Image: Rita Amador
(The following was a Power Point presentation I created for the
2016 ALS Association Clinical Care Conference held in San Diego,
Nov. 2-4, 2016. I've modified it into a 3-part post in order
to share it with you here on my
ALS and Wellness Blog)
Part 1
Fortunately for me, most of my life experiences did not include extreme hardship or adversity. Oh sure,
I've faced various challenges throughout my life, but nothing equal to that of being
diagnosed with ALS!
As a lifelong health and fitness enthusiast,
culminating with 25 years managing a hospital-based wellness program in Iowa -
- I taught wellness to healthy individuals as well as those living with a chronic
illness. Often I was invited as a guest speaker by various local medical support groups.
Having the diagnosis of ALS, put me on the other side of the table; facing my own adversity, searching for my own answers
and - - needing help.
Mid-way into my second year of living with ALS, along with encouragement and input from the
Tucson ALS Clinic team members and the Arizona ALS Association, I wrote a
self-help
eBook for others who like me were living with this strange illness. I shared personal humorous anecdotes to describe my first year with the disease and documented my emotional
transition from initial shock and sadness to finally feeling balanced and
optimistic.
The book received positive attention worldwide and led me
to create and author ALS and Wellness, an online blog
that continues to share more examples of ALS-related wellness motivation,
inspiration and humor. I joined several ALS Facebook groups, tweeted and read
other’s blogs and personal stories.
But it wasn’t until I was well into my sixth year of
living with ALS that I attended my very first ALS support group meeting. Eager
to make new acquaintances, I looked forward to sharing news about my
eBook and
Blog as well as learning what others were doing. The meeting began with each person stating
their name and telling everyone a bit about themselves.
A woman sitting near me began with, “Hello everyone, my
name is “- - - -. “ Then matter-of-factly, she continued with; “I’ve had ALS
for three years now and……… I’m waiting to die.”
The room fell silent - - but only for a few moments; introductions
carried on; no one commented, acknowledged or seemed shocked in any way at her
announcement.
Three months later I received word that this poor woman
had indeed passed away.
I was stunned.
Image: DodgertonSkillhause
That experience launched my new quest to learn more about
why those of us with ALS all have such different outlooks and how I can help
others find their emotional balance while living with ALS.
The emotional impact of ALS on patients including their
caregivers, family and friends is immense. While no two journeys with ALS are
alike we can learn valuable lessons
from those who have found balance and continue to live full lives while
managing their decline in physical function.
Many factors influence length of survival and quality of
life for someone with ALS. But only one factor exists that you, the patient can
have a direct influence over - - Your own psychological well-being.
For some a positive state of mind is easily mastered. For
others, the struggle feels endless.
Studies show that for the person with ALS, contending
with the steady loss of physical function most often leads to less
socialization and increased isolation. In addition, the growing feelings of loss
of control and having lost meaning for one’s life give rise to the state of abject
hopelessness.
Studies also show that experiencing a lack of meaning
in life is a predictor of hopelessness and for patients with ALS; hopelessness
is a strong predictor of suicidal thoughts 4,5
Until only recently,
the assumption was, “If a person has ALS,
then he/she must be depressed and have a low quality of life.” 2
But we continue to see many patients who accept their
diagnosis and seem to effortlessly “move on” with their lives. They “find a
way,” adopt a personal mission and not only continue to participate in family
and social events; many join fund raising and awareness campaigns as well. Others
travel, join sporting events and remain noticeably positive, optimistic and
hopeful.
Their challenging life crisis is faced with resilience
and a changed sense of priorities. They transition through adversity, cope with
and survive change.
Yet both groups share the very same diagnosis - - that of
having ALS!
Can these resilient behaviors be adopted by others?
I
believe they can and will share with you exactly how, through the use of the ALS Life Dimensions Model. Using it has
helped me immensely and I believe it can be a valuable tool for you as well. Something you can use to support specific behaviors to improve your mental well-being
and quality of life.
When I analyzed the past six years of my own life with ALS,
I noticed a familiar pattern emerging. Without having a conscious intent to do
so, I was following the very same principles of wellness I had taught to others
those many years ago. These included various stress management techniques and
the Six Dimensional Model of Wellness developed in the 1970s by Dr. Bill
Hettler, University of Wisconsin at Stevens Point and co-founder of the
Wellness Institute.
His model represents elements and behaviors by which
anyone can create their own pathway to optimal living. Today his theory
continues to be taught to health students, is used in professional settings and
is widely regarded a defining theory for the term “wellness.”
The six dimensions of wellness are: Occupational,
Physical, Social, Intellectual, Spiritual and Emotional.
Even though current trends in our ‘body conscious’
society encourage us to equate optimal health with diet, exercise and looking
young, Dr. Hettler’s model shows us that high level wellness or optimal living
can be achieved even by those considered “unwell;” especially when judged on
their age or life condition.
