We meet Monika and Salvatore in Dublin, on the sidelines of a think tank organized by the patient advocacy group Dystonia Europe. Salvatore serves as a volunteer board member there, while Monika has been the Executive Director for several years. Together, they are committed to raising awareness of dystonia—and ensuring that more people affected by the condition find their way to effective treatment.
A conversation about years-long diagnostic odysseys, the fear of one’s own body—and the miracle of being able to do mundane, everyday things on one’s own again.
Monika, Salvatore, before we talk about Dystonia Europe and your dedication to the organization, let’s start with you. How has dystonia shaped and changed your own lives?
Salvatore Caruso: It was the treatment, not the disease, that really changed my life. I have myoclonic dystonia, and my first symptoms appeared when I was about two years old. So I’ve never known a life without dystonia or without symptoms.
The condition has, however, had a profound impact on my life. I grew up in Italy in a very small village in the mountains. The doctors told my parents back then that I was one of only two patients in the entire region. My symptoms—severe, uncontrollable tics, major problems speaking—couldn’t be hidden. At school, the teachers didn’t know what to do with me. When you realize as a child that even adults are completely overwhelmed by you, it really gets you down. You don’t just feel sick; you feel very alone with this condition.
Monika, you have a different type of dystonia—your first symptoms didn’t appear until much later, right?
Monika Benson: That’s right, for me it came on very suddenly. I was just shy of forty, in the prime of my life, and had never had any neurological problems. I was working in the administration of an adult education center in Sweden—and then my head started turning uncontrollably to the left. At first, I told myself it was stress, bad posture, or some kind of muscle issue. But it just kept getting worse.
It was a completely mundane situation in which I truly realized how helpless I was: I wanted to write up some invoices in the evening. And I had to hold my head in place with my own hand and press it into position just to be able to look at the paper at all. I’ll never forget that moment: when you realize you can’t control it anymore—it creates a fear that’s hard for me to describe.
Salvatore, what did you suffer from most as a child and teenager—the symptoms or the stigma?
Salvatore Caruso: That’s the insidious thing about the condition—the symptoms are often particularly severe in situations where they’re especially unpleasant: When I was under stress, meeting strangers, or feeling nervous—that’s when the tics became very intense. At home, with people I knew well, they were much less so. And to those who don’t understand, it looks like: He’s doing that on purpose. Or: “He’s just being dramatic.” You start hiding yourself away. You stop going out. And then, paradoxically, the stress of not wanting to stand out makes it worse again. You’re stuck in that cycle and can barely get out of it.
As a young man, I developed my own strategy for this. When I wanted to meet new people, I did it online first. There, I could have a normal conversation. The other person experienced a normal conversation—and didn’t see me. And then at some point I said: Listen, if we meet and I’m nervous, I might get some tics. Most people were surprisingly relaxed about it. When someone gets to know you as a person before they see the illness, it’s just different.
“Neurological movement disorders must be incorporated earlier and more comprehensively into the curriculum and continuing education of general practitioners.”
Monika, your friends and family all knew you before you developed symptoms—did that help?
Monika Benson: Yes, but even so, after my diagnosis, I often didn’t really want to be around people anymore. I always thought everyone was staring at me. I became more introverted, canceled plans, and asked myself: Is this how it’s going to be for the rest of my life?
What really pulled me through was, above all, a very special encounter. About two years after my diagnosis, I did some research on my own and found a physical therapist at Malmö University Hospital who specializes in dystonia. I went to her office—I wasn’t in good shape. She looked at me briefly and said, “Monika, this will be good.” That stuck in my mind and stayed with me throughout my entire rehabilitation. And she was right. It showed me how much encounters with people can change everything—and that’s exactly what we want to make possible with Dystonia Europe.
With a rare condition like dystonia, meeting other people with the condition is probably the most crucial thing, isn’t it?
Monika Benson: Yes, because at first you really think you’re the only person in the world who feels this way. That’s why I’ll never forget the evening I attended a local patient meeting for the first time. There were maybe ten people in the room; and then a woman walked in whose head turned to the left just like mine. I was so happy in that moment. There’s a sister. I’m not the only one after all. That very same evening, I told the organizer: I want to get involved. That was the beginning of it all.
Salvatore Caruso: I also met other people with dystonia for the first time at Dystonia Europe—and for the first time, I no longer felt alone with this disease. Although, that’s not entirely true: I had known one patient for a very long time: my father.
Your father?
Salvatore Caruso: Yes, his symptoms weren’t as severe as mine, but he had tics too. He lived with it and worked as a police officer. He never had an official diagnosis. In the ’70s and ’80s, doctors recommended electroshock therapy for him—because no one knew what was really wrong with him. The word “dystonia” never came up in his life. It wasn’t until I received my diagnosis that he pieced it together. I mention this because it helps you understand what a proper diagnosis actually means. For my father, it never came.
Monika Benson has been the full-time Executive Director of Dystonia Europe, the European umbrella organization for dystonia patients, since 2013. Prior to that, she served as the organization’s volunteer president from 2007 to 2013. After being diagnosed with dystonia herself shortly before her fortieth birthday, she made it her life’s mission to advance education about neurological movement disorders. Her focus is on advocacy at the European level—with the goal of raising awareness of the disease and drastically shortening the often years-long diagnostic process.
So your father isn’t the only one whose dystonia wasn’t diagnosed, or wasn’t diagnosed until very late. Many of your members report years-long medical odysseys. What’s going wrong here?
Monika Benson: That’s right; for many of our members, it’s five, eight, fifteen years. That can’t be right.
