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Chapter 24: Michael J. Fox, Muhammad Ali, and YOU: Ten Ways to Make a Real Difference

Chapter 24: Michael J. Fox, Muhammad Ali, and YOU: Ten Ways to Make a Real Difference

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Part VI: The Part of Tens

Vote Early and Often
The shocking fact is that Americans are becoming increasingly apathetic
about voting. How often have you heard someone say, “It doesn’t matter —
politicians are all the same”? Well, if you as a PWP don’t care, who is going to
care? Your elected officials’ support for dollars for research and adequate
care options is vital for the future of treating and curing PD.
Absentee voting is always an option if getting to the polls is too difficult.

Get to Know Your Local Officials
Local elected officials work for you and often live in your community. Don’t
hesitate to talk directly to them about key issues that could impact you or
others with a chronic progressive condition like PD. For example, if a zoning
law is preventing a rehabilitation clinic from locating in your community, let
your elected officials know why this clinic is important for you and other
people with chronic conditions.
If the issue is a state or national matter, consider making contact (by phone,
e-mail, or letter) with an official’s senior staff person. Locally or nationally,
build relationships with your elected officials — not one of checking up but
one of informing that can lead to a difference for many people in the community (and votes for re-election).
Never underestimate the power of a single note or phone call. And don’t
forget to follow up! If you’ve written or called an elected official and been told
someone will get back to you, but no one has, call again.

Don’t Just Be Informed — Pass It On
Okay, you don’t want to overdo this but carpe diem — seize the day! Say
you’re at dinner with friends and the conversation has settled on politics.
You know a key bill’s coming up for a vote that can really impact PD research.
Talk about it! Relate its importance to facts that will stick in people’s minds
and perhaps lead them to contact their congressperson to cast a key vote.
A less in-your-face way to inform people as you go about your daily routine is
to stay involved and talk about projects and interests you’re involved in even
if they’re not PD related. Why? Because this is your opportunity to show that
PWP can be contributing members to society in spite of PD.

Chapter 24: Ten Ways to Make a Real Difference

Support Your Local Support Group
Attend meetings and consider getting more involved in the group’s effort to
influence community leaders (or even national politicians). Even if the support group isn’t specifically for PWP, you can find power in numbers. Signing
a petition, participating in a charity event, or raising money for research are
all ways you can help build a better future for PWP.

Rally Local Support
Consider ways you can build awareness through your local library, employer,
and community organizations. For example, encourage your librarian to
invest in informative books, videos, and CDs for people with chronic, progressive conditions and their care partners. Ask your employer and community organization leaders to offer literature and seminars that help people
with these conditions and their families to manage their time and caregiving.
Employers benefit from less absenteeism and a more focused and productive
work force, and community groups become more engaged in the needs of the
community. (Get things started by ordering a set of the excellent booklets
from the National Parkinson Foundation listed in Appendix B.)

Pitch Your Story to Local Media Outlets
People who put together the local news (print, radio, and television) are
eager to hear from you. Can you imagine how they would delight in a story
about a 60-something doctor with PD performing his first piano recital with a
group of kids? What about the young onset Parkinson’s disease (YOPD)
person’s care partner who also works fulltime, cares for their school-aged
children, and volunteers?
Before you call your local news desk, check with the person whose story you
plan to offer (even if that’s your care partner). In telling the story, include:
ߜ A local angle — the story is about a person in your community
ߜ The key that makes it unique and not just another health story — as in
the piano-playing doctor mentioned earlier
ߜ The visuals (for print and television; for example, is there a photo op at
the recital so a photographer can attend along with the journalist?)
Never forget that your story could help others struggling with chronic illness.

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Join the Parkinson’s Action Network
Advocacy requires conviction and passion for a cause. The national PD community has banded together (for the most part) and named the Parkinson’s
Action Network (PAN) to speak in Washington DC for the entire PD community. You can be a part of that national call to action by logging on to the PAN
Web site at www.parkinsonsaction.org or calling 800-850-4726 to find a
local or area chapter or to get on their mailing list for updates.

