Parkinson’s Disease: Finding the Right Doctor and Medication Regime

And the importance of rehabilitation.

Parkinson’s has not affected our family, but one of my favorite septuagenarians is battling this disease. I want to understand her struggle, so I was intrigued when I learned about a rehabilitation program called “Big and Loud.” Big and Loud is specifically designed for Parkinson’s patients and next week’s article will explain how it works. The focus this week is on the disease, the importance of your doctor, and the role of rehabilitation.

When people think about Parkinson’s most think of Michael J. Fox and the uncontrollable movements of his body, put Parkinson’s also has a debilitating effect on speech, swallowing, and writing ability. (Jump to Lessons Learned)

At the heart of it, Parkinson’s is a motor system disorder. But what causes it? It is the loss of dopamine producing brain cells that can result in Parkinson’s Disease (PD). Replacing dopamine is the core of treatment, but rehabilitation that considers the particular needs and frailties of a Parkinson’s patient has shown to be highly successful.

Diagnosis of Parkinson’s disease is made through a neurological evaluation, physical exam, and review of patient history. A Parkinson’s diagnosis is based on symptoms such as: resting tremors, loss of balance, slow movements, decreased movements (steps get smaller), and writing that gets smaller and smaller. You may hear the term Bradykinesia which is a slowing of motions and a classic sign of Parkinson’s. In parallel is Hypokinesia, which is decreased bodily movement. Facial rigidity is another classic symptom.

PD patients are treated by a neurologist. I am intrigued by a sub-specialty of Neurology: Movement doctors. This sub-specialty has additional expertise about what is going on in the part of the brain that lacks dopamine. Per John Devone, VP of Operations for Princeton Care Center: “Movement doctors are trained to look for default or negative effects in how you move. They tend to be more in tune with needs diagnosis and effective treatment for degenerative diseases like PD and how to manage secondary symptoms like excessive saliva. They are often more in tune with new drug trials for Parkinson’s Disease.”

A key component to living with Parkinson’s is finding the right physician. According to John, your doctor should conduct a proper analysis at every visit. The analysis should have the PD patient move through a list of parameters, some vocal, some physical, and analyze each parameter to see if the patient is stable, better or worse. The goal of the analysis is to allow the doctor to follow-up with changes in the dosage and timing of medication. These adjustments are helpful in improving or keeping symptoms from worsening. It also opens the possibility of adding to or deleting alternative drugs, as well as having rehabilitation therapy.

Controlling symptoms requires a lot of time and energy on the part of the patient, staff, and family members. Here are 5 ways your doctor can help control Parkinson’s systems:
1. Physical therapy
2. Energy conservation – fatigue is a huge factor in Parkinson’s
3. Timing of medications to combat rigidity
4. Retention of Independence
5. More invasive procedures such as deep brain stimulator device, or dopamine replacement pumps.

Finding a rehabilitation program that can be tolerated by a PD patient is critical. The Centers for Medicare & Medicaid Services (CMS) requires three hours a day, five days a week rehabilitation and “improvement” to qualify for acute rehab. Parkinson’s sufferers often cannot tolerate an acute rehab regime due to fatigue. Many will “wash out” of these types of programs. Other rehabilitation options may be a better option, like a sub-acute facility. In general, Big and Loud is a specific program that may be a better fit and a more manageable pace for the Parkinson’s Patient.

Lessons Learned:

• Cognitive issues seen with Parkinson’s disease include: confusion, difficulty concentrating, as well as difficulty staying organized.
• If someone is having a hard time starting the motion of walking (Bradykinesia) marching in place can get them started.
• When the face gets rigid, it can’t express emotions which is hard for the family and caregivers. It is not that the PD patient lacks emotion, their face can’t show it.
• Look for rehabilitation programs that work on symptom control, work to maintain, improve and restore function. Programs should consider the patient’s quality of life and base their rehab program on the patients’ goals. What activities of daily living do they want and can they perform? How can the ability to communicate be maximized?
• The program you choose should look at the whole person and determine what physical mobility is impaired related to stiffness and weakness. In what ways is the patient incapable of self-care due to neuromuscular weakness, a decline in strength, loss of muscle control and coordination? How is verbal communication impairment related to the decline in speech and facial muscle stiffness?
• Parkinson’s onset dementia is the second most prevalent dementia.

Thank you to my collaborator on this series, John Devone.
John Devone obtained his MD degree from the University of Bologna, where he also did a doctoral thesis in geriatric rehabilitation as well as working in research at the University. Prior to joining Princeton Care Center (PCC) as VP of operations, John worked in administration at the NYC Rusk Institute of Rehabilitation. John’s mom has been a Parkinson’s Disease patient for over 20 years, and has benefited from the Big and Loud rehabilitation program at PCC. Thank you to John and his mother for allowing us to use photos of her participating in Big and Loud. For more information on this program, click here: Princeton Care Center Parkinson’s Rehab

Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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