“Fireside Chat with Soania Mathur, MD” – Discussion Notes

“Fireside Chat with Soania Mathur, MD” – Discussion Notes

The Parkinson Association of Northern California (PANC) hosted a day-long conference on Parkinson’s disease (PD). One of the talks was a fireside chat on living with Parkinson’s. The moderator was Suketu Khandhar, MD, movement disorder specialist at Kaiser Permanente. The keynote speaker was Soania Mathur, MD, who was diagnosed with Parkinson’s at 28 years old and has been living with Parkinson’s for 21 years. 

They discussed a variety of topics, including: living with Parkinson’s, managing the symptoms of PD (through medication, deep brain stimulation, and exercise), asking for help, and getting more involved with clinical research.

Here’s an interesting answer by Dr. Mathur to one of Dr. Khandhar’s questions:

Dr. Khandhar: Many people have a difficult time asking for help. What suggestions do you have for someone who knows they need to ask for help, but aren’t the type who feels comfortable asking?

Dr. Mathur: This is going to be an answer that I know is the right thing to say, but I don’t necessarily follow it myself because I’m terrible at asking for help. It’s not that I feel asking for help is a weakness, because it’s not. It’s actually a smart thing to do, to try and navigate the things you need to get done while using the resources around you. That means having people help you. 

For myself, I always feel like I am “losing” a part to the disease if I ask for help, and that’s just something I have to work on. As this disease progresses, so does our need for introspection. I would say, I’ve definitely noticed from a care partner or caregiver’s perspective that there is a sense of helplessness on their part; they can’t do anything to stop the progression of this disease. 

When you as a patient allow your caregiver to help you, that’s a feeling of empowerment for them as well. You’re giving them an opportunity to do something for you, and that makes them feel good.

Along the lines of this fireside chat with Dr. Mathur, Stanford Parkinson’s Community Outreach has a lot of resources on living with Parkinson’s here.

In particular, you might be interested in reading more about how Dr. Mathur and others live with PD from blogs and podcasts here.

Plus, Dr. Mathur talks about the difficulty in finding PD exercise classes appropriate for young onset PD vs. regular-onset PD.  Check out our webpages of PD exercise videos and live (scheduled) virtual PD exercise classes.  We are confident you can find a video or class appropriate for you here and here.

I listened to this chat and am sharing a summary of the talk below. We’ve been told that eventually the links to the conference talks will be available online at the PANC website. For the next two months, only conference registrants can view the recordings.

– August Besser

“Fireside Chat with Soania Mathur, MD” – Discussion Notes

Speakers: Dr. Suketu Khandhar and Dr. Soania Mathur

Conference host: Parkinson Association of Northern California

October 24, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

Dr. Suketu Khandhar: Thank you very much for joining us over Zoom, Dr. Mathur, all the way from Toronto. 

Dr. Soania Mathur: It’s my pleasure. Good to see you again, Dr. Khandhar. 

Dr. Khandhar: Today we’re going to be asking you a lot of questions, as someone living with Young Onset Parkinson’s. We at the Parkinson Association thought it was best to ask our Young Onset Support Group to ask questions that we could then, of course, ask you! 

Dr. Khandhar: Without further ado, let’s begin. When did you share your diagnosis with your family? Or your workplace? And how did it affect your work? What went into the decision to stopping work?

Dr. Mathur: Yeah, the question of disclosure is an interesting one, isn’t it? It’s something that’s really individual for everyone. For me, I started off telling my closest family. A couple of sisters-in-laws and my husband were the first to find out about my diagnosis because I needed the support. 

But it actually took me about a decade to disclose to my wider social circle and friends, my extended social circle. And that for me was for a couple of reasons: One, because I hadn’t really come to a place of emotional acceptance about my diagnosis. It was really hard for me to accept that at age 28, I was diagnosed with a progressive neurodegenerative disease. And I also didn’t want to be perceived in the workplace as being less capable. Unfortunately, there was at that time, and still today, a bit of a social stigma about being diagnosed with Parkinson’s when there should not be. I felt that my patients wouldn’t trust my opinions or my work as much as they had in the past. 