Raise Money for Research
Of course, if politics isn’t your gig, you can raise awareness as well as dollars
for research several other ways. For example, some events (such as a
marathon or walkathon) require quite a bit of organization and teamwork.
Sign up to volunteer and get your friends and family on board as well.
You also can be effective on your own. How many times have you read of
someone biking or walking across America and collecting donations along the
way to raise awareness of some cause? Personally taking action doesn’t mean
you need to plan a trek across America, but what else can you do on your
own to raise awareness and financial support? Try holding a yard sale with all
the money going to PD research or ask family and friends to make a monetary
contribution in your name to a PD organization in lieu of gifts on holidays,
birthdays, and other gift occasions. (After all, do you really need another
book, t-shirt, or CD?)

Celebrate National PD Month in April
PD gets its own month for national awareness — April (think springtime,
renewal, and hope). How appropriate! How can you and your care partner
mark this special month? The following are some easy ideas:
ߜ Donate a copy of this book (or another on PD) to your local library.
ߜ Plan to schedule one of the events suggested earlier in this chapter
during the month of April.
ߜ Go to New York City and take part in the annual Parkinson’s Unity Walk.
(Check out www.unitywalk.org for full information.)
ߜ Buy a couple dozen red tulips (a floral symbol of the fight against PD)
and pass them out to your friends, family, and everyone on your healthcare team to thank them for making the journey with you.

Part VII

Appendixes

I

In this part . . .

n Appendix A you find a glossary that defines terms frequently tossed around in the world of Parkinson’s disease. These are terms you should get to know because
your doctors, other people with PD, and even the journalists who report the latest PD news use them.
Appendix B is a collection of resources that we introduce
throughout this guide. The list includes national PD organizations with Web sites that can help in everything, from
locating a neurologist or support group to updating you
on the latest advances in medicines and treatments. We
also include a list of programs and assistive devices that
can make your life easier. Even if you don’t have access to
a computer (or don’t know how to use one), get your
child, grandchild, or the local librarian to help you discover these resources for enhancing your life.

Appendix A

Glossary
action tremor: An involuntary, rhythmic movement of the hand, arm, foot, or
leg when a person performs a voluntary action such as lifting a fork, writing,
or stepping onto a ladder. See resting tremor.
activities of daily living (ADLs): Routine activities that are part of a person’s
normal day (such as dressing, bathing, eating, toileting, transferring from bed
to chair, walking from one room to another, participating in social and leisure
activities).
advocacy: The process of influencing people via education, group actions,
and publicity for a cause.
agonist: A muscle that contracts so the body can perform a specific movement; also a chemical or drug that stimulates a specific receptor to signal a
desired action. See dopamine agonist.
akinesia: Also called freezing; temporary inability to initiate a desired
movement.
antioxidants: Body chemicals that neutralize free radicals.
antiparkinsonian drugs: Drugs or medicines for the management and control
of Parkinson’s disease and its symptoms.
apraxia: The inability to execute a voluntary movement despite normal function and mental understanding of the desired action.
ataxia: Loss of balance and coordination.
athetosis: Involuntary, repetitive movements, especially with the hands, fingers, and (sometimes) feet.
basal ganglia: Groups of cells deep in the base of the brain that help the
cortex in controlling voluntary movement and coordination.
bilateral: Occurring on or affecting both sides of the body or organ.

