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PLAINTALK FOR THE FAMILY, PART I
Copyright 1993 National Multiple Sclerosis Society

by Sarah L. Minden, M.D. & Debra Frankel, MS, OTR
Plaintalk About MS for Family Members, Part I

Multiple sclerosis affects not only the person with the illness,
but also family members and friends. In this pamphlet we explore
some of the problems families face and describe ways in which
others have handled them.

Many chapters of the National Multiple Sclerosis Society offer
support groups where family members can share their concerns and
find encouragement. We have designed this pamphlet to be
evocative of a meeting of one of these groups. In it, you will
find husbands and wives, children and parents of people with MS,
speaking frankly about the strains and challenges -- and
opportunities -- of living with someone with MS.

NOTE: The questions and comments which follow are typical of
those voiced by families about MS. Just as the experience of MS
itself varies from person to person, so too do the concerns of
families in which there is MS.

The responses provided are based upon professional advice,
published material, and expert opinion, and do not
constitute therapeutic recommendations.

The National Multiple Sclerosis Society recommends that families
discuss their own particular questions or concerns about MS with
their personal physicians or other qualified professionals.

What Is MS?

MS is a disease of the brain and spinal cord (central nervous
system), usually diagnosed between the ages of 20-40, in which
the covering of the nerves (myelin sheath) is destroyed
(demyelination).

Like insulation on electrical wires, myelin insures rapid
transmission of nerve impulses from the brain to move a body part
and from the body to the brain to interpret sensations.

When myelin is destroyed the messages are not transmitted
effectively so movement is slow or uncoordinated and sensation is
altered. While at first there may be healing and return to normal
function, later a scar (called a plaque) is formed which
permanently interferes with nerve transmission and
motor or sensory function.

Damage to the myelin can occur at any time and affect any part of
the brain or spinal cord. Because there are multiple areas of
scarring (sclerosis) the disease is called multiple sclerosis.

Each person with MS will have a unique set of symptoms depending
on where in the central nervous system the demyelination occurs:
weakness, numbness, incoordination, loss of balance, visual
problems, loss of bladder or bowel control, difficulty speaking,
or dizziness. Fatigue is also a very common symptom.

MS is neither fatal nor contagious. Some very few people who
become bedridden with MS may have a shortened life expectancy
because they develop a serious infection.

Diagnosis

The diagnosis of MS is very difficult. There are no laboratory
tests that prove that someone does or does not have MS. Some
tests like computerized axial tomography (CAT) scans, magnetic
resonance imaging (MRI) scans, evoked potentials, and analysis
of cerebrospinal fluid may suggest the diagnosis, but none is
foolproof.

A neurologist or other physician will likely make the diagnosis
when there are definite signs of involvement of multiple parts of
the central nervous system.

This will usually mean that there has been more than one episode
of neurologic impairment and more than one kind of symptom, e.g.
weakness in one arm AND the other leg, weakness AND numbness,
weakness AND bladder problems.

Because some people may have only a single episode, most
physicians are unwilling to make the diagnosis of MS until there
is good evidence for multiple lesions.

While this may lead to long periods of uncertainty for both
patient and physician about what the symptoms mean, most people
will agree that it is best to be sure of the diagnosis before
making it.

What Happens to People With MS?

The course and outcome of the illness depend on how often there
are episodes of demyelination and how much of the brain and
spinal cord are involved in the disease process. About 70 percent
of people have what is called relapsing-remitting MS in which
exacerbations (new symptoms or worsening of old symptoms) are
followed by periods of complete or partial recovery (remission)
while about 30 percent have symptoms which continue to worsen
without a remission (chronic progressive MS).

Many people think the worst, that everyone with MS ends up
paralyzed in a wheelchair. In fact, only about one-third of
people become severely disabled, while one-third have a mild
course with very few restrictions and one-third become only
moderately restricted, needing a cane or crutches to move about.

What Causes MS?

We don't yet know what causes MS. However, destruction of myelin
seems to be due to an abnormal response of the immune system in
which cells that normally protect against illness react against
the body's own tissues (autoimmune response).

