An Essential Tremors Moonshot?

 After a few weeks, our small Essential Tremor working group settled on the first two projects we would work on. We first identified the need to be able to accurately measure tremors before we started to explore any treatment options. The online scientific literature available to us seemed to indicate some shortcomings in the area of measurement of Essential Tremors.

There is a well established consensus that about 90% of people with ETs experience tremors in the hands and arms. Astonishingly, we could only find one paper that accurately measured tremors in all 7 DOF (degrees of freedom) of the shoulder-elbow-wrist. Most studies that measure tremors are limited to 1 or 2 measurements.  Additionally almost all of these studies are limited to measuring positional tremors.

Now I don’t know about you, but I am not particularly concerned that if I hold my left arm in the “wing-beating” position, I can trigger a Pronation-Supination tremor in my forearm.  What bothers me is putting toothpaste on the tooth brush. An Action Tremor.  Or eating soup with a spoon which I now find impossible.

Action Tremors or Kinetic Tremors that affect the Activities of Daily Living (ADL) are the tremors that we should care about the most.  In approximately 95% of cases these kinetic tremors are more severe than positional tremors.

Why then do most ET studies measure Positional Tremors?  Why?  Because it is easier to measure Positional Tremor.  That is not entirely correct!  It is much more difficult to measure Kinetic Tremors.  We need a moon shot on measurement of Kinetic Essential Tremors.

So far we have one accelerometer/gyro combination sensor integrated into a data logging software package that records to an SD card.  This first test rig was built using Commercial Off The Shelf (COTS) hardware, two Open Source Software packages and a tiny amount of custom written software. Our first test was to record about 35 seconds of my Pronation-Supination forearm Essential Tremor.  The data was processed by Google Sheets to  produce the following chart.

The sensor was mounted on the back of my hand with a Velcro strip holding it in place.

The Blue x-axis is parallel to my fingers when they are extended straight out.

The Red y-axis is in the plane of the hand and parallel to the wrist joint

The Yellow z-axis is vertical to the hand.

In other news, the global chip shortage is real!  We have been waiting for several weeks to purchase some additional sensors.  Twice they came into stock but were sold out before we could place an order.  We now have secured an order of these sensors and will start to build our next prototype SensorGlove in the next week or so.

Let’s hope this doesn’t take a decade like it did to reach the moon.

(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)

Essential Tremors and a visit to to the Dentist

 First, let me say this was not your normal dentist visit.  It was not ‘a clean and polish’ visit.  It was major oral surgery: two implants and a gum graft.  More than 5 hours in the chair! Oh, he kept me well numbed so not much pain involved but there was a fair amount of stress in the procedure.

I had promised Jill I would keep her informed about progress.  When I had a chance, I reached for my mobile: MIA!   We were waiting for the aesthetic to kick in so I asked for a couple of minutes and grabbed my laptop.  I could not type a short email.  My tremors were so bad I had to one finger, “hunt and peck” to get her a message. Even then it was garbled.

From a previous visit, I knew that the local anesthetic contained Epinephrine.  A little pain getting the injection + a little stress + Epinephrine == really bad tremors for me.  You can request a local anesthetic without Epinephrine.  I was informed that it takes longer to become effective and it doesn’t last as long. IIRC with the old teeth anesthetic you had to wait for 15 minutes or more before the dentist could start working and it took what seemed to be forever to lose its effectiveness. Something like a  half a day with a numbed mouth.

Opinion: The addition of Epinephrine to the local dental anesthetic is a money/time saving strategy without tangible benefits to the patient. I could be wrong. Perhaps I am.

Using a TENS on my Essential Tremors

 Jill is selling her condo and on Tuesday the purchaser did an inspection of the property.  There were a  couple of minor “gotchas” that needed to be addressed so a visit to Home Depot was called for. Because it can sometimes be a nightmare trying to locate a specialist item, I came prepared with the item pulled up on my laptop.  I asked the checkout clerk on the “Pro” desk where it was and received directions to the correct aisle.

The same young lady was there on the way out but the item wouldn’t scan.  I said they needed better scanners and mentioned at one time I wrote software for Point of Sale.  She mentioned she was studying computing a Predue and was hoping to work in BioMedical.

That prompted me to describe my latest computing project. Using an Arduino microcontroller, a couple of solid state switches, a miniature accelerometer and a COTS TENS unit.

