Dan Keller 0:02
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
Of the 1 million people living with Parkinson's disease in the United States, about 4% receive a diagnosis before the age of 50, considered young-onset Parkinson's disease, or YOPD. Symptoms are often similar to those with late-onset PD, but there are slight differences in underlying genetic risk factors, response to drugs, and rates of progression. So, research is critical to understanding this form of the disease, its treatment, and course. This episode is sponsored by Biogen's Luma Study. For more information about Luma, visit lumastudy.com.
This episode will feature one person's experience with young-onset Parkinson's disease. Our guest, Israel Robledo, is a trained Parkinson's Foundation research advocate. Such advocates partner with researchers to design trials, provide recommendations from a patient perspective, and report study results to the Parkinson's community. They are essentially a voice of the community in all stages of the research study. Israel has been living with YOPD for about 17 years. I first asked him to give us a little background on his situation and how he's doing.
Israel Robledo 2:10
I was diagnosed with Parkinson's at 42 in 2007 with no prior history; I didn't know anything about it. I'm a school teacher, still teaching to this day—a 29-year career—but I was diagnosed within a week of going to the doctor. It took me five years to get to the doctor because the symptoms would come and go, but that's how it started with the diagnosis. For me, it was an issue of where do I go from this point forward? I had two girls at home who still needed to get to college, and my question was, "When does the house get paid off?" So, financially, that was a business burden. And then what happened was I went into a deep depression not too long after diagnosis, which lasted about nine months.
Dan Keller 3:00
That's quite a while. How did that manifest, or more importantly, how did you get over it?
Israel Robledo 3:08
It was a long time, and I agree, because what would happen was my wife would say, "You need to talk to so-and-so, they have such a good outlook on life," or "Look at so-and-so," and I would say, "I don't care, that's not what I'm looking at." I would tell her, "I can't do this. This is not who I wanted to be at 42." So slowly but surely, it just got worse and worse and worse, and it got to a point where I realized that I was feeling sorry for myself. I was looking inward, just mired in that pity party that nobody was attending.
I remember one Sunday morning where I literally fell to the ground. I thought, "You know what? I have a job, I have family, I have friends, I have church, I have insurance—I have all of these things that need to be had in order to have, I think, a good quality of life." And that's the day I thought, "I need to look outward. I need to be able to see and help others, because I'm okay." And it was a big day. I've often said that from that day forward I haven't looked back, because if I'm helping others, I'm not worried about me.
Dan Keller 4:16
Talking with several movement disorders neurologists, they say one of the biggest things that they have to convince patients of is this is an aspect of life; it is not your entire life.
Israel Robledo 4:30
That's very true. One thing that comes to mind is when we go to movement disorder specialists, they're so busy, there are so few of them that people say, "Well, how do you keep track of what you're doing?" So a lot of it has to do with how you react to the medication, or what you do as far as tweaking the medications. I'm not saying changing the timing of the medication, but there are long stretches of time between visits that make it sometimes lonely, and you're like, "I'm not sure I'm doing the right thing." But staying positive as much as you can makes a big difference with medications as well.
Dan Keller 5:03
Can you talk about your experience at the Learning Institute, how you became an advocate, and what that involves these days?
Israel Robledo 5:12
The Learning Institute was one of those serendipitous things. I was online after I'd gone to Houston for my second diagnosis and thought, "You know what, I need to get involved with clinical trials." I was looking online, and the Parkinson's Foundation had this Clinical Research Learning Institute, and I thought, "Oh my gosh, that's exactly what I want to be able to do—to have some training and to be able to talk to people." Because I got involved in clinical trials in Houston, and also in Bethesda, Maryland, and I kept thinking we need more people to do this, because historically medications and treatments improve because of people participating.
