the disease processand not simply a result of difficult circumstances. If you arefeeling depressed or hopeless or have noticed a change in your


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sleeping or eating patterns, be sure to call your physician. Callimmediately if you are having thoughts of death or suicide. Theimportant thing to remember is that depression is verytreatable in MS and there is help available. Medications,counselling, or support groups may be of great benefit. You donot need to suffer in silence. Other mood changes, such asuncontrollable laughing and crying (known as the‘pseudobulbar affect’) can also occur and can be treated.

While cognitive changes occur in about half of the peoplewith MS, they are fairly mild for most people. These changescan include problems with attention, memory, problem solvingand learning. Approximately 5-10% of people with MSexperience more severe cognitive difficulties. Whether thesymptoms are mild or more severe, it is important to tell yourdoctor so that he/she can make an appropriate referral or helpyou find the best way to manage. Specialists such asneuropsychologists, speech and language pathologists, oroccupational therapists can help you learn how to compensatefor cognitive difficulties you are having. Sometimes smalllifestyle changes or memory devices can be very helpful. Thereis some evidence that some medications may be useful.

Pain was previously not recognized as a symptom of MS. Now,however, health professionals acknowledge various types ofpain in MS and are aware that pain can have a negative impacton quality of life. If you are experiencing pain, see your doctorabout medications available for acute or chronic pain. It is veryimportant that an accurate diagnosis of the cause of any typeof pain be made to make sure it is treated appropriately.

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Non-pharmaceutical therapies such as physiotherapy,acupuncture, meditation, biofeedback, massage, orthotics,walking aids, and hot or cold compresses can also help tocontrol pain.

Muscle spasticity and weakness are commonsymptoms. For spasticity, your doctor may prescribe one ofthe numerous medications available and may also suggestphysical therapy, exercise, stretching, and adaptive devices.Untreated spasticity can cause serious mobility problems andinterfere with personal care. Reducing spasticity can makemovement easier and lessen fatigue. On the other hand,spasticity can sometimes help compensate for weakness. Forexample, it’s easier to stand on a weak leg if the muscles arestiff. Rehabilitation specialists can help you manage yourspasticity in a way that provides you with the greatestproductivity. Consider seeing if aquatherapy, yoga orT’ai chi classes, all helpful for spasticity, are available inyour community.

Balance and coordination problems can be a primarysymptom resulting from damage to a part of the brain calledthe cerebellum. They can also be secondary, resulting fromvertigo or dizziness, tremors, or numbness in your legs or feet.Speak to your physician about the possible reasons for yourbalance or coordination problems and ask about availablemedications that might help. Physiotherapists can suggestexercises to help compensate for vertigo or lack of balance.Braces and weights are sometimes used to help managetremors that aren’t alleviated by medication.


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Vision problems are due to damage to the optic nerve andweakness in the eye muscles. Talk to your doctor aboutmedications for acute attacks of vision problems. Assistivedevices such as eye patches and prism lenses may be helpfulfor vision problems which persist. Vision difficulties such asdouble vision may also be affected by fatigue, increases intemperature, stress, or infection. Managing these conditionswhere possible may help improve your symptoms.

Bladder symptoms such as difficulty holding urine, emptyingthe bladder, and frequent bladder infections often occur withprogressive MS. If you have any problems with urination, tellyour doctor. He/she may refer you to an urologist who candetermine which type of bladder dysfunction you have. Thisinformation will then allow your doctor or specialist toprescribe the appropriate medications. In some cases, self-catheterization may be necessary. Biofeedback and regularscheduled times to urinate may help improve bladder function.

Bowel problems generally involve constipation and diarrhea.If you have problems with your bowels, tell your doctor so thathe/she can suggest the most appropriate therapies. While thereare a number of medications available, proper nutrition andadequate fibre and fluid intake can be very helpful.

Changes in sexual function are common in MS. Forwomen, these can include impaired genital sensation,diminished orgasmic response, loss of interest, weak vaginalmuscles, and a lack of lubrication. For men, these can includeimpaired genital sensation, decreased sex drive, difficultyachieving an erection, and delayed or decreased ejaculation.

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There can also be a significant impact on a person’s sexualself-esteem and body image. Depression and fatigue can alsoimpact a healthy sexual life. Much can be improved throughmedication and counselling.

