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Jacopini, G. (2000). The experience of disease: Psychosocial aspects of movement disorders.
Journal of Neuroscience Nursing, 32(5), 263-265. Retrieved from

This article reviews the impact on quality of life of degenerative disorders and
psychosocial problems that can arise
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Ray, R. A., & Street, A. F. (2006). Caregiver bodywork: family members’ experiences of caring for
a person with motor neuron disease . Journal of Advanced Nursing, 56(1), 35-43.
doi:10.1111/j.1365-2648.2006.03977.x. Retrieved from the EBSCOhost database in the
Ashford University Library.

This article delves into the care of an individual with a degenerative disease. It also
considers the needs of the caregiver.

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Moore, K. A., & Seeney, F. (2007). Biopsychosocial predictors of depressive mood in people with
Parkinson’s Disease. Behavioral Medicine, 33(1), 29-37.

This article examines the psychosocial correlates to depression in individuals with
Parkinson’s disease.
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SOC313 Family Document
Throughout this class, we will meet two families, the Maldonado’s and the Olson’s. The two families are
considered extended family via Sarah and Joe Miller. We will learn about their relationships, work
environments, and the psychosocial effects related to health challenges faced by each family. You will
use this document for the discussions and written assignments. We begin with the Maldonado family.
Manny and Donna Maldonado have been married for 42 years. Manny is age 65 and Donna is 63. Sarah,
Mike and Becky are the children of Manny and Donna Maldonado. Sarah is the eldest daughter,
followed by her brother, Mike, and her sister, Becky.

Manny is Hispanic American and owns a 20,000-acre produce farm that has been in his family for
three generations. Although Manny speaks and understands English, he prefers to speak Spanish.
This creates a language barrier between Manny and other family members who do not speak
Spanish. Donna is fluent in Spanish, having learned the language from Manny and his family.
Donna works on the farm with her husband. She has long suffered from mood swings, which is
mostly frustrating to Manny. He says it is “brujeria,” meaning her moods are caused by witchcraft
and “mal d ojo” or “evil eye.” He believes someone put a spell on Donna. When this is believed to
be the case, the person will visit a Curandero (healer) who will perform a healing ritual.
o Sarah works as a nurse, and recently took Family Leave of Medical Absence (FMLA) due to
her children’s recent issues.
o Joe is the President of Illusion Technologies. Joe’s parents are John and Ella Miller. More
details about Joe are shared in the Olson family section below.
 Lucy, age 20, has a history of severe substance use disorder, along with having been
diagnosed with bipolar disorder. In the past two years, Lucy has had four different jobs.
She is unable to hold a job long-term. She now works on her grandparent’s produce
 Josh, age 17, has been sneaking away with friends, smoking marijuana and skipping
 Evan, age 10, was recently diagnosed with leukemia; however, he has not yet started
treatments. Evan’s doctors have recommended chemotherapy, radiation, and a bone
marrow transplant. Sarah and Joe intend to follow this treatment plan.
Mike Maldonado is age 36. He currently works for a state University as a tenured faculty of
the College of Agriculture and Life Sciences. Mike was recently diagnosed with HIV.
Dan was Mike’s husband. He recently passed away at the age of 38 due to an AIDS-related
illness. They were married for 10 years. Mike and Dan did not have any children.
Becky is age 33. She is divorced and working on the family produce farm as well as
attending a local college at night to complete her bachelor’s degree in Child Psychology. She
has one child, Abe.
 Abe is age 12. He is a good student, but his behavior has changed recently, showing
anger and defiance towards both of his parents and several teachers at school. His
mother, Becky, has been treating Abe’s behavioral changes with diet and alternative
Next, we will meet the Olson family.
Frederic Olson was married to Mary Olson. Mary passed away 10 years ago at the age of 77. Frederic is
age 87. Ella is the only child of Frederic and Mary Olson.

