#ThisIsMyJourney Chapter 14 – Sara Bastiaensen’s Parkinson’s Journey

Meet Sara Bastiaensen, a 35-year-old mother whose life took a sharp turn when she received a Parkinson's diagnosis in 2022. With a young son to care for, a home to manage, and a career to uphold, Sara's diagnosis didn't alter the course of her life trajectory, despite the immense challenge of juggling these responsibilities simultaneously. Through her experiences, she aims to shed light for greater awareness of both Parkinson’s visible and invisible impacts on daily life. Sara finds solace and motivation in her son, recognizing him as her driving force in the battle against Parkinson's. 

Despite the hurdles, Sara remains grateful for the perspective her illness has granted her, cherishing the small joys and refusing to let Parkinson's define her. She encourages others facing similar challenges to maintain optimism, emphasizing the importance of embracing one's identity and rediscovering life's passions amidst adversity.

My name is Sara and I am now 35 years old. I had my birthday this month. My diagnosis was on June 1st, 2022 and my life has changed a lot since that day. I have a lot of support but also not enough, maybe because it's considered an old man's disease, still which is really not correct anymore because a lot of young people have it. It's been a roller coaster for me. I'm very young. I have a son, he's six years old. So I still have a lot of work. I have a house. I have a job. So, I can’t just lay on the couch all day. That's my general story and I would like to help others be aware of this.

What were the initial symptoms you experienced?

I started having the visible symptoms I think around a year before my diagnosis. I think I had it for a longer time, but your mind is not thinking ‘’Oh, I have Parkinson's’’ because no one knows it's affecting young people as well. My first symptom was a tremor in my left hand and I just thought it was stress because I had a stressful job at that time. I didn't think anything of it. I just let it slide, but then my arm swing on the left side disappeared and I was always holding my arm like this. I thought it was maybe just a pinched nerve or just stress so I didn't go to the doctor. Then after a few months, my left leg started walking funny, dragging my left foot. I thought ‘’This is all going on on the left side of my body. Maybe there is something wrong in my brain, or maybe it's a pinched nerve in my back or something’’. So, I went to my doctor and he immediately suggested the brain scan because he thought it was MS. I got really scared because MS is a serious illness. They did the brain scan, but it came out clear. I was really relieved like this was nothing serious. This is really going to be just a pinched nerve or just something that's in my head. I was so convinced that with it being nothing. I wasn't worried at all. I told all my friends ‘’Don't worry. I don't even lie awake of this. I think it will be fine’’. Then, they kept searching and he forwarded me to a neurologist. She said they were signs of Parkinson's. But I was like ‘’No, I don't have anyone in my family who has this and I don't think I have this. It's for old people’’. I took the DaTSCAN. I don't know if you're familiar with that, but they did the scan. Then I had to go back for the result in June first. I remember I was at work. It was just a normal workday for me. I said to my boss ‘’I'm just quickly going to the hospital for my result and I will come back’’. I went there alone. I thought it would be fine, just another test that would come back negative. I got into the office and I sat down. I was really nervous because she gave me a look that she was nervous. She said ‘’Y ou had the DaTSCAN?’’. I said, yes I did. I already had the order saying in my head ‘’It's clear it's fine’’. Then she said, ‘’You have Parkinson's’’. She put the box of tissues on my face and I was crying. I said ‘’What does it even mean? What is Parkinson's? How do you cure it? What does this mean for my future? I have a child. He’s six years old’’. She said this and that and she explained a bit. I was alone in all of these and I didn't really hear what she was saying. Maybe I should have brought my partner to it, but I didn't. I just went through all this. I got out of her office crying. I remember everyone in the waiting room, just staring at me like ‘’Oh, she didn't get good news’’. I walked outside the hospital. I sat there on the sidewalk and I called my mom to tell her. She was like, ‘’Oh my God. I'm going to pick you up’’. I said ‘’No, mom. I'm here with the bike of my work. So I have to drive back to work first and then maybe I'll go home’’. I drove back and I just started working. My boss came up to me and asked how it went. I said ‘’It's not good. They found out that I have Parkinson's’’. He was like, ‘’Shouldn't you go home?’’. I was still denying it. ‘’No, I'm fine. I'm just going to work’’. Then, I just stopped and I went home because I couldn't focus. I called my partner and I said it. He was in shock too because he didn't expect this. That's how we found out. The moment of the symptoms and the moment of the diagnosis were only a few months. It happened all so fast. Normally, it takes years to diagnose someone with Parkinson's but mine just happened really fast. It was like being from someone healthy to someone with a serious illness. So, I had to process everything. It took me a while to do that. I still haven't processed everything I think.

How did your life change after the diagnosis?

