#ThisIsMyJourney Chapter 16 – Snehal Amembal’s Parkinson’s Journey

Snehal Amembal's journey with Parkinson's disease began subtly in 2018, eventually leading to a formal diagnosis in 2021 after years of uncertainty and misinterpretations. Despite facing skepticism and denial within the medical community, Snehal's determination and intuition led her to seek answers. 

As a mother of two young children, Snehal grapples not only with the physical challenges posed by Parkinson's but also with the emotional complexities of parenting while facing a life-changing diagnosis. Despite the challenges, Snehal finds strength in her supportive husband, two young children, and her parents. Her story highlights the importance of self-advocacy and resilience in the face of life-changing diagnoses, while also emphasizing the transformative power of gratitude and perspective gained through adversity. 

Through the lens of Parkinson's, Snehal gains a newfound perspective on life's priorities, learning to cherish the simplicity of everyday joys and discern the true depth of relationships.

I was diagnosed three years ago. I was formally diagnosed in 2021. But my first symptoms started, I think, in 2018. My first symptom was essentially, a kind of inability to move my fingers very well in my right hand. My son was just under a year old when my first symptoms started. There's this baby shark song. So in that, there's one step which says ‘’jellyfish’’ and for jellyfish, you have to move your fingers and my right hand wasn't moving very well. I was like ‘’What's going on?’’. At that time I was just too consumed with looking after him and so on and I didn't really pay attention to that. Slowly, I decided to use my left hand more. My parents were visiting and they were like, ‘’What's wrong with you? You are using your left hand’’. They kind of pushed me to go and see the doctor. The doctor basically just said, maybe to do with the carpal tunnel because you're feeding the baby and holding him with the right hand. Maybe he's causing some kind of numb feeling in there. So, we went with that for almost a year or two. I wasn't aware of what was going on with my body. In 2019, I had my second child, and in 2019, I started getting the symptoms of dystonia in my right foot. And again, it was put down to kind of post-partum sort of issues. They said, once your body gets back to normal, it'll be fine. I think it was the three years I was just pushed from one specialist to another because nobody was sure what was going on. I think a lot of people were in denial as well. The medical community itself was in denial that I was somebody who could fit in the boxes and check all the boxes for Parkinson's. It was my gut feeling that there was something more than just a muscle pull. Basically, I said, I just needed to see a neurologist because it's nothing to do with a muscle I ought to know. It has something to do with the central nervous system. My first tremor started in my right leg. I think that's the time I said, okay, this is something more than just a muscle or whatever it is. At that point in time, I saw a neurologist and he told me it was more than just a back problem or a hand problem. It was just unfortunately Parkinson's. I was like, okay. It happened in 2021, just coming out of lockdown. People are still kind of seeing okay, you are not allowed to go accompanied into the hospital. So, I was on my own when I was given the diagnosis. It was given as a matter of fact. ‘’Okay, now you have Parkinson's and this is what we're gonna do’’ like in terms of the medication and so on.

That was how I was diagnosed. Since then, I think the first year to be honest was just trying to cope with the fact that you've been given a life-changing diagnosis, a condition which is incurable, which basically is going to be getting worse over time. There's no light at the end of the tunnel. When you're given a diagnosis like that, it kind of affects you because, at that time, my children were really small. My younger one was just 18 months old and my older one was just turning three. So it was like, wow, what am I supposed to do now? What gave me strength was my husband for sure. He's just my greatest support. He always helps me look at the silver linings. I think that that's something invaluable. Since then, I would say I've grown a lot as a person, to be honest. Because I think it gives you a lot of perspective on life. It helps you understand what is not important and what is not important, who really cares for you and who is there just for your namesake. You get to know a lot of things about yourself. One thing I would say is that you learn to be grateful for the little things. That's what Parkinson's does. It helps you put things in perspective with life.

How did you feel after the diagnosis? 

