The Parkinson’s Disease Foundation estimates that as many as 1 million Americans today live with Parkinson’s disease, and approximately 60,000 Americans receive the diagnosis each year, joining the estimated 7 to 10 million with Parkinson’s disease worldwide. This neurodegenerative disease remains mysterious with regards to cause and cure, but a sea change in modern treatment is combating symptoms better than ever and, according to these experts, Sarasota-Bradenton just may be the best place in the nation to live with Parkinson’s.

SRQ: What is happening in the body, whether it be a breakdown or a disconnect, when someone has Parkinson’s disease? And are we close to understanding why that happens? Dean P. Sutherland, MD, PhD, Medical Director,Neuro Challenge Foundation for Parkinson Disease: The cells that make dopamine inside the brain are the ones that degenerate foremost. There are other cells that make other neurotransmitters that also can break down but the main problem is in a place called the substantia nigra, which is deep down in the brain, and those cells become sick and stop making the proper amount of dopamine and eventually die off and don’t make anything at all. That results in this movement disorder where people have problems with slowness, stiff muscles, tremors, and the primary mode to treat that is to replace that missing dopamine. There are other variations on that and there are medications that can be used to try and help out the symptoms and replace the dopamine, but it is a progressive problem so even if you treat the symptoms people still tend to slowly get worse over time.

Is it still the case that we’re not exactly sure why this breakdown is happening? Sutherland: We know in some cases it’s genetic. There are certain proteins that are not being made properly and tend to clump up. They don’t get removed from the cell when they should and those clumps tend to make the neuron sick. And when the neurons become sick they can’t do their job making dopamine. But 95 percent of the time we don’t really know why people get it, so only 5 percent of the cases are probably genetic. The rest of them are probably something environmental. People, especially men, tend to get exposed to pesticides, herbicides, fungicides - things like that in the environment - which speaks to the fact that twice as many men get it as women and we don’t have any reason why based on sex hormones or chromosomes. We think it’s some sort of exposure, probably outside the home, in the workplace or things like that.

At what age will Parkinson’s typically present? Are changes in motor function the primary warning? Sutherland: 62 years old is the average age that people typically tend to get Parkinson’s in the United States. Before you even get the motor symptoms of tremor and stiffness and balance problems - 10-20 years prior to that - people can often have problems with their sense of smell. It goes away. It’s very, very common, and about 90 percent  of people who have Parkinson’s lose their sense of smell before they get any motor symptoms. A fair percentage of them, probably 60 percent also have problems with their stomach where they’ll have a slow stomach, Gastroparesis, where they can have significant constipation unexplained by anything else. Something like another 60 percent  have a sleep disorder, kind of like sleepwalking, called REM  [Rapid Eye Movement] behavioral disorder. You’ve heard of REM sleep where your eyes are moving back and forth, well there’s a part of your brain that shuts down the brain so you don’t walk around and hurt yourself. But with Parkinson’s, the Locus Coeruleus is not working anymore and people tend to act out their dreams and they can be vivid and loud. We often hear these stories.

There are multiple treatment modalities that work in tandem – medication and therapy. Can you tell me a little about which therapies and medications you have found to be most effective for your patients? Sutherland: The primary mode of treatment is initially the medications, and that was the approach for many, many years. We would replace people’s dopamine with Sinemet or drugs that were similar to that. But now, in the last 10 to 15 years, it looks like treating other aspects are just as important. We used to tell people, don’t take physical or speech therapy until you’re falling down or you can’t talk. Now it’s totally reversed; now we’re more preemptive. Cindy Rogers-Brunner, Med, EdD, Director of Rehabilitation and Respiratory Care Services, Doctors Hospital of Sarasota: My dissertation was on Parkinson’s and exercise and we found more than what we had hoped. What we found was that they actually improved, and we weren’t expecting that at all because Parkinson’s is a degenerative disease. We were expecting continual, gradual decline and that with exercise, it would just become slower or maybe even plateau for a while before it dropped again. But we found that they improved and then they would plateau. So exercise has really been very beneficial for these patients. There are some specialized exercise programs that they use. It’s called LSVT Loud and Big and it encourages patients to use big voices, big movements. They seem to be very small in their movements and they feel like those very small movements are normal. So you have to encourage them to think big and move big and then they can start to look more normal with their movements and sound more normal with their speech and their facial expressions. 

Physical exercise and practice is having an effect in the brain? Rogers-Brunner: We think that it has to do with just using the muscles and encouraging those big movements. They feel like they are making big movements, so there’s a perception problem. When they see themselves do things in a mirror, then they can see that they’re not moving as big as they thought they were. We also talk about their feedback – listening to their speech, playing it back to them - and then they can, with that biofeedback, understand that their movement and their speech is not as big and loud as they think it is. Sutherland: We also know that there are a couple other aspects and one is maintaining flexibility and strength of your muscles. People with Parkinson’s tend to not move around as much, so they lose muscle size and strength and joints become stiff. There are actually studies where they looked at function MRI (fMRI) studies - people exercise while getting an MRI - and you can see that while you exercise you’re actually producing dopamine in the same areas of the brain that get stimulated when you take the pills. There was a study just presented at The Movement Disorder Society back in June. They studied 3,000 patients looking at the progression of Parkinson’s over time in people that exercised. And there’s some thought in the field now that [exercise] actually slows down the brain degeneration associated with Parkinson’s. It’s not just keeping your muscles fit, it actually looks like it may have some effect on the actual brain cells. 