Fredric has pronounced symptoms from Parkinson’s disease. He has tremors and balance problems,
along with muscle stiffness and gait (manor of walking) changes. He struggles to begin any
movement. However, once he is moving, he cannot stop easily. His gait has changed to smaller
steps and shuffling.
As he progresses through the stages of the disease, Frederic needs increasing assistance with his
activities of daily living (ADLs), which entails bathing, dressing, food preparation, eating, taking
medications, et cetera. He recently moved to an Assisted Living community and only leaves the
facility for medical appointments. The family visits Grandpa Frederic on an alternating schedule at
his new home every week. The Assisted Living community has regularly scheduled social events in
which Grandpa Frederic actively participates.
o Ella is married to John Miller. Ella and John are both 70 years old. John and Manny
Maldonado are best friends. Ella and Manny grew up together on their neighboring farms.
Ella and John recently sold their 10,000-acre farm to the Maldonado family since the two
farms were adjacent to each other.
o Ella has been trying to heal herself from breast cancer using a variety of natural means. She
grew up on a farm and was accustomed to using home remedies. Therefore, Ella is not
willing to utilize Western medicine practices.
o While the alternative health care methods kept Ella in remission for a few years, recently
she learned the cancer has returned. In addition, the cancer has metastasized to her lungs
and bones. Ella has chosen to forego Western medical treatment options such as
chemotherapy, radiation, and pharmacological breast cancer treatment medications. She
has requested to live out her last days at home. Ella has agreed to be admitted to Hospice
home care, with John as her primary caregiver. Ella and John are seeking quality palliative
end of life care.
o John, Ella’s husband, is of Native American origin. He is well educated and uses Western
medicine, but relies heavily on Native American methods, such as meditation and banishing
bad spirits from their home. John speaks fluent Spanish, having learned the language as a
o John is an attorney for the Maldonado produce farm and his son’s company, Illusion
o John and Ella’s children are Sam, age 50, Lila, age 45, and Joe, age 43.
 Sam is divorced and has no children. He works as a foreman on the Maldonado produce
farm. He is an alcoholic and has been diagnosed with severe substance use disorder due
to his alcohol addiction. His alcohol use is affecting his position as the foreman. Over
the past few months, he has experienced emotional outbursts, missed work, and started
arguments with the workers, third-party wholesalers, and Al Goldberg (Olson family).