For those reasons I held off for a while, but it got to the point where I couldn’t hide my symptoms anymore. It was expending too much of my energy trying to hide it rather than just coming clean and discussing my illness with other people. 

Dr. Khandhar: For the audience members who were unaware, you were finishing your residency as a medical doctor when you were diagnosed. Those long days, those long weeks, how were you able to navigate without telling anyone at the workplace that you were dealing with Parkinson’s? 

Dr. Mathur: Well actually, I was diagnosed right as I finished my residency and starting my family practice and expecting my first child, so it wasn’t the most convenient time to get a diagnosis. But the first few years of the medical practice, as you can understand, are busy times. I was starting my new medical practice, I had the first of my three daughters, and building a new house. And those things really kept me busy. But it got to the point where I really wasn’t balancing it very well. As you know also, medicine really consumes your life; there isn’t a “part-time” medical practice. And being a mother was and is my passion, I really wanted to put 110% into that. 

So, what really started to suffer was my health. My self-care was non-existent. It got to the point where one of the movement disorders specialists said to me, “Do you want to walk out of your office at the end of the day, or do you want to crawl out? It’s up to you, but you can’t continue on this path of trying to do everything while neglecting your health in the process.” That’s what led me to stop working at about 10 to 13 years into my diagnosis. 

Dr. Khandhar: That actually leads me to my next question. How did you balance working, having Parkinson’s, and having a family all at the same time? After your diagnosis, you still worked for a decade. 

Dr. Mathur: How did I do it? I didn’t do it very well (*laughs*). As I mentioned, it’s just so hard for me to find the time for self-care, which is really, really vital when it comes to managing Parkinson’s. I was burning the candle at both ends, trying to fit everything in: trying to be the best doctor I could, the best mother, the best wife I could be. And really neglected myself in the process. So, it wasn’t really easy to do. I struggled with that balance, like I’m sure a lot of other people do. I tell people that they’re supposed to prioritize themselves, it’s vital in order to live well with this disease. 

Dr. Khandhar: Which one Parkinson’s symptom bothers you the most? What helps you deal with it?

Dr. Mathur: That’s a great question. As we know, there are motor and non-motor symptoms of Parkinson’s disease. If you poll people in the community, non-motor symptoms seem to be the most bothersome when it comes to affecting the quality of your life. For me, my quality of life is most affected by the off-periods I experienced, which can be unpredictable and sporadic. They can last a few minutes, or they can last an hour or two. And that’s basically when my medications stopped working, so I get very stiff and tremulous, I get anxiety. Those off periods are the worst for me. 

What I found is very helpful is being in a routine: making sure to take my medication at the specified times, that I exercise regularly (I find if I don’t get exercise, my off periods are worse). If I don’t sleep well, my off periods are worse. Looking at the variables that I can control, like taking my medications and controlling my lifestyle issues, if I can optimize them, they do help control those off periods. 

Dr. Khandhar: You know, you being right there on the sidelines of what’s new and innovative of Parkinson’s, seeing as you’re on the board of directors of the David Phinney Foundation, what new medications or treatments excite you the most or do you see as the most promising for people with PD? 

Dr. Mathur: That’s a great question, and one I get asked a lot. What I would say, actually, is that it’s not so much the medication as the direction of research I’m most excited about. When I first started in this community over 20 years ago, the talk was all about dopamine: how to replace the dopamine, how to get the dopamine where it needs to be in order to relieve symptoms. 

Now, the research landscape is so much more. We don’t talk about dopamine anymore. We look at Parkinson’s as a whole-body disease, not just as a motor illness. Our understanding of the disease is increasing, and that’s what excites me the most! We really can’t cure what we don’t know. We need to think outside of the box and not have our blinders on and say, “This is all about dopamine, this is what we have to do.” Looking at Parkinson’s as a whole-body disease and how it affects patients (in terms of their quality of life). 

And also searching for that biomarker. A biomarker, as you know, is an objective marker of this disease. It’s like your glucometer checks for diabetes or like your blood pressure checks for hypertension. That allows your physician to manage your disease based on an objective reading as opposed to what they see when you’re in the office. That point of evaluation doesn’t really reflect how you are in your own life. It’s also a very subjective thing in you relaying your symptoms to your physician. I think finding an objective marker is what I’m really excited about. I think that’s what’s going to move us forward in clinical management, where your doctor has something substantial to look at. If we know that a drug lowers some sort of marker in our system, that can really propel us in the right way for research. 