Since those early days in the 70s, when Dr. Hettler first introduced
his model, subsequent wellness programs modified it a bit by adding more
dimensions such as: the environment and civil responsibility. But when asked as to which wellness model is
the best, Dr. Hettler simply replied, “The one you use.” So, I knew that I
could adapt it for my current needs as well.
I was using five dimensions: Physical, Emotional, Mental,
Social and Spiritual. Why five? These were the areas that I found myself
repeatedly addressing and reassessing during each of these past six years. Here is the model I created:
Let’s pause for a moment and look at just one more
important model. This one will help put
all the pieces together. Published in 2015, it represents a thematic synthesis
of 29 studies covering 342 individuals with ALS in which researchers identified
two pathways, or ‘emotional choices’ made by ALS patients when experiencing
loss. It might seem a little "busy" at first, but take your time to look it over - - following the pathway or loop on the right side, then the one on the left.
The two loops show how patient choices led to either enabling feelings of hope
and coping or, disabling those same feelings.
Responses that disabled hope and coping were:
·
Disengaging from roles, activities and
interactions and,
·
Having periods of greater dependency on others
and increased isolation.
This in turn led to greater periods of succumbing and as
the patients continued to experience on-going changes or loss, they finally gave
in to hopelessness. As I mentioned earlier, hopelessness is a strong predictor
of suicidal thoughts. 4,5,6,7
That’s not very uplifting news and certainly not new news
to those of us living with the disease!
Let’s look instead at what enabled sense of hope and
coping. These responses included:
• Challenging
the loss or problem by reappraisal.
• Accepting
the loss or problem without resigning to it.
• Focusing
on what could be done to aid the situation.
• Retaining
control, autonomy or agency.
• Relying
on supportive relationships.
• The
proactive use of functional and technological aides.
"But wait," you might be thinking,“Those behaviors are easier said than
done!”
That’s where my ALS
Life Dimensions Model comes in and the three-step process that helps us learn how to choose and implement enabling behaviors along with building stronger coping strategies. All of which will help you face each ALS-related
change in your life with more confidence and emotional strength.
The Enabling Model will be our road map that guides us and our ALS Dimensions Model will be the method we
use to move from one stage to the next.
--------------------------
I look forward to your feedback and comments - - as well as your success stories!
 |
Dagmar Munn
ALS and Wellness Blogger |
References
1. Cure – A Journey into the Science of Mind
Over Body, Marchant, Jo. PhD., Crown Publishers; 1 edition (January 19,
2016)
2. Rabkin,
Judith G., Albert, Steven M., Rowland, Lewis P. and Mitsumoto, Hiroshi. (2009)
How Common is Depression Among ALS Caregivers? A Longitudinal Study. Amyotroph
Lateral Scler. 2009 Oct–Dec; 10(5-6): 448–455. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888701/
3. Soundy
A. and Condon N. (2015) Patients experiences of Maintaining Mental Well-being
and Hope within Motor Neuron Disease: a Thematic Synthesis” Front Psychol.
6:606.dol:10.3389/fpsycg. 2015.00606 4
4. Plahuta,
J.M., McCulloch, B.J., Kasarskis, E.J., Ross, M.A., Walter, R.A., and McDonald,
E.R. (2002). Amyotrophic Lateral Sclerosis and Hopelessness: Psychosocial Factors.
Soc. Sci. Med. 5,2131–2140.doi:10.1016/S0277-9536(01)00356-2
5. Blackhall,
2012). Blackhall, L.J. (2012).Amyotrophic Lateral Sclerosis and Palliative Care:
Where We Are, and the Road Ahead. Muscle Nerve 45,311–318.doi:10.1002/mus.22305
6. Averill,
A.J., Kasarskis, E.J., and Segerstrom, S.C. (2007). Psychological Health in Patients
with Amyotrophic Lateral Sclerosis. Amyotroph.Lateral Scler. 8, 243–254.doi:10.1080/17482960701374643
7. McLeod,
J.E., and Clarke, D.M. (2007). A Review of Psychosocial Aspects of Motor Neurone
Disease. J.Neurol.Sci. 258,4–10.doi:10.1016/j.jns.2007.03.001
8. The
Six Dimensions of Wellness - - The National Wellness Institute
9. Pagnini,
Francesco and Castelnuvo, Glanluca. Psychological Issues in Amyotrophic Lateral
Sclerosis. Frontiers in
Psychology. February, 2016. ISSN 1664-8714, ISBN
978-2-88919-758-3, DOI 10.3389/978-2-88919-758-3
Acknowledgements
Thank you!
University
of Arizona ALS Clinic at Banner UMC
Katalin
Scherer, MD
Holli
A. Horak, MD
Donna McArthur, PhD, APRN, BC, FAANP
ALS
Association of Arizona
