As part of our topic, How to Get the Most of Your Neurologist Appointment”, we were fortunate to be able to have Dr. Nicole Dietz speak to our group. She was very informative, generous with her time and patient with our questions. She said she’d be happy to return and we would warmly welcome her back.
The information that follows in this post comes from notes taken by two attendees, with some research to verify note interpretation. Even with that, there is the possibility of human error (mine) . Should you find such an error, let me know and we’ll quickly correct it.
Over a million people live with Parkinson’s Disease in the United States, making it the most common neurodegenerative disorder. Approximately 60,000 new cases are diagnosed each year in this country.
Dr. Dietz’s Presentation
The causes of Parkinson’s Disease are varied. Those affected should not think that something they did or did not do caused their disease. Environmental exposure, pesticides and heavy metal in well water, combined with a genetic predisposition. Fifteen to twenty percent of the cases show a familial pattern. There are some cases of spontaneous mutations.
Parkinson’s Disease affects chemical messengers (neurotransmitters) in the brain’s nerve cells (or neurons). The neurons send chemical messages and other cells have receptors to catch them. Dopamine is one of the neurotransmitters and is found in the basal ganglia of the brain. With Parkinson’s, the cells that make dopamine are degenerating. Symptoms appear when there’s not enough dopamine. Changes begin in the brain. Scientists theorize that the changes start first in the lower brain stem. Specific brain stem nuclei are responsible for gastrointestinal processes, pain, mood, and the sleep/wake cycle among other functions. This would be why some non-motor symptoms show up first, such as sleep problems, constipation, depression and anxiety, even 20 years ahead.
In order to have a diagnosis of Parkinson’s Disease, doctors look for 3 of the 4 main symptoms:
* bradykinesia (slowness of movement)
* stiffness or rigidity of the arms, legs or trunk
* balance issues, also called postural instability
There is no test like a blood test or biopsy to aid with diagnosis. In addition to the neurological exam, the clinical diagnosis, combined with a physical and the patient’s history contribute to the diagnosis. There is research, however, indicating that looking for changes in a small skin biopsy may help detect changes earlier. Skin has the same origin as brain tissue while in the embryo. The theory is that they might also show the same abnormal proteins.
While 30% of affected people show no tremors, there exists a wide variety of non-motor symptoms. Among them:
* sleep dysfunction
* loss of sense of smell
* memory problems
* slower processing
No two cases are alike. We shouldn’t compare our personal version with others. Treatments will vary because symptoms do and because patients tolerate different medicines in different ways.
Managing Parkinson’s Disease
Managing your PD is a team effort. Who’s on the team? Your neurologist, your family, your general practitioner, physical therapists, speech and occupational therapists, as well as counselors.
The theory used to be not to treat PD too early because of side effects and fear of losing responsiveness to medications. Time has shown that early treatment = better prognosis.
Other management tips:
The biggest lifestyle modification is EXERCISE. She defined exercise as something which raises your heart rate and causes you to break into a sweat for 20 minutes at least 3 times a week.
Dr. Dietz recommends a well-balanced diet, particularly the Mediterranean diet. As a full-service blog, I offer this description of that diet from the Mayo Clinic:
• Eating primarily plant-based foods, such as fruits and vegetables, whole grains, legumes and nuts
• Replacing butter with healthy fats, such as olive oil
• Using herbs and spices instead of salt to flavor foods
• Limiting red meat to no more than a few times a month
• Eating fish and poultry at least twice a week
• Drinking red wine in moderation (optional)
The diet also recognizes the importance of being physically active, and enjoying meals with family and friends.
Programs such as the BIG & LOUD therapies do a lot of good.
Main but Not All Medication Types
* Agonists which mimic dopamine
* MAOB-Inhibitors which block enzymes and protect dopamine production
Can you talk about the new extended release carbidopa/levodopa (Rytary)?
Dr. Dietz had only, as of that day, written a prescription for this new medication which was just released. But one of our own has already been prescribed Rytary. This is a combination of both extended release and regular release carbidopa/levodopa. Our member was exhausted in the evening and she had trouble getting to sleep the first couple of nights. She thinks her dyskinesias aren’t necessarily better but they’re not worse. Most important to her is that her “off” periods seem to be under control, critical for her as she’s still employed. She also takes it less often
What is the difference between the old Sinemet CR and the Rytary?
The older CR didn’t release as evenly or dependably as the Rytary.
How do you decide which medication is is best for a particular patient?
This will help patients suffering with symptoms of tremor and rigidity and for patients whose sleep is disturbed by trying to to keep up with their meds. There will be a lot of trial and error as doctors see how patients react to the new med.
Member asked why her dyskinesias are worse at night.
People experience dyskinesias at different times of their medication cycle. Amantadine and Rytary can help smooth out cycles.
What if my new medication isn’t working and my next appointment is four months away? The issue of doctor availability.
First, remember that there is always a period when you start medications when you don’t feel well. So you have to give the new med some time before you talk to the doctor. After that, if you have concerns, call the advise nurse line in your doctor’s practice or make an appointment to go back between regular cycle appointments.
How do you prioritize what you want to discuss with the doctor? There are so many non-motor issues that may or may not be PD-related.
Have a list of three things to focus on. What is bothering you the most?
I’m feeling very anxious and depressed. Can the office recommend therapists?
Yes, the office has a list. If you need medications for your depression, you might need to see a psychiatrist. But don’t wait. Depression makes everything worse.
On the subject of the shortage of neurologists and its impact on their availability to patients, a member brought up that there are boutique medical practices, which for an annual fee of $1,600 are there for you whenever you need them. (AKA a concierge practice).
I just heard the term “Parkinson’s Dementia”. What does it mean? Is it the same as Lewy Body Dementia?
It is not uncommon for people with Parkinson’s to have some cognitive dysfunction. And, in some cases, behavioral manifestations point to dementia. They are unsure if there is any connection to Lewy Body Dementia. One way to tell them apart: If motor symptoms come before cognitive, its PD. If cognitive symptoms appear before motor issues, it’s Lewy Body Dementia.
Dr. Dietz, on the subject of current medical practice:
Despite all the talk about medical records being “in the cloud”, the reality is far different. There are at least six different types of electronic health records. Inova has its own for its massive system. Problem is, none of the 6+ types of records talk to each other. So the neurologist can’t easily see your records from your GP or xrays/blood tests. She feels one of the better systems, despite its many other problems, is the one used by the Veterans Administration.
One member has been going to the same Neuro practice for 9 years. Every time she has an appointment, she carries in the required paperwork. What do you do with all that information?
The information gives the doctor something to work from but they don’t always refer to them. And some are for insurance,t o check off the boxes.
Is it a good idea to get a second opinion?
Yes, it is. Whether its to get another diagnosis validation or just to have someone take a fresh look at your symptoms, a second opinion is a positive thing. No doctor would mind.
What is the most promising new development for affected people?
Research is being done at Georgetown University utilizing a treatment developed for treatment of Chronic Myelogenous Leukemia (CML). The drug, Nilotinib, shows promise in reactivating cells that could make positive changes in patients with PD and maybe even stop the PD in its tracks Its already being used so they know it is safe in humans, The dose for PD might be less than the dose for CML.
Our thanks go out again to Dr. Nicole Dietz for agreeing to speak to our group and taking on every question thrown at her. it was a most informative session and we look forward to her returning to speak to us in the future.