Episode 6 – transcript

Transcrived by Margot Gerritse and Eline Pollart. Klik hier voor het audiobestand.

Contents

Patreon

Dear listeners,

Before we begin the episode, I’m going to be rude and ask you for money! I guess this is especially meant for Dutch listeners, but if you happen to be an international billionaire, well, I’ll m grateful for your contribution, too.

This podcast is a labor of love and if you didn’t know: podcast making can be quite expensive. Therefore, ee are super happy with our patreon sponsors and… WE NEED MORE OF YOU! Visit patreon.com/ziekdepodcast to donate to our show if you’re interested. Thanks a lot.

Introduction

Welcome to Ziek. My name is Tamar Doorduin and I’m your host, reporting from the land of the ill. I usually present this podcast in my native tongue, in Dutch, and have a much fancier opening sentence including the Dutch expression ‘in de lappenmand’, which literally translates to “In the rag basket”. The logo of this show also comes from this expression. But well, here I am speaking to you in my rusty English, because we have a foreign guest on the show. Today’s guest is the Swedish Sara Riggare and she will be talking about what it’s like to get your first Parkinson’s symptoms on the age of thirteen. She has a wild story with lots of doctor drama which we will focus on today, but actually, this is part of a two-episode series. In the next episode, Sara will be talking about how she took her own experiences a step further and became a badass patient advocate, or, in Swedish, a spetspatient.

But that’s for next episode. First, it’s time for Sara to tell the story of her diagnosis. I’m so thrilled that Sara wanted to speak with me about this and I think you will love her story!

Housekeeping

Just a little bit of housekeeping before we start.

First of all, Ziek de Podcast has been quiet for a while and you might have wondered whether there was actually ever going to be an episodes again. Or at least I hope you missed us! In the end of this episode I will tell you a bit more about why it took a while and what you can expect in the future.

Also, we are skipping the #Dokterdrama and #Welldonedoctor parts of the show this episode and next, but don’t worry , they’ll come back again!

Now let’s hear Sara’s story.

Interview met Sara Riggare: First symptoms

Tamar: First let me check, how are you today? Do you have a good day?

Sara: Yes I’m good. I’m good today.

Tamar: Is it a thing for you with good and bad days?

Sara: I do get good and bad days, but they can also vary. So, even if a good day starts bad it can become good. And the opposite as well. Really just hit and miss, in a way.

Tamar: Yeah, that is the same for me.

Sara: I just try to go with the flow, more or less.

Tamar: Yeah that is really something that you have to do when you’re sick.

Sara: Yeah

Tamar: Right now you are very much a patient advocate, and you are very assertive and you are doing a lot of stuff. But when you were younger I guess that you probably were a bit more insecure with the medical world and more impressed with the medical authorities,

Sara: Definitely, yes.

Tamar: So, can we go back in time, and can you tell me a bit about that, from the first moment that you felt that something was wrong in your body?

Sara: I was 13 years old in 1984 and I was visiting relatives of mine in the north of Sweden with my mother and my brother. And we were attending a concert at the public open house, like a communal building. And my relatives were playing the violin, and accordion, and singing.

*music plays*

Tamar: Oh wow, very Swedish.

Sara: Very Swedish, yeah. And everybody in the room clapped and tapped their feet in rhythm with the music. And I wanted to do the same. And de clapping was ok. But when I tried to tap my foot in sync with the music, I could only do a few taps at a time, before I had to stop and restart. It felt like the signals couldn’t go from my brain to my foot, literally. That is actually what happened, but I didn’t know that at the time.

*music continues*

Sara: That was the first time that I can remember that I noticed something was not working the way I expected it to.

Tamar: How did that feel? Was it frightening?

Sara: It was, I guess a bit surprising. But also, I think I felt a bit of shame, because I realised this was something that was off, it wasn’t like ‘normal’ people, if you know what I mean. I didn’t say anything to anyone and I tried to sort of hide my problems in a way.

Tamar: That is so interesting.

Sara: I didn’t want to be different, I guess.

Tamar: I really recognise that.

Sara: Yeah I  can imagine. I’ve come to realise that that is a very sort of common first impression for a lot of people with diseases or functional variability or something similar.

