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The emotional intelligence of being sick

Looking around I have noticed a lot of Paraneoplastic sites that are heavily medical with scientific terms that are overwhelming and scary. There are very few sites that deal with the emotional aspect of the illness. I got ill suddenly. I had 2 viruses back to back, then within 3 months I’d lost my balance completely. I didn’t know or understand why it had happened to me so I read up about autoimmune diseases and I thought I had M.S., which was scary but manageable for the most part. I struggled with not being able to work, with not having the energy to do what I needed to do. I had responsibilities and a life. I had so many questions. A few months later I was finally diagnosed with PCD (Paraneoplastic Cerebellar Degeneration) and to be honest I was almost relieved to get a diagnosis because I was so ill. To...

Flat and Fine With It

In September 2016, nine months after my neurological condition was diagnosed, doctors biopsied a swollen axillary lymph node that they found with a PET/CT scan. It was a small procedure where the doctor used a core needle to remove some of the suspicious tissue under local anaesthetic. A day later, my mother told me that she’d been diagnosed with breast cancer. I don’t remember how long it took to get the results, but I remember the news being bittersweet. Because of my Paraneoplastic Syndrome, I was already resigned to the fact that cancer would probably show up eventually. In fact, the only successful neurological treatments I’d read about included treatment for cancer as well. In a way I was almost relieved. My neurologist informed me of the cancer. His official report was in Dutch, but according to Google translate it read: “Conclusion: lymph node biopsy right armpit: localization large cell...

The Future is Silent

The AlterEgo, a headset device created by researchers at MIT’s Media Lab, lets you talk without speaking. It uses electrodes to pick up neuromuscular signals in your jaw and face that are triggered by your internal voice, the voice inside your head when you read something. The signals are sent to a machine learning system that associates certain signals with certain words, and replies are sent through an earpiece which transmits vibrations through the bones of the face to the inner ear. The researchers’ goal is to make interacting with artificial intelligence assistants, like the Amazon Alexa, Apple HomePod or Google Home, less embarrassing and more intuitive. But the idea of being able to use an AI assistant without verbalisation is also intriguing from a medical perspective.

One of the symptoms of my neurological disorder, Paraneoplastic Cerebellar Degeneration, is dysarthria, or difficulty speaking. The muscles in my mouth are weak, which

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