February Meeting Notes–Dr. Randy Stephenson

We welcomed three new attendees to our February 1 meeting, an informal Q & A with our guest speaker, Dr. Randolph Stephenson, Neurologist at the Neurology Center of Fairfax. Dr. Stephenson began by talking about Dr. Linda SIgmund, whose neurology practice he took over when she retired in 2012. Dr. Sigmund, a physical therapist prior to attending Georgetown University School of Medicine and becoming a neurologist, helped found the Parkinson Foundation of the National Capital Area (PFNCA). There were no movement disorder fellowships at the time; Dr. Sigmund applied her experience as a physical therapist and what she learned from her patients, by reading, and going to symposiums to treat her patients. Dr. Stephenson was a Fellow at the University of Pennsylvania Parkinson’s Disease and Movement Disorder Center when Dr. Sigmund recruited him. He feels fortunate to have worked with Dr. Sigmund for a few years, from whom he learned so much, and to have walked into a practice with so many wonderful patients.

Dr. Stephenson originally wanted to be a surgeon, but switched to neurology due to a mild hand and head tremor which runs in his family. “Parkinson’s is one of a few neurological conditions that can be treated,” he said. “There are medications available that can potentially help people.” He also likes the hands-on aspects, adding, “Movement disorders is a very visual field. You have to see it to diagnose it. Parkinson’s cannot be diagnosed by a blood test or MRI.” DAT scans were not available to the general public until four or five years ago. Dr. Stephenson finds them helpful if he’s not sure of the diagnosis or a patient needs reassurance of his clinical diagnosis. DAT scans cannot distinguish between Parkinson’s disease and atypical Parkinsonism, however, and are expensive and not always covered by insurance.

How do we know which of the 5 Stages of Parkinson’s we are in and can you give a brief overview of each stage? Dr. Stephenson looks for shuffling, freezing, and falling to tell him how severe someone’s Parkinson’s is. Most people are in Stage 2 when they first come to see him. He does not find the difference between Stage 1 and Stage 2 to be meaningful or useful. In Stage 1, one side of the body is affected only. In Stage 2, both sides are affected, but one is clearly more affected than the other. The difference between Stage 2 and Stage 3 has to do with stability. There are more stumbles and falls. Falls are the #1 complication of long-standing Parkinson’s and need to be addressed. In Stage 4, there are more frequent falls and people become more reliant on assistive devices like walkers and canes. In Stage 5, people are essentially wheelchair-bound, but most do not make it to this stage; they die of something else first.

What about cognitive decline and Parkinson’s? Dr. Stephenson said the definition of cognitive function varies from doctor-to-doctor and patient-to-patient. With Parkinson’s, there are usually cognitive changes which affect executive function, often present at the time of diagnosis. These changes are not considered to be “dementia”. There is much not known about the cognitive affects of Parkinson’s, but people who present with tremor and nothing else traditionally have a much slower and more benign progression over time. But Dr. Stephenson has patients who present with other symptoms and still have slower and more benign progressions. These cognitive changes differ from the memory impairment of diffuse Lewy body disease, which becomes apparent within one to two years of diagnosis.

Are eye and vision problems caused by Parkinson’s? It’s hard to know if they are caused by Parkinson’s or not, but eye issues (such as retinal tears) and vision problems have an impact on Parkinson’s, from affecting balance to causing illusions and hallucinations. Cataracts or anything that distorts a visual image can interact with the brain and cause it to perceive something that’s not really there. Vertigo, per se, should not be a Parkinson’s symptom. Dizziness is a very common Parkinson’s complaint. Some medications contribute to dizziness, as can cause sudden drops in blood pressure.

In addition to exercise, what else potentially slows down the progression of Parkinson’s or improves quality of life? Dr. Stephenson wholeheartedly recommends exercise — any intense aerobic exercise, especially walking — to slow down progression. To be most effective, he says to dedicate a certain period of time each day to exercise, a minimum of 4-5 days a week, 35-40 minutes at a time. Those who can’t always walk without falling have to work with that, knowing what things cannot be done safely. Some people have problems in big open spaces, others in crowded situations, freezing or shuffling. Swimming is one of the best exercises there is as it works every muscle. Dr. Stephenson cautions people with Parkinson’s to be careful swimming and never go swimming alone. Parkinson’s disease often impacts the ability to swim and someone might not realize it until they are in water over their head. He suggests water aerobics as a very safe and good exercise option.

Are there any new medications or treatments on the horizon you are excited or hopeful about? The primary focus of Parkinson’s research, the biggest area of hope, according to Dr. Stephenson, is finding a medication to slow down, stop, or reverse progression rather than finding a “cure”. There are some exciting and promising trials, one at Georgetown, going on right now.

In regards to vitamins, supplements, and other complementary care options, in your opinion, which are potentially beneficial, which harmful, and which a waste of our time and money? Dr. Stephenson said benefits are dependent on the individual, but he’s seen patients with rigidity and stiffness experience relief for a few days after massage. Acupuncture offers some relief from tremor. As far as supplements go, no studies have shown evidence they help. But lots of people with Parkinson’s are low on Vitamin B12, critical for neurological functioning. Low levels can cause brain, spinal, and nerve damage. He likes that number to be above 400, higher than for people who do not have Parkinson’s. Vitamin D is important for neurological and overall health. If below 30, he advises supplements. Other vitamins some of his patients take and find helpful are CoQ10, creatine, and turmeric, which could be a placebo effect, as well as probiotics, which can be helpful for constipation and aid absorption of levodopa.

What are your thoughts on Rytary? Rytary is a great medication, but very expensive. Some insurance policies refuse to cover the cost. Dr. Stephenson suggests shopping around, as costs can vary from one pharmacy to another. Rytary is a time-released carbidopa/levodopa (C/L) medication. The previously used extended release C/L was metabolized unpredictably and not very effective.

Most of us in our group have been dealing with Parkinson’s for 6-15 years. We are not newbies. We’ve experienced adverse effects of medication, including sudden off periods, dyskinesia, dystonia, and sleepiness. Can you briefly review why each occurs and how you treat them?

Dr. Stephenson addressed the motor complications first: dyskinesia is typically a medicine side effect; dystonia can be a wearing off side-effect. Both come about after being on levodopa for a long time, but are really a reflection of the disease’s progression. Dyskinesias are random movements, usually in the hands, face, trunk, and arms. Dystonia occurs from over-activation of a specific group of muscles and causes movements that are not normal and often painful. There are different ways to address each symptom. There are medications for dyskinesia like Amantadine, but it can cause confusion and hallucinations. Gocovri, a long-term amantadine, is expensive. Other options are to decrease the strength or increase the frequency of levodopa medication, or remove a medication altogether. Dr. Stephenson also tries removing Azilect to see if dyskinesia gets better. Rytary can help with motor fluctuations and sudden wearing off of medication. He’s not seen great results with Nourianz. DBS (Deep Brain Stimulation) can address on/off periods. It does not slow down progression but increases the level of function for someone with Parkinson’s. Most people are not good candidates for DBS. The three issues it addresses and the criteria for DBS are: severe tremor, severe motor fluctuations, and severe dyskinesia.

Thank you to Dr. Stephenson! Our next meeting is Wednesday, March 1, for Just-Us Share Time. We will talk about the changes to our minds and bodies that come with aging. How can we tell which are a part of “normal” aging and which are related to Parkinson’s. More information will follow soon.

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