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Part VII: Appendixes
bradykinesia: The gradual slowing or loss of spontaneous movement that
results in impaired abilities to perform a task or change positions.
bradyphrenia: The gradual slowing or loss of ability to process information.
carbidopa: A drug that, when combined with levodopa, reduces the side
effects of levodopa yet improves overall effectiveness of levodopa by allowing more of it to enter the brain.
care partner/caregiver: Usually a family member (spouse, parent, sibling)
who provides the emotional (and eventually physical) support and care for a
person diagnosed with a chronic, progressive condition.
central nervous system (CNS): The network responsible for cueing the
human body’s mental and physical actions; consists of the brain and the
spinal cord.
clinical trial: The research and testing required by the Food and Drug
Administration (FDA) to determine whether new medicines, medical devices,
and treatments are safe and effective before approving them for patients.
cognition: Those mental skills necessary to process information (such as
perception, memory, reasoning, judgment, intellect, and creativity).
cogwheeling: The slow, jerky, or ratcheting sensation the doctor perceives
when moving a patient’s rigid limb at the joint.
computerized axial tomography (CAT or CT scan): A diagnostic computer
procedure that uses a series of X-rays to produce a two-dimensional image of
the body or specific body part.
Catechol O-methyltransferase (COMT) inhibitors: Drugs that block an
enzyme that breaks down levodopa before the levodopa can convert into
dopamine, thereby increasing the therapeutic supply of levodopa to the
brain.
deep brain stimulation (DBS): A surgical procedure that helps control symptoms of advanced PD; electrodes are implanted in the brain and controlled
through a battery-operated device known as an implanted pulse generator
(IPG) or pacemaker.
delusion: A fixed belief that is false, not proven by objective evidence.
dementia: The neurological condition or sign of progressive decline in intellectual ability (such as impaired judgment, memory loss, confusion, personality changes, and disorientation) caused by one or a combination of
underlying conditions, such as Alzheimer’s disease and strokes.

Appendix A: Glossary
depression: Sustained, prolonged feelings of hopelessness, helplessness, and
sadness.
diagnosis: A doctor’s conclusions based on a patient’s medical history and
symptoms as well as the doctor’s observations and tests.
dopamine: The natural chemical substance present in areas of the brain that
regulate movement, motivation, and feelings of pleasure. See neurotransmitter.
dopamine agonist (DA): Antiparkinsonian drugs that imitate and supplement
the brain’s naturally produced dopamine.
dysarthria: Difficulties with speech caused by impaired movement of muscles; results in slurred or muffled words or the inability to project one’s voice
or speak at a normal volume.
dyskinesia: Abnormal involuntary movements (examples are sudden muscle
contractions; rapid, jerky or lurching movements; fidgeting or restless movements of upper body, arms, legs, or head); may be a response to long-term
use of antiparkinsonian meds and may worsen with stress.
dysphagia: The impaired ability to swallow.
dystonia: A movement disorder that causes significant and unexpected
muscle contractions or spasms that result in abnormal and involuntary movement and posture. Can be a symptom of Parkinson’s disease.
essential tremor (ET): More common than primary PD, this movement disorder causes an uncontrolled tremor of the hands, neck, head or voice; most
apparent when performing a voluntary action, such as lifting a cup. See action
tremor.
executive function: The intellectual ability to set goals, make decisions, and
perform multi-stepped processes such as balancing a checkbook.
festination: A series of progressively quicker, shuffling, almost-running small
steps after walking is initiated; sensation of the upper body wanting to move
forward but the legs are unable to follow appropriately.
Food and Drug Administration (FDA): The federal body charged with monitoring clinical trials and assuring the safety and effectiveness of a medicine
or therapy before it’s available to the public.
free radicals: Potentially toxic substances produced by the normal metabolism in all human cells; left uncontrolled, they can damage or destroy vital
brain cells.

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freezing: The sudden and temporary inability of a PWP to initiate a movement such as going through a doorway or exiting a car. See akinesia.
gait: Medical term for walking; includes the individual style of walking.
gene: The building block of inheritance contained in every human cell; a
change in the gene can predispose the individual to a disease.
genetic: Anything related to genes or inherited characteristics, including
diseases.
globus pallidus: One of the areas of the basal ganglia most affected by the
lack of dopamine in Parkinson’s disease.
hallucination: Unreal perceptions that a person may experience while awake;
hearing or seeing objects or people that are not present. Visual hallucinations
may be a side effect of antiparkinsonian meds.
hypokinesia: Decreased or reduced movement.
hypomimia: The lack of facial expression and absence of eye-blinking caused
by Parkinson’s disease. Also called mask or “facial mask.”
hypophonic: Reduced vocal volume and clarity.
idiopathic: A diagnostic term meaning “of unknown origin or without apparent cause.”
involuntary movement: Movement that happens without the person’s intention or control.
levodopa (L-dopa): The most commonly used drug for treatment of PD;
restores levels of dopamine in the brain.
Lewy bodies: Abnormal, round clumps of protein in damaged and dying
dopamine-producing brain cells.
magnetic resonance imaging (MRI): A noninvasive, diagnostic imaging tool
that uses an electromagnetic field to create cross-sectional illustrations of
particular organs and systems in the human body.
mask: See hypomimia.
micrographia: The small, cramped handwriting due to impaired fine motor
skills in some PWP.