If these symptoms are concerns to you, it is important to try toovercome any shyness around discussing these issues. Locatethe health professionals who are receptive to your concernsand who are willing to refer you appropriately. The MS Societyof Canada can also refer you to its publication, Sexuality andMS, as well as other publications on sexuality and disabilitywhich may be of help.

Speech and swallowing difficulties. There are currently nomedications available, but rehab specialists such as speech andlanguage therapists or occupational therapists may be able toprovide you with some very helpful exercises and techniquesfor improving your speech, swallowing, or eating. Thesesymptoms can certainly affect quality of life and addressingthem is very important. Contact your doctor for a referral.

Complementary and alternativemedicines (CAMs) are widely used, but itis important to make informed choices.Many people with MS use CAMs. When considering the use ofCAMs, it is best to discuss the issue with your physician,particularly when you are on any other prescribed medicationsor treatments. Weigh the pros and cons and ask yourself thefollowing questions:� What does the treatment involve?� How and why is it supposed to work?� What are the risks?� Are there possible interactions with your current

medications?� Is the alternative healthcare professional regulated?� How much does it cost?

CAMs may be helpful for managing your symptoms, butremember to have a healthy skepticism. For instance, a claimthat a particular substance ‘boosts the immune system’ maysound positive, but if so, this might be a risky CAM forsomeone with MS. It is the activity of the immune system inMS that leads to myelin damage, therefore increasing immuneactivity could possibly be harmful. This is not to scare you awayfrom considering CAMs, but rather to remind you that justbecause something is ‘natural’ does not mean it is necessarilysafe or effective. If you need some assistance in researchingthe claims of a particular CAM, contact your local MS Society.


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The MS Society will be able to provide you with information onthat CAM, or can refer you to other resources such as books orWeb sites that may help you make an informed decision.

A note on familyMS can have an impact on the entire family. Try to be aware ofhow the changes brought about by MS affect each member ofyour family. Everybody will react to these changes in their ownways, and often not everyone is ‘on the same wavelength’ interms of how they cope. With all the changes that progressiveMS can bring, it is very natural to expect some disruption inyour normal family dynamics. Figuring out how best tocommunicate can be an ongoing challenge, but is well worththe effort. The MS Society of Canada has publications aboutfamilies, be it caregiver issues, information on speaking withchildren about MS, or books for children of parents with MS.Speak with your doctor about referrals, such as counselling,that might be helpful. While MS can place stress on a family, itcan also reveal a family’s unique gifts, such as compassion,sense of humour, or resourcefulness.

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Thinking long-termWhen dealing with a chronic illness such as MS, there are a lotof long-term issues which can present concerns and questions.How will my disease progress? Where will my source of incomecome from? What are my insurance options? Will I be able toremain in my home? What are the options for making myhome more accessible for me? Who will care for me if Ibecome more disabled? These kinds of questions can beoverwhelming, particularly when MS is newly diagnosed. Whileit may seem a scary exercise, it may help you in the long run toconsider some of the possible scenarios that you find mostfrightening. Despite some peoples’ superstitious feelings,thinking about or planning for ‘worst-case scenarios’ will notmake them happen to you. Instead, this kind of ‘planning forthe worst, but hoping for the best’ may help you to feel youhave a measure of control over your life. You can feelcomfortable knowing that you have a safety net set up for youand your family, which in many cases you will not need.

Your local MS Society and resources such as Societypublications can help you deal with these large and oftencomplex long-term issues. It requires effort to sort throughthese issues, but doing so will give you a greater sense ofcontrol within the uncertainty. Some people like to getinformed as much as possible right away, while others need todo this more slowly to avoid feeling overwhelmed. So paceyourself and respect your own coping mechanisms.


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Changes in MS and particularly progressive MS can beconstant. They can represent losses of all kinds and you shouldnot underestimate the kind of grieving you might need to do.At the same time, no matter what your situation is, if youremain open to possibilities, there will always be ways for youto share yourself, ways for you to tap into new interests ortalents, or contribute to the lives of those around you.

APPENDIXES

Resource toolsHere are some tools that you can use to manage your disease.Feel free to photocopy them and take them to your next visitwith your doctor.