It was just overwhelming at first. It was just too much to take in. I say to my parents as well. I think I was just operating in a robot mode. I wasn't feeling anything. I never had the chance to actually sit down and think, okay, how do I feel about this? That is something that came much late, once my youngest son turned one. That would probably be the time when I felt okay, I can maybe just think about how I'm feeling about this whole thing. Also, the other part of it is you are processing it and then you're helping people around you process it as well like, family and friends. When you say it’s Parkinson’s, it's like ‘’Are you sure? You're so young. How can that be? Have you taken a second opinion?’’. How people react to you and how people respond is also very important. I think that's where awareness has to come in because people need to know that somebody who looks like me can also have Parkinson's. I think the first image that comes to mind when you say Parkinson’s is a really old person who has tremors. That's the only thing but there are so many things that are invisible in Parkinson's that people don't really see. That's the reason why I also started my advocacy on Instagram, to be able to share and normalize it.

What was the most unexpected aspect of having Parkinson’s?

The most unexpected symptom was I have hallucinations in my eye, in the periphery of my vision. There was a very scary symptom actually because it came up as flashes in the eye. They initially told me you have to go to A&E, the emergency department because it could be that the retina was detaching from part of the thing and it could lead to blindness. So, I had to go to the A&E and then they referred me to the ophthalmologist and they checked the physical eye. Everything was fine with the eye. They were really confused, like why, what happened? At that time, I wasn't diagnosed with Parkinson's yet. I was completely like, what is going on? Because my eye is being affected. And then I went to a neurologist. He said, that's part of the condition and it's because of the hallucinations that sometimes accompany the condition. I think that was the most unexpected symptom.

How did your perspective on life and others change after the diagnosis?

I was a control freak before Parkinson's happened. I wanted everything done in a certain way, at a certain time, and so on. I think Parkinson's just threw me off completely because what it teaches you is that it's so unpredictable. The symptoms that you experience also differ day to day in terms of how often they occur and also the intensity at which they are set in. Being able to deal with change was something definitely that I've learned through Parkinson's. 

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

What I would say is that don't worry about what other people think around you. For example, if I'm in the supermarket and I'm removing my card from my wallet and I start getting a tremor, people around me are just wondering what's going on, why I am shaking, or whatever. Just keep calm. That's something that really helps me because if I start wondering and worrying about what other people are thinking, that's not going to help me. That's gonna create more anxiety. For coping, I do a lot of reading about the research happening within Parkinson's. That definitely gives hope. For example, there was a recent article that I read and it said that if you do exercise in high intensity at least three times a week, it helps to slow down the progression. I think exercise is something that I really do to cope on a day-to-day basis. I have to exercise. I know that positively if I think about it, it could have been much worse. I think that's something that I use for cognitive restructuring, and reframing to help me cope.

In what ways do you think the experience of Parkinson's differs between women and men?

Primarily because I personally have spoken to other women who have Parkinson's, I think the symptoms aggravate during the PMS time. That is one major difference that probably occurs in women as opposed to men. Emotionally, it also is different for women as opposed to men. The part of the brain that is responsible for dopamine is also responsible for emotional regulation. I think that is also different in men and women and how we express ourselves as different as a man.

I think we’re breaking the stereotypes with us having  Parkinson's. Explaining that to people around you and making them basically understand that is the key. Yes, even I can have Parkinson's. In terms of the expectations that are there within other roles that I play, I think needed some kind of, resetting of expectations because of the resilience that I need and the strength that I need to carry on day to day. There are times when I'll be fatigued. That’s one of the symptoms I experience randomly. I'll get really tired. And then I say, okay, I can't do that, and for my family to understand that I think that is something that you need to understand. My kids are so young. But at the moment, they are so on the ball with my needs, which I find really amazing. They tell me ‘’Mommy, you should do maybe go and lie down’’, things like that. He's just six and four now. Living with a parent who has a condition, for them that's one of their teachers as well. They say they're emotionally very mature for their age. I think that probably comes with dealing with me on a daily basis, to be honest.

Could you elaborate on your role as a Parkinson's disease advocate?

This came out quite organically. My goal when I started my Instagram page was just to share my writings. When I started the page, it had kind of coincided with me having the condition as well. So, writing to be honest helps me cope with the condition because it helps me express what I'm feeling. That was very important. Then, I started writing about the condition. I had people who had the condition wrote to me saying thank you for saying this because we sometimes don't have the words, but you articulated what we were thinking. I think that kind of gave me the motivation to work further and just to basically tell people out there that I have Parkinson's too. This is how I'm trying to cope with it. I dance a lot as well. 

