Your data. Your power.

When I first saw iConquerMS on the internet, I reacted with cynicism.  I’d lived with Multiple Sclerosis (MS) over twenty-five years.  More than one group had come out with empty promises during that time.  But months later they invited me to join the research committee. I almost deleted the email.  But, instead, out of boredom and curiosity, I asked questions. The answers convinced me.  IConquerMS offered a promising approach to research on MS. 

This group started with a grant from the Patient Centered Outcomes Research Institute (PCORI).  PCORI funds groups that collect “big data” on the internet from people with many chronic diseases.  They use this data in research, but they also learn about the questions patients want answered.  Its goal is to use data from many patients to answer the research questions patients have.  As a final boon, they insist that people with these chronic diseases serve on the boards and committees that decide how researchers use the data. 

IConquerMS is the PCORI group for MS.  They collect data on the iConquerMS website and use it in projects chosen with advice from people with MS, like me.

IConquerMS is now in its fourth year.  These early years were filled with website construction, participant recruitment and grant writing.  They also collected the research ideas of the people with MS from their site.  The research committee now has a large collection of questions, categorized and ranked. 

Concerns about risk factors top the list.  Next, are questions about how to manage symptoms.  Diet is third, reproductive health, fourth and fifth is the effect of the different disease modifying medications.  Smaller numbers reflect other interests, including prognosis, alternative treatments, exercise, cognition and the value and use of supplements.  

The iConquerMS research committee looks at requests to use this data. Before it can be used, the research committee has to approve studies.  Studies that address the question that rank high for people with MS will get priority.  Staff from iConquerMS will also try to match grants to these questions and will attempt to interest scientists in the things that most concern people with MS.

This data, your data, is a treasure trove for researchers and it is accumulating.  The more people with MS who sign onto the website and fill out iConquerMS questionnaires, the greater their influence on research. 

Do you want to help set these priorities?  Join this project.  Sign up today.  It will take a little time to fill out the questionnaires, but it’s time well spent. The more people who join, the more valuable the data base becomes.  The bigger the data base, the more it will interest researchers and the more they will address our questions.  It is well worth your time, so sign up now.

Read more about PCORI http://www.pcori.org/research-results/2015/multiple-sclerosis-patient-powered-research-network-iconquerms™

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MS and Physical Therapy

We all know exercise is good for us.  It increases energy, improves mood, and enhances overall health. It improves your social life and makes you look better, too. Any exercise will do, so long as it gets your heart thumping and your muscles working.  But those of us with with multiple sclerosis (MS) must approach exercise with care.

The last ten years have been littered with reports that exercise in general and physical therapy in specific is good for us.   These reports have upended the old recommendation that we rest as much as we can.  Many of these studies show that with physical therapy people with MS develop improved walking, balance, a decrease in the number of falls, and even improved cognitive abilities.  When they measured fatigue, studies showed improvement there, too.

It all sounds wonderful, right?

Don’t dive in quite yet.  I have been to physical therapy many times since my diagnosis with MS, all but one for reasons unrelated to MS.  Physical therapy worked — for sprains, muscle pulls and rehabbing a bad hip.  But it failed the one time I went to improve my MS related balance difficulty.  Until my most recent experience with physical therapy, I ended each set of sessions early because the extra demand on my schedule and the extra exercise increased my fatigue.  Because of this experience I read the praise of physical therapy for people with MS with skepticism.  My more recent experience shifted my view, but more on that later.

It took no time for this new research to convince neurologists and others to start recommending exercise and physical therapy for their patients with MS. It provided one more promising way to improve the lives of people who have a sword dangling over their heads.  So why not try it?

Because of this I took a more serious look at the physical therapy research. My survey revealed that findings are far from conclusive, but there are exciting positive conclusions:

  • Exercise is safe and does not cause relapses.
  • PWMS can improve with physical therapy.
  • Physical therapists can modify standard treatments for the particular difficulties of MS.

But there are also flaws in the research that undermine many specific claims.

  • Researchers often only include subjects they believe will show benefit.  This is called a selection bias.
  • All studies fail to adequately account for fatigue.  They are not to blame. There are no good measures for fatigue.
  • All studies fail to use normal control subjects.
  • Subjects dropped out.  No one reported why.

Despite the flaws in these studies, it is safe to conclude that for most of us with MS, an exercise program, even if it is as simple as regular stretching, will be valuable.

Is it time to ask for a prescription for physical therapy?  Certainly do that before you go it on your own.  Though, once you have a safe program constructed, you can set your own schedule and pace.

Yet even without the outdated advice to rest as much as you can, MS still provides barriers to exercise.  Sometimes viewed as excuses, these barriers are more fairly characterized as legitimate reasons for people with MS to say no when more exercise is recommended.

  • People with MS have less active time than their healthy cohort.  If exercise takes away from time with family and loved ones, or even ruins family time because of fatigue irritability, then priorities need to change.  This can be done with the physical therapist, who may be able to alter the exercise routine to provide better balance.
  • PT comes with financial costs.  Even small co-pays may put a dent in your budget.  Many people with MS work reduced hours or not at all, depending on disability support or a spouses earnings.  This can also be approached with your physical therapist, who may have ideas of ways to adjust the number of visits, or who can send you off with a recommended home exercise course.
  • Sometimes going to physical therapy takes all the energy you have.   For some people, dressing, driving, and walking inside to get to PT might use up a day’s worth of energy.   Sometimes home physical therapy is available, but often it is not.

Physical therapists have tried to address fatigue, but no standard exists.  A full explanation of MS fatigue has escaped medical research, so we are limited to subjective lists to sort out what fatigue means for any particular person with MS.  Lists of types of fatigue vary from one doctor to the next. I find this list to work best for me:

  • Fatigue that comes from using muscles that are out of condition.
  • Fatigue that comes when the wrong muscle has to be used because another is not receiving proper signals from the brain.
  • Fatigue from poor sleep, which can result from many MS related causes.
  • Fatigue from overheating.
  • Fatigue that results when overused neural pathways shut down.
  • Lassitude (an ill-defined reduced ability to initiate mental activity).
  • Fatigue from sensory over-stimulation
  • Fatigue from spasticity or resulting pain.

If you find a physical therapist who knows how to work with MS, the experience may turn out well.  It is possible that you may be one of those people with MS who can get better balance, or improved strength, or even improved cognition or reduced fatigue.  If not, a visit to a physical therapist may still result in help with assistive devices or a proper referral, as happened for me.