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Symptom

Diary

Notedate

symptomendedor

whetheritisongoing

Doesitinterruptyour

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GlossaryAssistive technologies: a term used to describe the rangeof tools, products, and devices which can assist in making agiven function or activity possible or easier to perform.

Autoimmune illness: an illness in which the body’s immunesystem mistakenly attacks healthy cells, organs, or tissues.Multiple sclerosis is believed to be an autoimmune disease inthat the body’s immune response becomes directed against itsown myelin.

CAMS: see Complementary and alternative medicine.

Central nervous system: the part of the nervous systemconsisting of the brain, the spinal cord, and the optic nerves.

Cerebellum: the part of the brain involved with balance,coordination, and posture.

Chronic progressive: a term (now largely outdated) formerlyapplied to progressive forms of MS.

CNS: see Central nervous system.

Cognition: includes high level brain functions such ascomprehension, information processing, memory, reasoning,and problem-solving.

Cognitive dysfunction: term referring to an unspecifieddegree of impairment in cognitive functioning (can be mild tosevere). Due to disease process. See Cognition.

30 www.mssociety.ca


Complementary and alternative medicine: a termincorporating two associated areas. ‘Complementary’ medicineis the use of nonconventional therapies in conjunction withconventional medicine. ‘Alternative’ medicine is the use of non-conventional therapies in the place of conventional medicine.

Demyelination: loss of the protective myelin layeraround nerves.

EDSS (Expanded Disability Status Scale): used to measureoverall disability, as based on the neurologic exam. It is a20-point scale, with a scope from 0 (normal exam) to 10 (death)by half points. The EDSS is often a key factor in determiningfuture medical treatments, rehabilitation aims, eligibility forclinical trials, and/or eligibility for disability subsidies.

Evoked potential: see Visual evoked potential.

Immune system: an intricate system made up of glands,tissues, circulating cells, and processes which acts to protectthe body from foreign substances and infections.

Immunomodulatory treatment: a form of treatment whichmodifies or alters the body’s natural immune system response.In the case of MS, this modification results in a decreasednumber of MS relapses.

Immunosuppressive treatment: a form of treatment whichreduces the body’s immune responses. In MS, a reduction ofimmune response could mean less damage to the myelin. Anexample of an immunosuppressive treatment, which issometimes prescribed off-label in MS is Novantrone®

(mitoxantrone).


www.mssociety.ca 31

Incontinence: also sometimes called spontaneous voiding.The inability to keep urine in the bladder or the inability tocontrol bowel movements.

Lesion: an area of inflamed or demyelinated tissue in thecentral nervous system. Also called a ‘plaque’. Some lesionsbecome permanent ‘scars’, while others repair themselvesspontaneously and disappear.

Lumbar puncture: a diagnostic procedure that uses a hollowneedle in order to remove cerebrospinal fluid from the spinalcanal. The cerebrospinal fluid is examined for changes in itsmakeup that can be associated with MS (eg, elevated whitecell count, elevated protein content, the presence ofoligoclonal bands).

Maintenance rehab: see Preventative rehab.

MRI (magnetic resonance imaging): a procedure in whichradio waves and a powerful magnet linked to a computer areused to create detailed pictures of areas inside the body. Thesepictures can show areas of demyelination.

Myelin: the insulating layer that surrounds nerves, and allowsfor the effective conduction of nerve impulses.

Nerves: bundles of nerve fibres that transmit electricalmessages around the body.

Non-pharmaceutical therapy: treatment that does notinvolve medication.

32 www.mssociety.ca


Off-label: a term referring to the use of a given medicationwhich is different from that medication’s approved parametersaround dosage, population, or indication. In MS for example,some physicians will prescribe cancer treatments such asNovantrone® (mitoxantrone) off-label in some cases.

Orthotic: a device used to mechanically assist, restrict, orcontrol muscle. They come in many shapes and sizes fordifferent parts of the body. Also called orthosis.

Pharmaceutical therapy: treatment using medication.

Plateau: a levelling off of the progression of symptom severity.

PPMS: see Primary-progressive MS.

Preventative rehab (also called maintenance rehab):a type of rehab using strategies and techniques to compensatefor lost function allowing the individual to function at theirhighest level.

