May Meeting Notes — Zoom Visit with Dr. Rogers

We welcomed Dr. Sean Rogers, Neurologist and Co-Director of the Inova Parkinson’s and Movement Disorders Center, to our Zoom meeting on May 6. Sonia Gow, their outreach coordinator, attended our meeting as well. Dr. Rogers, who co-directs the center, informed us that they have opened a new Fairfax office, their Alexandria office is closed for renovations, and Dr. Walters, who is completing her UVA fellowship, will join the practice this summer. She will work out of Fairfax and eventually in Gainesville, when they open that office. Due to the Covid-19 corona virus, Dr. Rogers said their office plans to do telemedicine through December, but they are taking it a month at a time.

The first half of the meeting was devoted to Covid-19. Is it safe to go out to medical facilities? Dr. Rogers says it boils down to your own comfort level. He’s keeping in-person visits with patients to a minimum and his preference is for people to stay home unless it’s urgent (this applies to neurologist as well as other doctor appointments). For DBS adjustments or physical therapy, he suggests waiting if you can. If you must go, wear a mask. Inova Loudoun is starting up inpatient physical therapy soon and he is hoping to get people into the clinic by August for botox injections. Inova plans to open for elective surgeries shortly.

Dr. Rogers considers Parkinson’s patients to be a high risk group. We are not at greater risk of getting Covid-19 because of Parkinson’s disease. Parkinson’s does not affect the immune systems per se, but it does cause physical weaknesses that would impair the body’s ability to fight Covid-19. Weak coughs don’t clear the lungs and a weakened esophagus can cause swallowing difficulties. Both can both lead to pneumonia. Swallowing as well as breathing issues could make it difficult to take meds. Some people already have trouble breathing from Parkinson’s, which in theory is due to muscle weakness. If you don’t take deep breaths, the lower lungs don’t fill up. In addition to causing respiratory problems or pneumonia, Covid-19 can worsen Parkinson’s symptoms, causing people to feel weaker, shakier, and more unsteady. 

Dr. Rogers assured us not to worry about PD med shortages. There are potential supply chain issues that could delay shipping of medication from manufacturer to pharmacy. One of his patients had to wait two weeks for CVS to get Rytary. He advises letting your doctor know if you are close to running out of medication and to renew your prescriptions as soon as your insurance allows. If you use a mail order service, allow for extra shipping time.

To keep our immune systems strong, he recommends a multivitamin and vitamin D supplements at a bare minimum. He also suggests vitamins C and E and CoQ10. It is essential to keep up our overall health. We are all cooped up, unable to do what we once did. His patients are reporting poorer functioning. Dr. Rogers stressed the importance of continuing to exercise, if we can safely do so. Exercise also promotes the immune system. So does sleep, but he cautioned that too much sleep can weaken the immune system. His advice: Try to be as consistent with activities, doing what we did before the lockdown, and staying mentally and physically stimulated. We don’t want to lose too much ground that has to be made up when this is over. It’s also important to keep our habits the same: the times we go to bed, wake up, and eat. Keep your body and your mind active. 

Should we have the antibodies test? Right now, there are conflicting reports if having antibodies protects you or not. In theory, social isolating is for people who are not safe, that is in a high risk group. Those who are immune could still give the disease to others.

Dr. Rogers is not greatly into air travel right now. Too much exposure at airports and airplanes. The numbers for Covid-19 increased in the past two week; they are not going down. 90% of the cases in Virginia are in Fairfax County. He advises to do what you do if you feel comfortable. He and his family are staying home. He’d like to see the numbers trend down.

Dr. Rogers spoke about new Parkinson’s medications and answered questions during the second half of the meeting. Two new Parkinson’s’ medications have recently been approved by the FDA for “off” time.

Nourianz (istradefylline) is the first ever medication that affects a different part of the brain than other Parkinson’s medications, which all target dopamine. In the same part of the brain where dopamine could be considered the gas, the brain chemical adenosine applies the brakes. Adenosine gets higher as dopamine goes down. Nourianz blocks adenosine. It’s taken once-a-day, orally. Dyskinesia is one potential side effect, another is hallucinations from too much dopamine.

Ongentys (opicapone) is a COMT inhibitor like Stalevo and Comtan. With carbidopa/levodopa medications (Rytary and Sinemet), less than 15% gets to the brain. Most is lost in the body. COMT medications block the inhibitor that breaks down dopamine, so that 50% more gets to the brain. Ongentys is similar to but different from Xadago (safinamide) and Azilect (rasagiline). It can combined with rasagiline and is a good medication to add to a levodopa regimen.