Sam has been upset that his parents sold the family farm to the Maldonado family
instead of passing it down to him.
Lila, age 47, is married to Al Goldberg. She is a Social Worker for the state. Her job is
very stressful as her caseload includes at-risk children. There is a great deal of
documentation required; therefore, she works many 10 to 12 hour days. Lila is
overweight and has Type II diabetes. She has not controlled her weight or diabetes well.
Recently, her doctor changed her medication. She is now taking daily insulin injections
to help manage her diabetes.
Al, age 47, Lila’s husband, is the general manager of the Maldonado family produce
farm. Al had first option for buying the Olson family farm. He opted out of purchasing
the farm and agreed with the sale to the Maldonado family. He has no known health
issues; however, due to an early childhood trauma, he is afraid of hospitals and funeral
 Alisha is Lila and Al’s only child. She is 20 years old and is currently attending college
full time on a nursing scholarship. The college campus is an hour away from her
parent’s home. She lives on campus in the dorms, does not work at this time, and
has no known health problems.
Joe, who is Sarah (from the Maldonado family) Miller’s husband, is the President of
Illusion Technologies, a rapidly growing company with 50 employees. He has a patent
pending on two security-based software programs that could be worth millions. He and
his father are in negotiations to purchase land to build a state-of-the-art office building.
Sarah, Joe’s wife, is a nurse and recently took a Family Medical Leave of Absence (FMLA)
due to the health and behavioral problems with her children. Details about Joe and
Sara’s children are shared in the Maldonado family section.
The family members share a long history of friendship and love of farming. They have shared many life
events, such as holidays, births, and deaths. Their families have been intertwined for generations
through the raising of the children and grandchildren. For the most part, the families get along well.
However, even though they share some of the same cultural traditions and backgrounds, they do clash
from time to time. For instance, some of the Olson family members are not in full agreement with Ella’s
use of home remedies and alternative treatments for her breast cancer. However, the Maldonado
family understands and supports her choices. Further, Ella is encouraging Sarah Miller and Mike
Maldonado to pursue Complementary and Alternative Medicine (CAM) to treat Evan’s leukemia and
Mike’s HIV. The members of both families are dealing with very busy schedules and major health
Degenerative Disease:
Huntington’s Disease and
Parkinson’s Disease
Juice Images/SuperStock
Kenneth Lambert/Associated Press
Learning Objectives
1. Compare the biological differences of two neurodegenerative diseases
2. Describe how a neurodegenerative disease affects different individual, familial, and social domains
3. Understand the different implications of an early-in-life diagnosis versus a later-in-life diagnosis
4. Demonstrate an understanding of medical management and treatment approaches for a neurodegenerative disease
5. Consider larger social issues that affect individual and family needs of those diagnosed with a
neurodegenerative disease
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Section 3.1 Introduction to Neurodegenerative Disease
3.1 Introduction to Neurodegenerative Disease
eorge, you’re slumping. Sit up straight.” George was attending his niece’s wedding
rehearsal dinner, and it was his younger brother Steve, the bride’s father, who
scolded him. George’s wife Joan was both surprised and relieved. She was surprised
that Steve would criticize George in public, but she had noticed George’s increasingly bad posture
and was relieved that others in the family were aware of it and pointing it out to him.
A chance discussion with a friend several months later gave Joan a clue to what was happening.
Joan’s friend described changes in her husband, who had just been diagnosed with Parkinson’s
disease (PD). They were quite similar to the changes Joan was seeing in George. After this breakthrough, it took another three months before they were able to see a neurologist who specializes
in movement disorders. When they did, the diagnosis was confirmed at the first appointment.
George and Joan were lucky—it often takes several visits to many physicians over many months to
correctly diagnose PD, and George’s initial symptoms were not the classic ones.
PD and Huntington’s disease (HD) are two of the three most common neurodegenerative
diseases. (The third is Alzheimer’s disease, which is covered in “Psychiatric Conditions” in Chapter 7.)
This first section examines the biological basis of physical, psychological, and social problems seen
with these two degenerative diseases, as well as common misperceptions. The second section
applies Bronfenbrenner’s system of human ecology to these diseases over the life span. The third
section delves into treatment approaches, and the final section covers social issues such as testing, stigma, caregiver burden, and the continuum of care.
Definition and Brief History
In degenerative disease, the structures or functions of a particular body system, tissue, or organ
deteriorate over time, leading to progressive disability. A wide range of disorders falls into this
category, including osteoporosis (bone loss). In neurodegenerative disease, the neurons (nerve
cells) in the brain are primarily affected, leading to dysfunction (loss of normal activity) and death
of cells in specific areas of the brain. Examples include Alzheimer’s disease and other dementias,
PD, prion diseases (induced misfolding of specific brain proteins), motor neuron diseases (Lou
Gehrig’s disease [amyotrophic lateral sclerosis, or ALS] being the most common), HD, and several
less prevalent ones.
Although it is not clear what starts the process, the affected person begins to have symptoms as
