#ThisIsMyJourney Chapter 15 – Esther Labib-Kiyarash’s Parkinson’s Journey

Esther Labib-Kiyarash serves as an ambassador for the Parkinson's Foundation. Since her diagnosis in February of last year, Esther has navigated the challenges of young-onset Parkinson's disease with determination. Drawing from her own journey, she emphasizes the importance of self-advocacy and community support in managing the complexities of the condition. Esther remains steadfast in her identity, asserting that Parkinson's has not altered her essence. Instead, she finds strength in shared struggles, recognizing every individual's resilience. 

With a deep appreciation for the transformative power of music and the support of female camaraderie, Esther embodies the spirit of resilience, compassion, and advocacy as she champions awareness and support for Parkinson's disease.

My name is Esther. I was diagnosed officially in February of last year. I think my story is not unique. It's a very long process especially for those of us with young onset to get to the final diagnosis. My symptoms officially started in 2020 during the Covid pandemic. I was working in a hospital. My husband also works in a hospital. So obviously it was a stressful time. I think there's probably interesting research to be done about how stress can perhaps, hasten and bring on symptoms sooner because everything that I was experiencing I was experiencing in the context of my work. It began with just not sleeping. I think insomnia is probably the least understood and the least acknowledged but most important of the Parkinson's symptoms. Because when you don't sleep, everything else gets so much worse. I wasn't really sleeping during the pandemic. I have small kids, they were seven and eight at the time. When the school shut down, the kids were home and it was just a crazy time. So, I knew that I wasn’t sleeping but then I started to wake up with a tingly feeling in my arm and my hand. I had and still have tachycardia. My heart beats fast during certain times. I especially noticed it after I ate. Then I started having pain in my shoulder and neck. But again, I just thought it was stress. I just felt really tense all the time. I get massages and stuff, but it just kept getting worse. One day I was in a really stressful situation and my hand just moved on its own. I was like ‘’That's not good’’. By that point, I knew I had enough symptoms to go see a doctor. So, I went and I saw a doctor. Here we call them primary care physicians, internal medicine specialists, just like your general family doctor. He immediately was like ‘’You have too much stress. You probably need to start antidepressants’’. I don't have anything against any depressants, but I was like, I think that's maybe not like gonna fix everything for me because of my hand. My tremor didn’t start like most people. It started like a pulsing on the vein in my hand and then a little bit of a tapping but it wasn't all the time. It was again, when you're stressed when you're cold, when you experience pain, I started to identify all these triggers. I would just reduce the triggers and I could control it. That's another thing. I had multiple people tell me that doctors told them they couldn't have Parkinson's because they could control their tremor. I could and still can largely control my tremor if I reduce enough of the triggers. Of course that changes over time. I got a CT scan on my shoulder. That was normal. I had all my labs done, and that was normal. But my tremor did start to get worse. So, I went to a neurologist. The first neurologist that I saw just said, ‘’Can you walk for me?’’. That's all she said just walk up and down the hallway. I came back and she's like ‘’Have you thought about Parkinson's?’’. I was like, no. She said, ‘’We're gonna order a DaTSCAN and if you want, we can start you on this medication. If the medication makes you feel better, then we'll know you have Parkinson's’’. My husband is a doctor of pharmacy. I was a pharmacy technician and that made no sense to us. Why would you give somebody medication to see if they have a condition? We left and my husband was like, we have friends that are in healthcare. He called a friend who was a neurologist. He's like, go see our friend. I went and he said, ‘’No. There's no way you have Parkinson's. We're gonna test you for all these other things and the last thing is left is Parkinson's. Then, we'll know you have Parkinson's’’. That took a year. I had multiple MRIs, different tests, and the CSF spinal tap study, all that stuff. In the course of that, they found out that I have a lot of the markers for multiple sclerosis.