Tamar: So strange, because when you think rationally, or from the situation where we are now, it’s kind of strange to think that you would do that, because it’s hey, something weird is happening. But it’s not your first reaction.

Sara: No, it also made it made it more complicated that a was a teenager, because the teens is a very…, a lot of things happen both in your body, in your mind and your life, and everything is very confusing. And you are trying to make sense of things.

Tamar: I just remember from being a teen that all that I felt the whole time was that I kind of had to hide myself and be this cool person.

Sara: You’re trying to find your own path, and fit in, and be one in the group and if you’re different maybe they won’t accept you, right?

Tamar: So basically it’s what you’re doing all the time. So when something weird happens in your body, it’s like the first instinct.

Sara: Yeah like you want to fit in.

Tamar: So, how did that change? Did that happen more often in the next couple of days? Or was it a single incident?

Sara: I just remember the single incident. Over the course of the next, maybe year or years, more things sort of emerged, in situations or things that I found difficult doing. Like buttoning small buttons, or taking on my socks. Like those fiddling small movements with my fingers and hands, they also could also cause me some problems. And I was slow in my fingers; slow movements. And my handwriting was slow some times. It could vary, but sometimes if I tried to write something with handwriting very fast, I couldn’t do it for long time. I could only keep high speed very briefly. And also some times when I was walking, I would sort of stumble, one of my feet would sort of drag a bit, and I also didn’t swing my arms when I walked sometimes.

Tamar: You kind of felt like you wanted to?

Sara: No, I didn’t notice it myself. I was something someone told me I didn’t do. I could just feel that it was difficult walking. I did not understand why. And balance was off sometimes. And looking back now, it’s sort of really really classical of early Parkinsons symptoms. But it took me 18/19 years before I was correctly diagnosed.

Tamar: That is crazy. That is so long.

Sara: Yeah it is a long time.

Interview met Sara Riggare: Diagnosis

Tamar (voice over): So what Sara tells me here is that she tried to hide the first signs of her illness. And actually for the first three years she didn’t mention it to anyone. Then her mother started noticing something was of.

Sara: Yeah my mother made me to see the school physician. And the school physician referred me to the neurologic clinic.

Tamar: How did you feel about that. Did you feel more shame?

Sara: I‘m not sure. I was reluctant. But I couldn’t get out of it I think, in a way. Teenagers, and mothers.. I did it because I know if I didn’t there would be trouble. So I don’t think I really wanted to go, but I did it anyway.

Tamar: Yeah I can imagine.

Tamar (voice over): The school physician referred Sara to a neurologist.

Sara: So, I went neurologic clinic at the big hospital in Stockholm. I saw the neurologist and he did this test, I didn’t know them. But it was the first time, so I did this ‘finger to nose’ and ‘follow his finger with my eyes’, and this neurological tests. And also walking up and down the hallway, as well as, this pull test: you stand in front of the man and they pull your shoulders. And they see how you react in you steps. These are certain things and there are other things. And these are some key test that neurologist do. And then he told me that there was nothing wrong with me. That what I was experiencing was all in my head.

Tamar: That’s quick.

Sara: Yeah. I can understand why he did that. He didn’t even dream about diagnosing a 16 year old with Parkinsons. You really didn’t know that Parkinsons, you knew, but it wasn’t as well known, it is better these days. But still today Parkinsons is something that very few consider as a diagnosis for a teenager.

Tamar: Yeah, my image of Parkinson is older people.

Sara: For me as well. And I still get from healthcare personnel: “you are too young to have Parkinsons.” And now I’ve had it over 30 years. So now getting I’m a bit fed up with it.

Tamar: Yeah, I can imagine. But was it good that the neurologist didn’t know that it was Parkinson, from the tests they did on you?

Sara: I don’t know actually. If he could have or not. But with the things that my mother told him, and all the stuff. I mean, in 99 cases out of a 100 when a teenage girl is going to healthcare for not very clear symptoms, it is in their heads.

