Parkinson’s Awareness Month: Expert Shares UF Health’s Approach to Care, New Advances

April is Parkinson’s Awareness Month, a time dedicated to shedding light on this complex neurological condition that affects millions of lives worldwide. UF Health offers support, understanding and a multidisciplinary approach to care. Let’s explore what Parkinson’s disease entails and how you can navigate this path with hope and resilience.

Understanding Parkinson’s: What to Know

Parkinson’s disease is a progressive neurological disorder characterized by the loss of dopamine-producing cells in the brain. This loss leads to a variety of symptoms, both motor and non-motor, that can vary from person to person. Common motor symptoms include tremors, stiffness, slowed movements and difficulty with balance and walking. Non-motor symptoms such as constipation, fatigue, anxiety, depression, pain and cognitive decline are equally important but less recognized.

It's important to note that Parkinson's disease typically manifests later in life, often affecting individuals over the age of 60, although it can occur earlier. Additionally, Parkinson's tends to affect men more frequently than women. Living with Parkinson’s can pose challenges to both patients and caregivers as the disease is progressive, meaning symptoms worsen over time, and currently there is no cure. These factors can make managing Parkinson's difficult for patients and their families.

“Every PD patient is different,” said Nikolaus McFarland, MD, PhD, an associate professor of neurology at the Norman Fixel Institute for Neurological Diseases at UF Health, but “several attempts have been made to distinguish types of PD.”

One approach Dr. McFarland uses is to consider the main symptoms someone experiences, such as shaking (tremor-predominant), stiffness (akinetic-rigid) or trouble with balance and walking (postural instability-gait difficulty).

Another recent categorization assesses its severity: mild (benign), moderate (intermediate) or more serious (malignant). Most people with PD fall into the first two categories, benign and intermediate. The third category, malignant, progresses faster and can lead to issues like memory problems, depression, hallucinations, difficulties with automatic body functions (autonomic dysfunction) and acting out dreams (REM sleep behavior). However, it’s less likely to cause sudden, uncontrolled movements (dyskinesia) or fluctuations in symptoms.

Quality of Life: Challenges and Coping Strategies

Parkinson’s disease has various impacts on quality of life, including activity, personality, physical ability and sleep quality. Individuals with PD may experience weakness, fatigue, reduced endurance and social withdrawal. They may also suffer progressive disability characterized by the need for assistive devices like canes and walkers, dependence on medications and sleep disturbances.

“Caregivers are also impacted, needing to provide more assistance and support and often changing their lives and activities to be there for their loved one,” Dr. McFarland said.

Living with Parkinson’s can pose challenges for patients and caregivers. From changes in daily activities to managing medications and coping with its emotional aspects, it’s a tough disease. However, coping strategies and support systems can help. Support groups, regular exercise, finding a trusted health care provider and staying engaged in fun activities all contribute to maintaining a fulfilling life.

Diagnosis: Comprehensive Care

Diagnosing Parkinson’s disease involves a comprehensive evaluation by a health care professional, typically a neurologist. While there is no single test to diagnose the condition, a combination of medical history, physical examination and imaging tests may be used.

At UF Health, Parkinson’s is primarily diagnosed through a clinical evaluation based on medical history and symptoms. Brain imaging may be used to rule out other conditions.

Two tests can aid in diagnosis: DAT SPECT, which distinguishes between essential tremor and Parkinsonian disorders, and alpha-synuclein skin biopsy, which detects abnormal proteins in nerve fibers. While the skin biopsy is highly accurate for Parkinson’s and related disorders, it’s not a substitute for neurological evaluation and is not yet FDA-approved for diagnosing Parkinson’s.

Treatment: Addressing Symptoms

Various treatments are available for managing Parkinson’s disease symptoms. These options also focus on improving quality of life, often through a combination of medication, therapy and lifestyle changes. At UF Health, our multidisciplinary team collaborates to tailor a treatment plan that addresses your needs and preferences.

“Unfortunately, we do not yet have any disease-modifying therapies that slow or reverse Parkinson’s disease symptoms,” Dr. McFarland said. “The primary drugs to treat symptoms focus on dopamine replacement. In Parkinson’s disorders, the gradual loss of dopamine-producing brain cells is a main cause for symptoms.”

Although there isn’t a medication that can stop or reverse the disease, there are some that can help manage symptoms by affecting chemicals in the brain. Some of them help with problems like tremors and stiffness, while others address issues like depression, anxiety and trouble sleeping. Therapies like physical, occupational and speech therapy can make a big difference. It’s also important to stay active with regular exercise, as it can really help manage symptoms.

Hope on the Horizon: Advances in Research

Parkinson’s research is a dynamic field, constantly evolving and offering promising developments that inspire hope for improved treatments. Dr. McFarland highlights numerous breakthroughs and advancements occurring in Parkinson’s research.

These include the development of biomarkers to detect early Parkinson’s disease, such as the seed-aggregation assay for alpha-synuclein in cerebrospinal fluid and skin biopsy. In addition, there have been significant advancements in deep brain stimulation, or DBS, technology, which sends electrical signals to brain areas responsible for body movement, regulating brain activity much like a heart pacemaker. There is also promising research into the potential use of stem cells.

Diversity in Parkinson’s: Inclusive Care

“At UF, we recognize that there are significant barriers to care that may impact people from different cultures, ethnicities and socioeconomic backgrounds,” Dr. McFarland said. “We have implemented special programs to reach out to these communities, to knock down barriers and to open our clinic to such individuals.”

In addition, UF Health offers clinics for more rapid intake and evaluation. These clinics are designed to make care more accessible, ensuring that patients receive needed support in a timely manner. Further, UF Health provides support, including financial assistance programs, to alleviate the financial burden.

Specific research initiatives have also been launched to increase outreach and engagement with underserved communities. These initiatives are dedicated to understanding the unique needs and challenges faced by diverse populations affected by Parkinson's disease, with the aim of developing more targeted and effective interventions.

Support and Resources: You Are Not Alone

At UF Health, we recognize the importance of providing comprehensive support and resources to individuals and families affected by Parkinson’s. From specialized clinics and support groups to community partnerships and research opportunities, we are here to help you every step of the way. Remember, you are not alone in this journey. Together, we can navigate Parkinson’s with hope, resilience and support.

“It takes a village to care for someone with Parkinson’s disease,” Dr. McFarland said. “At UF, we take a multidisciplinary, even interdisciplinary approach that focuses on the patient as the “sun” and includes multiple allied health caregivers surrounding the patient to provide support and manage their condition.”

A team of professionals — spanning neurology, rehabilitation, neuropsychology, psychiatry, social work, genetics, dietetics, research and beyond — collaborates to provide exceptional care.

While Parkinson’s undoubtedly presents challenges, it’s important to recognize that support, resilience and community are invaluable resources. By staying informed, seeking support and embracing a multidisciplinary approach to care, those living with Parkinson’s can find ways to navigate the challenges and continue to lead fulfilling lives.

For more information about Parkinson’s disease care and support at UF Health, visit the UF Health Neuromedicine — Fixel Institute.