Caring for Your Mental Health
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A Guide for
Individuals
and Families
Caring for Your
Mental Health
Mental health, or emotional resilience, can be
defined as an individual’s ability to cope with
normal life challenges, manage a range of
emotions — both positive and negative — and
adapt to changing circumstances.
When an individual becomes overwhelmed
and experiences the inability to cope in certain
situations, they might move from emotional
resilience to emotional distress. Sometimes,
emotional distress can lead to making choices Stress and strong emotions can cause
that have adverse effects, leading to more physical symptoms, such as:
challenging situations. For example, someone fDigestive problems
who is under stress because they are facing fHeadaches
changing circumstances — like a new diagnosis, fHigh blood pressure
loss of function, or impaired decision-making — fChest pains
may begin to develop unhelpful patterns. During fSore muscles
these times, it is critical to get help from a fSkin problems
trusted friend, family member, medical provider, fShaking
or spiritual advisor. In addition, paying attention fIncreased heart rate
to one’s feelings and practicing self-care on a fFatigue
regular basis can improve emotional resilience fNausea
and mental health. fTrouble sleeping and/
or changes in sleep
patterns
Mental health and fOversensitivity to noise
neuromuscular disease and light
Being diagnosed or living with a neuromuscular
disease is difficult and can lead to stress and These symptoms may go away in time.
grief. These issues can worsen one’s current However, they can get worse or come
health, cause new medical problems, and back when you experience stress again.
increase inflammation in the body.
Every person is unique in how they react to Having a neuromuscular
situations; the same event may be experienced disease can affect the
differently by different people. In addition, direction of one’s life
neuromuscular diseases vary in their symptoms and may force a
and progression. Some people are affected person to change
from an early age, while others are diagnosed some of the
later in life. hopes and plans
they had for the
Some people are more likely to experience future. This could
a serious mental illness whether or not they include adjusting
have a neuromuscular disease. Risk factors for their living
developing mental illness can include but are situation, work or
not limited to: school plans, and
fPersonal history of mental illness relationships. All of
fFamily history of mental illness these changes can add
fSocial isolation up to an increased risk of
fLack of a support system mental health issues.
Cognitive changes with neuromuscular disease
Some neuromuscular diseases can cause changes in how a person thinks,
which can have an effect on their daily routines.
Cognitive changes can affect: A person with a neuromuscular
fLanguage, such as difficulty with disease faces unique challenges.
communication and trouble thinking of the They may experience frustration,
words you want to use while talking anger, embarrassment, self-pity,
fMemory and anxiety. These feelings may
fOrganization skills, such as starting, be perfectly natural reactions to living with
planning, or completing tasks the effects of their disease — if the feelings
fControl over emotions or impulses are temporary and do not interfere with daily
fJudgment of what is appropriate behavior living. They may experience these negative
fAttention span reactions at different times as they go
fSelf-awareness through developmental stages and as their
disorder progresses.
Family members need to be aware that
cognitive impairment can affect their If you are living with a neuromuscular disease
loved one’s medical care. Those living and notice any of the symptoms or feelings
with neuromuscular disease may have discussed here, share that with your caregiver.
a hard time communicating and may lack If you are not comfortable letting your caregiver
awareness, leading to poor compliance. If know how you feel, talk with a trusted friend,
someone with a neuromuscular disease family member, or spiritual advisor who will
experiences any of the above symptoms, listen and offer support. If your feelings are
caregivers should bring it to the attention overwhelming or you do not feel safe in your
of their treatment team. Many caregivers find environment, it may be time to reach out to
it helpful to write down their observations to someone else, such as your primary care
have on hand at doctor’s visits. provider or a mental health professional.
2
TYPES OF MENTAL HEALTH CONCERNS
Depression
Feeling sad, helpless, or
hopeless most of the day,
nearly every day.
Anxiety
An excessive amount of
stress or worry, most
of the day that you have
*
Some people find the
following tips helpful in
dealing with feelings of
depression and anxiety:
trouble controlling.
