ABOUT PEP4U & PARKINSON'S DISEASE
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WHAT IS PARKINSON'S DISEASE?
Parkinson's is a chronic, progressive, debilitating disease of the nervous system. Tremor, slow uncertain movement and muscle rigidity, are common symptoms, but numerous other disorders also exist. Largely associated with middle-aged and elderly people, it is now also known to affect a significant number of younger people (Young Onset group). Approximately 1.5 million people in the United States are now conservatively thought to be people with Parkinson's Disease (PWP).
HOW IS PARKINSON'S TREATED?
Loss of dopamine in the brain is key in this movement disorder disease, so one approach is to try to slow that loss. Doctors prescribe what are called dopamine agonists, such as Mirapex, Requip, and Neupro, but none of these is without potential undesirable side-effects. So surgical treatment of symptoms with Deep Brain Stimulation (DBS) is sometimes recommended. Without a routinely successful standard treatment available, and since symptoms vary greatly, movement disorder neurologists and their patients must compare notes and make adjustments frequently.
HOW DO YOU GET RID OF IT?
You don't! Sadly, the best that Medicine can offer today is to continually adjust doses of the drugs that control some of the worst symptoms.
WHAT IS PEP4U AND WHY IS IT SO IMPORTANT?
Recent research has shown that REGULAR, FREQUENT, VIGOROUS EXERCISE improves Parkinsonians' movement control and can slow progression of the disease--thus improving quality of life. The Parkinson's Exercise Program for You (PEP4U), a community-based 501(c)(3) largely volunteer organization was created to address that need for Orange County’s estimated 8000 people with Parkinson’s Disease (PD) by providing PD-specific physical wellness and social support programs. Its exercise program was launched April 2014 in Aliso Viejo; rapid growth soon moved it to the Family YMCA in Laguna Niguel where membership continues to increase. Professionally-supervised exercise sessions are held several days a week. A steering committee of therapists and other professionals provides guidance on a volunteer basis. It is hoped there will soon be satellite gyms all over the County.
WHAT CAN I DO TO HELP?
Give it some thought and help spread the word! Most of us know someone with PD who could benefit from our gym. Help that person by donating, being a sponsor or becoming an "Angel Protector." Remember, PEP4U is 501(c)(3) tax-exempt. All gifts are tax-deductible. Your generosity will be deeply appreciated.
Won't you please write a check now to 'PEP4U Gym'?
SEND IT TO:
32565 B Golden Lantern, Suite #194
Dana Point, CA 92629
OR DONATE THROUGH PAYPAL:
YOUNG ONSET PARKINSON'S
Young Onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Most people with idiopathic, or typical, PD develop symptoms at 50 years of age or older.
YOPD affects about two to 10 percent of the one million people with PD in the United States. Symptoms are similar to late onset PD but it is important to understand the challenges YOPD individuals often face at a financial, family and employment levels.
In rare instances, Parkinson's-like symptoms can appear in children and teenagers. This form of the disorder is called juvenile Parkinsonism and is often associated with specific, high-PD risk genetic mutations.
Young-onset PD is diagnosed similarly to late onset PD with symptoms including:
Tremors of the hands, arms, legs, jaw and face
Rigidity of the limbs and trunk
Postural instability or impaired balance and coordination
People with YOPD may experience the same non-motor symptoms as others with PD, including:
Changes in memory and thinking
Constipation or urinary problems
HOW IS YOUNG-ONSET PD DIFFERENT?
People diagnosed with YOPD have a more frequent family history of Parkinson’s disease and a longer survival. People living with young-onset PD may experience:
Slower progression of PD symptoms
More side effects from dopaminergic medications
More frequent dystonias (cramping and abnormal postures) such as arching of the foot
WHY IS DISTINGUISHING YOUNG-ONSET PARKINSON'S IMPORTANT?
Socially, people who are affected by PD at a younger age experience the disease differently — they may be at a different stage of their career and often have less time to engage in their own care. They may also have children or are planning to have children and have questions regarding passing on PD genes.
Medically, doctors tailor treatment when it is a younger person with PD. The younger you are, the more likely the disease is genetic. Your care team may offer genetic testing or counseling. Younger brains also have a higher neuroplasticity potential which allows the brain to handle and respond to disease and therapy differently.
CAUSES AND THEORIES
For most people with PD, the disease is caused by a combination of underlying genetic predisposition and environmental exposures. But genetics plays a larger role in young-onset PD. Scientists have discovered genes that can cause or increase the risk of developing Parkinson's at a younger age.
People who have both early-onset PD and a strong family history of the disease are more likely to carry genes linked to PD, such as SNCA, PARK2, PINK1 and LRRK2. In fact, a recent study found that 65 percent of people with PD onset under 20 years old and 32 percent of people with onset between 20 and 30 had a genetic mutation believed to increase PD risk.
However, some people with these genes may not develop Parkinson’s disease at all. Genetic tests are not generally available, but the Parkinson's Foundation Genetics Initiative is the first national Parkinson's study to offer free genetic testing plus counseling for Parkinson's-related genes through medical professionals. This flagship study will ultimately provide genetic information that will lead to improving care, expanding research and accelerating enrollment in clinical trials.
Theoretically, genes may play a larger role in young-onset PD, while environmental factors may play more of a role in sporadic PD. But to date researchers have found this hard to prove, as we are still improving our understanding of the biological mechanisms of the disease.