When I wrote the first version of this article I did so as I concluded my practice and accepted my disabled status.  I resigned myself to spend the rest of my life working on doing my best to maximize the limited energy I had, energy that was depleted by all of the factors of fatigue mentioned above, plus significant hip pain from what I thought was MS spacticity.  An astute physical therapist, after working with me for a couple of weeks, suggested that I have my hip evaluated for structural difficulties.  The finding?  I had a severely arthritic hip that needed replacing.

One year later after my hip replacement and two rounds of physical therapy that started very slowly to manage fatigue from MS and de-conditioning, I’m working independently in the gym and my mobility has improved dramatically.

Here’s what I learned during this time about how a physical therapist with training in managing MS will approach a person with MS:

First, she will not take her patient to “the burn.”  That’s a recipe for painful fatigue.  Because fatigue is the most common symptom of MS and the most disabling, all exercise needs to be adapted to the level of fatigue experienced by the individual patient.

When someone with MS has been so sedentary that they are deconditioned — meaning the muscles have been so infrequently used that they are functioning below their capacity — a physical therapist will take things slow, so much so that it may seem like little is being done.  It is critical to give time to this early stage of rehabilitation.

In training  physical therapists learn about physical stress theory. This theory explains how muscles improve.  Too little stress and there is no gain. To much and there is tissue damage.  Any sign of tissue damage indicates that exercise should stop until the patient has recovered.  For people with MS fatigue adds a second indicator for when exercise should stop.  If fatigue is allowed to become excessive, it will not only interfere with the ability for you to continue exercising, but will also impact your willingness to continue with PT and possibly with your quality of life.

The environment makes a difference.  Facilities must be air-conditioned in summer.  A cooling vest might also help keep core body temperatures low.   Pre-cooling either in a cold air-conditioned room or with ice packs might allow for a bit more exercise.  Adding a fan to the air conditioning might also help. This must be tempered with the awareness of individual symptoms.  For example, a significant minority of people with MS have difficulty with cold temperatures or with blowing air.

A researcher discovered recently that interrupting an exercise routine with rest periods allowed people with MS to exercise for a longer total amount of time.  Measured breaks may be part of the course of your physical therapy session.  If they aren’t, you can suggest them.

A risk with this new physical therapy research is that it provides another opportunity for people to blame the patient when treatments are not successful or the course of the disease fails to stop.   People with MS frequently do this to ourselves, mercilessly pushing into an overly ambitious exercise regimen that ends up putting us into a state of fatigue and all the anger, depression, irritability, cognitive dysfunction and lifestyle difficulties that come with it.

The physical therapy research is not strong enough to say that it will always be helpful to all people with MS.  On the other hand, if physical therapy has been recommended and your anxiety about fatigue and weakness is preventing you from trying it, than find a physical therapist who is trained in treating MS and give it a go.  The only side effects are temporary and easily managed.

Work Barriers for People with Multiple Sclerosis

       I was surprised to find, when I was first reading about Multiple Sclerosis (MS), that the average time from diagnosis to disability was as little as ten years. Now that MRI results are being used to diagnose MS and we can delay it with immune modifying agents this estimate is likely to be longer, hopefully significantly so. Nevertheless, having an estimate is still misleading because of the large variation between individuals. Some people find they can’t work after only a few years. Others work full time until the normal age of retirement.  The course of this disease is very different for each person with MS.  The many reasons for why people with MS (PWMS) can’t work are as varied as the course of the disease.

MS, to review, is a disease in which the body’s own immune system attacks the insulation protecting the nerves that communicate within the brain as well as from the brain to the rest of the body. Most visibly, people with MS may have trouble with balance and strength. The nerves from the brain don’t properly instruct the muscles so that they don’t work efficiently or sometimes don’t work at all. Less visibly, the nerves that communicate from one part of the brain to other parts of the brain can also be effected. This leads to a variety of cognitive problems, ranging from visual loss to difficulty forming and retrieving memories, to problems processing information. Regardless of where the damage lies, the extra neurological effort required to make an injured brain work often produces debilitating fatigue.

The most obvious reasons people with MS stop working are when reduced physical functioning prevents them from performing the movements required for work. If you can’t lift a wrench, you can’t work as a mechanic. If you can’t pull yourself into the cab of a truck, you can’t drive it.  If you can’t stand on your feet for eight hours, you can’t check groceries. If your hands are shaking, you can’t operate a sewing machine. These are simple and direct causes for disability which most people can easily understand.

Although there are frequently obvious reasons like these that cause disability, more PWMS are disabled by more subtle symptoms.  Cognitive difficulties are among the subtel problems.  Cognitive difficulties are problems with thinking.  Examples include difficulties with memory, attention, concentration, processing information, or processing sensory stimulation.  Problems like these can also prevent people from working.

All jobs require a certain degree of attention and concentration, as well as reasonably good memory functioning. You have to be able to process information all day if you are working as a manager, for example. Professionals, like lawyers, accountants, or physicians, depend on their ability to do cognitive tasks throughout the work-day as well.  Even jobs that do not require such extensive training are still cognitively demanding. Truck drivers, nurse aids, crossing guards, even airport luggage checkers have to focus and maintain their attention and concentration and make important judgments in a reasonable amount of time. MS can interfere significantly with these unseen cognitive functions and can make job performance impossible. When cognitive problems prevent the performance of job duties, disability is the result.

There are many people with MS who don’t work because of problems with their thinking. But this, too, does not make up the majority of people with MS who are disabled. The greatest enemy for people with MS who are trying to work is fatigue.

MS fatigue is subtle and very hard to understand for those who haven’t experienced it. It is why some people with MS seem energetic and vibrant at one time, and are dragged out and exhausted at others, sometimes with very little time in between. It is why people with MS spend so much time resting and it is the primary reason why many people with MS can’t work.

Some people with MS who are disabled would be able to do their jobs on Monday morning after a weekend of rest. They might be able to do the exact same things their former coworkers do. They might be able to juggle multiple tasks, balance complicated checkbooks or even balance a fifty or even 100 lb. box. Yet if they persist in doing these things for any length of time, these abilities may disappear.

The cause of this is fatigue. When a brain that is working on a reduced number of connections between neurons (nerve cells) is pressed to work to its maximum, it rapidly runs out of steam. At the cellular level this happens because fewer neurons are responsible for the work that is usually done by a full compliment of neurons and neural networks. It is like having a basketball team of five, with no room for substitutions.  If that team plays a team with ten players, the team with a full rotation of substitutes has a significant advantage in the game. The short-handed team may be able to play with the other team for a while, but over time the fatigue interferes.  If this persists over a whole season, the team is going to fall apart. For someone with MS, this kind of scenario can play out over the course of a week, a day, or even several hours.

