Tony Guevara, Advanced Plan for Health Marketing
April is Parkinson’s Disease Awareness Month, and April 11th is World Parkinson’s Day. In honor of this, we wanted to spread awareness of the diseases’ prevalence and information relative to best management practices.
Background and Prevalence
Parkinson’s disease (PD) is a complex and chronic neurodegenerative disease that is difficult to diagnose, has no known cure and is unique to the individual. While the disease is not terminal, anyone who suffers from PD can affirm that the effects of a degenerating nervous system are debilitating, and demoralizing. Often, PD symptoms are so severe that they not only reduce quality of life but can lead to serious injury and even death. According to Parkinsons.org, approximately, 60,000 people are diagnosed with Parkinson’s every year, and the numbers are only rising. Healio reported this week that “the number of patients with Parkinson’s disease worldwide was 2.5 million in 1990 and jumped more than 100% in the 25 years since to an estimated 6.1 million in 2016, according to findings published in Lancet Neurology.” That’s a significant jump.
Making matters worse, the Parkinson’s Foundation states: “The combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income, is estimated to be nearly $25 billion per year in the United States alone. Medications alone cost an average of $2,500 a year and therapeutic surgery can cost up to $100,000 per person.”
The cause of Parkinson’s is not currently known, but scientists and experts are working to identify common factors and biomarkers among PD patients to gain a deeper understanding of the disease and its root cause. Factors range from genetics to aging and are for the most part uncontrollable in the development of the disease.
Identification and Diagnosis
PD symptoms and the diseases’ rate of progression are relative to the individual, underscoring the need for a patient-centered approach in combatting PD effects and symptoms. PD symptoms include, but are not limited to:
Freezing of gait, i.e. the feeling of being stuck and unable to move.
Insomnia, depression and stooped posture.
Experiencing some of these symptoms does not necessarily mean a patient has PD.
Misdiagnosis happens regularly because several other conditions display symptoms that are incredibly similar to those of PD, such as “multi-system atrophy, dystonia, and normal pressure hydrocephalus.” Since there are no conclusive tests to confirm a PD diagnosis, physicians and practitioners are left with no choice but to rely on experience, and neurological and physical health examinations.
Healio stresses the importance of related education for Primary Care Providers (PCPs) and advises that “Making the correct diagnosis is so crucial. It sets the stage for what we can do in terms of treatment
“If there is any question in a PCP’s mind, any question at all, he or she should consult a neurologist.”
and what the patient and the family can expect. We (PCPs) should of course always strive to make the first diagnosis, the correct diagnosis, but this perhaps is a bit more important in cases of Parkinson’s disease. If there is any question in a PCP’s mind, any question at all, he or she should consult a neurologist.”
According to Healio, “Periodic reassessment [is] critical to assure appropriate therapy and avoid mistreatment and delay in addressing other conditions with overlapping symptoms.” Further proactive diagnosis measures include gaining access to the patients’ personal and family medical history, and screening patients with multiple PD-like symptoms as early as the symptoms appear to more accurately diagnose the condition and improve outcomes. This is because “about 10% of Parkinson’s diseases cases are purely genetic,” while the “other 90% is patients with multiple, ‘low risk’ genetic variants, possibly in combination with exposure to environmental triggers such as specific pesticides, herbicides or possibly heavy metals.” Having adequate access to behavioral health information and family medical history is critical for physician’s diagnosis accuracy and to maximize the potential for positive health outcomes for a disease that is dependent on genetic and environmental factors.
Treatment and Management
Currently, there are no known therapies or treatments that can reverse, halt or even slow Parkinson’s down. Disease management is the most viable and effective response to dealing and living with PD today. Patient-centered care is a vital part of developing and implementing successful Parkinson’s disease care management. The first line of defense is always self-care. Regular exercise, stretching and nutritional diets can have significantly positive impacts on quality of life.
However, to maximize health outcomes, PD patients should seek expert evidence-based knowledge which can have a significant impact on the patient’s ability to manage PD symptoms unique to them. Access to this expert and patient-centered approach and support is critical and should be employed wherever possible. In fact, “neurologist care saves about 4,600 lives each year in the U.S. alone.” Unfortunately, not every patient has access to this level of expertise.