A virus or other agent to which an individual is exposed in
childhood might be the trigger for MS later in life. MS is not a
genetically transmitted or inherited disease. There appears to
be, however, a slight genetic susceptibility to the disease, as
evidenced by a small increased risk of MS in close relatives.

Are There Any Treatments For MS?

Many people receive medication (e.g. prednisolone, prednisone or
ACT) for acute exacerbations. There are also medications that
can give some relief for specific symptoms such as muscle spasms
or incontinence.

Active research on immune regulation has led to the experimental
use of various drugs in the hope of stabilizing or slowing the
progression of the disease. In addition, general measures such as
a nutritious diet, appropriate exercise, and adequate rest are
important

Early Days and Diagnosis

MS is so hard to diagnose! My wife had strange symptoms that none
of the many doctors we saw could explain. The more symptoms she
had the more she thought she was "going crazy." . . .

When MS begins dramatically, with loss of vision (optic neuritis)
or paralysis, it is clear something is seriously wrong. Often,
however, early symptoms are mild and transient. Neurologic
examination and laboratory tests may be normal. The diagnosis may
not be made for many months or years.

This discrepancy between a person's experience and what others
see is confusing: people may think the symptoms are
exaggerated or that the patient is anxious or depressed.

When we finally learned the diagnosis we felt guilty because we
had been so fed up with dad's complaints. . . .

Guilt is a common feeling among family members; many people
regret how frustrated or angry they were before the diagnosis was
made. It is a natural mistake to misinterpret someone's
complaints as psychological if you cannot see anything wrong with
him.

Family members should not be so hard on themselves: how could
they have known what was wrong when specialists found it
difficult to figure out?

Our initial reaction on hearing our son's diagnosis was
anger. . . .

Many people feel intensely angry when they learn the diagnosis.
It seems, and is, unfair. Sometimes the anger is directed against
the doctor who made the diagnosis, or against others in the
family.

Family members may find themselves quarrelsome, irritable, and
full of blame. It takes time for them to realize that it is the
disease they are angry at, not each other, and to recognize there
is a common problem to tackle.

I felt nothing at all. I was numb, in shock. . . .

Some people protect themselves from emotional pain by feeling
nothing. Denial of feeling is a normal reaction to intense
emotion that seems too much to handle. It is common during the
first weeks and months after the diagnosis is made.

Over time, people begin to face the realities of the situation.
Denial presents a problem when it interferes with obtaining
appropriate medical care or making necessary life adjustments.
Denial affects both the person with MS and family members. Each
one moves beyond it at his or her own pace.

Living With MS

My husband denies his disability by refusing to use a cane
even though he falls frequently.  This is very frustrating for
us. . . .

While some people with MS or their families may say that they
know the MS exists, they may act as if they don't believe it.
Going from one physician to another hoping to find out it isn't
so, or trying costly, unproven treatments are forms of denial.

Refusing to believe that something is true is different from
hope. Hope involves accepting reality with an optimistic outlook
and making reasonable efforts toward ameliorating an unfortunate
situation.

What we find hardest to deal with is the unpredictability. . . .

People with MS never know from day to day, or even from hour to
hour, whether they will feel well or fatigued or weak. It is
typical for MS symptoms to fluctuate: Will the person with MS be
able to join in the family's activities? Will special help be
needed? Will some hoped-for event have to be cancelled?

This unpredictability is frustrating. It can lead to
misunderstanding and conflict: Is the person really so unwell?
Should he or she be pressed or left alone?

It makes it hard to plan for the future: Should the family buy
that new house, or will there be too many stairs? Will there
still be two incomes with which to meet the mortgage payments?
Should the home be remodeled now for a wheelchair? Should the
person with MS stop working?

Uncertainty may be easier to live with if it is expected
and planned for. There may be less disappointment when plans fall
through if an alternative plan has been arranged, "just in case."

I get very angry at how things have changed, but I feel
guilty about my feelings. . . .

Anger and guilt are two of the most common feelings that concern
families in which there is MS. It is natural to feel angry about
the changes that occur with MS and the demands the illness places
on a family: a drop in income, new responsibilities, changes in
traditional roles.

These are real practical and emotional burdens that everyone has
a right to be angry about.

My wife is so self-centered and angry these days that it's very
hard to live with her.

