Measuring small changes in PD symptoms
 

Hi,

I'm new on this forum, so let me introduce myself: 53 years old; PD for 4 years; presently on Azilect 1 mg/day, Requip XL 16 mg/day; English; background in computing and math.

Given that background, it's perhaps not suprising that I'm keen on measuring my PD symptoms in order to assess the effect of drug and lifestyle changes.

I'm interested in measuring changes of just a few percent. For this purpose, I find scales such as UPDRS too granular. Am I missing something in this respect?

I run a series of tests on myself. These include timing how long it takes to:
- screw and unscrew nuts and bolts;
- rotate bolts length-ways;
- put on and take off a coat.
These tests take about 30 minutes to complete. In addition, I time walks that I make. That leaves plenty of things left unmeasured: tremor, balance, etc..

What measurements do other people use?

It would be great if the PD community had enough data to say things like:
"doing/taking X leads to an average y% change in symptoms".

John

johnt-
Pleased to meet you and welcome to our world.
I have also thought a bit about meaningful measurements. Some ideas-
1) When to take a measurement? The same time each day doesn't work because our state fluctuates. There are a few times, however, such as when we first wake up. There is also the time when we are at our best in our cycle, as well as at our worst.
2) It is also important to record just how much of our day is spent in either an "off" or "on" state since those are indicators of quality of life.
3) Since we all have keyboards, using it as a measurement tool is good. Timing oneself in typing a standardized sentence measures manual dexterity. Again, the time-in-cycle needs to be consistent.
4) Length of stride is a good "macro" measurement. I lay out a tape 100' long and hit on the zero with the first step and count them to the other end. Then do a little math to get a "two-step" stride.
5) I use a timed balance on one leg test. I stand sideways in an open door frame, fix my eyes on a point on the frame, and raise on foot off the ground. I count chimpanzees until I am forced to put the foot back down. I don't accept the test unless the count is above a certain value such as 10 or 20. Depending on the circumstances, I might take the best of three or I might average them. The important thing is to be consistent. Then I do it with the other leg.

This last one is pretty handy since it requires nothing in the way of equipment. It also gives a snapshot of several things at once. Leg muscle strength. Sense of balance. Cognitive (counting). It can be pretty precise, especially if you repeat it several times and average.

have to control many variables
 

I think we do need better ways to measure, for personal interest, but especially for clinical trials.

Those with more scientific experience please correct me, but I think you would have to have as few variables as possible. You would, i think, have to compare with similar symptoms, but not necessarily someone having it the same length of time. Would your medication be the same? Are you measuring progression or improvement from meds? Are you comparing meds? How much was eaten prior to measurement? Current stressors? Is depression present? Last bowel movement? How much sleep in the last week?

Any allergies active? Other conditions? Menstruation? Menopause?

Those in clinical trials, have these factors been considered, asked of you when you are evaluated?

i an not trying to discourage you; just stressing that small changes [daily? monthly] aren't necessarily permanent. A different med could change them all. Tney can change in an hour.

Measuring without med may enable some self comparisons, but no one else would be able to compare to you in any reliable specific way.

There lies a big part of our problem; we are all different batches of chemicals.

And psychology is no where in you list. Someone could tell you you are doing much better, and you might actually start doing so.

Howwever, just the fact that you are posting this, indicates your desire to understand this illness and medications in tangible ways. I hope you keep thinking. Many of us know that variables are not controlled in actual clinical measurements.

Emotions, psychology - I encourage you to include it from the very beginning.

thanks for the post. it's a beginning?
paula

"And in the end, the love you take, is equal to the love you make."
The End, by the Beatles - written by Paul McCartney

Purdue Peg Test
 

There are devices and tests such as the "Purdue Peg test" for measuring and establishing a reference point of fine motor skills.

take care ,,, ken

Also balance with eyes closed - very hard for me. and I'm trying the Wii Fit now - which my neurologist was actually positive about - which has a lot of balance tests, fitness tests etc, and tracks progress - how accurately it measures, I don't know but it's being used research projects.

