April marks Parkinson's Awareness Month, a time dedicated to shedding light on the complexities of Parkinson's disease (PD) and the challenges faced by individuals and families affected by this condition. Although, there are an estimated 10,000 people with Parkinson’s in San Diego, most healthcare professionals don’t see a lot of Parkinson’s patients. So, in honor of Parkinson’s Awareness Month, here are ten essential insights every healthcare professional should know about Parkinson's and the unique challenges it presents:
-
Parkinson's affects parts of the brain that control muscles, not the muscles themselves:
Parkinson's disease primarily affects the substantia nigra, a region of the brain responsible for producing dopamine, a neurotransmitter involved in movement control. The loss of dopamine-producing neurons leads to the motor symptoms characteristic of Parkinson's, such as tremors, rigidity, and bradykinesia. Additionally, Parkinson's can affect other areas of the brain, leading to non-motor symptoms such as cognitive impairment, mood disorders, and autonomic dysfunction.
The four primary symptoms of PD are:
a. Tremor —Tremor (shaking) often begins in a hand, although sometimes a foot or the jaw is affected first. The tremor associated with PD has a characteristic rhythmic back-and-forth motion that may involve the thumb and forefinger and appear as a “pill rolling.” It is most obvious when the hand is at rest or when a person is under stress. This tremor usually disappears during sleep or improves with a purposeful, intended movement.
b. Rigidity —Rigidity (muscle stiffness), or a resistance to movement, affects most people with PD. The muscles remain constantly tense and contracted so that the person aches or feels stiff.
c. Bradykinesia —This is a slowing down of spontaneous and automatic movement that can be particularly frustrating because it may make simple tasks difficult. There is often a decrease in facial expressions (also known as "masked face").
d. Postural instability —Impaired balance and changes in posture can increase the risk of falls. [10] -
Parkinson's is more than a movement disorder:
While Parkinson's is commonly known for its characteristic motor symptoms such as tremors, rigidity, and bradykinesia (slowness of movement), it is essential to recognize that Parkinson's encompasses a range of non-motor symptoms as well. These can include cognitive impairment, mood disorders, autonomic dysfunction, sleep disturbances, and sensory symptoms. Understanding the breadth of symptoms is essential for comprehensive management. [1] -
Non-motor symptoms significantly impact quality of life:
Research indicates that non-motor symptoms often have a more significant impact on quality of life than motor symptoms in Parkinson's patients. Cognitive changes, such as difficulty with memory, attention, and executive function, can affect daily functioning and independence. Mood disorders, including depression and anxiety, are also common and can exacerbate other symptoms. [2] -
Every Parkinson’s journey is unique:
Symptoms and disease progression are unique to each person, so it is difficult to accurately predict the progression of Parkinson’s. Not everyone will experience all the symptoms of PD; even if people do, they won’t necessarily experience the symptoms in quite the same order or at the same intensity. Tremors, bradykinesia, and rigidity have an incidence of 70-80%. About 60-70% experience postural instability leading to balance problems. Freezing of gait is present in around 50-60% of cases, cognitive impairment affects about 50%, mood disorders and anxiety in about 40%, autonomic dysfunction including constipation and orthostatic hypotension in about 30%, and sleep disturbances in an estimated 30-60%. These statistics are based on data compiled from various studies and sources, including the Parkinson's Foundation and the National Institute of Neurological Disorders and Stroke. [3] -
Medication management is complex:
The management of Parkinson's medications requires careful attention to detail due to the complexity of the disease and individual variability in response. Parkinson's medications aim to alleviate motor symptoms by replenishing dopamine levels in the brain or mimicking its effects. However, the effectiveness of these medications can fluctuate throughout the day, leading to periods of "on" time where symptoms are well-controlled and "off" time where symptoms worsen. Managing these fluctuations requires careful timing and dosing of medications, often necessitating multiple daily doses and adherence to strict schedules. [4] -
Hospitalizations pose unique challenges:
Individuals with Parkinson's are at increased risk of complications during hospitalizations due to changes in routine, unfamiliar environments, and disruptions in medication schedules. Medication errors occur in an alarming 75% of hospitalizations. Most hospital environments simply lack the specialized knowledge and protocols necessary to manage Parkinson's medications effectively. This can lead to interruptions or delays in medication administration, incorrect dosing, or inappropriate substitutions of medications, all of which can precipitate motor fluctuations, worsening of symptoms, and increased risk of complications. Additionally, certain medications commonly used in hospital settings, such as antipsychotics or antiemetics, can exacerbate Parkinson's symptoms or induce adverse drug interactions, further complicating management. Moreover, the stress and disruption of hospitalizations can exacerbate Parkinson's symptoms, necessitating careful monitoring and adjustment of medications. Sadly, 4% of people with Parkinson’s die during hospitalizations and only 1 in 3 are well enough to discharge home without first going to a rehab facility. Much of this could be prevented if more healthcare professionals were aware of Parkinson's-specific needs, such as maintaining home medication schedules, preventing falls, and managing symptoms effectively. The Parkinson’s Foundation offers an excellent “Hospital Safety Guide.” [5] -
Weakened voice is more than just a communication problem:
Speech and communication difficulties are common in Parkinson's patients, affecting both verbal and non-verbal communication. Reduction in vocal volume and clarity can significantly impact communication and quality of life. Moreover, weakened voice can lead to difficulties in swallowing, increasing the risk of aspiration pneumonia—the #1 cause of death for people with Parkinson’s. Healthcare professionals should be patient and attentive, allowing individuals with Parkinson's sufficient time to express themselves, and vigilant for signs of swallowing difficulties.