There are several scientific papers describing the stimulation of peripheral nerves with an electric current that can be beneficial to a proportion of the Essential Tremor population.  cite cite cite As with almost all treatments of Essential Tremors, it only works for some of us but it works well enough to interest me in a test drive.  Unfortunately the cost of an FDA approved nerve stimulation unit is well outside my budget even if I excluded the ongoing monthly charges.

Our Essential Tremors working group had a lively discussion over the possibility of using cheap, Commercial Off The Shelf (COTS) hardware for the benefit of Essential Tremors.  The idea of a peripheral nerve stimulation unit evolved from these discussions.  A TENS unit looked to be a good  source for the electrical current. Relatively inexpensive, with controls for frequency, duration, and strength and even better, portable battery powered units are available.

At first I thought I would need to build some special hardware to switch the output of the TENS unit between the Median and Radial nerves.  Mechanical relays would be too slow as we needed to switch the output between the nerves at or near the frequency of a person's tremors; about 5-12 hz. I sourced a pair of solid state switches for the Arduino microcontroller from Hong Kong.  They will arrive someday. ;-)  There is an overwhelming selection of inexpensive accelerometers available.  I may need to try a couple before  we settle on one suitable for measuring hand tremor frequency.  The cost of materials so far will be about $50 USD + the TENS unit and my time to write some control software and integrate the whole.

Stay tuned for future developments.

The dual solid state switches arrived yesterday and here is a photograph of my working prototype.  Next up is the accelerometer to measure my tremor frequency.

(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)

11 question about Essential Tremors --reddit/u/C...R

 How quickly did/is your tremor progressing?

Not very quickly at all.  I have “late onset” Essential Tremors.  They became noticeable in my early-40’s.  30 years on and they have ruined my poor cursive handwriting and my printing is not great shakes.  I have problems with (art) painting, and drawing is impossible or just about so.

Do any supplements help? (have read about GABA, Passion Flower et al, are those genuinely helpful?)

Only andocially.  So far I’ve not seen any study on dietary supplements, natural or otherwise.  GABA may help, as there exists some research to suggest that GABA and Purkinje cells in the cerebellum interact but the mechanism is not yet well understood.

Note: Alcohol is a GABA antagonist which suggests a causal relationship in some people who have Ethanol Responsive Essential Tremors.  Yet another area for research in Essential Tremors.

Do any particular diets help? (I'm already vegan, but heard good things about gluten free, keto etc)

A few months ago, I started a deep dive into Essential Tremors and the medical research done in the past 10 years or so.  Most of the information pre-2010 is either: a) incorrect, b) flawed, c) biased, d) out of date due to more recent studies.

At present, I am overwhelmed with the scientific literature and so I must ignore any and all anecdotal information.  Having said that, there doesn’t seem to be a scientific basis for supplements or diets that are beneficial for Essential Tremors.  The Mediterranean Diet is quite healthy and is as good/better than most.

My advice is to eat healthy.

Mine is a fine tremor - visible, annoying, but almost like vibrating, what's yours like?

My tremors are mainly in the forearm.  The type referred to as Forearm Pronation Supination (FPS). i.e. the tremor is a rotation of the forearm.  This tremor kills any fine motor movements in the hand as the muscles of the forearm are much stronger compared to the hand/finger muscles.  This tremor makes eating soup a challenge.

In the only study of tremor locations I have read, the Wrist Flexion Extension is the strongest tremor followed by the Forearm Pronation Supination tremor. If you have either/both of these tremors, your fine motor skills will be close to non-existent.

The bad news doesn’t get better.  Somewhere around 95% of the Essential Tremor population’s tremors are in the forearm-hand! 

Have you tried to draw a spiral?  You will see shakes at either the 10 o’clock - 4 o’clock diagonal or at the 8 o’clock - 2 o’clock diagonal depending on whether you are left hand dominant or right hand dominant.

Is there an app to monitor progression? Can't seem to find one

I’ve not seen any apps to monitor progression.  There are several published papers on using a cell phone to measure tremors and one study to use the data to differentiate between Essential Tremors and Parkinsons’.  It’s a good idea.  I’ll add it to the ‘to do’ list of the ET working group I am a member of.

Which drug is the most effective?

The sad fact about drug treatment of Essential Tremors, is that drugs don’t work for about half of us.  The front line, “go to” drug for the treatment of Essential Tremors is Propranolol which I understand is no longer prescribed for high blood pressure (hypertension) as there are newer and better drugs available.  If you have asthma, avoid Propranolol.  Get your primary care physician to prescribe Atenolol.