Some people with MS become so focused on just getting through
each day that they pay less attention to other people. Their own
feelings, thoughts, and body functions become the objects of
their emotional investment rather than their family members.

They may become angry and critical of those caring for them and
believe that the situation would improve with a different doctor,
a better therapist, a more supportive family.

When family members work hard to be sensitive and helpful to the
person with MS, this angry criticism or lack of interest
understandably provokes disappointment, hurt, and anger in
return.

Understanding that the feelings of the person with MS are not
uncommon and usually pass with growing adjustment to the disease
can help families take complaints and disinterest less personally
and feel more tolerant. It may also help to let the person with
MS know how the family member is feeling.

Most of the time I don't mind helping at home but
sometimes I can't stand it. One day I lost my temper and
told my mom that I really hated having to do so much
extra work, then I felt badly that I yelled at her. . . .

Tension builds when family members fear that the expression of
strong emotion will exacerbate the MS. Holding back feelings,
however, may lead to angry outbursts, avoiding the person with MS
or blaming him for everyone's distress.

In the end, such tension, anger, and loneliness are far more
painful than the natural airing of feelings would have been.
Talking frankly helps family members understand the strain that
each one feels and recognize each other's needs.

At some point I stopped being angry all the time and became very
sad.

Anger may hide feelings of sadness. The many losses from MS lead
to feelings of grief: waves of painful emotion, tears that seem
to come from nowhere and don't stop.

There may be trouble sleeping and disinterest in food or
activity. Some people don't want to be alone, others seek
solitude. These feelings may arise when the diagnosis is made, in
anticipation of what will come, or may be delayed for many years,
until disability has begun to interfere with daily life.

When the grieving process is allowed to follow its natural
course, there usually comes a time when the limitations of the
illness are accepted and energy is renewed for achieving as much
satisfaction in life as possible. When grief is stifled, the
sufferer remains stuck in anger and bitterness, unable to move
forward to a more comfortable and adaptive position.

When I look at my wife I feel so helpless. Sometimes i
think I just can't stand it any longer.

Helplessness is painful. It makes people feel childlike and weak,
frightened and angry. Sometimes people pretend to themselves that
they can stop the MS or could have, if only... and that makes
them feel guilty. Or they try to help too much, in the wrong
ways, at the wrong times.

Facing that there are real limits to how much anyone can do is a
first step toward recognizing the vital role of family members in
helping the person with MS feel loved and valued and as
independent as possible.

I can give up a great deal for my husband, but then I reach a
point of being annoyed . . . .

It is a paradox, but true, that when people help so much that
they have no time for themselves, they are not really helping as
much as they think they are.

Even the strongest person will at some point feel burdened and
angry. He may take out his frustration on the person he wants to
help or become so guilty and depressed over these natural
feelings that he will have nothing left to give.

While it may be difficult, family members need to arrange time
for their own activities. Some communities offer respite services
to give families (and people with MS) a much needed break.
Support groups for family members in which people share
information and strategies for coping can help overcome feelings
of isolation.

The understanding and guidance of people "in the same boat" can
make a big difference in living with difficult situations. Some
people find that stress management techniques help them cope more
effectively.

We never seem to go out or have friends over anymore. . . .

When families are overwhelmed with the care of a chronically ill
person and adjusting to new roles and responsibilities, they may
have no time or energy for a social life. This can lead to
feeling alone and isolated. Some people think that their friends
don't understand what they are going through.

Others worry that they are so depressed and preoccupied that no
one will want to be with them. Unfortunately, avoiding friends or
rejecting their help may push them away. While socializing may be
more difficult than it has been, it is an important source of
emotional well being.

It helps people feel more "normal" to be with others, to go out
and do things together. While some friendships may flounder, most
remain intact. Families often come to realize that their friends
had not pulled away, but that they themselves had drawn back from
their friends.

Indeed, friends generally welcome learning about how the person
with MS and the family are really feeling; they appreciate clear
and specific instructions about how to help.

We seem to be having more trouble coping now than when my husband
was first diagnosed five years ago. . . .

It is not uncommon for the kinds of stresses and painful feelings
we've been discussing to occur a number of years after the MS
begins. Many people with MS have little wrong with them at first,
and even after a serious relapse may return to their usual level
of functioning.

