Returning guests, patient Christina Korines and John Lehr, CEO of the Parkinson’s Foundation, discuss statistics, women and Parkinson’s Disease (PD), genetics and PD, and the use of medical cannabis for those with PD.
Christina Korines, 33 years old, has Young Onset Parkinson’s disease. She showed her first symptom when at 22, which started with a tremor in her foot and soon after progressed into a very obvious limp. Christina was diagnosed in October 2017 after seeing 5 neurologists. Many admitted they weren’t sure of her diagnosis but some said that she could be one of the youngest people to have Parkinson’s. Today, Christina manages her symptoms with a combination of medications taken multiple times throughout the day and a rigorous exercise routine of boxing.
John L. Lehr, Chief Executive Officer of Parkinson’s Foundation, brings more than two decades of nonprofit fundraising and management experience, with a strong focus in the voluntary healthcare and medical research sectors. Before joining the foundation, John served as President of Orr Associates, Inc. (OAI), a consulting firm that serves the nonprofit sector. At OAI, John was responsible for daily operations of the firm, as well as management of leading clients including Georgetown University, MedStar Health and Special Olympics. Previously, John also served as Chief Executive Officer of CureSearch for Children’s Cancer, a national research and advocacy organization. John earned his B.A. and M.A. in History from Villanova University. From 1990-1991, he served as a Peace Corps Volunteer in Sri Lanka where he led rural business development efforts and taught English.
Neal Howard: Hello and welcome to the program. I’m your host Neal Howard here on Health Professional Radio, thanks for joining us once again. Today we’re going to have a conversation with returning guest Christina Korines and Mr. John Lehr, CEO of the Parkinson’s Foundation. They’re returning on the program to talk with us about some statistics dealing with Parkinson’s Disease and women and a little bit about medical cannabis for those dealing with Parkinson’s. Welcome back to the program both Christina and John, thank you for returning.
John Lehr: Thanks Neal, we’re really grateful for you taking the time to talk with us.
Neal: Great. Well for our listeners who may not be familiar with you when you were here before Christina, give us a bit of background about yourself.
Christina Korines: So I’m Christina, I am 34 and I’ve been living with young onset Parkinson’s since I was 23 years old.
Neal: And John I did mention that you’re President and CEO of the Parkinson’s foundation, a bit of your background if you would.
John: Sure. So I’ve been at the Parkinson’s Foundation for about two and a half years and I’ve been a longtime healthcare, in the healthcare world in the last number of years running disease … organizations like the Parkinson’s Foundation.
Neal: Glad that both of you are joining us on the program to talk about Parkinson’s specifically about Parkinson’s and women. Christina is there an unmet need when it comes to Parkinson’s care awareness, support especially women who may be dealing with early onset Parkinson’s such as yourself or young onset Parkinson’s.
Christina: It’s funny you mentioned that. My doctor always says that he loves having me as a patient because I’m so young and I’m still dealing with hormones and monthly changes and he says “That totally affects your symptoms.” So I think having a focus on women and what they go through day to day with the month it’s definitely something that needs to be studied and yeah a lot of focus needs to do with everybody I think with Parkinson’s specifically anybody who’s suffering from the disease and I was really lucky to have found the Foundation because they really embrace you and steer you in the right direction once you get this diagnosis.
Neal: When were you diagnosed?
Christina: October of 2017.
Neal: And you’re 34 now?
Christina: Yes, exactly but I was 22 when my symptoms started.
Neal: What were some of those symptoms? I mean were you just a normal active 22 year old doing what you do, athletics?
Christina: So I had just graduated from college and I had started getting a job. I was trying to become a teacher and I remember I was cutting with scissors the first time that I noticed my tremor in my hand and I just couldn’t get the scissors to function and I knew something was wrong. I had a limp, I had a tremor in my leg, I would drag my foot, I would literally destroy pairs of shoes because I would drag my toes so much and it’s just basically any normal symptom you would see in an older person, I started demonstrating as well.
Neal: John is this something rare? Are we raising awareness for something that we’re not seeing a lot of yet it exists out there on more than we know?
John: Yeah, I mean yes it is it is unusual for somebody like Christina to get diagnosed at an early age and typically as a disease, people who are in their 60s and beyond. The average age of diagnosis is usually around in the mid sixties so Christina is very unusual in the sense that she is both a woman because women tend to be diagnosed less than men and also because she’s so young but in many ways as Christina just said it’s so interesting because she’s of a certain age that she still is experiencing all the things that you would expect of a young woman and so that may be a key to our understanding and unlocking of Parkinson’s because as I mentioned earlier more men than women get Parkinson’s so there may be some a protective nature of hormones in women different from men so we have been working on women in PD initiatives for the last two years and a whole research agenda that we’re going to take through to try and understand the differences between men and women but it’s Christy Christina said, there are so many things that when you have young onset that you have to consider differently than you have adult onset and then also when you’re a woman of reproductive age. So there’s a whole series of issues that we’re going to be looking at related to women in PD in the coming years.