Recent research has expanded the understanding of MS fatigue, but so far this has raised more questions than it has provided answers.  The amount of fatigue a PWMS experiences is not easily correlated with what can be seen with an MRI.  Some researchers are exploring how processes unrelated to damage to nerve cells can cause fatigue.  Other researchers are parsing out the qualitative differences between the types of fatigue PWMS experience.  Regardless, in MS fatigue is the most common symptom.

This fatigue is the most common cause of MS work disability. For jobs that require manual labor, the connection is easily seen. It is clear that even if a person with MS can start the day tossing around fifty pound bales of hay like they were beads at Mardi Gras, if by noon they are unable to drag a bail a few feet, they are disabled. This happens in all kinds of manual situations. The walking required in a clerical position can cause the same kind of fatigue. Sometimes wearing out neural connections does more than simply reduce the ability to move or balance.  It can also increase other MS symptoms:  numbness, muscle rigidity, spasms, difficulties with balance and even pain. At times a person with MS can be observed with a widening gait over the course of the day or, after a few hours of work, can be seen lurching from side to side, bumping into walls or even retreating to a wheel chair after a couple of hours of walking and standing.

Fatigue can also influence thinking or cognitive ability.  Many people with MS demonstrate clear and unimpeded thinking when rested. Indeed, until relatively recently it was thought that MS had cognitive effects in only the most severe cases.  People who got MS were told that it only affected strength, balance and sensation. More recently, evidence has demonstrated frequent cognitive difficulties for PWMS.  This becomes more pronounced after a period of physical or mental exertion and can lead to significant difficulty with mental work tasks.

When the disease has progressed sufficiently to make an impact on the connections between crucial links between different areas of the brain, wearing down those links can mean a disruption to the normal ability to make connections, process information, form or recover memories, or even to recognize important information in the environment.  In short, it is hard to think. And if you can’t think, you can’t work. Certainly you can’t work at anything more than very simple tasks, and you are not likely to be able to work at anything someone is going to be paying you for. Take for example, cleaning the house. In a state of fatigue, someone with MS may not be able to process whether the vacuuming or the dusting comes first, or remember whether it was the upstairs or downstairs toilet that was just cleaned.

Such a state of fatigue can be produced by any number of things, from hard physical work — like cleaning the house — or from having to handle multiple sources of sensory stimulation — like being at a loud party with many people, or going shopping at the Mall. In other words, for many people with MS it doesn’t take any unusual cognitive or physical task to produce the kind of fatigue that is sufficiently debilitating to prevent them from adequately performing their job duties.

It is a rare person with MS that has only one symptom. Many times there are multiple problems, including those that are easily apparent and those that are more subtle. For this reason, any one person’s reason for disability may be unique.

But regardless of the particular configuration of symptoms, for people with MS, it is important to recognize the effect of the disease on job performance. It is very easy for someone to miss how MS interferes with work.

This is important to recognize for people early in the course of the disease.  If the inability to do a job is attributed to causes other than the MS, a PWMS can lose his or her claim to the benefits that are available for people who get disabling diseases while on the job. These benefits vary and can include light job duties, flexible hours, protections from discrimination, external assistance, or, in the case of disability,  an important financial buffer while making the necessary adjustments to living with MS.

Equally important, coworkers, friends and families need to recognize that fatigue or cognitive difficulty is not the result of laziness, willfulness, or moral turpitude. It is caused by a very nasty disease. This disease is often disabling. Sometimes the disability is caused by easy-to-see physical restrictions and sometimes the causes of disability are more subtle and insidious.

For each person with MS the course of the disease and many of its specific symptoms will vary significantly. Some people have little cognitive difficulty, but great physical problems. Others have only fatigue as a symptom. Other still have no physical problems or even no problems with fatigue, but may have significant cognitive difficulty.  Each person’s difficulty with MS relates to the number of lesions as well as the specific location of these lesions in our tremendously complex nervous system. Work disability can, unfortunately, be caused by any one of these symptoms.

Stress and MS

Understanding Stress and Multiple Sclerosis (MS)

Stressful life events include everything from births to deaths, marriages and divorce, starting school and graduating.  Almost by definition, life jumps from one stressful moment to the next.  But people with MS (PWMS) have an added complication that forces us to pay more attention to these life events:  an unpredictable, fatiguing, and sometimes debilitating illness. 

There are studies that say stress can trigger the onset of MS or increase the odds for new exacerbations.  But more studies fail to confirm these findings.  On the other hand, PWMS regularly report that their diagnosis followed a stressful time, or that they experience more symptoms after major events.  While research is important, it should go without saying that PWMS ought to make an effort to understand stress and how it influences our lives. 

Dr. Hans Selye first examined stress early in the last century and called it the General Adaptation Syndrome.  He reported that people showed distress and their health declined when forced to make changes in lifestyle or in their environment. But his work languished until Holmes and Rahe published a series of articles in 1967 that documented the effect of stress on human health.

They developed a life events scale that included 43 items (see below).  Volunteers rated the amount of adjustment required by each event.  The death of a spouse ranked highest. Other events included marriage, job loss, starting school, and bankruptcy.  Holmes and Rahe accumulated the items on the list by having a group of people rank life events according to their impact.  Once they had a reliable list of life events, they had two groups of people report how many of these events they’d experienced in the past year.  The first group included only hospitalized patients.  The second group included the healthy people who accompanied these patients to the hospital.  When they compared the scores, the result rocked the world of psychology and medicine: sick people had experienced far more stressful life events than the healthy people who accompanied them.

Fifty years later, stress is a household word.  It’s important to note, however, that researchers define stress differently than the conventional usage.  Academics understand stress like Hans Selye:  an adaptation syndrome.  Stress for any individual is the accumulated changes they are forced to make. The greater the need to change, the greater the stress.

A deluge of studies on stress has followed the original research. It’s implicated in heart disease, cancer, accidents, and almost every other disease including the common cold.  An area of study and practice, Health Psychology, has risen from these roots. Almost every family physician has told patients that some benign symptom is caused by stress.