They can get  around, work, participate fully in family and
social activities. It is only when the disease progresses and
places limitations on daily functioning that many people begin to
recognize how MS has affected their lives.

I find it difficult to deal with my husband's loss of sexual
function. . . .

MS can affect sexual functioning in both men and women. As with
any other chronic illness, sexual desire may fade. In addition,
MS plaques in the spinal cord may interrupt the pathways for
sensation and arousal in men and women and, in men, for having
erections.

Like other symptoms, sexual dysfunction may come and go; this
unpredictability makes most people anxious about sexual
involvement. As a result, they may avoid sex altogether or the
anxiety itself may interfere with whatever normal sexual function
remains.

These kinds of sexual problems can make the entire marital
relationship tense and unhappy. In turn, other stresses may make
it difficult for a couple to feel loving and intimate with each
other. Talking openly about sexual difficulties and working
together to find other ways to give and receive pleasure allows
many couples to have satisfying sexual relationships.

We both want to have a child, but I am afraid pregnancy will make
my wife's MS worse. . . .

Research suggests that pregnancy has no negative effect on the
overall course of the illness although there may be a greater
chance of exacerbation following a pregnancy.

MS does not appear to affect the developing fetus or to
complicate delivery. Most neurologists would not discourage a
couple from having a child. The major issue is caring for the
child should the parent with MS become too disabled. Such
difficulties ought not to be exaggerated or minimized, but
approached realistically.

Talking with people who have MS who are raising their children
now can be very helpful.

Even though I don't have ms, I've been quite depressed. All we
talk about are doctors and medicines. There is no fun any more,
just arguments and misunderstandings. . . .

Family members can become quite discouraged and depressed. They,
too, have lost a great deal. They may feel helpless and hopeless,
unappreciated nd resentful. Sometimes family members feel guilty
about seeking help for themselves, believing they should be
tougher, or that they don't deserve the special attention of a
counselor.

But how can a family member be of help to the person with MS if
he or she feels beaten and demoralized?

We can no longer share the interests and lifestyle that brought
us together. Sometimes I think we'd both be better off if we were
divorced. . . .

The strains that MS places on a marriage cannot be
underestimated. Much of what a couple had planned and worked
toward now seems impossible. Both partners feel cheated.

Some couples adopt goals that are more feasible, and although
disappointment remains, they can achieve these more limited
aspirations. Some spouses, however, find themselves unable to
give up their wishes or change their lifestyles and seek a
separation or divorce.

This, of course, is difficult for everyone. With the help of
friends, family, and professionals, couples often can work out
separation agreements that take into account the emotional and
physical needs of both people.

About the Authors

Sarah L. Minden, MD is a psychiatrist at The Brigham and Women's
Hospital and Cambridge Hospital, Harvard Medical School, Boston,
Massachusetts. She works with persons with MS and their families
and conducts research on the psychological aspects of MS.

Debra Frankel, MS, OTR is the Special Projects Manager for the
Massachusetts Chapter of the National Multiple Sclerosis Society.
She has authored and edited several publications about MS in her
thirteen years with the MS Society.

This publication was developed through the generosity of the
Bafalin Fund of the Massachusetts Chapter, National Multiple
Sclerosis Society.

Printing and distribution costs were assumed by the National
Multiple Sclerosis Society.

Acknowledgements

The authors wish to acknowledge the following persons who
contributed to this booklet: Beverly Brown, RN, M.Ed; Pam
Cavallo, MSW; Linda Samuel, MSW; James Lehrich, MD; H. Richard
Tyler, MD; Lynn Stazzone, RN; James E. Miller, Ph.D.

Copyright, 1987 Massachusetts Chapter, National Multiple
Sclerosis Society, 400-1 Totten Pond Road, Waltham, Ma., 02154,
Revised 1992.

DISCLAIMER: The National Multiple Sclerosis Society is proud to
be a source of information about multiple sclerosis. Our comments
are based on professional advice, published experience and expert
opinion, but do not represent therapeutic recommendations or
prescription. For specific information and advice, consult your
personal physician.

Transmitted:  94-04-21 08:51:11 EDT

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