Borrego Sun - Since 1949

I knocked on the door several times. No answer. Maybe I wasn't at the right place. I glanced around and then looked through the living room window. I could see into the backyard where a pretty, petite woman was pulling weeds from a flower bed. Surely this wouldn't be the imposing powerhouse chief executive I was expecting. I looked for the address again, and then she turned and caught my attention, coming through to open the door. "I'm looking for ... " I began to explain. She smiled warmly, "I'm Carrolee, please come in," and we stepped through to the backyard and sat at a small table in a pleasant patio garden. "You look a lot younger than I expected for someone who has achieved so much," I said. "That's nice of you," she said. I really meant it though.

Beck: How did you get interested in neurological diseases?

Barlow: I'm an M.D. When it was time to do my specialty training, I did endocrinology, but I still wanted to choose an area of research, so I chose to work on the brain. I figured if I'm going to do research part time and try to be a doctor, I'm going to work on something that doesn't have any real good treatment, so that's where I started. We did a lot of work in brain research and then I became a professor at the Salk Institute where my laboratory was working with models of human brain diseases. So, it started out as a research interest of mine, and then being trained as an M.D., you're used to doing something more practical, like everyday you're doing something to help a person. Science research in an academic institution is very far away from a patient. I wanted to get closer, where there was a chance to actually bring a new drug to a patient. That's when I started in the pharmaceutical industry. I started learning much more about everything it takes to make a drug and get it to a patient. I started learning the complexity of trying to get new drugs for brain diseases. Research on the brain is extremely exciting. There's so many new things we're discovering because there isn't that much already known. We understand so little that everything is an exciting discovery. We started finding things we could try in clinical trials. Then I had my own company where I'd help lots of different companies figure out how to do clinical trials and make sure the patients are being carefully taken care of. After that, I was approached by the Parkinson's Institute and Clinical Center to potentially be their new CEO. Then I met the founder (and CEO for twenty-five years,) Dr. Langston, and he is such a unique person and I was so impressed by how much the institute had accomplished in twenty-five years for people with Parkinson's disease." Among other things, Barlow told me how the institute figured out some of the most important causes of Parkinson's – from tainted heroin, a pesticide link, to links between genetics and traumatic brain injury. "They've done an enormous amount of work because they have this really unique model and I really like it. Langston is a physician who sees patients and thinks about research all day long, so he has this complete connection. That's what I have too. I could see why it worked. The researchers are all in the same building. They see the patients and the patients see them and everyone has a sense of urgency and focus. I think when people are really focused they have a much better chance at discovering new therapies. It's really a fantastic institute, so I decided, 'Yes, I'm going to do this job,' and took over about a year ago.

Beck: I can see why that would be a much more dynamic and motivating set-up. What are the earliest indications of Parkinson's?

Barlow: What the patient first notices is they just don't have the zip and zoom they used to have. When they want to go over and get the door, or go do something, they just don't feel like their body is able to. The part of the brain that controls the initiation of movement is starting to degenerate. Then you notice this tremor, usually just on one side. It's not the typical shaking you get as you age, it's very specific. It's called a pill-rolling tremor. (She showed me the movement, as if rolling a pill in one hand.) Those are kind of the first signs of Parkinson's. Out of all of the neurological diseases, Parkinson's is the one we have the most treatment for. We do have things we can do to make up for that part of the brain that's dying. You're usually relatively young when you get it, unlike a lot of other neurological diseases, like Alzheimer's. The average age of diagnosis is in your early '50s. So most people are still healthy at that part of their life and it's a very slow process. It's exciting to be able to work with people when you may have an opportunity to find something to stop the progression of the disease. Most people live with Parkinson's for 25-30 years.

Beck: What aspect of the disease is the ultimate challenge?

Barlow: It becomes so challenging to manage the medication. We do have a great medication – dopamine.

Beck: Isn't that a neurotransmitter?

Barlow: Exactly. Every part of your brain is dependent on dopamine and the part of the brain that degenerates in Parkinson's, produces all of the dopamine for a certain area. All of the sudden, these cells are not getting their dopamine and they are the cells responsible for movement. The rest of the brain is still making dopamine just fine. Neurotransmitters don't go into the blood stream and go everywhere. It's more like plugging something into a socket. There's not electricity everywhere.

Beck: So, can you get another working socket ... put it in there?

Barlow: We tried that - transplantation. But it's way more complicated than wiring the electricity in your house. You can't just mess around with your brain. It would be like trying to completely change all the electrical and plumbing in your house without disturbing any walls. So even if the rest of your brain has dopamine, this part doesn't. So, we give the patient dopamine, which causes huge amounts of it everywhere – so now they can move and are energetic again – but dopamine is very tricky. Suddenly, it's getting way too much, so another part of your brain starts having a problem. Someone who has been on it a long time may then get dyskinesia (abnormal movement). This side-effect of the medication happens because you can't target the one site; so that's the constant problem with the brain. It's a huge network of tangled neurons. You can't get anything in or out without hurting other parts."

Barlow then told me about something that can bring relief called 'deep brain stimulation' but it only works in about 30 percent of patients. A drug that can help for a while is an Monoamine Oxidase (MOA) inhibitor, as a first line of treatment, and if used in the early stages, it can relieve symptoms for about five years. The Parkinson's Institute is like the Mayo Clinic for Parkinson's patients. Barlow says it's a mistake to fear Parkinson's and decide you just don't want to know about it, because things can be done to prolong your quality of life.

Beck: So, what is the test to find out if you absolutely do have Parkinson's disease?

Barlow: You need to go to a movement disorder specialist, like the ones we have at our clinic. There's no blood test. If you have a family history, pay close attention. Are you feeling like you just can't do what you used to do, but not sure why? Think of the tremor too. There are other things you could notice - like constipation you never had before, problems with sleep suddenly, drop in blood pressure that is not typical for you. There is a drug that can buy you at least 4-5 years before having to take dopamine.