Propranolol works for about 50% of the Essential Tremor population.  It can temporarily reduce the amplitude of your tremors by 50% to 70%.  Propranolol, the non-extended release product, starts working from 30 minutes onward for 4-5 hours.  The extended release version is a once in 24hr dosage.  Propranolol is an “on demand” drug.  There is no ramp up period nor is there a weaning off period.  If it works for you, just take it when you need semi-steady hands.

If Propranolol doesn’t work for you, your doctor may prescribe Primidone.

Taking Primidone, a barbiturate anticonvulsant is a bit more complicated. You must ramp up the dosage from a low starting level to a dosage that is effective in suppressing your tremors.  If you decide to quit, you need a period of time to wean yourself off this drug.

Exercise makes it worse in the short term sure, but does building strength genuinely help with the tremor in the longer term? I'm scared of exercise atm because of it but will do it if it will help

Although exercise does not directly affect Essential Tremors, exercise  does  contribute to a healthy lifestyle and that is generally beneficial.  It could lead to less stress and that would be very positive for your Essential Tremors. 

Is a small glass of wine each evening helpful or not worth it?

A small amount of alcohol, 1 beer, a small glass of wine, or 1oz of spirits does help for about 50% of the Essential Tremor population.  This is referred to as: Ethanol Responsive Essential Tremors.  This response can last up to 4 hours.  “The long-chain alcohol 1-octanol has been demonstrated to effectively alleviate tremor symptoms in ET without causing intoxication or other clinically relevant adverse effects” cite Just don’t fall into the fallacy of “if 1 drink is good, 2 drinks is better”.  The hangover the next day will exacerbate your tremors.

How do you handle the anxiety of the tremor??! Does it eventually pass/you get used to it?

I am quite aggressive about my Essential Tremors and have two different responses depending if the person is condensing or not.

1. My nice response is to joke about my Essential Tremors; “Oh my DT’s (delirium tremens) are showing through again”.

2. My mini-Essential Tremors lecture.  I assume the “wing beating position” with my left arm which usually provokes my FPS (Forearm Pronation Supination) tremor. “Oh see, there he is! It’s just Essential Tremors.  Nothing I can do about it.  I can take a beta blocker but I have to watch my BP.  Been like this for the past 30 years.  It’s getting a bit worse the older I get.”  About this time, I will lower my arm to stop the tremor demo and try to inject some other topic into the conversation.

Do you have any pain? I.e. nerve pain?

Yes, but it’s not related to my Essential Tremors. I don’t have any numbness either.

DO YOU WORRY WHAT WILL HAPPEN IN THE FUTURE?

For me, after 30 years with Essential Tremors, the future is now.  My tremors are about twice as bad as they were when I first “discovered” them.  It has reduced what was my very poor cursive handwriting to illegible and my printing to near unreadable.  Freehand drawing of a smooth curved line is impossible which makes all drawing impossible which is my greatest loss.

Prognosis of Essential Tremors is not well studied. I would like to add the hopeful “yet” but these types of studies take 5 to 10 years or more to yield results and in a world of “publish or perish” our best Essential Tremor researchers cannot afford this type of intellectual investment.

The only definitive statement I have seen regarding the prognosis of Essential Tremors, suggests that the tremors get worse as you get older and there is cold comfort in that.

(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)

Nature of my tremors

Disclaimer: I am NOT a medical professional.  I am not offering advice on the treatment of your Essential Tremors.  This blog is my own personal story about how I cope and don’t cope with my Essential Tremors.  I do NOT recommend that you undertake ANY experiments with drugs to treat your Essential Tremors.  Seek medical advice from a qualified physician and follow their advice.

My tremors are “late onset” as I was about 40 when I first became aware of my Essential Tremors. Full disclosure: I knew my hands were shaky but I always ignored my tremors. At this time, I was in full time employment with Siemens and working as part of a large team on a Point of Sale project in Düsseldorf. I was installing a network card in a new AT class tower PC and had to remove and reinstall several blanking plates.

One of the local Siemens employees commented on my shaky hands as it took me several attempts to insert a tiny screw to secure the blanking plate.  I jokingly laughed it off and said; “It must be my DT’s!” (delirium tremens).  I was abusing alcohol at the time so there was some truth in my statement.

