(May 2023, Dr. Bernardo Rodrigues, Chris DeFrancesco)
Chris: Tremors, stiffness, slow movements, changes in balance — they’re all signs of Parkinson’s disease, but they can be signs of other movement disorders too. Today on the Pulse, we discuss what to watch for, when to seek help, and the role of caregivers for these illnesses.
This is the UConn Health Pulse, a podcast to help you get to know UConn Health and its people a little better, and hopefully leave you with some health information you’ll find useful. I’m Chris DeFrancesco. Now second to Alzheimer’s disease, parkinson’s disease is the most common neurodegenerative illness, affecting more than a million Americans. Treatment involves a combination of medication, rehabilitation, and support, and that can go for other illnesses that can mimic Parkinson’s disease. So to help us get it all straight, we have with us Dr. Bernardo Rodrigues, director of the Parkinson’s Disease and Movement Disorder Center at UConn Health.
Thank you for joining us.
Dr. Rodrigues: Thank you for having me here, Chris.
Chris: Let’s start with Parkinson’s Disease. What is it, how and when does it start, and the kinds of impacts it has on patients?
Dr. Rodrigues: Well, like you very well said, Parkinson’s disease is a condition that people will develop a deficiency in dopamine in their brains, and that will lead to a variety of symptoms. I think you only scratched the surface when you mentioned the tremor, the stiffness, the slow movements. It seems to affect patients in many other ways, sometimes with pain, constipation, trouble swallowing, trouble even sleeping, so it’s a very upsetting condition for patients.
Chris: What’s the connection between the dopamine, or the problem with the dopamine, and all these other functions? It has to do with neurology, correct?
Dr. Rodrigues: Yeah, so dopamine is a very common neurotransmitter in the brain, and it seems to be active in many systems. The most important system, of course, is the motor system that controls the movements, the tremors, the balance, the walking, but it also seems to have impact in adjusting the sleep cycle and also the mental functions, depression, anxiety, and even cognition.
Chris: Do certain people or age groups or populations tend to be more susceptible?
Dr. Rodrigues: We don’t like it to think that way. We think that aging is the most important risk factor for Parkinson’s disease. It’s estimated that 1% of people age 60 and above will develop Parkinson’s disease, and that prevalence increases with age. By age 80, for example, 4% to 5% of that population will develop Parkinson’s disease.
Of course, there are some genetic causes that can increase the chance of Parkinson’s disease, but we don’t see Parkinson’s disease as a single gene condition. It’s typically a combination of environmental factors, genetic factors, the most important one being age.
Chris: What might some examples of an environmental factor be?
Dr. Rodrigues: So there have been many environmental factors that have been associated with Parkinson’s disease, but alone they don’t cause Parkinson’s disease. One of the most famous one was Agent Orange during the Vietnam War. A lot of patients who had exposure to that agent and that chemical eventually developed Parkinson’s disease. Sometimes an infection, for example, the flu, the Spanish flu in the 1915s, they did develop a higher prevalence of Parkinson’s disease then, so we’re trying to identify these factors. Sometimes smoking can be protective, so it’s very tough to really single out.
Chris: The risk factor kind of starts around age 60 at 1%, and it kind of goes up from there. There are a couple of famous exceptions to that.
Dr. Rodrigues: Correct.
Chris: Michael J. Fox, Muhammad Ali. But it’s not like multiple sclerosis, where you discover it in your 20s.
Dr. Rodrigues: Correct. Parkinson’s disease, absolutely, is a later-life condition, but there are people who develop it very young and we call that young onset Parkinsonism. And that is kind of a million dollar question, why these people have Parkinson’s disease so soon in their lives. And we were not able to identify a single agent. So we mentioned some chemical exposure, some trauma, like Mohamed Ali, infection, but there is no one thing that will make you have Parkinson’s disease younger, or at least nothing that we were able to identify to this point.
There is a famous research project going on right now, run by the Parkinson’s Foundation, that they’re trying to identify, together with the Michael J. Fox Foundation, the factors, the risk factors. What are the biomarkers for Parkinson’s disease? Because that’s really what is going to guide the treatment eventually.
