We had the opportunity to speak with the wonderful Dr. Maria De Leon. She has a unique perspective of Parkinson’s: she has been a caregiver, a Movement Disorders Specialist and has young-onset Parkinson’s herself.
Maria currently serves as a public policy advocate for Michael J Fox Foundation. She is also a blogger for Brain and Life magazine, health union and her personal blogs defeatparkinsons.com and parkinsonsdiva.org. Her work focuses on the issues that those from minority groups face in obtaining diagnosis and treatment, barriers for participation in clinical research and issues faced by women in managing chronic illnesses.
Your grandmother had Parkinson’s. Could you tell us about your experience of being a caregiver?
It’s ironic. I went to medical school wanting to be a neurologist to take care of Parkinson’s patients, and when I finished my fellowship my grandmother started developing Parkinson’s. She was living in Mexico at the time. For a year or so she went undiagnosed. My grandfather was going to the doctor and describing her symptoms, and the doctor couldn’t see her and was prescribing medications. She fell because she had rigidity and broke an ankle, which is how I saw her and I immediately understood that she had Parkinson’s. So I spoke to her doctor and they started treatments there. For a while, I’d travel back and forth to Mexico and talk to her doctor to manage her treatment.
When my grandfather passed away, she couldn't stay by herself. So I brought her to live with me and that was when it became first hand. She was already into mid to end stage Parkinson’s. She was having difficulty walking, she was freezing a lot, falling and was having hallucinations and confusion. Of course, I had my practice at the time which would keep me quite busy and I had someone here that stayed with her 24/7. I managed her care on the weekends and at night. It was difficult at times. I experienced firsthand the confusion that she felt. She would accuse me of holding her hostage because towards the end she became bed-bound, and I have to put her in a wheelchair to take her out, which wasn’t possible as often as I would have liked. That emotional conflict of seeing someone you love being bedridden and having them accusing you was very difficult for me.
I had to learn how to deal with this and not take it personally. The emotional fatigue of coming home and seeing her confused and disoriented and taking care of her was a lot of work. I had house-help coming over who would take care of her for a few hours and my husband was very supportive. But even so it was emotionally and physically draining. Flipping her over in bed to avoid bedsores required special equipment because of her rigidity. When she would get upset I would try to distract her with colouring books and other things. I started watching a lot of soap operas so I could spend time with her and my daughter and I would sit her up in the bed to play card games and other things to keep her occupied. There were a lot of practical things that I learnt from this experience. I would now ask caregivers about how things were at home. Did they need some help, did they need to talk to someone. Because this experience can wear you out. It is important to find a way to decompress. Even if you use home-care services, it is still a full-time job because with confusion and other mental symptoms, they need a familiar face around.
The time with my grandma is special, I would not trade it with anything in the world. It helped me become a better doctor and a caregiver.
Did you feel the need for some kind of tool or technology in your time as a caregiver?
For me, transferring patients who were bed-ridden or unable to move was the hardest part because I could not do it on my own. I needed the assistance of my husband or other people. It was hard for me to transfer her, get her out of the car and things like that. I ended up hurting myself a couple times while trying to do that. I think technology can help quite a lot in such cases.
This is really important because when it’s difficult to move the patient, it’s done less often. That confinement is not good. It causes that downward mental trajectory when they feel that they are in one closed space for most of the time.
How did your experience as a caretaker help you become a better doctor?
It helped me better understand issues that happened at home that we doctors don’t necessarily consider in the clinic. Things like the patient was being upset all the time or that they were angry at the caregiver. I also started recognising that fatigue in the caregiver’s eyes. And we started spending more time with the caregiver as well, asking them how they were doing, if they needed some help. Helping them take care of themselves is important because when you have a happier and healthier caregiver, care for the patient is also better.
Do you have any suggestions for caretakers?
Take care of yourself first. You have to spend time on your own. Decompress. Another important thing is to wait till the patient really needs you. Pace yourself. Don’t try to be everything for the patient because you are going to burn out, and then when the patient needs you, you are not going to have the strength.
And when they say things don’t take it personally and don’t argue with them. When you tackle them in the middle of an episode it is only going to make you feel worse as a caregiver and the patient is going to get more upset. Walk away or try to distract them, and deal with it later when things are calmer.
Do you think being in a community, having a friend circle helps?
Yes, it helps a lot, having that support. Having someone who can come and stay with them, talk to them or even come in to talk to you. It helps to have somebody to just talk about what's going on. It is very important. Also, for instance if you're taking care of a loved one and there are already issues of mobility, you have to be around more. You may need assistance doing things like grocery shopping or laundry or going to the post office and so it's good to have a support system and already know what you need.
Moving on to your work as an advocate. You have advocated for women’s rights, better representation in research. Could you tell us more about your advocacy efforts?
Until recently, we weren't looking at women as different from men in the presentation of the disease. Most research studies have been done on white men. So it's really difficult to say if there is a difference between men and women in terms of risk. My observations indicate a difference in epidemiology when it comes to young onset Parkinson’s. We don’t have conclusive evidence yet. But we know that symptoms present differently between genders.
