How can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson’s live a better life today, as well as the research that can bring a better tomorrow.
Meet the Researcher: Disparities in PD Care
As with many medical conditions, people with Parkinson’s disease (PD) may experience disparities in access to care, in diagnosis, treatments, and ancillary care. These disparities may be based on age, gender, race, financial situation, language barriers, and geographic location, among other factors. Dr. Lynda Nwabuobi, now a movement disorders specialist at New York-Presbyterian/Weill Cornell Parkinson’s Disease and Movement Disorders Institute in New York City, received her specialized training at Columbia University, supported by a Parkinson’s Foundation Movement Disorders Fellowship.
During her training, she noticed that women with PD who were home-bound were more likely than men to be alone and to have less access to a neurologist. She also recognized disparities in the care between the majority white population of people with PD seen at the main hospital clinic of New York University (NYU) compared to the more racially diverse, multicultural community of people seen at NYU’s public Bellevue Hospital nearby – even though they were being treated by the same doctor. In this episode, she describes how she acted on her passion of “creating access to better care to marginalized communities and bring more diversity to the clinic.” Rather than waiting for the community to come to the health care setting, she reached out to them on their turf -- at a farmers’ market.
Channeling Creativity Throughout the Parkinson’s Journey
Many people with Parkinson’s disease (PD) continue to work, socialize, and enjoy life, making accommodations as necessary to fit the disease into their lifestyles. And while no one would choose to have PD, some people have even found or created benefits of having it. One of them is Barry Blaustein, an award-winning Hollywood writer, director, and producer, who wrote several of Eddie Murphy’s movies and developed several of his Saturday Night Live characters, writing many of Murphy’s skits with his writing partner. When we spoke, he had been living with PD for five years, working during that time in Hollywood and teaching screen writing at the university level. In this episode, he describes how he has dealt with his disease, continued to work, and maintained an upbeat attitude.
Managing Comorbidities with Parkinson’s Disease
Just as people in the general population have to contend with various unrelated medical conditions, so may people with Parkinson’s disease (PD). Such conditions are termed “comorbidities,” that is, diseases or conditions occurring along with, in this case, PD. Examples are cardiovascular disease, strokes, arthritis, diabetes, asthma, cancer, cataracts, other diseases of aging, as well as those that can occur at any stage of life. An important consideration is to determine which health professional would be best at addressing them and who coordinates the care. A movement disorders specialist may feel comfortable treating a general neurological condition in addition to PD, but in this podcast episode, movement disorders neurologist Ashley Rawls, MD, MS of the University of Florida College of Medicine in Gainesville, a Parkinson’s Foundation Center of Excellence, emphasizes that one’s time with her is best used addressing the person’s PD, while comorbidities are most appropriately managed by specialists in those particular areas. For best patient outcomes, proper coordination of care and sharing of information will give each health professional a total picture of the person’s medical management, including prescribed drugs and possible drug interactions.
¡EN ESPAÑOL! Definición y manejo de la distonía
La distonía es un trastorno del movimiento que causa contracciones involuntarias de los músculos. Estas contracciones llevan a posturas anormales de partes del cuerpo y a veces a movimientos repetitivos.
En este episodio, hablamos con la doctora Marta San Luciano, Profesora Asociada de Neurología en la University of California San Francisco, acerca de la definición y el manejo de la distonía. La doctora San Luciano nos explica que la distonía es un síntoma común de la enfermedad de Parkinson que puede aparecer al principio o a lo largo de la enfermedad.
Aprendemos que la distonía generalmente ocurre en los periodos “off”, cuando el cuerpo tiene poco medicamento para el Parkinson, pero también puede aparecer en el medio de una dosis, en un periodo “on”.
Además de las terapias que existen para controlar la distonía, como los medicamentos y la fisioterapia, la doctora San Luciano comparte ejemplos de actividades diarias que pueden ayudar a manejar la distonía.
Addressing the Unmet Needs of Women with PD
Forty percent of people living with Parkinson’s disease (PD) are women, but compared to men, they have a longer time to diagnosis, less access to neurologist care, and are underrepresented in research studies. Although PD presents special considerations for women, they are, overall, treated the same as men. Some of the differences are body weight, drug metabolism, symptoms, monthly hormone cycles, hormonal changes across different stages of life, pregnancy, and family and other care giving responsibilities and occupational demands, all of which can affect their disease and its treatment. However, these special needs have largely been underrecognized and under-addressed by the medical profession.
Six women health care professionals, three of whom have PD, authored a paper titled “Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies” to bring these issues to the fore, identify current knowledge, gaps, and possible strategies to meet the neglected needs of women with PD.
Some of these areas of need are management of the disease, psychosocial issues, advocacy, research on sex and gender issues, and participation of women in research studies. One of the authors is Annalien Oosterbaan, MD, PhD, who has Young-Onset Parkinson's disease and is an obstetrician/gynecologist, researcher at the Radboud University Medical Center in Nijmegen, The Netherlands, and a mother, and whom we spoke with for this podcast. She said the paper lays out a path forward for medical professionals to recognize the unique needs of women with PD and for women to become educated and empowered to communicate their symptoms and needs, participate in research, and to organize as a community.
Meet the Researcher: Gene Silencing to Prevent and Treat Levodopa-Induced Dyskinesia
Dyskinesia is a condition involving erratic, uncontrollable muscle movements such as twitches, jerks, twisting, or writhing of the face, arms, legs, or trunk. It can be a complication after long-term use of levodopa to treat Parkinson’s disease. Dyskinesias can be mild, or they may be severe enough to interfere with normal functioning.
Basic laboratory research has revealed some of the changes in the brain after long-term exposure to levodopa. In this episode, Kathy Steece-Collier, PhD, a professor in the Department of Translational Neuroscience in the Michigan State University College of Human Medicine in Grand Rapids, discusses her research into the biologic mechanisms of levodopa-induced dyskinesias and a possible future prevention and treatment for them.
Funded by an International Research Grant from the Parkinson’s Foundation, she delineated the role of calcium channels, which allow calcium to enter nerve cells in the brain, in the development of levodopa-induced dyskinesias. Based on those findings, she is now working on an approach that uses a single injection into a part of the brain that is affected in Parkinson’s disease (the striatum) that may have the potential for long-term prevention or relief of dyskinesias. The idea is to introduce a short piece of RNA with a tight hairpin turn in it, called a short hairpin RNA (shRNA), to silence the gene that leads to abnormal calcium channel signaling in the striatum that causes dyskinesia. Dr. Steece-Collier also explains how this technique may have advantages over drug therapy to control dyskinesia.
Grouchy PD husband
Thank you for your very informative podcast. My husband was diagnosed 5 years ago. His mother also had Parkinsons but it was a very mild case. My question is this: Are mood changes common with this disease? My sweet, loving husband has turned into a grouchy complainer. I can’t seem to do anything right in his opinion. I look forward to your answer.
A wonderful way to get a diverse perspective and info on the many different facets of living with PD. or loving someone with PD.
Great job keeping us informed!