Primary fatigue: fatigue resulting from the underlyingdisease process in MS.

Primary-progressive MS: a form of MS which is progressivefrom the beginning, which has no plateaus or remissions, or anoccasional plateau and minor improvements.

Progressive-relapsing MS: a form of MS which isprogressive from the beginning, but with clear, acute relapses,with or without full recovery from those relapses.

PRMS: see Progressive-relapsing MS.


www.mssociety.ca 33

Pseudobulbar affect: excessive and unstable emotions suchas inappropriate laughing or uncontrollable crying. Theindividual’s mood may have no influence on the emotionsexpressed. Also called ‘affective release’.

Relapse: the appearance of new symptoms or thereoccurrence of old ones, lasting at least twenty-four hours.Also called attack, exacerbation, flare-up, or worsening. Usuallyassociated with inflammation and demyelination in the brainor spinal cord.

Relapsing-remitting MS: a form of MS with clearly definedrelapses, with full or partial recovery and no diseaseprogression between attacks.

Remission: a period when symptoms are reduced (partialremission) or disappear (complete remission).

Restorative rehab: a type of rehab focusing on regainingfunction after it is lost (for example, reducing spasticity orstrengthening muscles).

RRMS: see Relapsing-remitting MS.

Secondary-fatigue: fatigue caused by factors such asdepression, medication side-effects, heat, lack of exercise, sleepdifficulties, and stress.

Secondary-progressive MS: a form of MS which is initiallyrelapsing-remitting, but which over time changes to a steadilyprogressive pattern (though the rate of progression is variable).Relapses may still occur, especially early on. Most MS patientswill experience at least some progression in their lives, but itmay not occur for 10-20 years or more.

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Sign: objective physical abnormality identified by the physicianduring a neurologic examination. Neurologic signs may beidentifiable only with specific tests and may cause no overtsymptoms. Common examples of neurologic signs in MSinclude altered eye movements, altered reflexes, and weakness.

Spasticity: abnormal increase in muscle tone in the limbs. Itcan manifest as extreme stiffness in the muscles.

Spinal cord: the bundle of nerves running from the braindown the spine providing a pathway for transmitting messagesto and from the rest of the body.

Spinal tap: see Lumbar puncture.

SPMS: see Secondary-progressive MS.

Symptom: an indication of illness which is experienced or feltby a person, and which is not necessarily observable by others(eg, pain).

Visual evoked potential (VEP): a diagnostic tool in whichthe brain’s electrical activity is measured in response to visualstimuli. Demyelination can result in a slower response time.VEPs are abnormal in approximately 90% of people with MS;however, an abnormal result does not in itself indicate adiagnosis of MS.


www.mssociety.ca 35

NOTES

36 www.mssociety.ca

How to reach the MS Society of CanadaCurrent as of August, 2008

British Columbia Ontario DivisionDivision 175 Bloor Street East1501-4330 Kingsway Suite 700, North TowerBurnaby, British Columbia Toronto, OntarioV5H 4G7 M4W 3R8(604) 689-3144 (416) [email protected] [email protected]

Alberta Division Quebec Division#150, 9405 - 50 Street 550 Sherbrooke Street WestEdmonton, Alberta Suite 1010, East TowerT6B 2T4 Montréal, Québec(780) 463-1190 H3A [email protected] (514) 849-7591

[email protected]

Saskatchewan Division Atlantic Division150 Albert Street 71 Ilsley Avenue, Unit 12Regina, Saskatchewan Dartmouth, Nova ScotiaS4R 2N2 B3B 1L5(306) 522-5600 (902) [email protected] [email protected]

Manitoba Division National Office100-1465 Buffalo Place 175 Bloor Street EastWinnipeg, Manitoba Suite 700, North TowerR3T 1L8 Toronto, Ontario(204) 943-9595 M4W [email protected] (416) 922-6065

[email protected]

Call toll-free in Canada: 1-800-268-7582www.mssociety.ca


Our Mission

To be a leader in finding a cure formultiple sclerosis and enabling people

affected by MS to enhance their quality of life.

C40E/08 Disponible en français

Contact theMultiple Sclerosis Society of Canada:

Toll-free in Canada: 1-800-268-7582

Email: [email protected]

Website: www.mssociety.ca

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