I was originally diagnosed with multiple sclerosis, but that never set well either. It just didn't feel right. So, I went to the Mayo Clinic which is a very famous clinic in this country as an MS patient. I saw two neurologists there. I saw them separately and then they came back and conferred and came to me and they're like, ‘’We think you have Parkinson's. We don’t think you have MS. We think you have, what’s called radiological isolated syndrome. You can have the markers for MS. But you may never actually have MS, it may not break out. We're gonna send you to a movement disorder specialist’’. That same day a movement disorder specialist came and saw me and diagnosed me officially with Parkinson's disease. It's so crazy because when you talk to a movement disorder specialist and you start to tell them all of what seem like unrelated symptoms in your mind…My arm wasn't swinging when I walked. Sometimes I would trip. I would get dizzy in the shower. I was having problems brushing my teeth, washing my hair, flipping a pancake. It’s just, how would that be Parkinson’s, right? They recognized that right away. It’s amazing because not everybody has access to that. Where I live in Texas, we do not have a movement disorder specialist. I travel eight hours to see one. So, that's how I got here.

What was the most surprising aspect of living with this condition for you?

The non-motor symptoms, specifically the things related to mood. I had known for some time that especially in my work, I just had this general feeling of lack of interest in things that I used to be very passionate about. I would kind of hyperspectate uncertain things. Now that I know more about the disease, I know that apathy, anxiety, the depression are very common. When he finally diagnosed me, my MDS said ‘’Depression is what will get you before the motor symptoms, with young onset in particular because we have such a long journey with this. We have so many other stressors in our lives’’. The other thing was when I found out about the vocal stuff, the throat thing. Because people had started telling me that they couldn't hear me. I did a lot of public speaking in my work. And I had started to notice people leaning in. I'm talking and they're struggling to hear me. Probably a decade ago, after the birth of my first child, I noticed that but I would never have thought that was a thing. I thought people were just bad listeners. Now I know so many people with vocal issues. I, myself have a speech therapist that I see weekly to work on that. That one was a shocker too and the loss of smell. I don't have the loss of smell. But most of the people I know have the loss of smell and certainly, I had no awareness of that.

What advice do you have for someone recently diagnosed with Parkinson’s?

The most important thing that I did was one, I asked for a referral to a physical therapist. I think the first encounter out of diagnosis was with a physical therapist and just the emphasis on having this disease and the healthiest body that I can made a big difference. Because what I now know is the dystonia that I have, the muscle tightness I have on my shoulder, it’s not going to go away. But I've been given tools of stretching and exercise that make it manageable for me. The medication is great, it helps too. But, the realization that there are things that we can take into our own hands to do to alleviate some of our symptoms was probably the best thing that I did for myself. It was not something that was offered to me. I asked for it. The second thing is the community, reaching out to other people with the disease. I think a lot of people have a fear of facing other people with this disease, especially in the later stages. Because it's not something that you want to think about. But you will benefit from connecting with other people with Parkinson's in a way that you will not in any other group of people. Even the ones that are so much more advanced. They have so much wisdom, and the community to offer you, and support. Those are my two really big advice to people.

How crucial is self-advocacy in dealing with a life-altering disease?

I recognize how privileged I am. First of all, I have an education in healthcare. My graduate degree is in healthcare. I have access to good care, but I know what that looks like. I think a lot of people forget that healthcare is about us. I mean, it sounds selfish. I think people want to view it as selfish but it’s not. This is a service that we pay for, it's not free in this country. Even places where it's ‘’free’’. I mean, you're still paying your taxes. Nothing in this world is free. That's how I look at it. As a consumer, I'm going to ask for what I want, and if I hadn't done that I would be on MS infusion medications right now, deteriorating. That's just the reality of it. I speak out for the people that I know can't speak out for whatever reason. I try and share what I know to empower people because it's just human nature to do the bare minimum in so many fields. I mean, I don't really even blame the doctors and things because I've worked in hospitals and doctors' offices all my life. My father was a doctor. So the pressure is on all sides of it. I mean, my husband is a doctor. I know how hard that job is but we have to be the squeaky wheel. If we're not, we will just fall through the cracks. I have a friend who says, ‘’We have to be the CEO of our healthcare’’. I think that is so true. I'm very vocal about every part of this as long as I can be. I'm always telling my husband ‘’If I'm unconscious or whatever, you have to stick up for me. Don't let them do this and that’’. Fortunately, he works in healthcare too. So he's always been that advocate for me as well. Our care partners are so important in that role, especially as time goes on. 

