Meet Dr. David E. Riley. I did recently when we were together on the Parkinson Research Foundation’s Caribbean educational cruise.
Dr. Riley, an MDS specialist, recently opened an integrated PD patient care center in Cleveland, Ohio. He modeled it after Parkinson Place in Sarasota.
His presentation on the non-motor aspects of PD was outstanding. I asked him to present highlights as a guest blogger on shufflingeditor. Read and enjoy.
Non-Motor Aspects of Parkinson’s Disease
One of the most important developments in the study of Parkinson’s disease in the last 25 years has been recognition of its non-motor complications. Neurologists still diagnose PD by identifying the traditional motor manifestations (tremor, slowness, soft voice, small handwriting, etc.), but have come to realize that, for many people with PD, their non-motor symptoms can become even more of a problem.
What are these non-motor manifestations? So many have been identified in PD that they are organized into categories. They include cognitive and psychiatric complications, autonomic nervous system disturbances, and sensory abnormalities and sleep disorders. Each of these groupings comprises a number of distinct problems, although they are often interrelated.
The term “cognitive” refers to higher functions of the nervous system usually recognized by the terms “thinking”, “processing”, decision-making, memory, communication, and so on. “Dementia” refers to a loss of more than one of these capacities. People with PD are at high risk of dementia. It is an ominous development, not only due to the problems it produces, but also because it limits our ability to treat other manifestations of PD.
The term “psychiatric” generically refers to a group of disorders that physicians recognize as falling under the purview of psychiatrists, even though there are no precise divisions between these and neurologic disorders. Foremost among psychiatric complications of PD is depression, which will affect about 50% of people with PD at some point. Many people assume that it results from a reaction to disability, but depression often occurs before people even know they have PD, and is one non-motor manifestation that may precede the motor symptoms by many years. Other common psychiatric complications are hallucinations, illusions and delusions, which result from an interaction between the brain disease and the medications people take. Psychiatric manifestations of PD are frequently considered alongside of cognitive complications because they often coexist. Both are major sources of care partner/caregiver stress.
The autonomic nervous system is that part of the nervous system that functions “autonomously”, meaning on its own. It includes a variety of bodily functions governed by systems of reflexes that are not under our conscious control. Major responsibilities of the autonomic nervous system include regulation of blood pressure and heart rate, bladder and sexual function, digestive and bowel function, and control of perspiration and body temperature. PD potentially disrupts all of these. The most common symptom of autonomic impairment is constipation. Two autonomic problems that seem to cause the most disability are an inability to maintain blood pressure, resulting in lightheadedness and fainting, and loss of bladder control.
Sensory disturbances are an underappreciated aspect of PD. They include the loss of the sense of smell, another feature that can precede motor manifestations by years, and pain. A common sensory complication is the restless legs syndrome. This disorder occurs in about 3-4 % of the general population, but in about 20% of those who have PD.
Sleep disorders in PD have been the object of considerable study in recent years. They include insomnia, excess daytime sleepiness, and a fascinating tendency to act out one’s dreams known as REM-sleep behavior disorder. This last complication has become a major tool of researchers, because of its striking ability to predict the development of PD and related disorders many years beforehand.
Virtually all people with PD report some non-motor symptoms, but the number and types vary tremendously from person to person. This explains why no two people experience PD in exactly the same way. People with PD should embrace this knowledge and avoid presuming that another person’s complications will necessarily happen to them, or expecting that medications will affect them in the same way as someone else. I like to compare this variability of PD to a salad bar. Even though everyone comes away with a salad, the number and assortment of ingredients is never the same in any two people.
Non-motor manifestations are responsible for much of the disability and loss of quality of life of PD. For many, non-motor symptoms represent their greatest challenge in dealing with this disease. People with PD should become aware of their own non-motor symptoms and discuss them with their doctors, in order to deal with their PD comprehensively.
LOCAL BENEFICIARIES OF MOVING DAY TAMPA
A reminder about the Moving Day Tampa Bay walk benefiting the National Parkinson Foundation. It’s Saturday April 9, 2016 at the University of South Florida Marshall Center starting at 9:00 a.m.
Proceeds from the 2015 event were shared with four local PD patient care organizations:
Health and Aging Radio Show and Support Group for Caregivers and Hispanics at South Shore Coalition for Mental Health and Aging; PD Voice Therapy program at Florida Ear, Nose, Throat and Allergy; Patient and Caregiver Information Resource Forum at the University of South Florida, an NPF Center of Excellence; and Rock Steady Boxing at Bodyssey Performance and Recovery in Largo. The amount of the grants was not available.
The event is for all ages and abilities. We will see a variety of movement activities, such as yoga, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives.
My Moving Day team is Rock Steady Boxing. As I wrote on a previous post, I work out at Rock Steady at least three days a week. The program has made an enormous difference in my quality of life and sense of well-being.
Our team will demonstrate Rock Steady techniques at this year’s event. Please consider being a part of my team or sponsoring me I encourage you to get your friends, family and coworkers involved. For more information visit http://www.MovingDayTampaBay.org
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