Chris: Parkinson’s and movement disorders, so movement disorders include Parkinson’s disease, but there are others kind of under the broader spectrum that you treat in your clinic. So what are some other examples of movement disorders and how much of an overlap is there potentially with the symptoms? Someone might come in thinking it’s Parkinson’s and it might be something else, or the other way around?
Dr. Rodrigues: Oh yeah. We see a lot of patients for initial evaluation for Parkinson’s disease that they will, luckily, not have Parkinson’s disease in the end. So the tip of the iceberg is typically tremor. A lot of patients come to the clinic for assessment for Parkinson’s disease because they have developed a tremor. The thing is that tremor is a fairly common symptom as you grow older, and there are several other reasons why people have tremors. So we do have to investigate and rule out those conditions.
The most common one is something called essential tremor, which is enhanced physiologic tremor, something that typically runs in families and is much more benign than Parkinson’s disease. It still can affect your quality of life and your daily activities, but it’s a completely different condition with different treatment and different prognosis. So we typically recommend that you see a neurologist, especially a movement disorders-trained neurologist, to really sort out what kind of tremor you have.
Another common reason for the visit in the clinic is gait and balance change. And we have to sort out confounding factors. As you’re growing older, is it due to arthritis? Is it because you have spinal stenosis or is it another different neurological condition? Stroke comes to mind, multiple sclerosis comes to mind. So we do have to rule out all of those things before we come to a diagnosis of Parkinson’s disease.
Chris: Let’s talk a little bit about what’s going on at UConn Health’s Parkinson’s Disease Movement Disorder Center, the kind of training and expertise that that is there.
Dr. Rodrigues: Yes, UConn is an academic center before anything, so we host the medical school and we have a neurology residency program, and we’re fortunate enough to partner with Hartford Healthcare and have a movement disorders fellowship. So not only we train the next generation of doctors, we train the next generation of neurologists, and we actually are currently training the next generation of Parkinson’s disease and movement disorders specialist, which is a fellow.
Chris: So you have a fellowship specifically for this discipline?
Dr. Rodrigues: Correct.
Chris: And how long have has UConn had that?
Dr. Rodrigues: So we have had the fellowship for three, four years now, and we have trained three neurologists into treating Parkinson’s disease.
Chris: And so how many years, is that one year?
Dr. Rodrigues: It’s a one-year training.
Chris: That will be happening in perpetuity until something changes. So each year we’ll have a new person coming in as a fellow.
Dr. Rodrigues: Fellow, and it is the whole purpose of the fellowship. This was an initiative made possible by the Chase Family Foundation. They were generous enough to sponsor, and the goal of the fellowship is not only to train a movement order specialist, but to retain here in Connecticut.
Chris: Very important.
Dr. Rodrigues: We want patients to have more access to specialists because that will allow not only for earlier diagnosis, but also better care, better management, access to new therapies.
Chris: Earlier diagnosis, all right, so that’s important in so many different disorders. Why is it so important in this case?
Dr. Rodrigues: Parkinson’s disease is a slowly progressive condition, and the sooner you get the diagnosis, the better the treatment you’re going to have, the better access to physical therapy and rehabilitation services, and you will understand better access to medications, surgery, and even other kinds of therapies.
Chris: There is no cure. So it’s just a matter of management. So the sooner you can get in and intervene, maybe the more you can kind of fight off or delay the onset of the disability or loss of function.
Dr. Rodrigues: Right. And that’s why we have an initiative with the Supportive Care and Planning Clinic, because the American Academy of Neurology recommends that patients with Parkinson’s disease, they have advanced care planning. The goal here is to understand the challenges that the disease will bring to your life and prepare for that. So if you’re prepared for the challenges ahead of you, you will have a much better time dealing with them. You’re going to have better quality of life, you’re going to have better response system, better safety systems.
And like you said, the medications, they work really well. The medications do not cure the disease, but they treat the symptoms, so you will feel much better. I’m going to give you an example. The medication doesn’t cure the tremors, but it can stop the tremors from happening as long as you’re taking the medication or you if you have the surgery.
Chris: What are some examples, Dr. Rodrigues, of things that can be done to assist patients in managing their Parkinson’s disease and movement disorders?
Dr. Rodrigues: So that’s a great question because a lot of people focus on medication treatment for Parkinson’s disease, which is of course is a big part of the treatment. But a lot of patients will also have access to rehabilitation programs and those are specifically designed for. Parkinson’s disease. And many research studies have shown that physical activity seems to slow down the disease progression, seems to improve cognition and improve quality of life.