It changed a lot but I still consider myself in denial because I kept working. There's not a moment that I stayed home since I got this diagnosis. I worked from June till December full time still. But then in December, my doctor really obligated me to stay home for a while because I was really crushing. It was all too much and I had to allow myself to process this and just take some rest because I was still going at the same pace that I have always gone. It was backslapping me. I couldn't cope anymore. I should have just done it immediately after diagnosis. Just stay at home for a few months, but I didn't. That's what I felt in December. So, I stayed home for six weeks. Then in January, I just went back to work partially, four days instead of five. I'm still doing that way now. I still work out. I still do everything in the household. It's still too much, but I'm desperately trying to find the balance in that. My social life has been put on hold for quite a while now. I rarely go out. I try to avoid crowded places because I feel ashamed a lot. Because my walk is really funny when I'm undermedicated or I have off periods a lot. I'm very slow. Also, the parking spaces are very far. I haven't got a card to park in the spaces where they're closer for people with disability. They're still working on that. If I have to walk far, then I just say I'm not coming. It's really affecting everything. Playing with my son, playing soccer outside. I can't walk properly. So everything is just put on hold. That's how it feels. It's like I have to say goodbye to this person I was. There's a new person now.

Are you able to prioritize self-care in your daily routine?

I'm trying to but I still put my work before my health. I need to work on that. I noticed but I'm trying to figure it all out. I search for other people who have it and how they balance it. Because it's different when you're 60 years old and you can sit all day or you can just put your health first, but my son comes first and my job is important. I'm still so young so I don't have the advantage of doing whatever I can. My time is limited, unfortunately. I have to work with what I have. I do my best but sometimes I need to take a break from myself to rest and take a deep breath. Accept days that are bad, accept the days where I just can't move and I have a hard time doing that. I go over my limits a lot and that's what bothers me because I can't do that anymore, but I still do it. Because I'm a little bit stubborn maybe.

How do you engage with the Parkinson's community during this time?

I text every day with someone, around the world. I have friends in Australia and America... It's really heartwarming to see how many people reach out to you when you have this diagnosis. I'm not a big fan of social media, but that's really a plus on social media because you have so many networks all over the world. The most thing I do is I like alone time and I sometimes go for a walk when I can to just clear my head and just accept it for what it is and then just make the best of it. I still have a long life to live. It's unpredictable, but we make the most of it. It kind of comforts me to know that there are people like me, more and more unfortunately. We'll figure it out together. I think it will be fine. I just have to learn from other people how they do it. But I have a lot of ambitions that I want to do in terms of Parkinson's. I thought maybe I should write a book of my story or just note everything down. I do that because maybe someday it will help other people.

I try to write down. I already wrote poems. I did it all my life. I keep them in my notes on my phone. No one knows this and no one reads them but I just do it for myself. Whenever I feel like I can't talk to anyone, I can't express my feelings, I put down notes that are in my head, just sentences. They're not really good to read but they're just out of my head. Maybe someday I can put them together and make a book out of it or something. It helps me a lot.

What keeps you resilient each day despite facing challenging adversities?

The thing that keeps me going is my son, definitely. He's the one I’ve been fighting for. That's the number one. I think I’m just grateful for Parkinson's as well because having trouble with your health is really eye-opening. In one way, you get more perspective on things. You appreciate things more, little things. You never take things for granted anymore. So that's a thing that I learned from having an illness like this.

I can think like ‘’That's not a problem. That's just inconvenience or something’’. I can put everything so good in perspective. There are people in the world who have it way worse than me, especially now with the war and everything. I have a roof over my head. I have a loving family. I think about that and then it comforts me. Is it really that bad? Yeah, it's bad but I'm not dying. I'm just slowly fading a bit.

How does social media support you in your journey, and do you plan to use it more in the future?

I think I would want to bring more awareness to it. Maybe record myself a little more and the off moments, but I'm not there yet. I just feel ashamed still but that will fade away and I will do it. I think people have a lot of misunderstanding about this disease. That's really frustrating for me. Because you can tell someone you have Parkinson's and at first they are shocked, but now it's one and a half years after diagnosis. They're like, ‘’Yeah, it's Sara, and she has Parkinson's’’. They're so used to it, but I'm still processing it. I don't get used to it. For me, it's like an everyday struggle. For them, it's like, ‘’Oh, she has it’’. They don't really understand how this disease impacts me. They don't know the full effect of it in my head and the visible symptoms, but also the non-motoric symptoms. They're very serious and people don't see that. That's what I want to work towards, that they understand that it affects your social life and everything you do. That's really frustrating for me. Sometimes also at work, they don't always understand and that's really hard. Because you don't want to get special treatment, but you do want a little more space because you're not ‘’normal’’ anymore. Also, they took my driver's license. I now get it for one year and then they extend it every time. Those are all little things but it has a major impact on your mental health and your mindset. It's like a slap in the face. You get from being normal to being disabled in a few months. That's really a lot of process. I would love to help other women and people with this problem because I know how it feels and it's really hard.

What advice do you have for someone recently diagnosed with Parkinson’s?Try to keep your head up, although it's really hard right now. The glass is always half full. You still have a lot of things to do. You still can do a lot of things. It's just we have to limit it a bit. Just do the things you love and don't stop being you. You're just rediscovering yourself. That's how I see it.