I am working to find the differences between genders in the presentation of Parkinson's. By studying more women, I am hoping to learn the important differences as well as the commonalities so we can try to find what causes Parkinson’s. I’m also trying to get more people into research.
Research in Parkinson’s needs to include more diverse communities. Most of the research is white men, but I have seen Hispanics, Black communities and others with similar incidence of Parkinson’s. This needs to be studied, and therefore we need to expand participation in our research. So that's my goal: to find the pathology and pathophysiology of Parkinson’s so we can prevent it and hopefully find a cure.
Could you tell us more about your research interests in Parkinson's?
There is a large Parkinson’s study by the Parkinson’s Foundation that has been going on for about 10 years. Dr. Ignacio Mata is heading the study, which is trying to find out the genetic differences in Parkinson’s other than the ones we already know. Everybody shows a unique presentation of symptoms in Parkinson’s, yet we only know of 7 or 8 mutations associated with Parkinson’s. That is a small part of all Parkinson’s. That is one of my interests.
There is another study in the US where we are trying to do something similar, while also looking at the families and other environmental factors. Here, we are also encouraging minorities and other ethnic groups to participate so that we can get more genetic variability and understand if there are factors that can be associated with higher risk of Parkinson’s. So in a few years we should at least have some data to understand the genetics of Parkinson’s better.
Another study that has started recently that focuses on women in Parkinson’s and tries to understand the differences in factors among them in presentation and pathology of Parkinson’s.
One of your goals in Parkinson’s research is to detect and prevent dementia. Could you tell us more about that?
From my own experiences as a doctor, I think dementia is something that can be prevented. Perhaps not fully, but at least to some degree. Similar to Alzheimers, there are factors associated with a reduced risk, such as a higher education, blood pressure control, controlling diabetes, making sure you’re engaged mentally, basic exercise such as 30 minutes- 3 times a week which is basically just like a walk. These have been shown to reduce risk in some cases. I think we can stall or prevent dementia in Parkinson’s with a similar approach. I feel we are under-managing the cognitive aspect, which is preventable and there is much more that can be done.
Could you tell us more about your own diagnosis with Young Onset Parkinson’s Disease?
I started having symptoms in my twenties in hindsight, but it was in my late thirties that I started observing the symptoms. I noticed that I was having difficulty in doing the things I asked my patients to do. I was having trouble tapping, I was losing balance. I couldn't walk in tandem, I started to fall and my handwriting started to change. My grandmother had just passed away when I started to notice my symptoms.
I also had a lot of pain, and that is not something we often associate with Parkinson’s. It is one of the reasons I started research into women in Parkinson’s. Even though I knew and understood the symptoms, in reality it took two years to get an official diagnosis because I was a woman and because I had pain. Despite me being a specialist, because of the presence of pain it took time to diagnose. I had visual problems too. I was running into walls, I had trouble parking parallelly between two cars, I was having trouble driving at night. It was very debilitating. A few years ago, vision problems would not have been considered to be part of Parkinson’s disease. And so I knew I had Parkinson’s symptoms, but I also knew I had vision and pain issues. I had to go through every test, trying to determine if it was a tumor or Multiple Sclerosis. And in all this while, my doctor kept telling me that my vision was perfect.
And I couldn't figure out how that was possible with all the trouble I was having.
Finally, we decided to just start with Parkinson’s medication and lo-behold my vision improved and my pain went away. It was then that I realised, there is a lot more that we don’t know. I remembered that I had a few patients that had complained of vision problems and who met many specialists, but we never could figure out the source of their problems. Looking back, I realised that this could’ve been the cause. That started my advocacy effort. A lot of young women present with pain, and even specialists in my field are not trained to recognise it as one of the symptoms associated with Parkinson’s. That is what drives my advocacy efforts, to improve inclusion in research so we can understand this disease better.
What symptoms do you face currently?
I had covid-like symptoms recently, and that has my Parkinson’s symptoms to deteriorate. Currently I have longer “off” periods, when the medicine wears off and I’m slow, uncoordinated, I have a very low voice and I have trouble concentrating sometimes.
What would you say to someone newly diagnosed with Parkinson's?
It's important to allow yourself to feel the emotion. It is hard. It’s a little sad but it's going to change. It’s alright to take some time and come to terms with it, but you have to move on. You have to accept it, you have to embrace it. It's not a death sentence, it's not the end of your life. It’s just about finding a new life, an opportunity to reinvent yourself. Parkinson’s is a part of me but it doesn't define me. We have to be ourselves and use our talents and passions to achieve our goals. We’ve come a long way in the last few years, the prognosis is better. Be involved and engaged in helping others, that helps you as well. There is hope, don’t give up.
Maria has seen Parkinson’s like few others have. She is tackling a very fundamental bias in research which is likely to have a profound impact not only on Parkinson’s, but several other fields. Her efforts in research and advocacy give us hope that the community is in good hands. We really enjoyed speaking with Maria. Good luck with your research!
We have a few more articles coming up in this series. Stay tuned for more.