Appendix A: Glossary
motor fluctuations: Daily variations of the benefits from antiparkinsonian
drugs. Usually occur as PD progresses. Also called on-off phenomenon, wearing off, and dyskinesia.
movement disorders: A category of neurological conditions that impair
normal control of movements; includes Parkinson’s disease and similar disorders (parkinsonism disorders), essential tremor, dystonia, tics, chorea, and
other less common diseases.
multiple system atrophy: A neurological disorder characterized by parkinsonism that is poorly responsive to levodopa; typically associated early in its
progression with other signs of neurological dysfunction including low blood
pressure when standing (orthostatic hypotension), impotence, urinary incontinence, severe gait imbalance, slurred speech, incoordination, loss of cognitive function, and dementia.
National Institutes of Health (NIH): The primary federal agency charged with
conducting and supporting medical research.
National Institute of Neurological Disorders and Stroke (NINDS): The
branch of NIH that focuses on diseases and conditions that affect the brain
and central nervous system.
neurodegenerative: A neurological disease (such as Alzheimer’s and
Parkinson’s) marked by the progressive loss of neurons.
neurologist: A specialist in the diagnosis and treatment of neurological disorders of the brain, spinal cord, nerves, and muscles (such as PD, stroke,
Alzheimer, and multiple sclerosis).
neuron: A type of cell (mainly in the nervous system) that processes and
transmits information for specific functions.
neuroprotective therapy: Any treatment with the ability to prevent or slow
the loss of vital neurons affected by a neurodegenerative disease.
neurosurgeon: A surgeon specializing in the treatment of neurological
disorders.
neurotransmitter: The body’s natural chemicals (such as dopamine) that
send messages from one nerve cell to another or from nerve cells to muscles.
occupational therapy: Skilled rehabilitation techniques that help people with
neurological conditions perform routine daily tasks at home; maximizes physical potential through lifestyle adaptations and possible use of assistive
devices.

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on-off phenomenon: Severe motor fluctuations that are particularly frequent,
sudden, and unpredictable; also called “yo-yo” syndrome.
pallidotomy: A surgical procedure that lesions (burns) parts of the globus
pallidus to lessen PD symptoms; now largely replaced by deep brain stimulation (DBS).
palsy: Also called “paralysis;” loss of the ability to move a body part.
Parkinson’s disease was originally called “shaking palsy.”
parkinsonism: A group of movement disorders characterized by a variable
combination of tremor, rigidity, bradykenesia, and postural instability.
Parkinson’s disease (PD): A slowly progressing neurological disease resulting
in the loss of dopamine-producing brain cells in the substantia nigra. The disease normally responds to the medication levodopa.
person (or persons) with Parkinson’s disease: See PWP.
physical therapy: The use of stretching and strengthening exercises and
machines to help PWP maintain (or regain) strength, balance, coordination,
flexibility, endurance, and function for as long as possible.
pill-rolling: A characteristic finger tremor in which the thumb and index
finger slowly rub against each other as if rolling something into a small ball.
Typically (almost exclusively) seen in patients with Parkinson’s disease.
placebo effect: A change or improvement (physical or emotional) in a patient
who has been given a medication with no therapeutic benefits (as in clinical
trials); there is no medical explanation for the change.
positron emission tomography (PET scan): A diagnostic imaging tool that
uses an injected radioactive form of various compounds (such as glucose levodopa) to produce color maps of the sections of the brain and assist in the
diagnosis of Parkinson’s disease.
postural instability: A person’s lack of balance or coordination when walking;
usually results in awkward forward- or backward-leaning that may result in a
fall as the person attempts to compensate for lack of balance.
postural tremor: Tremor or shaking that occurs when a person’s arms are
stretched outright to the front.
prognosis: A doctor’s prediction of a condition’s progression based on the
patient’s medical history and response to treatment as well as the doctor’s
knowledge of the disease.