Yet stress is misunderstood. It’s often thought to be felt, like anxiety. But it’s not something we feel. Anxiety may accompany stress. But stress still wears on us, even when we feel calm. People prone to anxiety may find that stress increases it. But, even without stress, they are still likely to have anxiety.  Those who have little or no anxiety are still vulnerable to illness after stressful events.

Many people are surprised to learn that stress may not only come from negative events. Things like a new marriage, the start of school, getting a raise, or buying a house, also demand adaptation.  While they are positive experiences for most people, they are still stressful.

Researchers have revised and expanded Holmes and Rahe’s original life events scale. The death of a spouse, once thought to be the most stressful event, has been replaced.  Now we know it’s more stressful to lose a child.  Newer lists may include a hundred items or more and often include positive events, like buying a car, getting a promotion, or even a raise.  More recent work has also examined the traumatic stress of armed conflict in war zones and other violent events as well as what makes some people more resilient and able to resist the effects of stress.

Another surprise is that we’ve found there are negative effects from insufficient stress. Ironic as it may seem, a certain amount of change, challenge, and stimulation are good for us. People whose MS has advanced do well to remember this. We need an environment that stimulates and challenges us despite isolation.

Each person experiences stress in a different way. Consider the loss of a job. For a person whose personal identity is wrapped up in a professional position and whose paycheck supports a family, job loss ranks high on the list of stresses. For a young person who is starting out in the workforce and has a list of jobs he or she would like to try, a job change might have less impact.   Someone whose primary activity is raising a family and managing a household might experience very little stress if the work runs out at a part-time job. 

Other individual differences also influence how we experience stress.  For example, introverts with MS seem to have an easier time managing isolation and the transition to a more sedentary lifestyle.  Extroverts can experience reduced activity as a more significant loss, requiring a greater adjustment.  For everyone, individual differences in personality, history, and circumstances influence how and how much stress does damage.

For PWMS the disease itself causes stress. These stresses can include the loss of work, physical discomfort, reduced social activity, managing medications and treatments, reduced income, the loss of marriages or other relationships, and other changes.  Adjusting to the uncertainty of the disease, itself, is a major stress.

Can the unpredictable be managed? Sometimes. While stress is unavoidable, there are ways to reduce its impact.  People can find and develop buffers.  Regular exercise (adjusted to match a person’s capacity) and a good diet will help build resiliency.  Avoiding cigarettes, excessive use of alcohol and recreational drugs contributes.  So will meditation, yoga, mindfulness practices and other mental disciplines that increase psychological fitness.  A supportive group of family and friends who can be called upon for emotional or even material support decreases our vulnerability. And it will never hurt to have regular check-ins with a trusted psychologist, counselor or other mental health professional, particularly in light of the increased vulnerability PWMS have for depression and anxiety.

Stress control will not cure MS.  An increase in resiliency will not make us immune to other diseases or stop MS progression. But no one contests the value of increased resiliency and a solid buffer to protect us from the effect stress might have.  Stress happens.  It pays to be prepared.

Updated 07/14/2017. This article may be printed or posted without permission, but not without attribution.

The items in Holmes and Rahe’s Social Readjustment Rating Scale in rank order:

Death of spouse

Divorce

Marital separation

Jail term

Death of close family member

Personal injury or illness

Marriage

Fired at work

Marital reconciliation

Retirement

Change in health of family member

Pregnancy

Sex difficulties

Gain of new family member

Business readjustment

Change in financial state

Death of close friend

Change to different line of work

Change in number of arguments with spouse

Mortgage over $10,000

Foreclosure of mortgage or loan

Change of responsibilities at work

Son or daughter leaving home

Trouble with in laws

Outstanding personal achievement

Wife begin or stop work

Begin or end school

Change in living conditions

Revision of personal habits

Trouble with boss

Change in work hours or conditions

Change in residence

Change in schools

Change in recreation

Change in church activities

Change in social activities

Mortgage or loan less the $10,000

Change in sleeping habits

Change in number of family get-togethers

Change in eating habits

Vacation

Christmas

Minor violation of the law

J. Lamar Freed, Psy.D. practiced psychology in Pennsylvania until his retirement in 2015.  He continues to be active in the MS Society, with iConquer MS and with online and in-person support groups.

The Impact of MS on the Family

Someone once said that Multiple Sclerosis (MS) is not just an illness of individuals, but an illness of the whole family. Single people who do not have close family ties may object, but I think that, in general, this is a true statement. When a father or mother, spouse, son or daughter is diagnosed with this illness, the losses go beyond those of the one with MS. There is an equally profound set of losses for the people who care for and depend upon the person whose life is so dramatically changed.
In my years reading MS bulletin boards on the Internet and sitting in on chats, I’ve read many moving stories of families coming through for the one who is diagnosed.   These families experience painful losses simply because they are close to the one with MS. Unfortunately, I’ve also read many painful stories of how badly families cope and how much pain they cause with any number of misunderstandings, misinformation and superstitions.
MS can be devastating to everyone touched by it. People with MS can be terribly disabled, needing help with eating, bathing, dressing, or they can look fine and have only rare difficulties like mild fatigue or numbness that may be visible only to themselves. Symptoms can fall anywhere in between. How individual loved ones react at any point in the diagnostic process or during the progression of the illness covers an even larger spectrum.
I want to cover both the ways loved ones can adjust to the symptoms of MS and some problems for families with children living with a parent who has MS. While I don’t expect there will be much that can be done to protect people with MS or their families from some of the initial reactions that are both normal and sometimes inevitable, there are many ways that family members can learn to cope.
Initially, most people with MS are frightened and often sad and depressed. Getting MS is a great loss, greater for some then for others, but never easy. Families share these reactions. Seeing a spouse, a child, a parent, lose their energy, or lose a certain amount of functioning, is very painful.  One mother of an adult child with MS prayed “Why can’t it be me?” Children and parents alike may wonder if the illness came because of something they did. 

Each family will marshal its psychological resources in ways that are most typical for them. Some will chase the foremost experts. Others will pursue diets or other alternative treatments. Some will be stoic or fatalistic. As long as each of the many styles families develop lead in the direction of learning to know the disease and accommodating to it, these varying styles do not matter. If there are conflicts or disagreements within the family around these coping styles, the conflicts will show themselves at this time, as happens during all times of stress. Some families are more open and in the early stages of the illness will be free to talk about it with their extended community. Others may be more secretive and will want to keep the news to themselves. Sometimes this is for important work related or other reasons, sometimes for reasons of irrational fear. Most of these styles, however, do not do damage to the person with MS, nor to the eventual goal of adjustment.

