Supporting You: Dealing with Difficult Emotions
Support Groups have enormous value for people living with Parkinson's Disease
(PO). They embrace each person inclusively and provide information, support,
social interaction and inclusion; factors that are highly important when dealing with all
the ramifications of PD.
Support Groups can deal with many peoples' emotions in the following contexts:
Grief - a natural emotion that arises from any kind of deep loss which takes the person
away from normal life tasks into a deep state of sadness. Grief is necessary for healthy
functioning. It is a response to a significant loss in one's life that changes its direction
forever. A diagnosis of PO embraces grief. It involves dealing with emotional and
physical pain, suffering, sorrow, anger, confusion and many more emotions: -
Grieving can occur at the time of the diagnosis and be expressed over a
particular period of time with a return to another type of normality that is a
departure from what was already in place.
Grieving can be complicated by other factors in a person's life such as other
medical conditions, relationships issues, work issues, relationships with one's
own social groups. All these issues affect personal wellbeing and functioning
for both the person with PO and their carers.
Pathological grief is a reality with PO as each symptom occurs and each stage
is traversed. This can be of lengthy duration as per the trajectory of PD.
Pathological grief can disrupt a person with PO and/or their carers' entire
meaning for their lives. This is a situation that requires ongoing support,
counselling and education in order to understand the ramifications of what is
going on in their lives.
Mourning is an active process that works to rebuild one's inner world by
experiencing the intense pain of the loss that has significantly changed a person
and their family in many ways. Adjustments are required throughout this
Loss - occurs when an event such as a diagnosis of PO occurs. It can lead to feelings
of fear, anger, insecurity and emotional upsets that are out of context at the time. Loss
occurs in PO at each stage and as each new symptom occurs. People don't realize
how much they took their so-called normal lives for granted until they are faced with
an indeterminate future, loss of expectations of a happy family life, ongoing career
opportunities, happy retirement, overseas travelling, participating in social events that
include lifetime friends (who often find it difficult to communicate) and a new role for
the spouse or family in the light of the emergence of a raft of disabilities that weren't
Loss can affect everyday life for a person with PO and their carer:
The practical aspects involve finding new ways to cope with everyday life from
dressing, eating, walking, sleeping and many more tasks.
The spiritual aspect may involve having one's faith and beliefs challenged and
in exploring new ways to interpret their lives in order to maintain meaning and
Worldview aspects- involve many global disasters are currently occurring
from local politics and global terrorism as well as domestic life as it's lived.
Where does all this fit from a new perspective of having PO?
Identity -the following questions may arise such as: Who am I now? Do I still
have my own identity? Am I still worthwhile? Do I still have self-worth?
A new diagnosis can be overwhelming and this is when Support Groups and
Counselling are helpful, particularly if the diagnosis occurs when there is a young
family, when the person and/or their spouse is still working, when a couple has just
retired and looking forward to travelling and being together to enjoy life without work
pressures, and many more scenarios. Many questions arise such as:
What will happen to me? Will I still be me?
How will we afford all these new medical expenses?
Will IIwe be able to keep on working?
Will I be totally disabled and not be able to communicate with my loved ones?
How do we move forward as a family/couple?
How do I cope if my wife/husband/partner can't cope and leaves?
Separation distress if the relationship fails.
I don't want to end up like that "person" sitting over there, drooling and dribbling.
Many people don't attend Support Groups in the early stages of their diagnosis
because of this issue. We run Newly Diagnosed Seminars twice per year to
address these needs.
Fear is a deeply seated emotion that drives many disruptive and difficult behaviours.
Many times, people are saddened that they have projected their fear onto their loved
ones. They feel a sense of betrayal of their relationships and the social structure to
which they belong. This is often shared by their carer who can be their spouse or
daughter/son. So much burden is placed on all members of the family at this time.
Fear generates feelings of guilt, sadness, anger, denial.
Anger is always a projection of fear and deep distress/sadness. Most people don't
want to hurt their loved ones. They just want to be loved and are afraid that as they
deteriorate, they may become less likely to be loved and accepted for who they are.
Anger has energy and if directed in a positive direction, can bring about more positive
assertiveness and clarity of thought. Anger can be managed through listening to others
in their support group and ongoing counselling. Listening to the experiences of others
who have gone through similar situations in their own lives and how they have coped
can be very helpful. We all learn from others and this can be assist us to re-evaluate
Telling our stories - this is the most significant aspect of being part of a
support group. We need to listen to each other and support each other through
the maze of symptoms that impact on peoples' quality of life.
Practicing Mindfulness techniques that focus on the here-and -now. Each
day is the most important moment in time. What we create in today will generate
positive emotions and coping strategies for what we deal with tomorrow.
Getting 'out there' - joining support groups, joining PO activities such as PO
Warrior; Parkinsong; PO Dancing; Art work; creative pursuits such as quilting,
crocheting, knitting, raising funds for support groups; participating in ongoing
research into PO; and, joining in the Fun Run-Walk each year and other
Dealing with one's emotions as a carer and as a person with PO can be a challenging
and ongoing journey. Grief and loss teach us that self-growth and self-actualization
are natural processes in the human life cycle. Creating the psychology of hope in every
day to transition above the biological and physical aspects of PO is important and life
sustaining. We need to build resilience as we create coping strategies to meet each
PO challenge as it comes along. We need to embrace change and know that every
day and in every way, we are still there at the centre of our beings; people who are
walking courageously along the path of life; supporting others and ourselves as we
explore the myriad of ways that people can find, to cope with every symptom and issue
what comes along. Support Groups can provide many of these strategies and we salute
their effectiveness within the family of Parkinson's. Know that each Support Group is
doing a magnificent job for every person who attends.
References and Further Readings
Barnard, D. (1995). Chronic illness and the dynamics of hoping. Chronic illness: From experience to policy, 38-57.
Blood, A. J., & Zatorre, R. J. (2001). Intensely pleasurable responses to music correlate with activity in brain regions
implicated in reward and emotion. Proceedings of the National Academy of Sciences, 98(20), 11818-11823.
Kropotov, J. (2009). Quantitative EEG, Even-Related Potentials and Neurotherapy (151 Ed). Oxford Academic Press.
Levitin D. J. (ED.). (2002). Foundations of Cognitive Psychology: Core Readings. The MIT Press
Salimpoor, V. N., Benovoy., M., Larcher, K., Dagher, A., & Zatorre R. J. (2011). Anantomically Distinct Dopamine
Release during Anticipation and Experience of Peak Emotion to Music. Nature Neuroscience 14(2),257-262.
Warner-Schmidt, J. L., & Duman, R. S. (2006). Hippocampal Neurogenesis: Opposing Effects of Stress and
Antidepressant Treatment, Hippocampus 16(3),239-249.