What happened was I applied, and I was overjoyed to get in. The Parkinson's Foundation is very well respected from what I had read and from talking to people, so I think I was one of 32 at the time in that first class. The quality of the training, the faculty, the follow-up—everything was so well designed and so well put together for us to be able to take our experience from the Learning Institute and use it as we moved out. Having the Parkinson's Foundation label allowed us to say, "I'm an advocate for clinical trials, and these people are who back us up as patients and as participants." So that was huge.
My focus was on clinical trials, and then I kept talking to people and they'd say, "I really have an interest, but I can't afford to get there," or "Medications are too expensive." So I dovetailed a bit into saying, "Okay, let's talk about clinical trials, but let's see what we can do to help you have a good quality of life. Let's get you to a movement disorder specialist. Let's get you to where they know what they're doing, so that you can have the best quality of life possible."
That in itself helped me to move from the Parkinson's Foundation to the World Parkinson's Congress, talking to people around the world who were saying, "I don't even have medications, I don't have access to any of this." Then eventually, within the last four years, I joined the Michael J. Fox Foundation Patient Council, which has also put us on the map as far as some changes that are going on within Congress. What we're looking at is hoping to end Parkinson's as we see it. I mean, there's a lot of good things coming out of research, but it has come as a result of foundations working together. So that's what I'm most proud of.
Dan Keller 7:41
The Parkinson's Foundation Learning Institute is about a three-day course. Many people are eligible to join, but how much of a commitment or how onerous is it to go through this thing? You come out knowing a lot about clinical trials and can even help design them and write up the consent forms and all that.
Israel Robledo 8:02
Yes, absolutely. It was a commitment. I'm not sure that I had a second thought about any of it, because when I showed my wife, she knew that I wanted to help and do things. It was very well designed; it was like a micro college course. There were no punches pulled. It was about the science, how trials are designed, the history of trials, and moving forward. Talk about taking notes!
Interestingly enough, that was the first time in my teaching career that I sat in a room full of people with Parkinson's, and no one looked at each other with a side eye like, "Oh my gosh, you're shaking," or "Your alarm's going off." That was the first time I felt like a normal person in a room full of people with Parkinson's. That was 17 years ago—a long time ago.
Dan Keller 8:55
Have you been going out and doing speaking engagements on a regular basis?
Israel Robledo 9:01
What has happened is, with the Parkinson's Action Network, which has now folded into the Michael J. Fox Foundation, I've been able to talk directly to senators and congressmen and testify—not in person, but giving written testimony. The other interesting organization, Dan, is PCORI, the Patient-Centered Outcomes Research Institute, which at the heart of every trial has the patient's voice and what they need to be able to have success. So PCORI was one organization where I would go out and talk to groups and let them know that funding was available—not only for Parkinson's but other disease groups or other conditions—but Parkinson's was the main topic.
Dan Keller 9:50
When you yourself participated in a clinical trial, how much help was your healthcare team in directing you on what to expect, or giving you advice on whether to do it or not? Did you find it valuable getting input from your regular healthcare team?
Israel Robledo 10:07
Yes, absolutely. Especially when I was in Houston. When I went in, the doctor said, "Would you be interested in helping out with any of these trials?" And that's what I really enjoyed—the conversation. They asked for help, rather than saying, "We need you to volunteer." So it was a give-and-take. I got involved with one- or two-visit type trials.
I'm in Midland, so we're 500 miles away from Houston. To say that I could go out there every two or three months, as some of the trials are designed, I couldn't. That's one thing I remember my wife saying: "I wish that you could be more involved, but time and distance just don't allow it." But yes, what happens with getting involved in clinical trials involves my movement disorder specialist contacting my neurologist, staying in contact, and saying, "This is something that we're working on, and it won't impact the medication that he's on." Because some trials do require, perhaps, someone who has not started on medication, so that was a give-and-take. It was surprising because I had never thought of it like, "Well, you're involved in a clinical trial, but then you're like, 'Oh, wait a minute, I have to have these medications that are allowing me to have a good quality of life. What if they can't offer them? What could happen?'" So there is a mutual respect there from primary provider to movement disorder specialist.