Tamar (voice over): When listening back to the interview. I was actually a bit startled about what Sara says here. Would it really be true that in 99% of the cases, young women who are referred to a neurologist are complaining about things that aren’t really there? That they sort of made up? Of maybe she means that in 99% of the cases their symptoms are psychosomatic? With all that we know from research about gender bias in medicine, I actual wonder if Sara Riggara might have internalised this gender bias in medicine to herself, and think of herself as an exception.

When I later asked her about it she said: yes, that is indeed the case, it came from a place of internalised gender bias and she actually felt a bit ashamed of it. Well, absolutely no problem dear, we all have our internalized stuff that we need to deal with.

Sara: But I happened to be the one of the one hundred I guess. But the thing is, when I left there, because I knew there was something off in my body, I did know that, because I knew there were things I couldn’t do. So I felt that I hadn’t been taken seriously. I knew that he was wrong. And this comes back to your question, if I was as assertive as I am now, I definitely was not. Because he was the expert, he was the doctor. I didn’t know, but I knew something was wrong. But of course I didn’t tell him. I just felt very very disappointed and mistrusted when I left.

Tamar: Was it that you trusted his authority that what was wrong with you and that you were kind of doubting your own experience, of was it just like: I know that he is wrong, but I don’t know what to do about it?

Sara: That is a very good question. Strangely enough I think it was a bit of both.

Tamar: That is often the case.

Sara: But really, just the thing is, since I read what he put in the healthcare record, years and years later, he actually wrote, he didn’t write what he told me.

Tamar: What did he write?

Sara: In the healthcare record he wrote potentially, or possibly an hereditary form of dystonia. But that is not what he told me.

Tamar: That is so interesting. I here that more often actually that that happens. But it is so strange. Why do you think that he told you something else than he wrote down?

Sara: I think he was trying to protect me. I think he was trying to protect me from worrying. Because it was possibly, it wasn’t even a likely. I think there is an element of trying to protect me and sort of make me get on with my life.

Tamar: I see, if it remains a problem she will probably get back. And then I will at least have written it down and get back to it.

Sara: Yeah. Exactly.

Tamar: I personally find it a back difficult. In my experience it takes so much to actually go back to that person. Because you don’t want to be… But you did!

Sara: Yeah, two years later my mother send me.

Tamar: Three years later?

Sara: Two I think. I don’t remember exactly. Maybe neither. I have it in the healthcare record. But I  don’t remember the exact date. And my mother had been in touch with him over this course. But this time he actually said you probably have a hereditary for mobile dystonia. I was given a diagnosis that time. But then I didn’t trust this man, of course. I didn’t feel he knew is work probably. So I actually found a different neurologist

Tamar: How old were you then?

Sara: 19 years

Interview met Sara Riggare: After diagnosis

Tamar: So you were 19, and you didn’t really trust that first neurologist. So what did you do? You wanted a second opinion, or?

Sara: No, I just wanted a different neurologist. I did know the diagnosis, but I wanted a better person to..

Tamar: to communicate with.. to work with..

Sara: At that time, and there still is actually, there is a booklet you can get at the pharmacies. Where you have doctors in different specialities; names and phone numbers. Now you get an online book of course, but you didn’t back then. This was 1990/1991, sometime around that time. And so I got this booklet and I flicked through it, and I remember I called a few clinics before I was given an appointment with this neurologist.

Tamar: And then he started treating you? Or like, what happened?

Sara: He did of course examine me and formed his own opinion about the condition I had. But he confirmed the diagnosis that the first one had given me, dystonia. Which is both Parkinsons symptoms but also a group of diseases of its own, so it was the group of diseases they thought I have. So I wasn’t given a treatment for a year of so. Because I didn’t feel I needed it. I want to know what I have, so I can talk about it and learn more. But of course when I had a name for it, I could search through library books..

Tamar: Like you did in the ninetees..

Sara: Yes. And I basically, I love books, I read and read and read all since I could read. I knew the library from top to bottom. So I went into the medical section. I read books there. When I had a name for it I could search information.

Tamar: How did it feel, like, was it for you comforting to have a name? Was dystonia was it a good label for what you were experiencing back then? Did it help you cope?