I think I’m trying to just say to people that things are not going to be bad every day. My goal is to normalize speaking about the condition. If somebody sees me on the road, I'm dragging my leg or when I'm walking, dragging my foot or if I have a slight tremor or whatever it is, I want to be able to be comfortable to actually say okay, I have Parkinson's. And I want to tell the person not to feel uncomfortable about it because a lot of times people don't know what to say about this. Genuinely, they don't know how to respond. So I think that's what I'm trying to achieve. Just trying to normalize speaking about the condition.

What recommendations would you offer to families and care partners of individuals living with Parkinson's disease?

The first thing I would say is just be patient because I think a lot of times we don't know what we are experiencing on a day-to-day basis ourselves. So it's very hard for us to explain to you what we're going through. Just be patient and try to support as much as possible. There’s a very fine line between kind of empathy and sympathy. I'm fiercely independent. If somebody does something for me I'm like, okay, I could have done that. I will ask for help if I need it, kind of thing. Just be supportive and patient. For example, recently I started driving again and my kids were with me in the car. After I took them for a drive, they started clapping for me. Even they understand that it's a difficult thing for me to have achieved. That kind of support is invaluable, to be honest. 

What's your Parkinson's healthcare routine, and what advice would you give based on it?

Sleep is very important. Insomnia is one of the symptoms. Thankfully, I don't have that problem. Exercise, for sure, even if you don't feel like doing it. There are so many times I don't feel like doing it, again because of apathy which is another symptom of Parkinson's. It's like you just wake up in the morning and you don't want to do anything at all. Move even if it's just a walk around the house or whatever. Do some kind of bending, stretching whatever but just move your body. I think that really helps. Personally, dressing up well helped me a lot to be honest. There’s something called dopamine dressing. That really helped. Adding a lot of color to your clothes, a lot of jewelry as well. I'm always changing my jewelry and things like that. So, I think just kind of looking good helps me feel good. Releasing dopamine is good for me. 

Keeping in touch with the close family and friends. People who really make you feel good, like positive people, I think that that really helps as well. Because that is very helpful mentally to keep you going. Your diet is a huge part of it. Some supplements are important as well. I think that's pretty much my self-care routine.

In terms of diet, I just follow a balanced diet. I take a couple of supplements that I find really useful. One of them I have spoken about on my page as well is the evening primrose oil. I found that when I use that it really helps my symptoms. I read about it and it basically says that it balances the hormones in the body which then leads to dopamine being produced. 

What specific aspects do you pay attention to daily to manage your Parkinson's condition effectively?

I know that it's going to be a bad day when I wake up and my right side is extremely stiff and I start driving my foot on it. Then I know that I need to do things a bit differently. My goal setting for that day is to try to be a bit easy on myself. For example, if I plan to do exercise, to run a few errands, go to the shops, and so on. I'll probably say I don't need to do that today because even in a small thing like going to a shop I get tiring because my body is just going into overdrive. I have the Fitbit which really helps because whenever my body is not very fluid, I know that active zone minutes are going up online. I mean, I'm not actually working out and I know my body is working hard to even move normally. I think that's when I know that I need to be a bit more kind of myself. So I think my expectations of myself are kind of, I have to lower them.

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

I would say that, it is obviously a life-changing diagnosis, but there's always hope and there's always a way to manage the symptoms. Like you said, it's different in different people. So depending on what symptoms you have, there are always ways that people manage those symptoms. I think if you are able to manage the symptoms and exercise, I think that is basically my mantra because if you do that then you are able to have some control over a condition that is pretty much going to be degenerative. I think we need to find ways in which we can control the condition. Also, the second thing which I didn't do initially was I try to do everything by myself. I was hesitant to ask for help and support. That is something that I would have done differently. If somebody's diagnosed nearly I would say ask for support, ask for help. There's no shame in it because I think the more support systems you have around you, the better you can enjoy your life. 

What keeps you resilient each day despite facing challenging adversities?

My kids for sure and my parents as well because I think they were extremely shocked not to see that. They were in denial in the beginning and I think it took a lot for them to come on board with the fact that I have this condition. Basically, it's just for the family, to be honest, to be able to be there for them as long as I can and to show them that it's not the end of the world. You have this condition, you learn how to live with it. To be honest, when I think back to it, if I was able to survive the initial first year along with two kids and a pandemic then yes, I can do it. I think that kind of just gives me the motivation to do that for sure.