Raising awareness of Parkinson's

Irene Miller

Special to the Village news

Are you aware April is Parkinson’s Awareness month? And April 11 was World Parkinson’s Day? Are you aware that every six minutes, someone is diagnosed with Parkinson’s disease?

MJ Fox foundation estimates suggest that Parkinson’s affects nearly 1 million people in the United States and more than six million people worldwide. The Parkinson’s Association of San Diego estimate 60,000 people are affected in our county.

Quoting from The Institute of Neurological Disease, in the United States alone, the cost of treating PD is estimated to be $14 billion annually. Indirect costs, such as the loss of productivity, are estimated to total $6.3 billion each year.

As the U.S. population ages, these figures are expected to rise rapidly. The number of people diagnosed with PD in this country is expected to double by 2040.

What is Parkinson’s disease? Researchers believe that in most people, Parkinson's is caused by a combination of environmental and genetic factors. Certain environmental exposures, such as pesticides and head injury, are associated with an increased risk of PD.

Still, most people have no clear exposure that doctors can point to as a straightforward cause. The same goes for genetics. Certain genetic mutations are linked to an increased risk of PD. But in the vast majority of people, Parkinson’s is not directly related to a single genetic mutation.

Learning more about the genetics of Parkinson’s is one of our best chances to understand more about the disease and discover how to slow or stop its progression.

Aging is the greatest risk factor for Parkinson’s, and the average age at diagnosis is 60. Still, some people get PD at 40 or younger. (Read more about young-onset Parkinson’s.)

Men are diagnosed with Parkinson’s at a higher rate than women and whites more than other races. Researchers are studying these disparities to understand more about disease and health care access and to improve inclusivity across care and research.

The NIH explains the disease as a movement disorder of the nervous system that gets worse over time. As nerve cells (neurons) in parts of the brain weaken, are damaged, or die, people may begin to notice problems with movement, tremor, stiffness in the limbs or the trunk of the body, or impaired balance.

As symptoms progress, people may have difficulty walking, talking or completing other simple tasks. Not everyone with one or more of these symptoms has PD, as the symptoms appear in other diseases as well.

There is no cure for PD, but research is ongoing, and medications or surgery can often provide substantial improvement with motor symptoms.

The four primary symptoms of PD are:

1. Tremor or shaking which often begins in a hand, although sometimes a foot or the jaw is affected first. The tremor associated with PD has a characteristic rhythmic back-and-forth motion that may involve the thumb and forefinger and appear as a “pill rolling.” It is most obvious when the hand is at rest or when a person is under stress. This tremor usually disappears during sleep or improves with a purposeful, intended movement.

2. Rigidity (muscle stiffness), or resistance to movement, affects most people with PD. The muscles remain constantly tense and contracted so that the person aches or feels stiff. The rigidity becomes obvious when another person tries to move the individual's arm, which will move only in short, jerky movements known as “cogwheel” rigidity.

3. Bradykinesia is a slowing down of spontaneous and automatic movement that can be particularly frustrating because it may make simple tasks difficult. Activities once performed quickly and easily, such as washing or dressing, may take much longer. There is often a decrease in facial expressions (also known as "masked face").

4. Postural instability, including impaired balance and changes in posture, can increase the risk of falls.

PD does not affect everyone the same way. The rate of progression and the particular symptoms differ among individuals. PD symptoms typically begin on one side of the body. However, the disease eventually affects both sides, although symptoms are often less severe on one side than on the other.

People with PD often develop a so-called parkinsonian gait that includes a tendency to lean forward, taking small quick steps as if hurrying (called festination), and reduced swinging in one or both arms. They may have trouble initiating movement (start hesitation), and they may stop suddenly as they walk (freezing).

Other problems may accompany PD, such as:

• Depression – Some people lose their motivation and become dependent on family members.

• Emotional changes – Some people with PD become fearful and insecure, while others may become irritable or uncharacteristically pessimistic.

• Difficulty with swallowing and chewing – Problems with swallowing and chewing may occur in later stages of the disease. Food and saliva may collect in the mouth and back of the throat, which can result in choking or drooling. Getting adequate nutrition may be difficult.

• Speech changes – About half of all individuals with PD have speech difficulties that may be characterized as speaking too softly or in a monotone. Some may hesitate before speaking, slur, or speak too fast.

• Urinary problems or constipation – Bladder and bowel problems can occur due to the improper functioning of the autonomic nervous system, which is responsible for regulating smooth muscle activity.

• Skin problems – The skin on the face may become oily, particularly on the forehead and at the sides of the nose. The scalp may become oily too, resulting in dandruff. In other cases, the skin can become very dry.

• Sleep problems – Common sleep problems in PD include difficulty staying asleep at night, restless sleep, nightmares and emotional dreams, and drowsiness or sudden sleep onset during the day. Another common problem is “REM behavior disorder,” in which people act out their dreams, potentially resulting in injury to themselves or their bed partners. The medications used to treat PD may contribute to some sleep issues. Many of these problems respond to specific therapies.

