Dr. Drew Falconer, who has directed the Inova Parkinson’s and Movement Disorder Center (IPMDC) for the six years it has been in existence, and Dr. David Whitney, who joined the Center two years ago, were our guest speakers. Both are board-certified neurologists and fellowship-trained movement disorder specialists.
Dr. Falconer echoed our theme of back-to-basics, sharing how our group helped shaped the Center. We were the first support group he visited in 2015. He listened to our needs and wants for movement disorder neurologists who were approachable, made us feel heard, and were willing to “walk the walk with us” to figure out how to make us feel better. Both he and Dr. Whitney expressed joy at being able to meet in-person again and to reconnect, talk, and educate to get everyone back on track.
We’d asked the doctors to speak on Movement, Motivation, Medication, and More, which they did, alternately offering information and insights.
What we know about Parkinson’s: It is a chemical deficiency in the brain that can be compared to a car running out of gas. We need to figure out how to refuel it smoothly. Parkinson’s is a treatable condition and should not hold us back from doing what we want to do. We shouldn’t have to give up things for Parkinson’s. We don’t have to accept dyskinesia. If symptoms emerge during the day, it’s often a medication and not a Parkinson’s issue.
Dexterity, tremor, and tone are used to assess Parkinson’s. If symptoms are coming out, it indicates we don’t have enough dopamine. Dyskinesia and hypomania are signs of too much dopamine. Dopamine levels tend to vary throughout the day, with factors such as stress, constipation, and not enough sleep worsening symptoms.
The doctors acknowledge it’s hard for us because they can’t make Parkinson’s “go away.” But by working in partnership with our doctors (and they unequivocally recommend working with a movement disorder specialist), we can find the right combination of medications to “fix” it. 40-50% of the people who visit their clinic exhibit no symptoms.
Options to fix it: In the last 4 years, new medications have revolutionized the treatment of Parkinson’s disease. There are 23 different medications as of today, plus DBS (Deep Brain Stimulation) devices offered by three providers and the Duopa pump. These help fix the chemical problems resulting from medication fluctuations and offer better options to the traditional carbidopa/levodopa (Sinemet) therapy, in use since levodopa came out in 1968, followed by Sinemet in 1971.
Answers and Information in Response to our Questions:
DBS does not stop working. According to a European study, after 15 years, people who had DBS were doing better than people who were just on medication. Three companies, Abbott, Boston Scientific, and Medtronic, supply DBS devices, each with a specific uniqueness. Clinicians like Dr. Falconer and Dr. Whitney assist their patients by evaluating if DBS is an option for them and, if so, which of the devices would be best. After DBS, they monitor the device forever. A neurosurgeon, such as the one in their Center, performs the surgery to implant the device.
Effects of caffeine on Parkinson’s: The science is mixed. Caffeine is a stimulant and can make tremor worse. It can also promote emptying of the stomach and gastric motility, which helps medications work better. Nourianz, a fairly new Parkinson’s medication for “off episodes,” can have a similar action as caffeine, although it’s not known how it works.
Dairy and Parkinson’s: There is some evidence that the fat content in dairy can impact medication absorption. But overall the doctors feel that the impact of diet and dietary restrictions are way overblown. With the traditional Sinemet therapy, only 5% of levodopa makes it to the brain. High protein and dairy meals affect its absorption. Rytary removes the need for dietary restrictions as it doesn’t get absorbed all at once.
New medications on the horizon: A longer-acting medication than Rytary, but with a different mechanism for release, IPX203 (trial name) has just finished clinical trials. Whereas Rytary comes in a capsule with 150 time-release beads inside, IPX203 is a tablet coated in layers of medication that release at different times. Participants in the trial took it 3 times a day. Since the FDA was a part of the trial, the new medication should be approved more quickly and the doctors expect it to be available in less than a year. A subcutaneous pump that does not require surgery (like the Duopa pump does) should be out in the next 2 years. There are also about 6 to 8 other medications in trial at this time.
