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Create your own unique program to manage essential tremor

Reflections on Essential Tremor “Hacks”

The word “hack” has numerous definitions, but one of the more recent comes from urban slang: a quick solution that solves a problem, but does not solve it particularly well, or in a particularly good way.

In fact, there are many “hacks” or that work just fine because they are brilliant, easy-to-use shortcut solutions. For example, graphic designers who want to spiff up their work can benefit from an article called “10 Graphic Design Hacks That’ll Make You a PRO Designer Overnight!”1 Even I, as a doctor, was impressed at the way simple visuals really popped!

I recently saw a TED Talk called “Simple Hacks for Life with Parkinson’s” given by a young woman named Mileha Soneji. I was fascinated. Mileha’s much-loved uncle in India was struggling with his Parkinson’s-related tremors. After careful observation and analysis of his circumstances and needs, she designed two ingenious solutions to help him cope with the embarrassment and lifestyle issues caused by his tremors. One was an elegant looking cup to enable him to drink his tea without spilling it, and the other was an optical illusion placed on the floor that allowed him to walk steadily without a walker. It sounds farfetched, but the video in her presentation convinced me she was onto something important.

I dug a little more deeply into Mileha’s story, and in an interview with her I discovered an insight that applies as much to essential tremor (ET) patients as it does to those with Parkinson’s. She talked about how self-conscious those with tremors can become when they are out in public. They hesitate to employ oddly-shaped or unusual-looking assistive devices to improve mobility, coordination, etc. because these objects are “obvious signifiers” that draw attention to disabilities and differences. As Mileha stated, “My belief is that to reach out to people with special needs we really need inconspicuous products, which can often be provided by really simple solutions.”2 I like this compassionate insight. Clearly, Mileha was able to put herself in her uncle’s place. For those in various stages of ET, there are many products available to help them manage daily tasks like getting dressed, eating, etc. While many patients might long for a magic wand to take away their tremors, aids can help people help themselves – especially if they are designed to not attract curiosity.

There’s no magic wand, but I am grateful that our new Center is equipped with the technology for MRI-guided Focused Ultrasound (MRgFUS) to control ET. Many people afflicted with severe tremors that don’t respond to pharmaceuticals have seen dramatic improvement in their tremor, to the point where life becomes much more normal. While MRgFUS goes far beyond being a hack, it is a brilliant solution.

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1 https://www.postplanner.com/these-graphic-design-hacks-skills-make-you-pro-designer-overnight
2 http://parkinsonslife.eu/parkinsons-hacks-why-the-simplest-solutions-can-be-the-most-life-changing-mileha-soneji-ted/

CATEGORY:
Essential Tremor

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