How do you manage the demands of Parkinson's, from self care to social plans?

I have to admit during the pandemic in particular, I think a lot of us were kind of forced into back-burning our social networks. I mentioned that my husband is Persian and if you know any Persians, they are very social people. That community is really good about pulling you in and making sure that you stay active. But I have to really force myself to do it in a way that I did it before. I try and make a point, to connect. I'm pretty active online but try to still give attention and time to the people in my ‘’real life’’. Like I said, I have young children. So a lot of my social things revolve around soccer games and orchestra events and my mom's friends which are so important. I think as women, those connections with other women just on a day-to-day are very important. I was talking to my husband about this the other day. I'm not working anymore. I've retired to devote myself to my family and Parkinson's advocacy full-time. But I’m still gonna get my hair done. I'm still gonna get my Botox, not on my dystonia, on my face and just be me. Who I was before Parkinson's hasn't changed. Parkinson’s hasn’t changed me as who I am. I am still going to be trying to be myself with Parkinson's.

What changed the most for you after the diagnosis?

How I see other people. Strangely enough, I never would have associated with that but when I look at other people, people that I used to look at and think ‘’Wow, that person has everything. I wish I had what that person has. They have it all together’’. I look at people the opposite of that now. I look at people and I think ‘’That person has a struggle. I don't know what it is and that's okay’’. Everybody has some struggle. It might not be a degenerative brain disease. It might be a body image issue. It might be problems in their family. It may be financial. It could be anything. I don't envy people anymore. I'm much more thankful for what I have. I feel like this disease humbles you. I was so confident in my health. I didn't even have a doctor. The only time I went to a doctor was when I had my babies. 

Once you wake up and you struggle to walk, you realize you took advantage of so many little things. I have to appreciate everything that I have. I look at people totally different now. You look at celebrities and they have these struggles of their own. So, I think it makes you feel more connected to society in a way. Because we all share in our struggles and everybody's really a hero that makes it through it every day.

How do you manage your disease? Do you have any secret tips or tricks?

I talked a little bit about my lack of motivation, apathy, and mood issues. There is something very magical about music in this disease. And I don't understand it at all. But I need music to motivate me to do pretty much anything. I just got a new pair of AirPods because my other ones burned out. I have at least one in my ear all the time. The cadence, the rhythm of the music help me walk. It snaps me into a pace. It helps me remember to swing my arm and things like that. Music will make me move. It also reminds me of happier times in my life. If I'm sad it gets me to dance which is always good. Movement is so important. I mean we have to keep moving. If you don't already listen to music on a regular basis, I strongly suggest that you start making playlists. I have doing the laundry playlist, walking to school playlist, and exercise playlist. Music is a miraculous thing.

Do you notice any variations in how both genders experience this condition?

I'm in probably at least six support groups right now. Out of those, one of them that I like in particular is just females with YOPD. It's so interesting to see how dynamics are different. This is not universal and I'm not trying to make generalizations but I see kind of two mindsets. There's this fighter mindset like we have to fight this. I understand that and that is 100% true. I mean we do not want to give this disease anything more than we absolutely have to give it. But then there's also kind of this mindset of acceptance. I think that's grieving, the loss of the life that you had before. I think that for whatever reason, women seem to be more in that latter category of being able to try and focus more on that grieving process and processing the emotions and of what we have to work through to stay positive and move forward with this disease. But again, it is hard to make generalizations because I see it on both sides. Probably the main thing I noticed with the gender differences functionally is that just as a woman [and I've seen studies on this too] the work that we do at home is not always shared as it should be. So that doesn't adapt well when the woman gets a chronic disease. It's very hard for that work to be taken up by even a willing partner. I mean, my husband is amazing. He is such a better cook than me. He's such a better-organized person than me. He cleans, he is amazing. But he has to work, too. So the woman tends to be what we call a default. The one that picks the kids up from school because I'm home. Even the women that work frankly, that tends to be our role. We have this whole other set of stressors that men don't have. When I got diagnosed, my husband took time off work to watch the kids. I went to Phoenix and when I came back it was like, ‘’Okay, I have Parkinson's disease. What's for dinner?’’. I mean those tasks don't change and I can't resign from them. I do fortunately have help. I think that was probably the biggest help that I got. I have someone who comes to my home every week and helps, clean and keep me organized. I think that's the big burden of women not just in this disease but in society, which doesn’t go away when you have a chronic disease. Frankly, it drains us physically and emotionally as much as we love our families. It's a lot of work.