Sasha

Measuring progress
 

I am fortunate in having measurements taken for me by Kings College London, the hospital for whom James is cycling round the world. (Although my post has attracted little interest)
Every 6 weeks, I go to KIngs College unmedicated, and they do a series of tests at exactly the same time. First a computer test to measure reaction time. I place each index finger on an electrode, and the TV screen gives a set of random commands, raise right finger, raise left etc.
Then they video me walking up and down the corridor. Then they fix electrodes to my feet, and measure stride length and speed. A low tech test is fastening a series of buttons from large to microscopic, and timing me.
They then fasten my arm to a machine which moves my arm side to side, and measures rigidity. I get blood pressure checked, lying down, standing up and after running down the corridor. (remember I am unmedicated!!)
Height, weight and cogwheel rigidity are measured. I am surprised at how much my height varies, common apparently in a PWP.
There are other tests, but it costs me nothing and gives me an excellent guide to my progression. Thought you may be interested to see what tests the medics use.
Ron

Thanks for your interesting comments. To pick up on a few points:

Balance
Both reverett123 and Sasha mention this. I see the importance of measuring this too, but it's one of those things I find too difficult to get reliable readings for in a reasonable time: either I'm too good (left side, eyes open, indefinite) or too bad (right side, eyes close, almost zero) for a simple test like stand on one leg for 60 seconds to mean much. As Sasha mentions, the pressure pad approach might be useful - perhaps pressure variation could be measured.

Using a computer
Again both reverett123 and Sasha mention this. It would be especially interesting if tests were standardized and web enabled. Ronhutton mentions reaction time testing. This would be easy to computerize.

Existing tests
KC Tower mentions the Purdue Peg test and other people mention other tests. To stop us reinventing the wheel and make communication and aggregation of results easier, it would be useful if PwPs had a list of standardized tests.

Other factors
Paula W is right to mention the importance of psychological factors. This must include the placebo effect. The only way to reduce this that I can think of is to have a larger sample size.

Hospital based measurement
Ronhutton mentions having tests every 6 weeks. Is this part of a research project Ron? Do they aggregate the results into a single index or, perhaps, a few orthogonal indices?

Usefulness
reverett123 recounts on another thread (93463) [I had a link here, but I've had to delete it because my post count is less than 10] the effect of potassium on his PD symptoms and the limited research in the area. If only we had the data!

Progression measurement
 

Hi Johnt,
No, Kings College don't aggregate the results into a single index, they just compare each test with the previous results, and can see speed of progression, or improvement!! They have measurements of non PWP to compare with, such as the volunteer assistants in their twenties. One of these students said to me, "You have a faster reaction time to me". I told him, "Great, but you can walk and I can't!!" Another interesting test they have just included is photographing my face, splitting the photo down the middle, and joining two left hand sides and two right hand sides to make a complete face to see if there is any difference in the left or right sides.
You can read about the group on
http://www.whatsdrivingparkinsons.net/index.html
Ron

RE: Balance (below)
Simply have a category of ">60" and one of "<10" or whatever is appropriate.
A balance board is great but it limits participation. Balancing actions that could be used anywhere in the world would be better. Even balancing a pencil on a fingertip could generate data.
Reaction times could be based on online games, perhaps some of the freebies that come with Windoze?
Potassium's effect would be a good "proof of concept". Say that someone not taking potassium goes through two or three tests for baseline, then repeats daily as he takes a defined course of potassium for a week?
Anyone interested?
-Rick

A paper by Pal and Goetz [1] describes ways to measure the slow movements of PwP.

"... numbers generated must have a direct bearing on the clinical state under question, because an improvement in a movement variable, even if statistically significant, has little importance if it does not correlate strongly with clinically appreciated improvements.

"... such tools have the potential to register almost limitless information and over-sampling can lead to data sets difficult to interpret.

"... the learning effects need to be considered, as well as confounding influences of cognitive function, motivation, tremor, and the topographic distribution of the motor deficit being measured.

"... rating scales and technology-based tools s are likely to be used in research and clinical care as complementary strategies for tracking disease progression and response to treatment.

"... it is likely that rapid advances in bradykinesia monitoring will be achieved."

Apparently, for years I've been a quantitative digitographer!

For my attempts at online measurement tools see:
http://www.parkinsonsmeasurement.org...eToSideTap.htm
http://www.parkinsonsmeasurement.org/toolBox/tremor.htm
http://www.parkinsonsmeasurement.org/PDMeasure/

The learning effect mentioned above is important. It refers to the process by which the act of repeatedly taking a test leads to better scores without improving the underlying condition. Today, a user of PDMeasure, to whom my thanks, reported that he/she (users are anonymous) had increased their side to side tap test scores by moving their torso as well as their arms, hands and fingers. I wonder whether all clinical trials take the learning effect into account?

Reference

[1] "Assessing Bradykinesia in Parkinsonian Disorders"
Gian Pal and Christopher G. Goetz
Front Neurol. 2013; 4:54
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669893/

John