I eventually quit drinking alcohol but the Essential Tremors stayed with me.  They were never caused by my alcohol abuse.  After living with ETs for more than 30 years, it is only recently that I have sought medical advice.  At one visit for a checkup on my hypertension (high blood pressure), I casually demonstrated my hand tremors and asked my doctor what it was.  “Essential Tremors” came the reply.  I had never heard of it.

I did a little Google research after that.  The first article I remember reading an article on the treatment of Essential Tremors was from the Mayo Clinic.  It recommended Propranolol  (Inderal), a common beta blocker that is used to treat high blood pressure.  I had taken Propranolol for many years but recently my doctor switched my medicine lineup to Atenolol, another beta blocker.

Somewhere along the way, I decided to experiment.  I had a three month supply of Propranolol left over from my old prescription.  “I’ll try 40mg.”  Half the normal dosage I had been prescribed.

It worked!  I’m one of somewhat lucky people that can tolerate Propranolol and my Essential Tremors respond to it.  My tremors are suppressed for 4 to 5 hours after taking it.

As I said, I’m lucky.  Propranolol works for me. Maybe it will work for you.  It is effective for about 50%-60% of people with Essential Tremors.  If it works for you, it can give you relief of up to 50% of your tremor amplitude.  It does not affect the frequency of your tremor, how many times a second you shake.  ...and then there can be some side effects. 

Propranolol is the only drug currently approved by the FDA for the treatment of Essential Tremors.  

Opinion: All other drugs that you may be prescribed for the treatment of Essential Tremors will either be: 

• less effective, or

• have worse side effects, or

• both

I’ll try to comment on the sad state of affairs of research/diagnosis/treatment Essential Tremors in my next post.

 

Why Essential-Tremors-101?

 In my retirement I decided to re-learn to paint.  I happily painted for more than 10 years.  Then this spring I decided to improve my artwork by taking an online drawing course: Drawabox.com  7 lessons, each divided into 3 parts.  I couldn’t complete the first third of the first lesson!  The lesson made me draw in a manner that showed my Essential Tremors.

For many years I’ve been living with and the past 10 painting with Essential Tremors.  I always managed to find a workaround to my tremors. But this time was different.  I couldn’t use my usual cheat of rotating the paper to draw a straight line.  I had to draw the curve, shakey line and all.

I got mad and my tremors got worse. You know the feeling, strong emotions make the shakes worse.  You know what this means?  “This means war!”  Yes, I decided to declare war on my Essential Tremors.  

General Sun Tzu said; “Know thy enemy”

... and I didn’t know anything about Essential Tremors other than it was affecting me and my Quality of Life (QFL). Getting factual, truthful information about Essential Tremors is a daunting task. 

Where can I discover quality information about Essential Tremors?

• Facebook

• Reddit

• Medical Journals

• Hospitals and Movement Treatment Centers

• .org

• Blogs

• Any other sources?

Let’s take a quick look at each of these potential sources.

Facebook wasn’t my first choice when I started my research.  There are several reasonable active Essential Tremor groups on Facebook. (Facebook 🔍 Essential Tremors).  It’s a great place to chat with others. Suffers from a high noise to signal ratio.  Low on quality information.  Watch out what you say.  If the moderators do not like what you say, you can be banned without recourse or appeal.  I also know of one Facebook Essential Tremor group that was deleted by Facebook itself presumably for content. 

Reddit doesn’t have the volume of posts that Facebook has and so lacks the volume of response.

Medical Journals have several faults for the non-medical person to stumble over.

1. The full text is not always available. You can only read the abstract.  The full document may be paywalled to you.

2. They speak with a different vocabulary.  It’s learnable but it makes accessing the information more difficult

3. They are human and make mistakes like all of us do. There are extensive references in these papers which may amplify minor details to a degree that is out of proportion to their importance.

Hospitals and Movement Treatment centers unfortunately have a built in bias: profit, so “caveat emptor”.

National and International Tremor Organizations (.org)  are good and unbiased but limited in information. These organizations are not a prolific source of information possible due to understaffing and underfunding.

Blogs.  There should be many Essential Tremor blogs.  My own survey via Google was a disappointment.  The first 100 or so ‘blogs’ google lists are either commercial institutions, hospitals, treatment centers or organizations.  I did not find one personal blog on Essential Tremors!

If you have any other suggestions for information sources that deserve attention, please chime in and comment below.

I will post another installment on my experience with Essential Tremors in the next couple of days.

(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)