As women in general, we share these different burdens. But it's a safer space and in a lot of ways it's easier to open up. There's a lot of research now into how our symptoms are tied to our hormones and menstrual cycles. I mentioned the softening in my voice, probably my cardinal symptom started after the birth of my first child. I know many women who have said that as well. It's obviously a stressor on our bodies. We're going through these physical changes as we age too, pre-menopause, menopause… We're picking the kids up from school, dropping them up at school, throwing birthday parties, and wrapping Christmas presents. I have Nawruz coming up. It's gonna be a big deal. I have to coordinate all these things and these are such female things to do. I am unfortunate in that I don't really feel like I have too many cognitive issues. But I was telling my husband the other day. He keeps asking me for his passwords. I keep telling him ‘’Babe, you're gonna have to write your passwords down’’. Your husband will ask you, when is Auntie or so-and-so's birthday? Guys, I can't be the manager of the home forever, manage my own health as well, and manage all your lives and where you put your shoes and all of those things. When you talk to other women, those are the things that we talk about, things having to do with our appearance. We had a whole discussion about shoes. I had to give up a lot of my high-heeled shoes. It seems like shoes, makeup, and hair are superficial things. But over your lifetime when they are tied to who you are, even more important make you happy, those little things. To feel supported and to have somebody else say, I got my haircut short now it's easier to manage but I still look cute. I know we had to ask our husbands to pick up some more slack. They're happy to do it usually but we had to communicate. I think in a lot of cases women need to communicate with other women to feel understood and supported in this disease and in life. It's just a magical bond.

What's your vision for the future of Parkinson's, and what are your hopes for it?

I hope and it's always kind of been my goal of advocacy to make this disease visible in the way that let's say autism is. If I see a child stemming or acting out, I identify that as do my children as somebody who has autism. It's not scary. We don't question it. We're accommodating. We have special services for them and they are integrated into society. Obviously, these are very different diseases. But when someone sees someone like me at the grocery store shaking or walking strangely or tripping over myself, they are going to think that I'm drunk or maybe on drugs. It's scary and you get what we call that stink eye. It shouldn't be like that. This is not an uncommon disease. It is uncommon in my age group, but that is not going to be the case forever, unfortunately. The data is very clear. It's doubled very rapidly in the last 10 years. As much as I want a cure, I want to live well now. I want people to see someone like me just like they see someone older with a cane and think ‘’Okay. This person has Parkinson's. They might take a little more time at the cash register. They might need a little bit of extra help at the airport’’. Come at us from a place of empathy as we all should and as humans. Unfortunately, it doesn't always happen. The more people like me and all of my friends in the community that put ourselves out there, that's always my purpose is to sort of normalize this. If you see somebody doing sign language, just take the stigma out of it. People assume that we're going to deteriorate really quickly, that we're going to lose our memory really quickly, that we're going to be in a wheelchair really quickly. I mean, I know people that have been having this disease 20 years and there's still functioning at a pretty high level. People need to understand that. This is a chronic disease and we need support now to keep us in the workplace, to keep us in society, to keep us doing and contributing as much as we can, for as long as we can. My hope for the future is that society recognizes that and we have more support services to back that up.

I am an ambassador for the Parkinson's Foundation. I wish that I had known about that organization when I got diagnosed because they just started cleaning out for so much good information. I think when we talk about self-advocacy, part of that is we have to educate ourselves. I mean, realistically, our physicians don't have the time to guide us through every little stitch of information that we're going to need. Things like that are so helpful. Of course, don't forget to follow me on my social media accounts. I am @shakinginmyboots1 on Instagram and Facebook, as myself Esther Labib-Kiyarash on X and TikTok. But on TikTok, I'm Esther Labib-Kiyara because I have too many characters in my name.