There are a lot of drugs coming down the pipeline that are either disease-modifying or treating symptoms, and those drugs are exciting. But it’s really the direction and our view of Parkinson’s and the fundamentals that excite me. 

Dr. Khandhar: Now that we’re on the topic of treatment, as someone who is living with Young Onset PD, would you advocate for starting levodopa early? And, on top of that, would you advocate for considering deep brain stimulation early?

Dr. Mathur: Whenever I look at changing a treatment, either in myself or in other people in my community, the one sort of thing I hold true to is quality of life. Because until there’s a cure, there is only quality of life and maximizing your quality of life. So, any treatment changes I make on my own or that I see for friends of mine, or other people in the PD community, I always ask that question: “How’s your quality of life?” If your quality of life is good, then just leave it as it is. If you’ve started on a medication that isn’t levodopa, and you’re fine with that, great! But if you get to the point where your symptoms are impinging on what your life experience should be, that’s the time to make a change. Levodopa is the gold standard that we compare other medications to. It’s been that way for well over 50 years now, and unfortunately, we have the same gold-standard drug now that we did then. Levodopa works really well to control symptoms. There was a time that we thought starting of your dopamine replacement progressed the disease faster, because it was found that people needed more and more of it to manage their symptoms. 

We now know that that’s really not the case; that your disease is worsening because it is a progressive illness, and you’re having to take more medication just to manage increasing symptoms. Because of that, I don’t think there is any reason to hold off when it comes to dopamine replacement. 

Dr. Khandhar: So, what about deep brain stimulation?

Dr. Mathur: Deep brain stimulation, again, is about quality of life. They’ve been asking me to do deep brain stimulation for quite a while now, but I keep holding off because I feel my quality of life is good based on what I’m treating myself with now. 

But deep brain stimulation in the younger population has been supported now by a couple of studies. One came out in 2014 about early stimulation, where they used deep brain stimulation earlier in the course of the disease versus just staying on medication, and they found there were less motor complications, better quality of life, and less of a need for medication in to the group that went early-deep brain stimulation compared to the medication group. Another study, I think it was a pilot study, came out early this summer that showed very similar results: early deep brain stimulation resulted in fewer motor complications and less likely to need a lot of medications to control their symptoms. 

I guess my answer would be, science seems to be starting to support that this may potentially be helpful. If these scientific studies seem to be showing that deep brain stimulation is actually slowing the progression of the disease, then my answer would be different. It’s basically up to you to look at your quality of life and decide if you need more medications, or to go the deep brain stimulation route. It’s not a simple decision, and it needs to be an individual one. 

Dr. Khandhar: I appreciate you being candid about your own thoughts on deep brain stimulation for yourself. That being said, I actually wanted to ask another question about exercise. This question again comes from the Young Onset support group: “I’ve noticed that the exercise programs for Parkinson’s are available in my area and are geared towards the populations that are most affected by Parkinson’s (who are mostly retired). The classes are scheduled during my work hours, and not quite at the intensity that is recommended for me. Have you faced this challenge, and how did you address it?”

Dr. Mathur: Exercise; that’s everyone’s favorite topic. Some love it, some don’t like it very much, but exercise is really the most important thing that you can do as a person with Parkinson’s disease if you want to optimize your symptoms and your life experience. Exercise is that important. For myself, I agree.

I think it’s difficult to navigate some of the exercise classes because the vast majority of people are not Young Onset Parkinson’s patients. The vast majority are older people in the community. Exercise classes are geared towards the age group. The important thing that I’ve found for myself, and you have to look at yourself a lot- I like exercise, I like to exercise, but I don’t love exercise. Some people crave to go for a run, but that’s not me. So, you have to find something that you’re interested in and that you can do on a daily basis; something you can maintain. Because there’s no point in starting a class if you’re not going to maintain it. It’s consistency that’s most important. So, for me I find that I can’t really go out of the house; if I have to get out and drive somewhere, I won’t go. You have to find your own limitations. 