more and more cells in a particular part of the brain sicken and die. Symptoms of neurodegenerative disease can vary widely and depend on which parts of the brain are affected. For example, in
one person, nerve cells in the part of the brain that controls movement, the motor center, might
be affected, and that person develops tremor (involuntary trembling or shaking), usually in one
limb. In someone else, the part of the brain controlling speech might be affected, making it difficult for that person to express ideas in words.
Evidence shows that neurodegenerative disease is becoming more common. Between 1990 and
2010, the worldwide burden of neurodegenerative disease, which includes mortality, disability,
and decreased life expectancy, has increased dramatically. Compared with 1990, the estimated
number of deaths in 2010 attributed to PD more than doubled, and the number of deaths due to
Alzheimer’s disease and other dementias more than tripled. As people live longer, more people
reach ages when PD and dementias develop. As a result, more people are being diagnosed with
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Section 3.1 Introduction to Neurodegenerative Disease
these diseases and dying from them, so the total number of people dying from PD and dementias
has increased dramatically during the last 20 years. As a larger number of people are developing
these neurodegenerative diseases, the total number of person-years (number of people multiplied by the number of years) lived with disability has increased (Lancet Neurology, 2013).
In addition to being classified as neurodegenerative diseases, both HD and PD are sometimes
considered movement disorders. Abnormal movement (also known as ataxia) is a major aspect of
both diseases. This section compares and contrasts the biology of HD and PD and how the biology
of each disease leads to various physical, psychological, and social problems. Table 3.1 contrasts
the features of HD and PD side by side.
Table 3.1: A comparison of Huntington’s disease and Parkinson’s disease
Huntington’s Disease
Parkinson’s Disease
Autosomal dominant, genetically inherited
90% of cases are sporadic, meaning a chance
outcome not due to a genetic cause
Causes progressive movement, cognitive
(mental), and behavioral symptoms
Four major areas are often affected: the motor
system, cognitive or thought changes, behavioral
and emotional changes, and the autonomic
nervous system
In the United States, about 30,000 people
diagnosed with HD; more than 250,000 others
are at risk for having inherited it. Worldwide
prevalence of 2.7 per 100,000
U.S. prevalence between 500,000 and 1,500,000,
(second most common neurodegenerative
disease after Alzheimer’s disease)
Overproduction of the neurotransmitter
dopamine is at least partly responsible for
movement disorders in HD
Dysfunction and death of neurons in the
substantia nigra decrease the amount of
dopamine available to simulate nerves in the
brain’s motor regions, and this lack of dopamine
creates motor symptoms
Onset typically between ages 30 and 50
Onset usually during ages 50s or 60s
Predictive testing available (more than 90% of
people at risk for HD do not undergo genetic
No objective test for PD; diagnosis based on
clinical observation
Motor or movement symptoms often become
evident in ages 40s or 50s
Early symptoms include impaired sense of smell,
constipation, REM sleep disorder, slow reaction
time, excessive daytime sleepiness, and impaired
executive function
A progressive disease with no treatment that can
slow down, stop, or reverse its course
A progressive disease with no treatment that can
slow down, stop, or reverse its course
Classic motor symptom is chorea (dancelike,
uncontrolled rapid and jerky body movements)
Classic motor symptoms include tremor, rigidity
or stiffness, bradykinesia, impaired gait, and
postural instability or balance problems
Treatment goals are palliative: to reduce
symptoms, maintain functioning, and maximize
quality of life
Treatment goals are palliative: to reduce
symptoms, maintain functioning, and maximize
quality of life
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Section 3.1 Introduction to Neurodegenerative Disease
Table 3.1: A comparison of Huntington’s disease and Parkinson’s disease (continued)
Huntington’s Disease
Parkinson’s Disease
Speech and language therapy, extra nutrients,
physical therapy, and drugs that treat symptoms
(e.g., agitation, depression) only
Drugs used to treat motor symptoms either
directly replace dopamine, delay its breakdown,
or stimulate its synthesis and release
(combination of levodopa and carbidopa,
which replaces the brain’s decreased dopamine
Death from medical complications of the
underlying neurological disorder often occurs
10–20 years after clinical diagnosis
Mortality risk over 20 years approximately twice
that seen in a population of people without PD
Huntington’s Disease
The condition we now know as HD was described in the medical literature in 1872 by the
physician George Huntington. Many members of his family throughout generations seemed to
have the same unusual disease. The disease was first called Huntington’s chorea, because of
the dancelike, uncontrolled, rapid, and jerky body movements seen in people with HD (chorea
is Greek for “dance,” from which we get the word choreography). The illness was renamed in
the 1980s, when nonmovement symptoms (e.g., cognitive and behavioral) were recognized as
central to its course.
Genetic Role
HD is an inherited disease that causes progressive movement, cognitive (mental), and behavioral
symptoms. Eventually the person with HD becomes completely dependent on others for activities
of daily living (self-care activities such as feeding, dressing, grooming, bathing, mobility, work, and
homemaking). It usually causes death 17 to 20 years after symptoms appear (Roos, 2010). Unlike
many inherited diseases, HD is autosomal dominant: Dominant means the presence of one copy
of the defective gene with exces …
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