Sara:     It did, but dystonia is a fairly diverse group of diseases. You can have vocal dystonia, which actually only affect the muscle group that allow you to turn your neck to the left or right. You can also have writer’s cramp, which is physical cramp in your hand. I couldn’t relate to those kind of types of dystonia. But then there was also generalized dystonia, involving the whole body, which was what I had. It is really rare and unusual, so there was not a lot of information about it. I joined the patient organization for dystonia, the Swedish dystonia association. I was quickly recruited to the board of the association.

[Voice-over Tamar:]       Sara became treasurer for the board, but she also started to organize all sorts of events for the organization. She also organized the yearly conference.

Sara:     It was during one of those [events] that my world changed. We had a neurologist coming to the yearly meeting to talk about the research into dystonia, especially into vocal dystonia. I didn’t want to take up his time at the meeting, since I was the only one interested in this generalized dystonia, so I made an appointment with him at his clinic in Stockholm for the purpose of learning more about the current research into generalized dystonia.

[Voice over Tamar:]       What Sara is about to explain is. Really. Bizarre.

Sara:     I went to see him in 2003. My daughter was a few months old. I came to the appointment at the clinic and he had this doctor in training helping him, which was part of the visit as well. Then he started examining me. He gave me these neurological tests that I had done so many times by then.

Tamar: Wait a minute – you just came there for learning and information. Did he misunderstand the purpose of your visit, or was it that he saw something…?

Sara:     I actually don’t know. Again, at the time I was 32 so I was literally twice the age compared to my first visit. Out of respect for the medical profession I didn’t ask in a situation like this. You’re not in a position to be assertive. I just did what he said, I didn’t question anything, I just went along – after all, he is the authority. When his examination was finished he told me: “You don’t have dystonia, you have Parkinson.” Then he literally said: “Have a nice day” and he sent me on my way.

Tamar: Wow. What did you think about that?

Sara:     My mind exploded, I think. It was a huge shock, I didn’t expect it and it came out of nowhere. I didn’t see it coming and I was just in shock. I went home and talked to my husband. I felt a bit guilty because my ordinary neurologist didn’t know I had done this.

Tamar: [Laughing] Did you feel you cheated on your doctor?

Sara:     I did, I did! I didn’t want to go back to this guy, so I had to tell him. He probably felt mixed emotions as well. We didn’t talk about it in so much detail, but I would assume he felt that the other specialist had won over him. He did the right thing, which was confirming the diagnosis with a specific scan. He sent a referral for that and I had it later that year , which confirmed the Parkinson’s suspicion.

Tamar: How did you feel?

Sara:     Very, very confused. I felt as if I fell down into a black hole. That’s a bit strange – if you think about it my symptoms didn’t change, they were the same before and after. The treatment I received didn’t change either. A few years prior to this, my ordinary neurologist had read an article about something called dopamine responsive dystonia. That’s dystonia that is treated with Levodopa with a good result. I tried that and it had a good effect, so that confirmed his theory that I had dopamine responsive dystonia. I already had the right treatment. My symptoms were the same before and after, my treatment was the same before and after and the rate of my progression didn’t change by the fact that it was called something else. What changed was my perception.

Tamar: Parkinson’s sounds so severe and drastic.

Sara:     Dystonia was something that no one had heard of, so if I told people I had dystonia they started asking questions. I couldn’t give them a quick answer and that made me reluctant to talk about it. Not everybody with dystonia gets worse, it can ever disappear.

Tamar: Did you have the hope that that would happen to you too?

Sara:     Of course I had hoped it, you never know. But Parkinson’s is a progressive disease, the only was is down. I wouldn’t say that now, because there’s a lot you can do, but I didn’t know that then. Especially since medical professionals, even to this day, tell people with Parkinson’s disease that in 5 years time they will be in a wheelchair. My doctor didn’t tell me that, but he told about having to adapt and having to be prepared. It wasn’t a positive spin. That’s a difficult balance for healthcare professionals to find as well, considering that it takes so long for healthcare to take up and use the results that research finds. It takes almost 20 years for 50% of healthcare to be adapted to research results. Considering that, healthcare is always lagging 20 years behind. In research, Parkinson’s has a much more positive outlook that in healthcare. Since patients barely read any research back then because there was no Internet yet, their outlook on their disease was largely shaped by healthcare professionals. So was mine, that’s why getting the Parkinson’s diagnosis felt like such a hard blow compared to the dystonia diagnosis. It kind of felt like my life was over. I was literally thinking at the time of the special scan: “Okay, my daughter has just started walking around the same time I will stop walking.” It didn’t turn out to be that way, luckily enough. Now she’s 15 and I’m still walking!