People who live with PD, be it the afflicted patient or a loved one who is caring for them, experience the hardships and day to day struggle of the disease in a way that few can relate with. These individuals understand the challenges and the devastating nature of the disease on a deeply personal level but should not have to deal with PD alone. With proper care management and support, thousands of PD patients can, and do, live a full and quality life.
Mayfield Brain & Spine provided a list of self-care measures and practical suggestions for those individuals who are managing the disease on their own. Below is a sampling of their suggestions:
Exercise to maintain strength and flexibility. Maintain a healthy diet. Consult your physician before initiating a new diet or exercise plan.
Replace clothes that have complicated fasteners with those you can slip on easily, such as sweatpants, sweatshirts, or pants with elastic waistbands.
Exaggerate lifting your feet and swinging your arms. With each step, pretend you are stepping over a log.
Take extra-small bites of food, chew thoroughly, and swallow carefully.
Take a breath before you start to speak, and pause between every few words or even between each word.
Although there are no proven cures for PD, patients and experts are continuously working to refine and mitigate PD side-effects and symptoms. From care programs to physical and mental therapy, to everyday products that help patients cope with certain symptoms, people are working diligently to help those suffering from PD.
Many PD patients are seeking specialist support for a multitude of disciplines, ranging from psychology and language therapy to occupational therapy to name a few. According to Healio.com these same experts believe that “collaboration and communication between [specialist] disciplines is fundamental and the success of a [multi-disciplinary team] is predicated on an investment in coordination and resource allocation, both of which require a time commitment and financial support.”
Self-care and support from loved ones can have an immensely profound impact on quality of life as well. Take for example the origin of the staircase illusion – a design solution for PD patients who have problems in walking. MIT graduate and designer Mileha Soneji, discovered an interesting phenomenon that might drastically help PD patients (like her uncle) improve their ability to walk. Her staircase illusion is designed to help PD patients walk by employing the concept of continuous motion, such as the feeling of walking down or up a staircase. This is done by either painting the floor or flat surface to mimic a stair case, or by placing down large staircase illusion printouts for the patient to walk on.
The sensation of continuous motion helps alleviate the symptom known as freezing of gait, or the feeling of being stuck and unable to move. To truly understand the positive impact of this illusion, please watch Mileha’s related video.
From a medication standpoint, there are several medications available to treat PD, each one’s dosage and purpose dependent on various factors, such as the individual and rate of progression. The Mayfield Clinic published a reference guide to common medications taken by PD patients.
Medications can be expensive and not all medications and dosages are equally effective for each stage of progression or individual. Every patient has a unique nervous system, with specific dopamine levels that will determine the rate of progression and the stage at which symptoms appear and diagnosis is made.
Despite the encouraging success of self-care, it is important that patients receive personalized care that can help tailor the treatment plan or strategy to the patient’s rate of progression and initial diagnosis stage. Some PD patients have pre-existing conditions, such as hypertension, that need to be considered when assigning prescriptions which means that “PCPs must be prepared to adjust their patient’s high BP medication if the patient is diagnosed with Parkinson’s disease.” Additionally, many PD patients will develop new diseases and complications, such as “depression, anxiety, cognitive impairment,” and or autonomic dysfunction after their initial PD diagnosis. This underscores the need for consistent evaluation and reassessment of the disease’s progression and appropriate medication for the specific individual.
Supporting PD Management
Facing this debilitating disease, with all its complexities and uncertainty, one challenge at a time is key to successful management. Some problems and diseases are too large to solve with only one method or discipline. For optimal management of PD, self-care, familial support and patient-centered care through multiple disciplines is necessary. Plan providers can significantly improve PD outcomes by employing the tools that are available to identify pertinent historical patient and family information and by supporting and educating members on self-care.
For additional information for PD caregivers, you may want to visit this link as well.
Click here to schedule time to discuss your needs, and to learn more about how our Poindexter advanced and predictive analytics are helping clients to identify those within their population who need support with chronic conditions and co-morbidities so that they may offer proactive intervention and support.