What is key to good coping, though, is moving toward accepting the diagnosis and acting to accommodate to it. Gathering information from all available sources; finding physicians and other care givers familiar with MS; adjusting one’s schedule to match the new reduced level of energy — these and more are ways of actively and consciously working to cope. They are rarely unhealthy.

Some reactions, however, are more accurately described as dysfunctional. The two that are the most obvious and painful are denial and desertion. Denial, as many of us know these days, is acting on the false belief that something does not exist. We hear of it most often when a drug addict or alcoholic denies that they have a problem. “I don’t have a drinking problem, I can stop anytime I want to” or “I’m not abusing speed, I just like a little boost now and then.” When applied to MS this kind of denial can exist in the diagnosed individual but is also seen in the people around him or her. “He isn’t sick. He’s just too lazy to work weekends.” “She says she can’t do it because of her MS, but I just saw her doing that same thing yesterday without a problem, so she just wants attention.” Some family members deny the existence of the problem, even to the point of refusing to learn the name of the illness. They may speak disparagingly of the person suffering from MS rather then to accept their own painful reaction to this loss.

As a permanent coping style, this kind of denial is not typical. But in the beginning of the process of a dangerous diagnosis it is not terribly rare to see it in healthy people. As Elizabeth Kubler-Ross was able to show, denial is not always a pathological thing. But after diagnosis, particularly after months or years of symptoms, the use of denial is clearly the sign of a failure to cope, and invariably does damage to the successful adjustment of the person with MS and has negative consequences for the whole family.

Even more shocking is when people with MS are deserted by family or spouse. Some spouses are unapologetically narcissistic and say “I can’t live with a sick spouse” and leave. Others refuse to make accommodations, sometimes making the lives of a spouse with MS so unpleasant that divorce appears to be more attractive then continuing to tolerate the well spouses neglect or abuse. Other spouses sometimes try valiantly to cope and accommodate, but for some reason can never find a balance in which their own needs are met, eventually poisoning relationships which then don’t survive. More frequently when MS leads to divorce, it was the final blow to a bad marriage that might have been long overdue for a dissolution.

Less frequent is the real desertion of parents or siblings, but emotional desertion is less rare. Some families refuse to accept the need for any accommodation to the illness. Often an outgrowth of denial, they may belittle such things as the need for cool ambient temperatures at family gatherings, the need for scheduled rest, the inability to do things like prepare food or shop, or even the difficulty that travel brings. Such things can be experienced as a desertion by the one with MS.

Healthier, but still problematic, are overreactions to the illness. The uninformed expectation of early disability or death can lead families into some awkward interactions. Doing too much or not enough for the person with MS can also impair good adaptation to this illness. Such reactions are inevitable for some families and not at all rare. Regular reminders about the subtlety of the illness and the fragility of the fine line people with MS need to walk to maintain their energy may be sufficient to correct these tendencies.

The best way to react to this illness is too directly and honestly evaluate what it does to the person who has it and to the family he or she is in. This requires education and it requires communication. It will affect both what the family does together and what the family does to help the person with MS.

MS is complicated, variable and subtle and does many different things to the person with MS. Each of these things may have an impact on the family, and so a family’s reaction and the direction of its adjustment will be just as variable as the course of an individual’s MS. For some people with MS the results of the illness may be primarily physical — it may prevent lifting a child or it stops the PWMS from tending the house or yard.  The person with MS may not cook as often or as elaborately. He or she may have to skip meetings, resign committees, or cancel the season tickets. For others the pace of life might be changed — there  may fewer or shorter family gatherings, or hand ball might be replaced with golf, or golf with video games.

Family members may be recruited to do things to help. How this works can also vary significantly. For the small minority who advance to the most disabling levels of impairment, it is help with walking, eating, and personal care. For others less help is needed, but some help may be greatly appreciated and may extend the ability of the person with MS to participate comfortably in important activities. This kind of help includes fetching drinks or snacks or other things to save him or her a trip up and down stairs; doing a greater percentage of the household chores either temporarily or permanently; cooperating with a reapportionment of household chores in order to give the more sedentary ones to the person with MS, and many other things. For some the only help that is needed is the understanding that sometimes they will have to rest instead of be involved in family activities. Some subtle ways of helping can also develop for particular individuals. For example, someone who has a primary symptom of emotional lability during times of fatigue may need only to have the family increase their tolerance for occasional outbursts, or the family may need to serve the function as an auxiliary monitor to tell the person with MS that they are showing signs of fatigue and send them off to bed. These are but a small sample of what family members do for loved ones with MS.

During all of these activities there are many points at which misunderstandings can happen. Take for example the person with MS who believes that there will be unpleasant consequences if he or she does not carry a full share of the chores at home. She may push herself unmercifully to get these things done only to be too exhausted to attend an important family event that other family members feel is much more important then these chores. Others in the family might prefer to do more then their share of the housework so that the person with MS will have energy left to have fun.

Another example would be of families who do not understand the full effect of fatigue. If the person with MS and his or her family does not understand the need of an energy conservation plan they will regularly be surprised by a collapse caused by fatigue. “Now what’s wrong? You were fine this morning.” These fatigue exacerbations (temporary increases in symptoms caused by fatigue) can also be misunderstood as real exacerbations, causing unrealistic panic in a family.

Families that have children have the difficult task of communicating why Mommy or Daddy can’t do what she or he might like. For toddlers and young children, simple explanations are best. “No, I can’t pick you up. Mommy is tired.” “Mommy is sick and has to rest today you can play with your toys here where Mommy can see you.”

Families also have to make different kinds of adjustments to raise children. Stay-at-home Mom’s will take care of children of this age differently- a family that once looked down on the use of a tether for a toddler may now find it to be essential if they want to allow a child to enjoy the outdoors when Mommy can’t run after her. Child-proofed rooms and homes may be more painstakingly prepared in order to save the person with MS the extra effort of pursuing a little one to keep him safe. Child care may be used more, not just to allow both parents to work, but sometimes to allow a stay-at-home parent to get needed rest. For families who are willing to forego conventional roles, Dad’s with MS may find staying at home to be a more effective use of their limited energy then working, or Mom’s with MS may find a sedentary job that pays for day care a strategy to extend her energy.