Depression can also include: 1. Get plenty of sleep.
fLoss of interest or Anxiety can include: 2. Eat well and drink plenty
pleasure in things that fEdginess or of fluids.
used to be enjoyable restlessness 3. Stop to find joy and
fSleep problems fHaving trouble paying positive experiences
fHaving less energy attention each day.
fFeeling discouraged about fBeing more tired 4. Exercise.
the future than usual 5. Practice deep breathing.
fChanges in appetite fFeeling nervous 6. Use a stress ball or
fNegative thoughts or afraid fidget gadget.
about yourself fFear of losing control 7. Try an activity such as
fCrying or wishing you fDisturbed sleep knitting, cooking, or
could cry gardening, even if it is
fFeeling restless, jittery, Anxiety can also show new to you.
or wound up up in the body as: 8. Perform a random act
fHaving trouble staying fMuscle tension of kindness.
focused fNausea 9. Play with a pet.
fHaving a hard time fShakiness 10. Record your thoughts
making decisions fHeadaches through journaling or
fLoss of interest in fChest tightness creative writing.
intimacy fPounding or 11. Listen to music you enjoy.
fWishing you were dead or racing heart 12. Use creative outlets such
having thoughts of ending fFeeling hot as playing an instrument,
your life fDifficulty breathing painting, or crafting.
fDiarrhea 13. Challenge your negative
fFeeling like you’re thoughts by thinking
choking about something you
do well, something
Some of these others think you do well,
symptoms can also or something you are
be signs of other thankful for.
medical conditions, so 14. Recognize your efforts by
it is important to see giving yourself a reward.
a healthcare provider 15. Set a routine and follow it.
to understand the
symptoms and rule out If these steps do not work,
other medical issues. contact your primary care
provider or a mental health
professional.
3To learn more about mental health resources,
Recognizing suicidal thoughts contact the MDA National Resource Center at
If you or a loved one is saying things such 833-ASK-MDA1 (275-6321).
as, “Life is not worth living,” or “I can’t do
this anymore,” seek immediate psychiatric
intervention, which could include calling 911, Each state has its own regulations for obtaining
going to the emergency room, or calling an evaluation for someone unable or unwilling to
the National Suicide Prevention Lifeline at request one. These regulations cover the steps
800-273-8255. for involuntary assessment and/or commitment if
someone may be a danger to themselves or others.
Thoughts of suicide or self-harm can be
triggered by: How caregivers can help
fLoss of friends and fPain It is not uncommon to notice a loved one with a
social connections fDisability neuromuscular disease experiencing a period of
fRecognizing that fLoss of frustration, anger, self-pity, or anxiety. If these
your life is taking a independence feelings have developed recently, you may be
different path from able to help by asking about their feelings and
fFeeling encouraging them to talk about what they are
those around you different
fA new, serious going through. You may be able to make some
from others changes to their environment that can help them
medical diagnosis for
you or a loved one cope better with challenges.
Statements and behaviors indicating suicidal However, if those feelings persist or your loved
thoughts should always be taken seriously. one is exhibiting signs of a mental health concern
It is important to bring this information to listed on the previous page, it is vital to ask
the attention of medical and mental health for help from a trusted friend, family member,
professionals as soon as possible. spiritual advisor, or medical provider.
Mental health resources
These resources can help you find a mental health professional or
other mental health support:
American Psychological Association National Suicide Prevention Lifeline
Psychologist Locator 800-273-8255
Child and Adolescent Psychology Today
Psychiatrist Finder
Substance Abuse and Mental Health
MDA Mental Health Hub Services Administration (SAMSHA)
National Helpline
MDA Resource Center
800-662-HELP (4357)
National Alliance on Mental Illness
(NAMI) HelpLine
800-950-NAMI (6264)
Images: iStock.com/kotoffei; SolStock; 24K-Production; Ridofranz
This resource was developed with the expertise and knowledge
of Deidre Devier, LCSW, PhD, Associate Professor, LSUHSC – NO
Department of Neurology, and Heidi Leffler, LCSW, BCD, Assistant
Professor of Clinical Psychiatry. mda.org • 1-833-ASK-MDA1
facebook.com/MDAOrg
@MDAorg
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