Parkinson's Disease Tulip


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Old 06-28-2012, 08:06 PM #1
johnt johnt is offline
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Default Online strobe light program affects my tremor

There's been many posts in the forum on the use of vibration therapies for PwP. People have posted on various non-invasive mechanisms such as physical movements, changing sounds, electrical and magnetic pulses, as well as the invasive DBS.

What these all have in common is that they add a stimulus to the CNS.

In 2010, Imark3000 and Rick wrote about the use of entrainment to reduce tremor:
http://neurotalk.psychcentral.com/sh...ht=entrainment
See also Audio-visual entrainment, at Wikipedia:
http://en.wikipedia.org/wiki/Audio%E...al_entrainment

With the desire to reduce my tremor, I thought I'd try something in this area. My background is in computing, so it's easier for me to do something computer based. On the grounds that it's easier to program, I tried a different approach: creating the stimulus using strobe lighting only.

I've written a program which generates many strobe lighting effects:
- choice of frequency, color;
- different left/right images, which can have a phase difference;
- changes of frequency and colour with time and tremor.
There are over 20 parameters that can be tweaked.

Let me give the following warning:

- flashing lights are dangerous for some people;
- the images can make your tremors worse;
- the images can make you sleepy.


The program is online at:
http://www.parkinsonsmeasurement.org/toolBox/strobe.htm

I've set the parameters to give a taster session; running for 30 sec, the frequency starts at 6 Hz and decreases with time.

My theory is that if the flashing starts close to the Parkinsonian frequency, 4-6Hz, the tremor links to the flashing and, as the flashing frequency is reduced, the tremor follows, decreasing with time.

The reality is more complicated. The strobe effect on me is:
- in the first few seconds my tremor gets worse;
- after about 30 seconds of the strobe frequency slowly decreasing the tremor's amplitude starts to decrease;
- after 3 minutes I may start to get sleepy, and the tremor gets less than it was at the start.
I've not tested the program on any other PwP, so I don't know whether the effect on other PwPs is the same.

I would like to have measured the effect, but I can't get any reliable results.

I don't ask anyone to try the program. But, I would be grateful for any comments on the approach, especially the identification of any additional dangers.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 06-29-2012, 04:20 AM #2
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It makes you sleepy ? Isn't this great to use before going to bed ? I thought PD patients have trouble sleeping ?
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Old 06-29-2012, 05:59 PM #3
imark3000 imark3000 is offline
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Default Mindful meditation

Thank you John for your persistent efforts in investigating alternative noninvasive methods to coup with PD symptoms.
Personally, and lately I have "discovered" "mindful meditation" (MM). For me, I dare to say that MM has been a life saver which gave me back my life including but not limited to, control of my PD.
There are many resources about MM which has entered the main stream
medicine and some universities and medical centers offer courses in MM. I have posted about it in another thread and I will post in the future about my experience as I go along.
One thing that I can tell you now is that exercising MM for 15 minutes can calm my tremors by nearly 100%.
cheers
Imad


Quote:
Originally Posted by johnt View Post
There's been many posts in the forum on the use of vibration therapies for PwP. People have posted on various non-invasive mechanisms such as physical movements, changing sounds, electrical and magnetic pulses, as well as the invasive DBS.

What these all have in common is that they add a stimulus to the CNS.

In 2010, Imark3000 and Rick wrote about the use of entrainment to reduce tremor:
http://neurotalk.psychcentral.com/sh...ht=entrainment
See also Audio-visual entrainment, at Wikipedia:
http://en.wikipedia.org/wiki/Audio%E...al_entrainment

With the desire to reduce my tremor, I thought I'd try something in this area. My background is in computing, so it's easier for me to do something computer based. On the grounds that it's easier to program, I tried a different approach: creating the stimulus using strobe lighting only.

I've written a program which generates many strobe lighting effects:
- choice of frequency, color;
- different left/right images, which can have a phase difference;
- changes of frequency and colour with time and tremor.
There are over 20 parameters that can be tweaked.

Let me give the following warning:

- flashing lights are dangerous for some people;
- the images can make your tremors worse;
- the images can make you sleepy.