Medicare treats Parkinson’s disease very well in terms of benefits. In selecting a plan, the doctors suggest calling a Medicare counselor to walk you through the various plans. Ask if a plan covers Rytary and one of the other new medications (such as Gocovri, Nourianz, or Ongentys). Chances are if a plan covers these medications, it will be a good plan for Parkinson’s. When it comes to medication, the problems come down to cost vs. coverage. The cost is different for everyone because insurance isn’t covering the high cost. While you can’t use co-pay cards from drug manufacturers for Medicare, there are sometimes ways around it as Part D–Drugs–is farmed out to independent companies.
Mucuna vs carbidopa/levodopa medications: Mucuna is a natural form of levodopa. There is no real robust research behind it. Most doctors who treat Parkinson’s disease don’t know much about it.
Carbidopa/levodopa medications generally work well for about 5 to 6 years before their effectiveness begins to fluctuate. Data on the new medications indicate 10+ years before fluctuation occurs. The life expectancy of 20-30 years for a person with Parkinson’s disease taking the new medications is the same as the 20-30 year life expectancy of a person without Parkinson’s.
As-needed therapy medications to fix problems on bad days are empowering tools. These include Apokyn (used less often as it’s injectable and many people have an aversion to needles, plus it has the most side effects); Imbrija (an inhaled version of levodopa); and Kynmobi (a strip placed under the tongue, it works in 10 minutes). The doctors discussed these as-needed “rescue” medications are best for once-in-a-while, unpredictable, or random fluctuations. If “off” periods occur at the same time every day, there may be a better way to fix than “patching the same hole” daily.
Foundational therapies (such as Rytary) require consistency. Rytary’s peak benefit occurs 4 to 6 hours after taking. It can stay in your system for up to 10 hours. The doctors stress whether you feel good or not, you still have Parkinson’s and the brain wants consistency. You should not chase your symptoms with medication, but rather take your medication at prescribed times. If you are waiting for a dose to wear off before taking the next one, you are not taking your medication optimally. Everyone’s dose regimen and timing are going to be different. The doctors caution, however, against taking Rytary closer than 4 hours apart because dosages will overlap. Although prescribed medication is sometimes needed to treat side-effects of other medications, many times another solution (such as adjusting current medication dosages) can be found.
Talk about your symptoms. Tell your doctors how you feel rather than use medical terminology. Parkinsonism means “you look like you have Parkinson’s.” It is not a diagnosis.
The cause of hallucinations can be tough to determine. They can be a symptom of Parkinson’s disease, a side-effect of medication, or made worse by medication. If they are not a problem or occur occasionally (once-a-month or so), the doctors will leave it alone. If hallucinations occur more frequently and are bothersome, they often need to be treated. There are some newer medications for hallucinations and delusions that work on serotonin instead of dopamine and do not make Parkinson’s symptoms worse.
Medications are the doctors’ job as neurologists. The most important job for ourselves is exercise. In addition to helping with symptoms, exercise also protects the brain. It doesn’t matter what we do. Some people build on physical therapy and work on balance or range-of-motion. PFNCA and IPMDC offer online Zoom exercise classes and forums to keep us engaged. Support groups offer camaraderie and the opportunity to connect and learn from others who are going through what you’re going through. Physical and occupational therapists can help identify what is needed for the problems we are trying to solve. An occupational therapist can also do a home evaluation and make safety recommendations.
Additional resources offered through the Inova Parkinson’s and Movement Disorder Center: Sonia Gow, Program and Community Care Manager, can be contacted at sonia.gow@inova.org or 703-375-9987 for information about the Center’s educational, exercise, and support programs. They provide resources for anyone with Parkinson’s, as well as their family and friends. All programs are free, on Zoom, and open to everyone, whether you are a patient of the Center or not. You can also sign up for the weekly e-newsletter, Reaching Out and Keeping in Touch, at http://eepurl.com/gPkGlf
A PDF can be found here of the pamphlet about the Center that was distributed at the meeting.
A reminder that no one should adjust the dosage or timing of any of their medications, stop taking any medication, or make any changes whatsoever (including the use of nonprescription supplements) without first consulting with their individual doctors.
You guys are doing a great job of organizing and taking notes. Thanks.
Judy