On Reddit Temporal_Delusion writes: “Man reading your blog is pure depression fuel not gonna lie.”
Sorry that my blog depressed you. My only intention with the blog was to offer information without the medical speak that can be confusing to understanding the problem we have.
TD: “Especially the one mentioning forearm and wrist tremors killing fine motor skills no matter what. Mine is also affecting the wrist movement (up down) and the forearm in the right hand mostly. Testing what you mentioned to be the wing beating position for the first time was dreadful.”
My back and forth rotation of the forearm tremor (pronation/supination) is relatively uncommon in the Essential Tremor population. More common is the left/right movement of the hand (adduction/abduction). The most common tremor in the hand/arm is the up/down (flexion/extension) tremor of the hand about the wrist joint. I use the wing beating position as I can provoke a visible tremor on demand making it easy to measure.
Action tremors, like when you move your hand to point at an object, are stronger than positional tremors such as the wing-beating position. Eating soup with a spoon is also an action that can provoke a tremor. Action tremors are more difficult to measure as you have to remove the ‘action’ component to see the tremor. So I have a lot more work to do in measurement of my tremors.
TD: "It's sad to see that since this problem is relatively rare, there is pretty much no real help in the works one can hope for. I also got tinnitus which is very similar, a lot of anecdotal stuff that helps some, but not others. Once you exhaust the long list of "try this" "try that" and nothing changed, not for the better at least... hope is in short supply."
Essential Tremors are not relatively rare. Learned studies suggest that perhaps as many as 5% of the general population has Essential Tremors. Most of us don’t do anything about it and many general medical practitioners are not aware of it. For all its prevalence, Essential Tremors did not have its own medical classification until 2013. Its ‘big brother’ Parkinson’s gets more attention. Even now, many Essential Tremor studies include references to Parkinson’s. The situation is improving and Essential Tremors is getting more research attention. We live in hope.
There is some, non-anecdotal stuff that helps with ETs. Propranolol, a common beta blocker, can suppress tremors in about 50% of the ET population. There are other drugs that work for some but with a lower success rate and with more side effects. If you have alcohol responsive tremors, 1 drink can give temporary relief. The Cala Trio (very expensive) can give an hour or so relief after treatment for a slightly lower percentage of the ET population.
TD: I'm also somewhat of a realist about things, some call me a pessimist. At 25 years old, I've been on the decline for the past 5 despite best efforts on multiple fronts. The world is falling apart, I just wish I was older, that this happened in my 40s 50s or 60s where I could chalk it up as "expected".
It seems that Essential Tremors is different for each individual. The progression of this condition is one area that is poorly studied. This is mainly due to two factors. First in the world of scientific studies, it is “publish or perish”. To study the prognosis of conditions like Essential Tremors takes time. Time which could be used to conduct less time consuming studies and produce more published papers. Secondly, at present, it is difficult and expensive to conduct a multi-year study of Essential Tremors as it requires a trained clinician to assess the severity of an individual's tremors. I was hoping to address some of the problems of tremor assessment with a multi-sensor device.
TD: What would you use your findings for? Even if you perfected the sensors and have all this data, what will you use it for? Aside from giving visual, quantified feedback on "how fucked we really are", I don't see where this is going.
Let me tell you a little story.
Once upon a time there was this retired IT/Software developer that liked to paint (pictures) and he decided to take an online drawing course; 7 lessons, each comprising three parts. He failed to complete the first third of the first lesson because of tremors in his hand/forearm.
He was super pissed off and after a while he went in search of a solution. Long story short: he "found" the Cala Trio but it cost $3200 + $156/month which was way beyond his budget and it doesn’t work for everyone. Expensive but not technically challenging. Also he found other "interesting" possible approaches to the treatment of Essential Tremors through electrical stimulation.
With the assistance of two fellow techies he finally settled on trying to do what Cala Health had done but with Commercial Off The Shelf technology. It wouldn't be pretty to look at but it should work and if it did it would only cost a small fraction of the Trio. But how do you know if it is working? You have to measure the tremor before and after.
...and there you have it. I need to be able to accurately, impartially, and consistently measure my tremors if I want to experiment with electrical simulation as a partial solution to my Essential Tremors.
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