A Letter to the Newly Diagnosed

A letter to the newly diagnosed, 9/8/2017

Someone famous has again been quoted as saying “I have MS, MS doesn’t have me.” They lie. MS had me 20 years before my 1993 diagnosis. It ruined hot summer days at the beach in my teens and exhausted me on choir tours in high school and college. It made me fail in outdoor summer jobs, demoralized me when I engaged in sports, loosened my grip on drum sticks during concerts, and turned mild colds into debilitating weeks of painful suffering.   No one understood, least of all me. At times it made me unreasonably grouchy in public places, leaving me humiliated by ill-considered statements I made in groups of people I respected. MS has “had” me all of my life and when people say it doesn’t “have” them I lose respect, for they have not grasped the full level of the challenge of MS, and are, therefore, unqualified to speak about this disease.

I am aware of how fortunate I am, even after this litany of complaints. My diagnosis came at a manageable time — had it come earlier, I might not have attempted a rigorous training program in Clinical Psychology. I might have avoided long hikes and camping vacations. Had it come later, the misunderstood difficulties may have grown to interfere with my professional activities before I learned strategies to compensate. My point is not to complain about the miseries of the illness, but to complain about the false bravado and denial inherent in the chest thumping nature of the “MS doesn’t have me” approach to coping.

That way of coping is fraught with awful consequences down the line. Whatever success I had in managing this illness came from accepting that it formed a formidable barrier that I had to keep in mind at all times. Successes before my diagnosis came hand in hand with social and personal costs, things I falsely attributed to the failings of others or of my own character. After my diagnosis, whatever successes I had came because I learned how to reduce my expectations, and accommodate the strictures of the illness. In this way, MS is not a disease to “beat” on an individual basis (fighting to find a cause and a cure is another thing altogether) but a disease to sneak around, to outwit. It requires me to be a trickster with a dragon, lulling it to sleep so I can steal jewels and bits of gold from under it’s nose. Forgetting that it exists and blasting forward meets with doom. It can’t be defeated. You’ll get burned if you try.

Most of the newly diagnosed will have many years of life, often decades, in which to enjoy satisfying professional activity, enjoyable family life, countless moments where you make memories that will sustain them in their later years. But these things will happen in the company of a monster unique to each individual, one that must be coddled, anticipated, and accommodated.

If you are fortunate, like me, you will have willing and loving companions in this adventure. It is a journey we must take, for its advent and ultimate end, like life for every human on the planet, are not in our control. But we still will have moments of great joy, satisfaction and pleasure. Hang on. This ride is going to be a little rough.

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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™

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.

Neuropsychological testing for MS related cognitive changes

Status

People with Multiple Sclerosis (MS) sometimes notice that their thinking is not as clear as it once was. Older people sometimes have similar observations. Psychologists have compared these observations to those of younger people and found that when young people forget, they blame it on stress or distraction or too much going on at once. Older people almost always blame their age. Since MS has a reputation for disturbing brain functioning, it is easy to blame the disease for momentary lapses that more accurately may be attributed to distraction, inattention, or normal forgetfulness.  But many times a person with MS does experience cognitive changes. When there is a question about such cognitive changes, neuropsychological testing may be recommended.

Neuropsychological testing is a subcategory of psychological testing in general. Most people have had some form of psychological testing. Tests like the SATs, tests sometimes described as aptitude tests, tests of personality — all of these originally were prepared by psychologists in order to measure aspects of human behavior and experience. Such tests are very popular and have proliferated. Caricatures of these tests are frequently seen on Facebook and in other social media and are used for entertainment.  But for serious reasons and with serious research a large number of tests were constructed in order to measure cognitive difficulties — trouble with the speed, accuracy, and complexity of thought. These have been called neuropsychological tests.

Unlike some other areas of measurement, there is no single neuropsychological test that measures everything that the brain does. For this reason, psychologists who have studied neurological functioning and measurement, known as neuropsychologists, have collected a variety of tests that sample most aspects of human neurology.

These tests are combined and referred to as a battery of tests. Not all neuropsychologists use the same battery. Some psychologists prefer to use the same battery for every patient, reasoning that this will best describe the patient’s neurological status. Other psychologists prefer to select different measures from a large number, choosing these measures according to the specific question or according to how the patient has done on tests administered earlier in the evaluation.  

Regardless of the way any neuropsychologist approaches test selection, each is trying to do the same thing:  to describe the details of how a patient’s brain is functioning. In addition, the neuropsychologist may be seeking a description of deficits and, perhaps even reasons why these deficits exist.  

Equally important are the conclusions drawn and the recommendations made after understanding how a patient performs on various tests. Sometimes a neuropsychologist can be helpful in suggesting ways to compensate or cope with difficulties. Other times he or she can only describe what is going on and confirm the distressing suspicion that nothing can be done to improve it. Drawing conclusions and making recommendations may be helpful in focusing the efforts of the treatment team in a more uniform direction.

For example, I once referred an elderly woman for neuropsychological testing because she was not responding as fast as anticipated after a fall. The neuropsychologist was able to describe a number of subtle, though important, cognitive difficulties and indicated that she would never be able to achieve the level of independence the rest of the treatment team had expected. She also recommended that we send her out of the nursing home and back to her apartment as soon as possible, but to do so with some assistance at certain times of the day. In this way, she could have a better quality of life without facing pressure to perform better than she was able.

Neuropsychological testing may sound frightening or intimidating. Indeed, testing should be taken seriously. But it should be no scarier then any number of tests each of us has undertaken in high school or college. To prepare for these tests we were told to try to get a full night’s rest, eat a good breakfast with a normal amount of coffee or tea, and try to adhere to our normal routines as much as possible. As with some standardized tests, there is nothing that should be studied or practiced in advance. The tests are designed to reflect regular performance on a normal day, so the day should be as normal as possible.

Not everyone with cognitive difficulties will benefit from neuropsychological testing. The testing can be strenuous and, depending on insurance coverage, can be expensive. If someone is in a stable situation, and shifts in cognitive ability are not likely to make much difference in his or her life, knowing the details of the deficits may not be of great value.  But sometimes knowing the status of one’s mental functioning makes a big difference. When this is the case, neuropsychological testing can be extremely valuable.

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.