The problem is that the early symptoms are so vague—an unnatural shrugging of the shoulders, a cramp while writing. Many go to their family doctor and are sent away with a suspected orthopedic issue. Or—and this is the worst—they end up in psychiatry because someone thinks the cramps are psycho-somatic. We even hear of cases where patients only received a diagnosis through a chance encounter—someone they met at a doctor’s office or a restaurant who had the same symptoms.
Salvatore Caruso: My father is the clearest example of this. He has the same disease, has lived with it for decades, and was never diagnosed. That must not happen anymore today.
What specifically are you calling for?
Monika Benson: That medical education changes. Neurological movement disorders must be incorporated earlier and more comprehensively into the curriculum and continuing education of general practitioners. The family doctor doesn’t have to know everything—but they must recognize the warning signs and refer patients immediately. The sooner the diagnosis is made, the sooner treatment can begin.
Salvatore, in your case, it took some time to start treatment despite an early diagnosis—but in the end, you underwent deep brain stimulation (DBS)—a procedure in which electrodes are placed deep in the brain to deliver targeted electrical impulses that regulate abnormal movement. How did that come about?
Salvatore Caruso: It was 2018. I had just written a book about my story. Then someone reached out to me on Facebook—someone with very similar symptoms who told me he’d had deep brain stimulation and how much it had changed things for him. That was the first time I’d heard of it.
Another four years passed before the surgery. I was going through a very difficult personal phase—the end of a relationship, a young daughter, a lot of uncertainty all at once. I needed time. My way of preparing: I kept imagining what life might look like if things got better. I held onto that image until it was stronger than the fear. Eventually, I was ready. I told myself: My life begins once this is behind me.
The surgery took place at the Istituto Neurologico Besta in Milan. Under general anesthesia—I was asleep, and that was a good thing. With my symptoms—those uncontrollable movements—being awake during the procedure would have been almost unimaginable for me, so I was really glad I didn’t have to be. And I’m grateful that, thanks to precise planning and imaging, it was possible to significantly improve my condition.
And how does life after DBS surgery look like? What has changed?
Salvatore Caruso: Everything. For years, I couldn’t drink from a normal glass. Today, I pick up a glass, bring it to my mouth, and drink. Just like that. It sounds like nothing. For me, it’s something I’m grateful for every day.
Salvatore Caruso Is a volunteer board member at Dystonia Europe as well as the Italian Dystonia Association. He has lived with myoclonic dystonia since early childhood and experienced years of stigmatization in his hometown in South Tyrol due to the visible symptoms of this disease. Through deep brain stimulation, he regained his physical independence and quality of life. Today, he uses his personal story to encourage those affected and to advocate for faster, more personalized and more transparent patient care.
Many patients are afraid of a procedure deep in the brain. Today, doctors can use software to show the planned procedure on a precise 3D model of the patient’s individual brain. Does that help?
Monika Benson: Yes, definitely. When you just hear, “We’re going to insert electrodes deep into your brain”—that sounds threatening at first. But when the neurosurgeon can then show on the screen: Here is your brain, here is our target, and we’re going to get there by following this exact calculated path—that completely changes the situation. It makes tangible what would otherwise remain abstract. And it gives the patient the feeling: I understand what’s happening here. I’m not just at the mercy of others.
Salvatore Caruso: Absolutely. Many patients go into this procedure with a lot of uncertainty. When you can actually see how it’s planned—what the 3D model looks like, where the electrode will go—it makes the whole thing much more reassuring and your trust grows. As a patient, there’s always an element of trust involved, even when you know how carefully everything has been planned. But being able to see it really does make a difference.
Monika, Salvatore is a clear example of the success of deep brain stimulation. You yourself are being treated with botulinum toxin injections and targeted physical therapy. Is it also important to you as an organization to continually highlight different approaches?
Monika Benson: Yes, because dystonia is so varied. What helped Salvatore and gave him his life back isn’t the right path for me—at least not right now.
But I know that can change. And knowing that deep brain stimulation is an option should my condition ever worsen—that’s very important to me. It’s a kind of safety net. And that’s exactly our message to the public: Every patient needs to know what’s available. There are many people with dystonia who have never heard of deep brain stimulation—and who could benefit greatly from it. Closing this information gap is one of our most important tasks.
Dystonia Europe is the European umbrella organization for national dystonia patient groups. Founded in 1993, it today brings together 21 member organizations from 20 countries. The non-profit, based in Belgium, connects patients, healthcare professionals, and political decision-makers at a European level — working to close gaps in care, advance research, and improve medical education. More information at: dystonia-europe.org
Monika, Dystonia Europe has now become your profession, but you’ve also been volunteering for years. And you, Salvatore, do all of this in your free time. What drives you?
Salvatore Caruso: When you’ve experienced firsthand how dark things can get—and then see what a difference good therapy makes—you want to give something back. After my surgery, I wrote down my story and submitted it to Dystonia Europe. That was the beginning.
But there’s something else that drives me even more: My daughter also has dystonia. Everything we do here, I do with her in mind. What I want to tell other patients: You are not alone. Help is available. Don’t give up hope.
Monika Benson: For me, a terrible diagnosis has, over time, become my life’s work. I was first president, and since 2013 I have been the full-time Executive Director of Dystonia Europe. I can hardly imagine doing anything else.
And sometimes I think back to that sentence from the physical therapist in Malmö—“Monika, this will be good.” I think that’s what we’re trying to pass on. Through every campaign, through every doctor we explain to that dystonia isn’t a back problem—maybe for some patient somewhere in Europe, that’s the moment when she thinks: Okay. This will be good.
The statements made by the interviewees during this interview represent their personal opinion and experiences. These statements may not be supported by scientific evidence or peer-reviewed research. For verified information about any devices mentioned, please refer to the manufacturer’s official documentation or seek clinical guidance.
