Just had my first "save"...

Usually when I am going "off", I feel a slight tremor in my right leg or some slowness.

But by that time it is always "too late", and I will go all the way off, before I can get back on. It's like slowing down and turning a massive cargo ship (lots of momentum).

However, I think I have found a "canary in the coal mine" so to speak - a wrist rotation "tremor" (think of the movement of alternately opening and close a jar) that appears before all other symptoms. I say "tremor", but it is more like a "jerky/spasmodic motion" (i.e., not smooth).

So I just tried this wrist rotation "test" as I was approaching the time of my next dose... and 30 minutes before my next dose I detected the jerky wrist rotation (with no other symptoms), and immediately took my next dose, and eventually went back on. The nice thing about it was that I only went "partially off", and the "partial off" state wasn't that bad...

Anyone else discover ways to detect an impending off period early such that they can "partially recover" without going fully off? Or is your on-to-off-to-on experience totally different than mine...

P.S., I actually did this with a simple program I wrote (like side to side tapping keyboard test) that measures the speed that I can rotate and tap the "Enter" key with my pinky and thumb (alternately)... And I found that for me, with 10 tap intervals, an average interval size < 400 ms between taps = on-time and > 500 ms between taps = off-time...

[johntPM]

It's good to see someone else investigating dynamic dosing and writing apps to enable it.

My warning signs are similar to yours: a bit of tremor where there was none before and perhaps a bit of wrist stiffness. (I suspect that the key measures differ from person to person.)

The trouble with the tap tests is that they are invasive, in the sense that you need to stop whatever you're doing to take the test. What is needed is something to measure your PD without your involvement and beeps when you're ready for the next dose, taking into account the lag from the time you take the pill to the time it has some effect. I've been looking at this for the last 5 years, or so, but failed to come up with anything reliable enough. Perhaps you'd like to take a look at this challenge.

John

[Hidden in reply to johntPM]

Hi johntPM:

Very interesting topic!

Perhaps the answer lies in a smart watch that can sense your movement...

And it seems like some work has been done in this area... For example,

programmableweb.com/news/ap...

Have your heard of it / looked at it?

The other thing that comes to mind is a device like a continuous blood glucose monitor, however, instead of blood glucose concentration, it measure levodopa concentration...

[johntPM in reply to Hidden]

Thanks for the reference. I was aware of the general line of research, but not of the Apple framework specifically. (Perhaps because I use Android.)

I've measured accelerations detected by both Arduino microcontrollers and smartphones, but there is so much noise that its not been possible to use the data unprocessed. I've just started to think of a simple AI approach to overcome this problem.

i think it is important that any software produced is open source and free; that the hardware is effectively free (i.e. not including the cost of a smartphone, which I assume many PwP already have); that the app does not need to be installed (running directly from the browser). JavaScript is installed on most devices, but unfortunately not on most smartwatches. See:

parkinsonsmeasurement.org/

[Hidden in reply to johntPM]

It looks like someone has already done it?

sense4care.com/

Couldn't put it in a shopping cart and see how much it costs... maybe it is not yet generally available...

Note the angle... the device generates reports to be reviewed by your doctor... and not so you can learn of an impending off-time and take your meds...

P.S. I have used that levodopa calculator a lot on the 'parkisonsmeasurement' web site. Thanks for that!

[Cbgs in reply to johntPM]

Wearables

Not too far away !

[Enidah]

I would love it if there was a reliable way to tell us when we are approaching going off. Early on in my PD journey I got dystonia in my back when the meds quit working. Later I got pain in my upper arms and shoulders and now before I go off I get anxiety and complete lack of positivity. And later in the off session I get the pain in my upper arms and shoulders still and generally feel like something has been run over and left by the side of the road. It’s a barrel of monkeys.

[Astra7]

Oddly my gums start to ache, followed by curling toes. I chew my madapor and swill it around my mouth to help it work quickly.

[AaronS]

Why don't you try bouncing a children's ball on the ground, I've found that helps wrist movements and both diskynesia and bradynesia. For a duration of 15 or so minutes.

You can even try to over a week or so time the duration of your 'on' time and take the next meds before the existing meds wear off, thus reducing a 'off' period.

[Beverly2017]

This is all very helpful. I'm concerned about taking too much levadopa and sending a signal to my brain telling it that it doesn't have to make any of its own levadopa. At the same time if you re doing something important and you start to go off, your meter let's you know, then you have a choice.

[Hidden]

More on the dynamic dosing topic...

next dose signal: a reliable signal that indicates you are going off and should take the next dose.

Note I am suggesting such a signal may exist... but it will vary from one person to the next, may not be "perfect", and perhaps many/most people will not be able to successfully identify such a signal... (for me, the best "next dose signal" I have found so far is presence of "jerky wrist rotation sign" upon testing).

I suggest there are three protocols:

Protocol 0: Take your doses at fixed times (essentially the protocol for the last 50 years!)

Protocol 1: If you have detected the "next dose signal" before your regular dose time, then take your dose at that time, otherwise take your dose at the regular dose time. Optional early "guard" variant: never take your dose more than X minutes early (actual time X depends on the individual and the reliability of the signal).

Protocol 2: Wait until you have detected the "next dose signal" before taking your dose (even if it is after your regular dose time). Optional late "guard" variant: never take your dose more than Y minutes late (actual time Y depends on the individual and the reliability of the signal).

Supposition: If your "next dose signal" is repeatable/reliable, than Protocol 2 may result in the most consistent levodopa levels with the lowest possible amount of levodopa.

In the future, technology may be available which automatically and continuously monitor the patient and assert the next dose signal (e.g, beeps). Maybe the "sense4care" device can deliver such a "next dose signal" today...

[emmemi]

I read just now your post. I too have learned a sign that I am low on dopamine. My signal is that I start sucking saliva by pushing my tongue against my lower teeth and this tic does not pass until the levodopa dose reaches the equilibrium level. Unfortunately, sometimes I overlook the signal and fail to avoid the off period