The program is online at:
http://www.parkinsonsmeasurement.org/toolBox/strobe.htm

I've set the parameters to give a taster session; running for 30 sec, the frequency starts at 6 Hz and decreases with time.

My theory is that if the flashing starts close to the Parkinsonian frequency, 4-6Hz, the tremor links to the flashing and, as the flashing frequency is reduced, the tremor follows, decreasing with time.

The reality is more complicated. The strobe effect on me is:
- in the first few seconds my tremor gets worse;
- after about 30 seconds of the strobe frequency slowly decreasing the tremor's amplitude starts to decrease;
- after 3 minutes I may start to get sleepy, and the tremor gets less than it was at the start.
I've not tested the program on any other PwP, so I don't know whether the effect on other PwPs is the same.

I would like to have measured the effect, but I can't get any reliable results.

I don't ask anyone to try the program. But, I would be grateful for any comments on the approach, especially the identification of any additional dangers.

John
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Old 09-15-2012, 10:31 PM #4
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Default

I don't have PD , but tried it anyway.
Have many non PDers given feedback?

Here's my non PD impression -
It kind of made me nauseated & headachey - I just used the default setting.
I had to stop after 20-30 seconds.
The center back of my head still feels a bit strange.
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Old 09-16-2012, 12:43 AM #5
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Jo*mar,

Thanks for the feedback. I'm sorry you feel unwell.

Apart from my wife, your's is the first feedback I've received.

I use the program almost every day: it usually gives me some small short-term relief from my tremor. (I'm not suggesting anyone does this, but I typically run the program as defaulted to on the Control Panel, except that I set the duration to 300 sec, and the acceleration ratio to 0.9999.)

I've added your comments (without using your name) to the top of the web page. I hope this is OK with you. If not, please let me know, and I'll remove your feedback.

John
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Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 11-03-2012, 03:19 AM #6
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Default SensoryStrobe

There is some discussion on the Forum at the moment on the possible use of external electrical stimuli to the head to help PwP.

For some time now, I've been looking at a related area: sensory stimulation. This started with strobe lighting effects, as described above. I've now added audio effects to the program. The sounds are stereophonic, with each channel linked to the corresponding left/right strobe effect.

(Note: to work the program requires a modern browser supporting HTML 5: Chrome is fine, IE8 is not.)

I've set the parameters to default to the ones I use (with the exception that I've set the duration to 10 seconds, while I use 300 seconds).

STROBE EFFECTS ARE DANGEROUS FOR SOME PEOPLE.

ONLY IF YOU KNOW YOU ARE NOT ONE OF THESE PEOPLE:
SensoryStrobe can be run online at:

http://www.parkinsonsmeasurement.org...soryStrobe.htm

The effect on the speed of movement can be measured at:
http://www.parkinsonsmeasurement.org...eToSideTap.htm

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg

Last edited by johnt; 11-03-2012 at 09:02 PM. Reason: name change
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Old 10-30-2013, 09:04 PM #7
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That's interesting, I have been using this site *edit*
and it makes me sleepy after a few minutes as well.

Last edited by Jomar; 10-30-2013 at 11:59 PM. Reason: no linking for new members per guidelines
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Old 12-12-2016, 12:35 PM #8
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Following the demonstration on the BBC of the "Emma", a simple gadget from Microsoft to reduce tremors, there has been a return of interest in the area. Given this, I'm bumping up the thread from 4 years ago describing my attempt to decrease tremor, an online program called Strobe:

Parkinson's Disease Measurement: strobe

This program generates pulsating lights and changes of colour. A control panel allows you to change the frequency of the colour changes.

I'm not sure whether it makes things better or worse. Sometimes it knocks out the tremors, sometimes it makes them worse. This variation in effectiveness suggests that the best frequency of strobing is contingent on the type of tremor, its frequency and amplitude. It is not clear to me whether the "Emma" as shown has this flexibility or, indeed, whether it needs it.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 12-14-2016, 11:53 AM #9
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John,
I've been trying the strobe since your post...have not noticed anything either way...will continue for a while as there is no downside...thanks.

Eric
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Old 01-09-2019, 07:54 PM #10
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My apologies, but I've broken the link to one of my strobe programs. It should now read:

Parkinson's Disease Measurement: strobe

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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