As children get older, better explanations are required. By age six they should have a reasonable grasp that Mommy, or Uncle Joe is not always well and sometimes needs to have special consideration. By eight or ten, they can understand that the disease has a name and may ask questions about it. In the teen years they may be angry at the disease for the deprivations it causes in the family and may focus that anger on the one who is sick. Each of these possibilities will interact uniquely with both the type and progression of the MS as well as the child’s normal development and the normal family dynamics that all families have. Unlike for adults and families in general, denial can be adaptive for children at certain stages of development, though it is important for their ongoing development that this denial is challenged when it means that they neglect the feelings of others or their own responsibilities.

For children of all ages it is important to be attuned to the questions the child has. Different children react in different ways to having MS in the family. Frequently children can be a great help if the family has to provide help for a parent. But they also have their own fears, sometimes unstated. “Will Daddy die?” “We all will die someday, but Daddy will live as long as anyone else his age and will be with us for many years.” “Will I get it?” “We can all get sick sometimes, and since this is in the family, you might have a chance at getting it, but the chance is still very low, so you will probably not get it.” “If Daddy gets mad at me, does he hate me?” “Daddy is feeling very tired and needs to be given rest time so he doesn’t have to be so grouchy.” “Why can’t Daddy play with me?” “Daddy can play with you from his chair, but he can’t run around in the yard with you.”

Like with changes in the activities of the person with MS, family activities can also be changed. The person with MS may be the designated reader for a toddler, for example,  or instead of walks together, watching movies together may be the activity of choice for a family with MS. There are many ways to cope and each family should be able to find them with effort and systematic attention.

Like with many other things, children need to have information about MS repeated. They may ask the same questions over and over again. This is appropriate and should not be discouraged. The more a family talks about MS, its consequences and the plan it has to cope with it, the better that plan will work. It has long been known that over-learned reactions and coping strategies work best during times of stress. Since the symptoms of MS often cause substantial stress in the family (and may also result from stress) making family coping a conscious, practiced thing can only serve to reduce the unpleasantness of MS symptoms.

There are many more variations on the theme of family coping that could be examined. The variations of MS are endless and how a family copes is even more variable. But some basic things can be understood. Denial rarely helps and desertion never functions positively in this disease. Understanding the disease in general and the specific symptoms and patterns the family member with MS has is crucial to coping in a family. Communication and full disclosure of the effects, consequences and prognosis of the disease is not damaging to healthy family coping, though the information should be adjusted to the match the age of the children.

MS is more then an individual illness. It is damaging to the whole family. Coping with MS is rarely an individualistic thing. It involves changing behavioral patterns that affect loved ones as much as the person with MS. Like with each individual, however, families also cope with this disease and can usually proceed to enjoy a normal, satisfying family life despite its presence. And while no one would ever wish MS on any person or family, the process of coping and adapting to this illness, like with any other hardship, can serve as a bonding, growth producing experience that can enhance the maturity and development of both children and adults alike.

MS and Pain

A recent email reminded me of an issue often neglected or misunderstood by people with MS (PWMS) – pain. In 1993, when I was diagnosed, there were still some medical professionals who said MS does not cause pain. Today, fortunately, neurologists and other physicians are accepting the nasty truth that it does.  MS does cause pain directly, indirectly, and sometimes very subtly. 

Most directly, MS pain is a result of damaged neurons which interfere with the communication between the body and the various pain centers in the brain.  All areas of the body are connected to the brain by long neurons covered with a myelin sheath.  In MS the myelin sheath, which works like the insulation on electrical wires, is attacked by the body’s immune system causing the malfunction nerve cells to which they are connected.  People with MS can get pain because signals do not arrive from the body to where they are expected in the brain.  In the same way pain can result when signals from the brain may not make it to parts of the body.

Faulty signals to and from the brain can cause pain in ways best illustrated by  phantom limb pain — the pain amputees experience in the missing limb. While there is no arm or leg to experience pain in phantom limb pain, the brain may interpret the absence of any signals from the missing limb as pain.  Because MS damage may similarly prevent the brain from getting a proper signal, the brain can interpret this as pain.  This is also how neuralgias occur — the brain doesn’t get the information it expects and interprets the absence as something that is not really happening – burning, itching, numbness or pain.

Similarly, the faulty signals can instruct muscles to act in ways that cause pain, tightening up either steadily (spasticity) or suddenly (spasms).   The misfiring or absence of a calming signal from the brain can allow pain to persist or grow. Sometimes the absence of these calming signals from the brain can allow the pain receptors to get hyper-sensitized so that even the smallest sensation may be experienced as painful. People with MS have also reported this affect with sensations of touch and temperature. This is the opposite of having no feeling at all.  As with every other MS symptom, this kind of pain can become worse during an exacerbation, when fatigued (fatigue exacerbation), or when overheated.

Pain of this sort is treated with both medication and pain management techniques. Physicians often prescribe Baclofen or Neurontin among many other medications. Tylenol or another over-the-counter pain killers might be all that is needed.  At other times, or for other people, even prescription medications may not be completely effective. For this reason, it is important for PWMS to work patiently with a professional to find the most effective approach.

Techniques that don’t involve medication include massage, acupuncture and other kinds of body work. There is both experimental and anecdotal evidence that they may reduce pain.  Physical therapy can also effectively reduce pain when the pain results from damaged or de-conditioned soft tissue.   Fatigue management is particularly helpful for pain caused by malfunctioning neurons. Since it seems that some MS impaired systems work better when rested than they do after exertion, keeping optimally rested can help. Going beyond the sensitive threshold of “too much” for a PWMS often results in increased discomfort. 

A second way pain can be worse for PWMS is over-worked muscles.  If the signals from the nervous system are inefficient, muscles may not tense and loosen in sync.  This can mean that more effort is required during a simple motion then if everything was coordinated.  Similarly, if there is one muscle in a muscle group that is not getting activated, the other muscles have to overcompensate.  Either way, it can cause pain. 

Treatments for this kind of pain are the same as for anyone else – heat (as tolerable) and ice; OTC pain relievers as pills or ointments; and more intensive attention from professionals as needed.  Medications for neurological pain will not be effective in this situation.

MS can also lower the pain threshold so that people with MS are more sensitive to pain.  This is subtle and takes some explanation.

The healthy brain works in the background juggling multiple signals, suppressing some and bringing others to conscious attention. The sensation of pain is managed in this automatic multitasking system.  The body sends constant signals to the brain. Some involve motion, others touch, others heat and cold.  Some are signals of pain.  The brain avoids bringing these signals to the forefront of attention until they are strong enough to cross a certain threshold.  Pain signals have to be strong enough to override the brain’s focus on other tasks in order to gain attention.