Dan Keller 11:25
Generally, when people participate in clinical trials in any disease area, they're always told, "Don't expect that this is going to be necessarily beneficial to you," but people do it anyway. So, what are some of the pros you get out of it by participating, and I guess, what are some of the cons or the things that are maybe impediments?
Israel Robledo 11:46
The pros for me were just to say I was part of it—that would be one, you know, just to say I participated in that. Because I would hear a lot of people say, "My grandmother or my mom or my dad were involved in the first trials in Parkinson's, they had the disease, and they dealt with it." That was one thing. The other was, what if the medication or what if this compound does have a positive benefit on me? That'd be great.
Then there is that con-type question that you have: was it going to affect me negatively? But in my case, to be honest, it was just the time and cost to participate in any trial that needed more than two or three visits a year; that was very prohibitive for me. If you live in a metropolitan area, that's a very good opportunity to participate.
Dan Keller 12:38
I participated as a healthy control in a trial in Philadelphia. It was a year long; you had to go in every quarter, every three months, and do some things every two weeks at home. By the end, it was getting a little old, but when I came out of it, and all along, I was still gratified to be in it.
Israel Robledo 12:56
There's something about just providing the help that you're able to give, yes. And in healthy controls, my goodness, yes—I've always said they can't find a cure without us, and it's going to take all of us. Because some of the research that's coming out, yes, they've got the controls, like how you participated, which gives us a lot of information. Sometimes it gives even more information than a person with a disease, because you haven't had the opportunity to develop it, which is good.
Dan Keller 13:26
What kind of message of hope or what kind of advice would you give to others who may also have early-onset Parkinson's?
Israel Robledo 13:36
My message would come from what I experienced coming to terms with the disease. As I've often said, once I came to terms with the diagnosis, it's not going to change you on a daily basis; it's not going to creep up on you. The best thing that I would say to people is get to the best quality of care possible—whether it's a neurologist whom you trust very much or, preferably, a movement disorder specialist—and know that a diagnosis is not the end of the world.
As I shared earlier, I was in a bad spot, but once I realized that people are there working so that we are able to have a good quality of life, that says a lot about whom I've met through the years. Many, many amazing people are working to end this disease. But the message of hope would be: stay focused, take care of yourself, stay active. If you're running into a mental health issue, seek help, because we all need to get through this together. It's doable. I'm blessed in many ways because of the people who have been put in my life that allowed me to have a very good quality of life, and I'm proud to say that in 29 years of teaching, I work without accommodations. So something good has come out of it, and I'm still going.
Dan Keller 15:01
And what's your age now?
Israel Robledo 15:03
I'm 58. I'll be 59 in one month.
Dan Keller 15:07
Have we missed anything you think it's important to add?
Israel Robledo 15:11
I think you're very good at this. You've done this a few times; I've never done that. You've covered everything in my life. Let's come full circle. This is where I started with the Parkinson's Foundation, and to be able to share what I've been able to help with is an honor. You guys are doing an amazing job.
Dan Keller 15:31
I appreciate it. Thanks a lot. For an extensive list of resources on YOPD, search our website at parkinson.org for "young-onset" with a hyphen between the words. You'll find links to podcasts, news articles, blog posts, and other resources discussing characteristics of the disease, employment considerations, maintaining relationships, financial planning, and more.
If, like Israel, you'd like to get involved in promoting Parkinson's research as a research advocate, visit our website at parkinson.org/research. You will find a few ways to get involved in research and how to learn more about becoming a research advocate. As always, our helpline specialists can provide information and resources about young-onset Parkinson's disease. Just call 1-800-4PD-INFO.
If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, rate, and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636.
This episode is sponsored by Biogen's Luma Study. For more information about Luma, visit lumastudy.com—that's L-U-M-A-study.com. Thank you for listening. Thank you.