Tamar: So the ideas that you got back then were not true, actually.

Sara:     I want to say that I’m actually happy that I wasn’t given the Parkinson’s diagnosis. You know how they say in Swedish that the bomb shouldn’t be able to fly theoretically, but they don’t know that so they’ll fly. I sort of compare myself to that expression, because I didn’t know that I shouldn’t be able to do the things that I did, but I did them anyway before I had the diagnosis. When I got the diagnoses, I knew that I could do them so I kept doing them. It’s an advantage I had.

Tamar: How did it progress from there? Were there any other challengers you encountered then?

Sara:     Of course there were challenges and there still are. I’m not saying it’s easy, but the work I’ve done has been worth it because it has given me so much more than I put in. There are things I now choose not to do. I don’t ride a bicycle for instance because I’m not super comfortable in traffic, for example. My main problem with my Parkinson’s now is my freezing of gait. From the outside, it looks strange. Before I had it myself I thought it looked very peculiar. Someone is walking and they literally freeze to the ground, like their feet are glued to the floor. They just don’t move. It can happen when crossing a road, for example, which is dangerous. It’s triggered by stress. That’s my main problem – I would prefer not to have it, but it’s manageable. I usually have a cane with me when I walk outside. Not so much for balance but more as a marker that I have a problem walking. That way less cars will honk their horn at me when I get stuck on a crossing.

Tamar: Now that I think about it, I hear from so many people who use a cane that way. I just wonder how many people there are left who use a cane for its intended purpose! It’s almost like a sign saying ‘I am disabled, be careful’.

Sara:     It’s a license to stumble, so to say [laughs]. I would prefer not to use it, but it’s actually less traumatic than I thought it would be. That’s something that I found very often: the perception of how bad it’s going to be restricts you in different ways. For me, the actual experience has always been less intense; worrying about it is actually worse than experiencing it.

Closing words

Tamar: Thank you all for listening to this first part of the mini series about Sara Riggare. If you enjoyed listening, I think you will love the next episode even better, in which Sara talks about her patient advocacy and how to right all the injustices in how chronic patients are diagnosed and treated.

Future of the podcast

Tamar: So I promised to tell you a little bit about what’s been going on behind the scenes of Ziek de Podcast, and why it took so long to have a new episode out.

Basically, it just continues to be a lot of work to edit each episode. This has a lot to do with the way I work right now: I record long, in-depth interviews and then spend weeks editing them. I’ve thought about this a lot as my motivation started to drain, and also discussed the problem with Eline, who is currently my assistant for the podcast. And guess what: we came up with an idea! After the summer, we are going to start with a new format of the show. We’ll keep you posted about this!

First though, there are some episodes left to edit and they will hopefully follow in the coming weeks.

Thank you all so much for your patience and for sticking around! I love the listeners of this show, you all seem to be so committed. I even hear from listeners with severe ME who listen to each episode in bits, as listening to the whole thing at once costs too much energy – or too many spoons, as we say in the chronic illness community.

I am grateful for your support and will soon come back with a show that will hopefully come out more often and may be even more fun to listen to.

Credits & Outro

Tamar: Thanks to Sara Riggare for this interview. This show was produced and edited by me, Tamar Doorduin. Paula Lina contributed to the editing process and Eline Pollaert assists me in making the show. Margot Gerritse and Eline Pollaert transcribed the show to make it accessible to people with a hearing disability.

You can find our show on Spotify, Apple Podcasts, Stitcher, Soundcloud and so many other platforms. If you want to help us get more people to listen, you can do that by spreading the word: tell everyone you know about this podcast! It also helps a lot if you leave your review on Apple Podcasts, which can actually be done in a second, just by clicking the number of stars you give us. In Spotify you can help us rank higher simply by subscribing to the show.

You can follow us on twitter, facebook and Instagram, or visit the website: ziekdepodcast.nl.

Thank you so much for listening!