This is best shown in athletes. When a basketball player continues to play while hurt, she suppresses the pain and focuses on the game at hand. After the game when actual play no longer demands attention, the brain allows the pain signals to come through. During the excitement of the game, the pain sensations are ignored or suppressed, perhaps not even noticed.  Throughout this time the brain is getting signals of pain, but it overrides them with signals having to do with motion, strategy, and the effort to be competitive.

With MS the capacity to multitask is reduced or sometimes eliminated altogether.  In a brain that is already bypassing MS lesions and, perhaps, suppressing faulty signals coming from misfiring nerve cells, the demand to suppress or ignore pain may simply overburden the system.  As a result pain sensations can become impossible to ignore.  This is increased as fatigue worsens. Something as simple as background music may overload the brain’s sensory management system and may seem highly annoying, even painful.  Little pains of modest or even insignificant importance can demand the same attention from the brain as deep bruises or lacerations.

Paying attention to pain and pain management are important factors in the care of people with MS. For most people with MS, simple things are enough to manage pain: proper fatigue management; managing stress; the use of simple pain relievers; and an increase in comfort measures such as careful stretching, massage, or other body work.  For others, prescription medications or more aggressive behavioral techniques — hypnosis or a systematic program of progressive muscle relaxation — are needed.   Medications are often part of the strategy for managing pain.  Regardless of the level of pain, PWMS need to pay attention to it.

And to complicate matters even more, MS may be blamed for pain that comes from another cause.  New pain or patterns of pain should be addressed with a professional.  While chest or back pain can be MS related, it also can be caused by cardiac difficulties. Unusual bumps, bruises, and pain can be related to MS or to blood disorders. Muscle aches and pains can be arthritis or troublesome medication side effects.  Pain is a signal that says “pay attention.”  We should always listen to our bodies’ signals.

Pain can come directly or subtly from MS, it can be a secondary result from the difficulties of having MS or it can be a result of some other injury or problem.  Regaredless of the source, it requires attention both from the people who have MS and from those who care for them.

MS and Medications: Why people don’t always take their medicine.

One of my patients once told me that he pours his pills out in the morning and sometimes thinks he should douse them with milk and eat them with a spoon. He didn’t have Multiple Sclerosis (MS), but he did have several other chronic diseases that required many medications. He faithfully took his pills. Not everyone does.

Many people with MS have opted out of taking recommended medications. When I was first diagnosed in 1993, an insurance study made the Internet rounds claiming that, over the course of a lifespan, people with MS had no greater use of medical services than the population at large. This study was done well before we started getting bi-annual MRIs and $50,000 a year prescriptions.

Many people with MS still don’t use much medication. They make do with Tylenol for aches and pains, and perhaps they take one or two other pills to manage specific symptoms. They may add a few vitamins and a couple of naturopathic remedies that make sense to them.

Some people are downright phobic about taking medications. They endure debilitating fatigue, pain, cognitive difficulties, and work disability, refusing to use the medications that is often helpful in managing MS symptoms.

What lies at the root of this behavior? Neurologists and patients report positive results with pills and other treatments for symptoms. Research shows the effectiveness of immunomodulating injections and, now, oral medications. Still, some resistant malcontents refuse to take advantage of the great promise of modern psychopharmacology.

It would be easy to blame this on superstitiousness or the absence of education. But this would be both unfair and also inaccurate. There are numerous reasons why people may be shy of prescription medications. The benefits aren’t always that great, the side effects can be considerable, the results are sometimes subtle and slow to develop, the expense is frequently very high, and health care professionals don’t always prepare patients in ways that are effective.

In this country there is a long history of distrust for modern medicine. Indeed, it wasn’t until the discovery of the sulfa drugs, aspirin, and penicillin in the middle of the 20th century – less than 100 years ago – that allopathic (what we know as conventional) medicine started to move ahead in its contest with homeopathic (now also known as alternative, naturopathic or complementary) medicine for the hearts and minds of the people. Before that time, the popularity contest between two types of medical treatment was neck and neck. Allopathic doctors advocated large, aggressive doses of medication to fight disease at a therapeutic level. Homeopathic doctors advocated tiny, unobtrusive dosages of various substances to support the body’s natural reactions to disease. Sometimes they also recommended supplements and herbs. It was the specific effectiveness of large doses of medication for particular illnesses and the gradual development of successful combinations of surgical and chemical treatments for a large variety of illnesses that makes allopathic medicine standard practice.

But the homeopathic philosophy never went away. The sordid history of what allopathic advocates did to their patients before discovering effective treatments is probably part of the root of why this gentler, less intrusive style of treating illness has maintained its grip. But it is more than that, because the early excesses continue today with the high tolerance conventional allopathic medicine has for the side effects patients are expected to endure when illnesses are being treated. That the cure is sometimes worse than the disease is more frequently true than the medical community would like to admit.

The allopathic branch of medicine is thriving because its cures do work. Heart disease, cancers, infections, failed organs, medical problems of all sorts have been cured or managed. Until very recently life expectancies have lengthened every decade. There is no question that aggressive medicating for serious illness is a winner.

Does that make those who are medication-phobic foolish? On the contrary, it may make them cautious, even wise. MS is a clear example of the difficulty that allopathic approaches have for unconquered diseases.

The benefits of medication for MS aren’t always great.  There are effective medications to treat fatigue – Amantadine, for example. Yet the improvement an individual gets from the use of the medication may be minimal.  Indeed, many people don’t benefit at all, while others get tremendous help.  Provigil and Nuvigil are in the same category. Some get help, others don’t.

The now ten immune modulating drugs (drugs aimed at slowing the progression of the disease)  are an even clearer example that help from medications isn’t always ideal. For most of these medications initial studies indicated that there is a roughly 30-40% decline in progression as measured by the increase of brain lesions, but with a wide variety of individual responses. One exception is more effective, but has a life threatening illness as a possible side effect. More recent studies have also lowered the estimates of effectiveness as compared to the earlier studies.

It is a particular concern when a prescription medication causes unwanted and unrelated problems. Amantadine can make people nervous or jittery, as can other medications for fatigue. A popular medication for muscle spasms — Baclofin — can cause muscle weakness and lethargy, which is the last thing someone with MS wants. Each of the autoimmune medications has its own unpleasant side effects as well. One bad experience with a serious side effect can put a person off medicine for a long time. Shared stories of bad side effects can multiply misgivings.