Is there a predictable progression that you can prepare your patients for or is it singular to each individual? Sutherland: It’s a very individual disease. You have 100 people in a room with Parkinson’s, you can have 100 different presentations of Parkinson’s, all with different combinations of medications, different aspects. Some people can’t walk very well and have more problems with balance and can’t talk very well. Other people can walk and talk pretty well with tremors. They can be highly variable; so can the progression. We do know a couple things. It looks like the people that have really bad tremors may actually have a more slowly progressive Parkinson’s than the people who start off with walking problems. In general, 95 percent of people are going to have kind of a slow progression throughout the course of 10-20 years depending on how they’re treated. A certain percentage of people have almost no progression and surprise the heck out of us, and another small percentage of people will actually get worse very rapidly.

In the face of this unpredictability, how do you prepare patients for what they are going to be facing in the future? Sutherland: You have to first confirm the diagnosis because the diagnosis is something made correctly about 75 percent of the time. There’s a test called Datscan that actually turns out to be about 90-95 percent accurate. Sometimes people have denial, so showing them that they probably do have Parkinson’s is an important part of it. Then talking to them about what their life is going to be like is also important. 20-25 years ago we used to have a much more grim outlook and prognosis. That also has flipped. We know that with rehabilitation, with physical therapy, speech therapy, occupational therapy and with medication, the prognosis for severability has gone from something like eight years up to about 20 years. It’s a big change, and it’s made a huge impact on quality of life. That’s something we try to present to them; that, yes, they have Parkinson’s, but they can have improvement and they can have some stability if they put in the effort.

How does the family and external support play a part of the equation? Rogers-Brunner: We find that the family is key to keeping the patient motivated, doing their exercises and taking their medications on time. It’s really important. We find that the spouse is very much the advocate for the patient and really very supportive. In most cases they’re a team and they’re working together. Sutherland: Another thing we see is as the disease gets worse, people don’t realize their limitations. They still see themselves as being 50 years old and not having debility. They came in through the door with a walker and they can barely walk and barely talk, but they still don’t perceive themselves as being that Parkinson’s patient. That’s hard for the spouse. The spouse often has to feel like a nagging person, cajoling people in order to get people to do things. But that’s a key component - the talks with the patient that let them realize they do have limitations and their spouse is there to be encouraging. Sometimes we even send people to marital counseling so they both understand where they’re coming from.

How do these two sides of the equation - the medication and the rehabilitation – meet?  Do you work in tandem? Rogers-Brunner: We have a referral from the physician for therapy and it can be speech therapy, physical therapy or occupational therapy depending on the patients’ needs. And as we’re working with the patient, we’re providing documentation back to the physician on a regular basis - at least monthly - so the physician knows what is going on with the patient and how they’re doing and if there are any problems. We notice if there’s been decline and we alert the physician as to what we’re seeing. 

For this tracking, how often do you prefer to see patients? Rogers-Brunner: We see them for probably a month to three times a week, put them on a program and then they would be responsible for continuing the exercise program. Insurance will pay for a session or sessions of therapy for patients [with] long-term degenerative disease problems, but they don’t pay for continuous therapy. You’ve got to set up a program for them and then set them on their way. Then as their condition changes and they need to be reevaluated, the insurance company will pay for reevaluation and change of that program and then again send them on their way. So once you start therapy, you never leave because it is a progressive degenerative disease. 

Is there a marked difference in early onset Parkinson’s besides the timing? Sutherland: Early onset or young onset Parkinson’s Disease happens before age 50 and that tends to be a little bit of a different disease for most people. They tend to not get as many cognitive problems that people get when they get older. It tends to be a little bit more slowly progressive for some people. They also tend to get some of the other side effects such as the writhing, dancing movements called dyskinesia. That’s a consequence of the medications; so the longer you’re on the medicines, the more likely that is to happen. In fact, after 10 years, virtually 100 percent of people on those medicines will have those. So if you’re 45 and you get Parkinson’s, you’re probably going to have dyskinesia down the line.  

How can you define success with a progressive and degenerative disease like this? Sutherland: There are a number of ways you could look at it. One is if somebody has regained skills or confidence in things that they had given up on before. For instance, a lot of people in the Sarasota area like to golf and we’ll have people who give up golf. After they’ve been treated properly with medications and therapy, a lot of people can go back to doing that. There are a lot of things that people will throw up as roadblocks to their own functionality. We can help reduce those roadblocks or even eliminate them and get them back to feeling like they are able to live a more normal life. Rogers-Brunner: I would have to agree with that. It’s very personal for everybody. You know what’s important to them, and if you can help them achieve whatever it is that’s important to them, then that’s success. 

 What resources are available in this area, and what would you like to see brought in? Rogers-Brunner: Sarasota is the epicenter for Parkinson’s support and everything that we do here is just amazing to me. Sutherland: It’s exploded in the last 15 to 20 years here in Sarasota. Right now, we have a number of support organizations that are available. I work for Neuro Challenge Foundation. There’s also Parkinson’s Place across town, and there’s some smaller organizations, but those are really the two main places in town where we have some sort of social support mixed with some more of the educational information. That’s really a very solid start. If you look all over the nation, we probably have the most developed Parkinson’s system in terms of a county or a region anywhere in the nation.


Dr. Dean P. Sutherland:  A graduate of Florida State University, Sutherland earned both his doctorate in neuroscience and Master’s in psychology from his alma mater before moving on to the University of Florida College of Medicine, where he received his M.D. and completed an internship in internal medicine and neurology residency. Board certified in adult neurology, Sutherland is the medical director at Neuro Challenge Foundation and director and founder of Southeastern Center for Parkinson’s Disease.

Cindy Rogers-Brunner: Joining Doctors Hospital in 2000, Rogers-Brunner serves as the Director of Rehabilitation and Respiratory Care Services. This last year, Rogers-Brunner was awarded the 2015 Frist Humanitarian Award from Doctors Hospital in recognition of her devotion to community and patient care.