Accountability is really important to me, it’s what drives me: if I have to face somebody, and say I did or did not exercise. Initially, I had a personal trainer come to my house to motivate me to keep going with my regular exercise routine. Now, I “graduated” to where I’ve worked it into my daily schedule: it’s the first thing I do every morning, because I know I won’t do it later on. 

When I exercise at home, I do Pilates, yoga, lift weights, walk the dog, and other things like that that I enjoy and I do them with consistency.

Dr. Khandhar: Do you ever involve your family in your exercise routine? And when you’re at home, are you uses things like Zoom for your workouts (particularly during this pandemic)?

Dr. Mathur: I do involve my family to some extent, but I prefer to exercise on my own, particularly at 5:30 in the morning since it’s quiet! No one really wants to get up with me at that time. As a family, we do go on hikes or bike rides or things like that, which are enjoyable when the weather is good. But we can’t do that the whole year round in Canada, as opposed to where you are. Zoom is a great way to connect, particularly during this pandemic. 

I think the lack of an ability for people to travel, to do their exercises classes, their physiotherapy, or massage therapy has really taken its toll on people with Parkinson’s disease, especially the lack of socialization. The socialization of exercise classes is probably almost as important as the exercise itself; that feeling of being in a group and belonging, and the emotional support that comes with being in a group of like-minded people. Zoom is excellent in that regard. We don’t know how long this isolation and restriction will last, in terms of activities, so I think it’s important to try a few classes out and see what works best for you. 

Dr. Khandhar: That’s what I tell my patients as well. Although there are personal trainers and a wide variety of exercise classes available, it’s important that the patient picks the best one for them that is compliant with them and fits their personality. 

Dr. Mathur: Absolutely. It can be dancing, Tai Chi, yoga, kettle bells, or Pilates. Walking is also a great way to get exercise. Whatever is within your capacity to do and maintain, I think the regularity of it is what’s most important. 

Dr. Khandhar: Another question, and it may be a little difficult to answer. Many people have a difficult time asking for help. What suggestions do you have for someone who knows they need to ask for help, but aren’t the type who feels comfortable asking?

Dr. Mathur: This is going to be an answer that I know is the right thing to say, but I don’t necessarily follow it myself because I’m terrible at asking for help. It’s not that I feel asking for help is a weakness, because it’s not. It’s actually a smart thing to do, to try and navigate the things you need to get done while using the resources around you. That means having people help you. 

For myself, I always feel like I am “losing” a part to the disease if I ask for help, and that’s just something I have to work on. As this disease progresses, so does our need for introspection. I would say, I’ve definitely noticed from a care partner or caregiver’s perspective that there is a sense of helplessness on their part; they can’t do anything to stop the progression of this disease. 

When you as a patient allow your caregiver to help you, that’s a feeling of empowerment for them as well. You’re giving them an opportunity to do something for you, and that makes them feel good. 

Dr. Khandhar: Along that line, you wrote two children’s books on Parkinson’s disease. One geared towards toddlers, and one geared towards family. What inspired you to write a children’s book?

Dr. Mathur: It was my children that led me to write those books. I love children’s books, I collected a bunch of them when my girls were younger, and reading was a big part of our day: before bed and reading together as a family. I was always fascinated by the process of writing. My father also had Parkinson’s disease, so my first book My Grandpa’s Shaky Handswas inspired by him and the fact that I saw my children really didn’t notice something was wrong with him in terms of his symptoms. That’s not what they noticed, they noticed the good things about him and the things they loved most about him. 

The second book came when my children got older and started to notice the Parkinson’s symptoms and ask about the fundamentals of Parkinson’s: why did it happen, what can you do to help, and what can they do to help. My daughters and I wrote the second book together, and that was really cathartic. It was a really great project for us to do. My observation of my daughters was that they were afraid of the unknown and things they don’t understand. 

Being open and honest with your children is really important in terms of how they handle the diagnosis. The diagnosis isn’t just you, it affects the whole family, particularly the children. So, having that open dialogue and being able to explain things at their level of understanding is really important. 