• Dementia or other cognitive problems – Some people with PD develop memory problems and slow thinking. Cognitive problems become more severe in the late stages of PD, and some people are diagnosed with Parkinson's disease dementia (PDD). Memory, social judgment, language, reasoning, or other mental skills may be affected.

• Orthostatic hypotension – Orthostatic hypotension is a sudden drop in blood pressure when a person stands up from a lying down or seated position. This may cause dizziness, lightheadedness, and, in extreme cases, loss of balance or fainting. Studies have suggested that, in PD, this problem results from a loss of nerve endings in the sympathetic nervous system, which controls heart rate, blood pressure, and other automatic functions in the body. The medications used to treat PD may also contribute.

• Muscle cramps and dystonia – The rigidity and lack of normal movement associated with PD often causes muscle cramps, especially in the legs and toes. PD can also be associated with dystonia – sustained muscle contractions that cause forced or twisted positions. Dystonia in PD is often caused by fluctuations in the body's level of dopamine (a chemical in the brain that helps nerve cells communicate and is involved with movement).

• Pain – Muscles and joints may ache because of the rigidity and abnormal postures often associated with the disease.

• Fatigue and loss of energy – Many people with PD often have fatigue, especially late in the day. Fatigue may be associated with depression or sleep disorders, but it may also result from muscle stress or from overdoing activity when the person feels well. Fatigue may also result from akinesia, which is trouble initiating or carrying out movement.

• Sexual dysfunction – Because of its effects on nerve signals from the brain, PD may cause sexual dysfunction. PD-related depression or use of certain medications may also cause decreased sex drive and other problems.

• Hallucinations, delusions, and other psychotic symptoms can be caused by the drugs prescribed for PD.

Where can one find out more about Parkinson’s Disease?

Information may be available from the following organizations and resources:

American Parkinson Disease Association, 718-981-8001 or 800-223-2732

Bachmann-Strauss Dystonia & Parkinson Foundation, 212-509-0995

Davis Phinney Foundation, 303-733-3340 or 866-358-0285

Lewy Body Dementia Association, 404-935-6444

Michael J. Fox Foundation for Parkinson's Research, 800-708-7644

Parkinson Alliance, 609-688-0870 or 800-579-8440

Parkinson's Foundation, 800-473-4636

Parkinson's Resource Organization, 760-773-5628 or 877-775-4111

The Parkinson's Institute and Clinical Center, 408-734-2800 or 800-655-2273

What can you do to help support the cause?

Increase awareness, advocate and donate to a state or national Parkinson’s Organization. How can I help locally? Donate to a San Diego County or local Fallbrook organization. Your donation will help to provide much needed resources, education, hope and therapies for thousands impacted by this disease in our county.

Parkinson’s Association of San Diego, 858-999-5671, https://parkinsonsassociation.org/

North County Parkinson’s Support Group (NCPSG), 760-201-5773, https://ncpsg.org/

Local chapter: NCPSG Fallbrook Support Group meets regularly the fourth Friday of each month from 10 a.m. to noon at the Fallbrook Regional Wellness Center, 1636 E Mission Road. For people with Parkinson’s (PWP’s), care partners and those who are interested in the cause.

Contact your local policy makers

Your voice is powerful. By helping policymakers understand what is fundamentally important to those who know Parkinson's disease intimately, you can shape their decision-making. Contact your elected officials now and tell them how they can use their votes to support Parkinson’s research and care.

Want to stay up to date on Parkinson's public policy? Sign up to join the MJ Fox Policy network at michaeljfox.org/advocacy.

Irene Miller is a wife, carepartner of a person living with Parkinson's disease for over 15 years and the North County Fallbrook Support Group Leader.

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Why the red tulip?

The Parkinson's red tulip started in 1980 when W.S. Van der Wereld, a Dutch horticulturist who had Parkinson’s disease, developed a red and white tulip and named his prized tulip the “Dr. James Parkinson” in honor of the man who first described his medical condition and to honor the International Year of the Disabled.

The European Parkinson's Disease Association uses a red tulip as their logo based on the Dr. James Parkinson tulip. On April 11, 2005, the Red Tulip was launched as the Worldwide Symbol of Parkinson's disease at the Ninth World Parkinson’s disease Day Conference in Luxembourg.

The red tulip you see here today was designed by an early-onset Parkinson's patient named Karen Painter and her friend Jean. This stylized tulip has leaves that are shaped like the letters 'P' and 'D'. Karen and Jean started a grassroots movement to make this tulip design become recognized as the symbol for Parkinson's Disease Awareness, the way the pink ribbon has done for breast cancer.

“We have a dream that Karen’s stylized tulip will become the symbol not for one Parkinson’s organization or event, but for the Parkinson’s community nationwide,” Jean said. “It will serve as a reminder that we all must work together to find a cure for the millions of people living with Parkinson’s disease.”

The PD Tulip is a symbol that represents all people with Parkinson's and all organizations and all scientists in the U.S. who are working for the cure.