James Kissel's ET Journey

James Kissel's ET Journey

I have mild to moderate tremors in my dominant hand and was recently medically diagnosed as having Essential Tremor. I’ve had them for a long time but a beta blocker prescribed for my hypertension mostly kept them out of sight and out of mind.

In the spring of 2021, I decided to improve art making by taking an online drawing course. I failed miserably! My Essential Tremor made it impossible to complete the first assignment. I got mad and my tremors got worse. Eventually I decided to do something about my tremors.

Yes, but what?

At that time, all I knew was the name Essential Tremor, and it made eating soup with a spoon as difficult as eating soup with a fork. In my mind, I declared war on my Essential Tremor. Melodramatic for a retired IT consultant/software developer to declare war on a neurological condition that he knew nothing about and had no background or experience with.

I am one of the lucky ones, as if anyone with Essential Tremor can be called lucky. My tremors are responsive to both beta blockers and alcohol. Perhaps I should be content with my condition and just get on with my life and take drugs when I need steadier hands. But I’m not content. I’m very much a malcontent on the subject of Essential Tremor.

In the search for a non-drug solution

I wanted a non-drug solution to my shaky hands. I wanted to enjoy eating soup without the worry of making a mess on myself and the area around me. I want to be able to draw a line without squiggles on it. I needed to reduce my hand/arm tremors by at least as much as 40mg of Propranolol would.

At this point of the narrative, the inspirational music begins to play and we see the hero flanked by the phrase: “Fortune favors the brave” or “Who dares win”. Never mind the music. The most befitting phrase should probably be: “HC SVNT DRACONES”, here be dragons. I was going exploring at the edge of my known world and there wasn’t a Michelin Guide to Essential Tremor!

General Sun Tzu said, “Know thy enemy”. When I started I knew three things about my enemy:

  1. Its name is Essential Tremors
  2. …

I didn’t know anything about Essential Tremor. I had no medical experience other than a First Aid course. I didn’t have any idea where to start or what to start working on or even what exactly I wanted to accomplish.

DIY neurostimulation device

March 2021 I asked on a Linux forum I hang out on, if anyone knew of some software that would filter out my tremor when using a mouse. Away from that
discussion, Anthony R, Alex, and myself gelled into a small working group. It only lasted a few months but brought focus on the need to be able to record and measure tremors.

Credit where credit is due, Anthony R did mention Cala Trio several times. If I had paid attention to that reference, I might have saved myself several months of semi-fruitless research.

After many months of exploration of ‘Terra incognita ET’, the research paper Noninvasive neuromodulation in essential tremor demonstrates relief in a sham‐controlled pilot trial hinted at a potential treatment for ET. Electrical stimulation of the Median and Radial nerve can invoke activity in the ventral intermediate nucleus (VIM) of the thalamus.

The VIM is thought to be the source of tremor activity. Perhaps stimulation of the nerves in the wrist could reduce tremors in the hand/forearm. Again, I must give credit where credit is due. Anthony R, very insightfully, had said, “A glove to befuddle the nervous system into reducing the tremors it creates" should be on my ‘to do list’.

Further research uncovered the “Cala Trio”: an FDA approved device for the treatment of Essential Tremor. The published data indicates that it has about the same success rate as the best pharmacological treatment for Essential Tremor. It is non-invasive, has few if any side effects, and the treatment can be stopped if needed. The one big showstopper is that the Cala Trio is quite expensive to purchase and requires a substantial monthly subscription.

Time for a quick review:

  • I had relatively complete information on how it technically worked
  • Microcontroller are readily available and not expensive
  • I had worked on an embedded system so understood their limitations 
  • …and most importantly, I want to do this!

The Citizen Scientist in me decided to build my own Essential Tremor treatment device using Commercial Off The Shelf (COTS) hardware. Remember, “HC SVNT DRACONES”. There were a number of software and hardware dragons to confront and overcome. Eventually the stimulus device came together. Inexpensive COTS hardware, about $200 USD, controlled by an Arduio compatible microcontroller and programmed in ‘C’. Most important result of all this effort for me was when I tested it on myself, It works! Yes, after a little as 15 minutes of electrical stimulation, the peak amplitude of my forearm tremor was reduced by almost 2/3!

Will it work for you?

I cannot answer that. You will have to dust off your Citizen Scientist persona, assemble your personal copy of the hardware, load the tremor software onto the device, and test it on yourself to answer that question.

You can read more about me and my tremors on my blog: HERE. 

Technical details of my neurostimulation device on reddit: HERE.

PS: AMA (Ask Me Anything)

Author: James Kissel is a retired Internet and software consultant and a self-funded Essential Tremor researcher.

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