We also have a very active Botox clinic that is used for prevention of drooling and treatment of muscle spasms and stiffness. And we also have advanced therapies such as duodenal infusion of the medication and deep brain stimulation surgery. So these are really fancy treatments for Parkinson’s disease. There are very, very safe and very, very effective.
Chris: The supportive care and planning, you started that at UConn Health four or five years ago. Talk a little bit about how that’s been received and the difference that that can make when a patient comes in with that element of the care plan.
Dr. Rodrigues: Oh, we’re very proud of the program and is a very unique program here in Connecticut, because we’re able to have a multidisciplinary clinic where we have our social worker, our nurse and the doctor present at the visit and we can address multiple symptoms that typically are not addressed during a regular neurological visit. There are some time constraints to a visit with your doctor, so when you expand that with the second type of visit, you allow a patient to talk about issues and topics that wouldn’t come up naturally and you also allocate some time to take care of the caregiver. It’s very important to take care of the caregiver because they will be part of the healing system for the patient. And here at UConn we have the supportive care and planning clinic, that we do have specific questionnaires to look for quality of life for the patient, but also quality of life for the caregiver.
Stemming from that, we were able to create support groups for these populations. So here at UConn Health, we do have a Parkinson’s disease patient support group, and a Parkinson’s disease caregiver support group, because they need some time to decompress. They need some time to share what is important for them, and they need some time to really think, to take care of themselves so they can take care of the patient. And also we feel that is a holistic approach to the patient.
Chris: And we’ll put the information on the support groups in the show notes. And I wanted to also mention before we say goodbye, you recently had a couple of symposia, for two different audiences, specific to Parkinson’s. So tell us a little bit about who went to that and what they might have gotten out of it.
Dr. Rodrigues: This was a pleasure. April was the Parkinson’s Disease Awareness Month, and we wanted to really bring more education programs to the community. So we do have two different symposia because we want to focus on two different populations.
The first was for health care professionals, and the goal is to educate health care professionals about Parkinson’s disease, again in the same theme of early diagnosis and improving access. So we want your primary care physician to be comfortable diagnosing Parkinson’s disease, comfortable making the referral for us to see them if they need, and have access to all of the new technologies, all the new diagnostic testing, all the new rehabilitation therapies, all the new medications.
The second symposium was focus on patients and caregivers. So the theme of this year was wellness. So we focused on teaching patients ways to improve their wellness, to improve their care, to improve their quality of life, while living a healthy, happy, and long life with Parkinson’s disease. So these were wonderful symposia, very well attended, patient satisfaction was very high, and we’re looking forward to doing it again next year.
Chris: People who are listening to this, if they think, “I’ve got someone in my family who, I don’t know, could probably benefit from seeing Dr. Rodrigues or coming to the Parkinson’s and Movement Disorder Clinic,” not necessarily knowing what the problem is, or is not, can they come to you directly? Do they need a referral? What’s kind of the entry point? Or does it vary depending on people’s insurance plans and kind of how far along they are, and all those kinds of things?
Dr. Rodrigues: So it typically depends on the insurance plan that they have, but it typically starts with a referral to the movement’s orders clinic, and we’ll be happy to see you. Our clinic is growing and we now have four providers. So it is not only me, the physician, we have two other physicians. We have Dr. Neha Prakash and Dr. Chindhuri Selvadurai. They’re, again, movement disorder specialists, fellowship-trained to take care of Parkinson’s disease in your family. So I would be happy to see you, and they will also, and these are wonderful physicians. So I think it starts with a referral to our clinic, and then we will provide the access.
Chris: Dr. Bernardo Rodrigues, director of UConn Health’s Parkinson’s Disease and Movement Disorders Center — and we’ll put all the information on how to reach you and the clinic in the notes of this show — thank you so much for joining us.
Dr. Rodrigues: Thank you for having me here, Chris, it’s a pleasure.
Chris: That is our time for today. For Dr. Bernardo Rodrigues. I’m Chris DeFrancesco. Thank you for listening to the UConn Health Pulse. Be sure to subscribe so you can catch us next time, and please share with a friend.