Beck: What is the name of that drug?

Barlow: The most common is called Azilect. We were the first place to understand how important azilect is for patients in early-stage Parkinson's. Another thing you can do is exercise. There's a certain kind of physical therapy that's specifically for Parkinson's to help keep you mobile, and it looks like that also helps delay the time before you have to take dopamine by a few years. When a circuit isn't completely dead but just compromised, other parts of the brain can be encouraged to step in and do a work around. Our movement disorder specialists are really good at detecting all the subtle things that happen early in Parkinson's and really good at early-stage intervention.

Beck: How do you decide someone has Parkinson's? Is it by listening to them tell you what their symptoms are then?

Barlow: Yes, and a lot of times someone in the family will have noticed things, like their voice has gotten so much softer, etc. One man who loved dancing noticed he was now stumbling and tripping, so he knew something different was happening. Fortunately, he was able to see a doctor at the Institute, who is an expert in this area. The man is just on azilect now and he's dancing again.

Beck: Is there a waiting list at the Institute?

Barlow: Sometimes it's about three months, but we're growing and hiring a few more doctors because the need is so significant.

Beck: Do you think, in your life-time, you will see people no longer getting Parkinson's disease?

Barlow: That's certainly my goal. That's why I'm at the Institute."

Barlow talked about developing better drugs and getting them to patients quicker.

"A big part of what I'm going to try to accomplish is to raise sufficient money to be able to do things in a way that's more innovative and efficient. Not the way we're currently doing it."

Beck: How do you raise money for this?

Barlow: Part of it is just getting the word out. 'Less Talk! More Walk!' is the Institute's first ever walking event. It will be held in Sunnyvale, but you can be a virtual walker by plugging into the Institute's website. You can have your own page and set it up in yours or in the name of someone else that you'd like to support. This event is occurring on April 12, 2015.

Beck: I like the idea of a walking event. I suppose you could have a dance next?

Barlow: We're thinking about one for 2016 that's going to be music-based. An interesting thing is that sometimes when people suffering symptoms of Parkinson's disease hear music, all of a sudden, it doesn't look like they have Parkinson's for a while. There's clearly something going on in the brain we'd like to take advantage of. There are parts of your brain that are able to compensate for your Parkinson's disease. If we can slow the disease by ten or twenty more years in the early stages, that makes a huge difference. Then you can take the medication, and that works great for some time. That's what we're aiming for. So you do need to find out as early as possible if you do have it. That's why a lot of research is on bio-markers. The institute is presently studying families with a history of Parkinson's. There are people with a genetic predisposition, but they never get it. Why? What is it that protected them? If we could find out what the modulator is, we might be able to make a drug that activates another gene that modifies the defective one. We're getting their DNA, collecting all sorts of information about the environment that was in common or not. We're doing all that research so we can find something to prevent it from getting started.

Beck: That's very exciting work you're doing.

Barlow: It is. I wish we had more money so we could move faster, but we're doing great. I think we're doing all the right things. We just need the money to make a difference quicker. What's really great about the Institute is every dime you donate goes directly into research and care.

Beck: Did you always want to be a doctor?

Barlow: I always was a bit of an introvert, loved to read and was very near-sighted. I was smart ...

Beck: So, you were a nerd.

Barlow: Yeah, a nerd. People would say 'you should do something,' and I loved helping people and animals. I'm a very nurturing person. I'm not afraid of blood and guts because I'm a bit of a tom-boy. So I was told 'You should be a doctor,' and I think it was the right fit for me. It's really challenging intellectually, but you also feel like you're making a difference and doing something good. That's really important for me.

Beck: How do you unwind?

Barlow: I love gardening ... as if you can't tell.

Beck: You do it well. It looks really nice.

Barlow: I love the fruit trees. I love cooking things. I want to make sure the weeds don't take over. I care about my plants and want them to be happy and look good. I'm just kind of doing my thing while my brain is relaxing, but it feels productive. I also love hiking. One year I think I hiked Alcoholic Pass twenty times in about five weeks and cleaned all of the invasive mustard off the trail. I brought my gloves on my hike and pulled it before it bloomed so I didn't have to put it in a bag. It's like gardening and hiking at the same time.

Beck: Is there a certain population that seems more susceptible to Parkinson's?

Barlow: About 10-20 percent of people with Parkinson's disease have a family history of Parkinson's, so that's a pretty significant risk. We also know people who are at an increased risk from exposures.

Beck: What type of exposures?

Barlow: Tainted heroin, paraquat (herbicide) - which is very problematic, especially if you have a genetic predisposition. Trichloroethylene (solvent) - which is what they used to clean big jet engines with. Then there's traumatic brain injury, (think boxer Muhammad Ali). If you have a genetic predisposition, concussions of any form increase your risk of Parkinson's. These are all discoveries from the Institute. One of the good things about the Institute is that once they've discovered these things, it really makes an impact on how they're managed. We don't really know why, but the incidence of Parkinson's is increasing. There's something in the environment.

Beck: There are so many toxic things in our environment.

Barlow: It could be any number of things. The environment is infinite ... so you just kind of have to live your life and keep your fingers crossed. The most important thing for us, is to focus our efforts on finding new treatments for anyone who has Parkinson's and to make sure they're getting the highest quality of care, so they can have a great life. Parkinson's doesn't have to ruin your life."

The Parkinson's Institute is America's only independent non-profit organization that provides basic and clinical research, clinical trials and patient care for Parkinson's disease and related neurological movement disorders, all under one roof. Their mission is to find the causes of Parkinson's disease, provide first-class patient care and discover a cure.