April is Parkinson’s Awareness Month

Parkinson’s, which is characterized by a loss of certain nerve cells in the brain that regulate functions like motor control, affects about one million people in the U.S. and millions more globally. It is the second most common progressive neurological disorder and research shows prevalence in the U.S. is increasing.

Parkinson’s symptoms can be challenging to diagnose. And even once diagnosed and put on baseline Parkinson’s treatment, many people with Parkinson’s experience a return of their symptoms between doses, bringing a new meaning to “feeling off.”

For these people, these fluctuations between periods when symptoms are controlled – known as ON periods – and periods when symptoms return – known as OFF periods or OFF episodes, can be very disruptive. During OFF periods, people with Parkinson’s are left with restricted or uncontrolled movement, reducing their mobility. A 2014 survey of more than 3,000 people with Parkinson’s conducted by The Michael J. Fox Foundation found that nearly two-thirds of participants reported having more than two hours of OFF time per day.

April is Parkinson’s Awareness Month, so it’s the perfect time to learn more about the condition, including the importance of speaking up and having effective conversations with your doctor.

Today, treatment options exist for people with Parkinson’s who experience OFF periods, including Bob Harmon, who was diagnosed 13 years ago. On March 27, 2019, Bob will share his personal story, including his participation in a clinical trial for one of these treatments, which was recently approved by the FDA. He will be joined by his neurologist, Dr. Robert Hauser, Director at Parkinson’s Disease and Movement Disorders Center in Tampa, who can discuss the signs and symptoms of Parkinson’s disease and OFF periods, as well as ways to help manage them.

Bob and Dr. Hauser can also explain why it’s important to speak up about how you are feeling and get involved with efforts that may help others and yourself if you are living with a health condition.

When you book a window, we’ll provide you with guest bio & suggested questions.

Interview is courtesy: Acorda Therapeutics

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Cerebral refers to the cerebrum, which is the affected area of the brain. The disorder may often involve connections between the cortexand other parts of the brain such as the cerebellum). The term palsy in modern parlance refers to disorder of movement, but the word root “palsy” does still technically mean “paralysis” today, even though it is not used as such within the meaning of cerebral palsy. The use of “palsy” in the term cerebral palsy makes it important to note that paralytic disorders are in fact not cerebral palsy – meaning that the condition of quadriplegia, which comes from spinal cord injury or traumatic brain injury, should not be confused with spastic quadriplegia, which doesn’t; nor should tardive dyskinesia be confused with dyskinetic cerebral palsy, or the condition of (paralytic) “diplegia” with spastic diplegia. In fact, as of the early 21st century some clinicians have become so distressed at common incorrect use of these terms that they have resorted to new naming schemes rather than trying to reclaim the classic ones; one such example of this evolution is the increasing use of the term bilateral spasticity to refer to spastic diplegia. Such clinicians even argue quite often that the “new” term is technically more clinically accurate than the established term.

Cerebral palsy’s nature as a broad category means it is defined mostly via several different subtypes, especially the type featuring spasticity, and also mixtures of those subtypes.

Cerebral palsy is caused by damage to the motor control centres of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three. Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception, and other sight-based perceptual problems, communication ability; impairments can also be found in cognition, and epilepsy is found in about one-third of cases. CP, no matter what the type, is often accompanied by secondary musculoskeletal problems that arise as a result of the underlying disorder. Improvements in neonatology (specialized medical treatment of newborn babies) have helped reduce the number of babies who develop cerebral palsy and increased the survival of babies with very low birth weights (babies which are more likely to have cerebral palsy). A 2007 six-country survey found an incidence of CP of 2.12–2.45 per 1,000 live births, indicating a slight rise in recent years. A 2003 study put the average lifetime cost for people with CP in the US at $921,000 per individual, including lost income.

Of the many types and subtypes of CP, none has a known cure. Usually, medical intervention is limited to the treatment and prevention of complications arising from CP’s effects.

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