Dr. Khandhar: I think that a lot of people are going to find these books inspirational. Another question: “Since being diagnosed with Parkinson’s, I have tried to be more informed about Parkinson’s by connecting with different organizations, signing up for workshops and conferences, connecting with support groups, and joining exercise groups for Parkinson’s. I am learning a lot, and I have met a lot of wonderful people through the Parkinson’s community. However, I also feel like I have been living in a Parkinson’s ‘bubble’. Do you have tips on how to live a more balanced life, not just in dealing with Parkinson’s, but in your overall life?” 

Dr. Mathur: That’s a really interesting question, and I think I know where it’s coming from. I’ll often say to my husband, “I’m PD-ed out,” since it’s ever-present and it doesn’t take any time off. It’s always affecting you in the back of your mind. What I say to people, and what I say to myself, is: “This disease doesn’t define me. This diagnosis doesn’t define me.” 

If I were to ask my family or my friends to write down an adjective or a descriptor of what they think is suitable for me, it’s not going to be “Parkinson’s patient” or “sick” or “ill” or “disabled.” It’s going to be things like: “a good person,” “a good friend,” “a valuable colleague,” or “a fun mother.” These are the descriptors and roles that are much more important in defining who we are outside of Parkinson’s disease. I keep reminding myself of that: “I am much more than this disease.” I think it’s really important to have that introspection and that dialogue with yourself. This is just part of you; it doesn’t have to be you! 

Dr. Khandhar: I really appreciate that, because the audience needs to hear that. Particularly from someone like you who lived it. You can define yourself, and you can redefine yourself however you would like to, hopefully in a very positive way. How can Parkinson’s patients get more actively involved in research? 

Dr. Mathur: Participating in research is really a passion of mine. When we were able to travel and talk to people in person, the question I usually get is, “What are they working on?” And I would say, “They’re working on such and such.” But I began to realize, “they” aren’t working, we as a community have to be responsible for the work that has to be done. 

Part of the problem with clinical trials is that they are being delayed: 80% of clinical trials are delayed because of recruitment issues, and up to 30% can have no patients recruited at all, which is a huge waste of time and resources. Clinical trial participation is really, really important, and we as a community need to realize we are a part of this research; without us, it couldn’t proceed.

Knowing that, I do know there are a lot of myths and misconceptions in the community about Parkinson’s disease about research. As Parkinson’s patients, we need to educate ourselves on what participating research is all about. It doesn’t have to be highly-involved like a brain surgery study, it can be as simple as answering a survey or one visit to do some blood work. Whatever is geared to your location, your situation, and your time commitment, there is something that can fit your lifestyle in terms of clinical research. 

I would start off with asking your neurologist or movement disorders specialist to see in their center what types of research are being done that you could become involved with. There are ways to get involved, but it’s really important you support our research community, so they can do the work that will ultimately benefit ourselves.

Dr. Khandhar: I agree, and it’s not just that research will help others, it can also be a source of empowerment for ourselves. I think that of my patients who have actually involved themselves in research, they feel like they are contributing to something grander than just the care for themselves. I also find that there is a certain personality that starts to develop in someone who is actually participating in research: they start being more routine with their medications, they’re more active in their exercise program, and start being more connected with the community. They also are more willing to share their experience with others who may be on the fence with participating in research. 

Dr. Mathur: I think that’s where we can learn the most, is from people who are already participating in research. They can be the ambassadors for clinical trials in general.

Dr. Khandhar: Everyone in our audience, please consider being a part of research programs, and you can check out the Parkinson’s Association of Northern California’s website for more information. Last question, and I saved the best for last: “What is the best part of having Parkinson’s disease?”

Dr. Mathur: There is really a lot I have learned about myself through this process. My diagnosis has been much more of a blessing than a curse. It’s taught me to prioritize and re-prioritize what’s important in my life. And it allowed me the time to do so, because even though it took my career away from me early on in terms of clinical work, it allowed me to be there more for my children while they were growing up. It allowed me to pursue this role of advocacy and patient education and clinical trial enrollment; things that I am passionate about. It’s taught me that we’re going to face challenges in our lives, and even though we don’t have control over it, it’s how we react that really defines who we are. I think the development of me as a person and managing this disease over the past 22 years has been the best thing for me.

Dr. Khandhar: Thank you so much Dr. Mathur for your time and your insight. I think that’s all the time that we have for our fireside chat.