In many medications the positive effects may be subtle and slow to develop, while the side effects may appear sooner and may actually peak in the first week or weeks of treatment, only to disappear or at least become more tolerable later. In my experience this has been most clearly illustrated when patients use antidepressants. Using most antidepressants, the patient may experience at the outset whatever side effects he or she is going to get. For the first week or two, or even three, the only effect a patient might get from a new medication may be some form of discomfort. It is only after persisting for a period of time that the beneficial effect actually starts to show.

This is even more dramatic with the use of immune modulating medications for MS. These drugs slow the progression of the disease. There is no expectation of getting better. They are taken only in the hope that the pace of MS will slow.

What does it mean when a person with MS starts taking a new drug to slow MS progression and also starts getting more frequent exacerbations? It may be that the natural progression of this particular disease was due to start getting worse. The medication may actually be preventing even more frequent exacerbations. Or the medication might not be working.

On the other hand, what does it mean exacerbations stop? It could mean that the medication is working well. Or it could mean that the natural progression of the illness has slowed.

For any individual there is no way to know for sure.  In practice, physicians often switch immune modulating medications if there is continued activity and are loath to change medications if there is reduced or little activity.  The danger here is that the medical professionals may themselves be a tad superstitious, operating as if these medications are more effective and predictable than is supported by the double blind studies.

But generally when a physician prescribes one of these medications, he or she is making a bet that in 20 or 30 years their patient will be better with this medicine than without it. They make this bet on the basis of research and sound clinical experience. Nonetheless, it is still a wager on the future, a wager that has frighteningly unpredictable consequences.

In the circumstance of these drugs to reduce exacerbations, the patient (or insurance company) spends 40, 50 or even 60 thousand dollars a year on this gamble, sometimes more. Other medications used for MS symptoms are not as expensive. Some may only cost a dollar or two a pill, which still can add up to a great deal over time. More than that, people with MS often take multiple medications. It is not unusual for someone to be taking a pill or injection to reduce the progression of the disease, medication for muscle spasms, medication for fatigue,  a pill to improve gait, medication for depression and/or anxiety, with an added pill to reduce urinary urgency and an occasional sleeping pill all at the same time. It is easy to reach thousands a month in medication costs. Those without insurance and unable to work will certainly not be able to take all of these medications. Even for those with insurance, the co-pays on multiple prescriptions can put a significant dent in the family budget.

So with all of these financial and psychological barriers to taking medication, why do people with MS take medication at all?

Typically because they desperately want to do something for their illness. Often people with MS have an image of people they have seen stretched out in geri-chairs in nursing homes, glassy eyed from pain medication, incontinent, unable to move, unable to see and barely able to speak. They have the memory of the fact that Kervorkian found proportionally more people with MS to kill than with any other disease. They fearfully imagine the canes, the walkers, the wheelchairs, the long, boring hours of waiting for someone else to do something that they used to be able to hop up and do for themselves and they are quite reasonably terrified. They get muscle spasms that keep them awake. They get annoying numbness. They have to run to the bathroom at the spur of the moment and every time they do this, it reinforces their hopes that there might be something, anything, that can be done that will delay or prevent things from getting worse. So, they take their medicine.

Often it works.  Continued studies of the older injectable drugs suggest that as a group people with MS are benefiting. There is no reason to suspect that the newer oral medications will be any less effective. Treatments for the symptoms of MS are even more successful. Baclofen does reduce muscle spasms. Amantadine and Provigil do work for many people to reduce the cognitive and physical aspects of MS fatigue. I.V. Solumedrol can stops many MS exacerbations. The antidepressants can reduce symptoms of depression for the 50 percent of people with MS who get depressed and may also help with fatigue. Anti-anxiety medication can be helpful for the 90 percent who have difficulty with anxiety. There is reason to hope that any particular individual with MS will be able to go outside and take a walk on his or her 65th birthday.

Yet every single one of these medications can have significant side effects. If a patient is not properly prepared for these side effects and has not examined the cost/benefit of the drug, a side effect can ruin the potential therapeutic effect. In other words, the person with MS can be scared off by something that may not, in the big picture, be a long lasting or significant aspect of the drug.

Treating professionals must be aware of the attitudes and learning history of their patients when prescribing medication. Simply handing out a script and expecting that a patient will call if there are problems is not enough. This sort of practice actually amounts to a barrier to the successful treatment of a chronic disease.

In prescribing, it is important to remember that among the population at large, the old battle between allopathic and homeopathic styles of treatment is not resolved. Patients want a good reason why they should take something so potent that it may cause collateral damage in their bodies. They want to understand what a medication is going to do for them.  They also want to know that their doctor is looking out for more than just what prescription to write.

There are a great number of things a health care professionals can suggest for people with MS that goes beyond taking medication. These non-intrusive interventions (without side effects) can make a great difference for any person with MS. Suggesting massage, encouraging the continuation of a trusted supplement, providing the name of a psychologist or counselor, having support group information available — all of these things tell the patient that the battle against this disease is not going to be won or lost on the basis of one medication even though the medications can be a formidable ally in the lifelong battle that is MS.

It is particularly important for a physician to take time when introducing a medication that may have difficult side effects. Some patients need to digest the idea that a medication might help, but at a cost. There is nothing wrong with a patient asking to think about a new potential medication. He or she may come back in a month or even six months after processing the idea and perhaps still will have more questions.

People with MS are usually quite aware that they are the ones who ultimately bear responsibility for their own health care. It is they who decide whether or not the costs outweigh the possible benefit.

But not every area of the world has physicians who can properly walk patients through with aplomb and warm support. Many times physicians expect to be used as consultants who provide the information and technical services to patients who are then expected to think about a medication’s various costs and benefits on their own. It is at this point where a person with MS may want to bring other people in on his or her team, a trusted family member, friend, or perhaps consulting a psychologist, a nurse, or a social worker with knowledge about MS. The National MS Society has a multitude of resources in this area and an MS navigator may be able to provide information or referrals that are critical when it is time to make decisions.

Regardless of where a person with MS falls in the philosophical continuum between allopathic and homeopathic remedies, each persons history for how and why they have arrived there merits respect. The barriers of cost, potentially limited effectiveness, side effects, and poor preparation may be overcome, but they will never be overcome without the effort of the person who is getting the treatment. There are treatments that are often effective. It is up to each individual with MS to decide if and how these treatments can be best used in their own effort to manage this very difficult disease.