San Diegans have access to a variety of programs that help people with Parkinson’s maintain their speech and minimize life-threatening swallowing complications. Examples include programs from LSVT/Loud, the Parkinson’s Voice Project and the “Tremble Clefs.” [6]
-
Caregiver support is essential:
Parkinson's not only affects the individual diagnosed but also has a significant impact on caregivers and family members. Caregivers often shoulder the responsibility of providing physical, emotional, and practical support, which can lead to increased stress and burden. Healthcare professionals should recognize the importance of caregiver support and provide resources and referrals as needed. BrightStar Care of Carlsbad is a home care agency that specializes in supporting people with Parkinson’s. [7] -
Exercise is crucial:
Regular physical activity, including aerobic exercise, strength training, and balance exercises, has been shown to be beneficial for Parkinson's patients. Exercise can help improve motor symptoms, enhance mobility and balance, and reduce the risk of falls. Healthcare professionals should encourage patients to engage in tailored exercise programs and refer them to physical therapists or exercise specialists as needed. San Diego is lucky to have several exercise programs tailored to help people with Parkinson’s, including RX Ballroom Dance, Neurolab 360, and Rock Steady Boxing. [8] -
San Diego has outstanding support groups and community resources:
Participation in support groups and community programs can provide individuals with Parkinson's and their families with valuable emotional support, practical advice, and social connections. For example, North County Parkinson’s Support Group (NCPSG) offers monthly groups in Carlsbad, Oceanside, Rancho Bernardo and Fallbrook. The Parkinson’s Association of San Diego’s website is a treasure trove of free information. A free Parkinson’s Guide and other resources are available through the Davis Phinney Foundation. And, free training and information is also offered by the Parkinson’s Foundation, including a guide to navigating hospitalization challenges. Healthcare professionals should inform patients about available resources in their community, such as support groups, educational workshops, and online forums.
In conclusion, Parkinson's disease presents unique challenges. By understanding the key issues associated with Parkinson's and collaborating with patients, families, and other community resources, healthcare professionals can make a meaningful difference in the lives of those affected by this condition.
References:
- Parkinson's Foundation. (https://www.parkinson.org/)
- "Understanding Parkinson's: A Basic Introduction." Davis Phinney Foundation. ( https://davisphinneyfoundation.org/)
- National Institute of Neurological Disorders and Stroke. (https://www.ninds.nih.gov/)
- American Parkinson Disease Association. (https://www.apdaparkinson.org/)
- Parkinson's UK. (https://www.parkinsons.org.uk/)
- European Parkinson's Disease Association. (https://www.epda.eu.com/)
- "Parkinson's Disease and Caregiving." Family Caregiver Alliance. (https://www.caregiver.org/parkinsons-disease-caregiving)
- "Physical Therapy for Parkinson's." Parkinson's Foundation. (https://www.parkinson.org/library/fact-sheets/physical-therapy)
- "Nutrition and Parkinson's Disease." Michael J. Fox Foundation. (https://www.michaeljfox.org/news/diet-nutrition)
- National Institute of Neurological Disorders and Stroke (https://www.ninds.nih.gov/health-information/disorders/parkinsons-disease)