Within the next few months, Dr. Rogers expects approval of a “breath strip” dopamine agonist that will work like the injectable Apokyn (apomorphine). Placed under the tongue, it gives a quick boost of dopamine. It has been available in Europe for a while.

There are about 17 to 18 different Parkinson’s medications and Dr. Rogers works to find the combination that works best for each person. Pharmogenetics, the science of what works based on genetical information, is not available yet. What he finds works for all people is to keep their medication as consistent as possible throughout the day. When carbidopa/levodopa levels go up and down, it can cause problems such as dyskinesia, off periods, and freezing of gait. Less than 1% of people taking dopamine agonists get impulse control disorder, but they can cause anxiety. Dr. Rogers is a huge fan of taking his time with meds, starting slowly and planning for years, if not decades of function. He likes to increase dosage slowly.

What meds can you take for dyskinesia? Amantadine is probably less effective over time for dyskinesia. Two longer acting medications are Gocovri (Amantadine ER), first FDA approved drug for dyskinesia, and Osmolex ER (Amantadine), same but cheaper. Both are taken once a day.

Are memory issues part of Parkinson’s? Yes, but there are different tiers. 60% – 80% of people with Parkinson’s will notice a slowdown in thinking and memory. The information is there, but it takes longer to be retrieved, like when you can’t think of a word or a name. You are slower to process information, slower to do calculations. Mild cognitive impairment is a decline in thinking greater than is attributable to age. Parkinson’s-related dementia affects people who have had Parkinson’s disease for some time. This  differs from lewy bodies where patients will experience dementia within a year of having Parkinson’s symptoms. This is considered Lewy Body disease vs. Parkinson’s disease.

Are there meds that help with memory? Medications for memory in Parkinson’s work better than for other diseases like Alzheimers. In Parkinson’s, the structure of memory is still intact. Improving acetylcholine levels in the brain will improve focus, clarify, and mental function.

To what extent does exercise improve cognitive function? Extensive research shows that cardiovascular exercise three-times-a-week (defined as rapid movements, breathing a little harder, and breaking a sweat) slows down symptoms of Parkinson’s disease in all its forms, including movement and memory. Exercise enhances dopamine production so that you may require less medication as the brain sets the dopamine it produces to a higher level. Exercise also improves energy, sleep, and mood. Dr. Rogers recommends cardiovascular exercise three-times-a-week (like a stationary bike, Rock Steady boxing, exercise class, or 30-minute fast walking) and walking, stretching, or weights on the other days.

Why do symptoms tend to come and go? Parkinson’s symptoms are affected by a lot of other factors–amount of sleep you’ve had, if you have a ‘bug’, how you eat, and exercise. If a new symptom has come on suddenly in the past week or two, Dr. Rogers will ask his patients what has changed. Parkinson’s progression is generally slow. He’ll order labs to check for urinary infections or to be sure nothing else is a factor. Tongue thrusting (the symptom in question) can be a dyskinesia. He suggests giving thought to any new or recurring symptom as to when it occurs and how meds affect it. The answer is not always to take more medication. Technically dyskinesia and-hyper movement don’t come in isolation. They are related to medication. He also said to pay attention to facial expression (the Parkinson’s mask). Physical therapy can strengthen facial muscles.

What about fish oil and diet? Is dairy bad for people with Parkinson’s? Fish oil is suggested as good for nerve and brain health. It is a good supplement to take. As to food, there is not necessarily one food that is bad. Protein is good as Parkinson’s can cause loss of weight and muscle tone. Protein prevents loss of muscle mass. Dairy is good to prevent osteoporosis. A lot of dairy could, in theory, change gut function or colon composition and cause constipation and bloating. There is not necessarily one diet that works for everyone. If you don’t process a food well, it can impact absorption of meds. Dr. Rogers suggests eating a healthy diet in moderation. If you suspect problems with dairy, cut it from your diet and see how you feel. He likes the Mediterranean Diet. It contains fish oil and good protein. If you need to gain weight, eat small portions more often and include more protein in your diet.

What about Sinemet (levodopa) and protein? Only about 12% – 15% of Sinemet (levodopa) actually gets to the brain. To get from your gut to your brain, levodopa uses the same transporters in the body as amino acids (in protein). Try to take medication with a good amount of water. If you chew Sinemet and drink with orange juice or acidic liquid, the medication gets in your system faster, but not much.



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