Neal: What about the genetic aspects of Parkinson’s? I mean you’re the mother of a couple of daughters, you’re married to your highschool sweetheart and just understands so things are moving as John said, as you would expect a young woman on the go, doing what you do. Asking how you find the time to bring awareness and do outreach work kind of a goofy question but how do you manage family life along with this progressive disease?
Christina: Everybody always ask me, they go “How do you do it?” And I said that any mother in my position would do the same thing that I don’t think I’m doing anything special. I have these two little girls who look at me and they still want to go for bike rides, they still want to play in the park and you just get up and you do it and I really I thank God for them and I think that they’re the reason that I get up and do everything. They’re my motivation, they’re my reason to get out of bed every day and 0just like any other person, you have to. You don’t feel well but you have two kids who need you and they depend on you so you just get up and do it.
Neal: Do you worry about the genetic aspect of Parkinson’s with your daughters?
Christina: Yes, I do. I tend to worry about everything but that especially but I’ve spoken with both of their pediatricians and I said “Should we consider genetic testing?” and everyone of their doctors in the office said ‘No’ that they don’t think that we should do it so I trust them completely and I do worry about it but from what I gather young onset doesn’t have that much to do with genes. That it’s more, they don’t really know what it stems from and according to my family we don’t have any family history that we’re aware of.
Neal: John would you say that because young onset is so rare, that’s the reason that her physicians chose not to do any genetic testing? And is genetic testing something that the foundation and others who are, who may think they’re dealing with the genetics of Parkinson’s are I guess counsels to undergo?
John: Yeah, it’s a really good question and I think it’s a question that’s often best answered between the individual and their physician because each circumstance is different. We always say that in Parkinson’s, there’s no two individuals that have the same course of disease. Christina is very unusual because of her early onset but there are folks who do have a familial or genetic connection to the disease. There are about 20 different genes that are implicated in the diagnosis of Parkinson’s that we know up to date. In fact you could have all 20 genes and not get the disease so there are two genes in particular that are more highly predictive of a diagnosis of Parkinson’s Disease that we’re aware of now and yet those two genes have affects a very small percentage of the population so that tells us that there in some cases there is a genetic component to this disease but there’s also an environmental component and I think one of the things we’re trying to figure out is what’s the interplay between the two and so within the last year we’ve launched a genetics initiative PD GENEration to begin providing free genetic testing and counseling at a limited number of sites in the United States where we would start six sites and then we’re going to expand but mindful that that is only for people who are already diagnosed with Parkinson’s, not anybody who might be curious about whether or not they have it. Just people who have the disease already and then we’ll bank that information in combination with their clinical data and see if we can determine predictive trends for both diagnosis and for prognosis.
Neal: When it comes to the medical marijuana space or the cannabis space as it relates to the treatment of Parkinson’s and related symptoms, John what is the foundation’s position on medical marijuana? And Christina is that something that you use or is it something that you may consider in the future or not? John?
John: Yes, so Neal it’s really a great question. There are now more than thirty states that allow for medical marijuana in the United States and another ten that allow for recreational use and so many people with Parkinson’s are looking to medical cannabis to help them with their non-motor symptoms. Things like pain, anxiety, depression, helping them sleep at night – so our position is that we need to know a lot more about medical cannabis. We need to know more about the plant, both the psycho reactive and the non-psycho reactive components of the disease because you can distill it down into THC, that’s the psycho reactive component and CBD which is the non psycho reactive component and there’s anecdotal evidence, there’s even scientific evidence that one or both or in a combination can be positive but we don’t have good enough information right now for the foundation to take a position and so we’ve launched a medical cannabis initiative. We’re going to be studying the issue, our paramount issue is to make sure that we’re giving accurate information to people so that they in combination with the physician can make the best decision about whether or not to use medical cannabis. We have other things to think about in the PD population because they’re already taking many other medications for their illness and we want to make sure that medical cannabis doesn’t complicate their medical regimen already. So it’s a new and interesting avenue for potential therapy but we have a lot of work to do before we come up with a solid recommendation.
Neal: Christina in conjunction or in lieu of some of the medications that you may be taking now, is medical cannabis something that you and your physician may consider in the future, if not already?
Christina: Yes, I actually do take it.
Christina: I take Levodopa three times a day, every five hours and I use, I call it emergency cannabis when the pain is much or finding what people don’t know a lot about is when you’re trying to get comfortable in bed, it’s very very difficult so before I go to sleep I tend to use it as well.
Neal: Well I thank you both for coming on the program once again. John, a website that we can go to and our listeners can get some more information the Parkinson’s Foundation. And Christina, if you’ve got a website that you’re involved with, give us that site as well.
John: So Neal our website is parkinson.org so no apostrophe, no S and we also have an 800 number, our helpline for anybody to call that’s 800-4PD-INFO.
Neal: It’s been a pleasure as always.
John: Thank you very much Neal, looking forward to talking with you again.
Christina: Thank you.
Neal: You’ve been listening the Health Professional Radio I’m your host Neal Howard. Transcripts and audio of this program are available at hpr.fm and healthprofessionalradio.com.au