How can I easily monitor my symptoms? - Cure Parkinson's

Cure Parkinson's

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How can I easily monitor my symptoms?

Joanne_Joyce profile image
16 Replies

I've got two charts going now. One is hourly to record my motor fluctuation and one is daily to record other symptoms, amount of exercise etc. I have these on my laptop. The problem is, if i'm not working on my laptop I don't fill in my chart and even though I think I'll remember later I often don't. Has anyone found an app that could be put on a phone for this purpose? Or any other ideas?

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Joanne_Joyce profile image
Joanne_Joyce
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16 Replies
cabbagecottage profile image
cabbagecottage

the nurse keeps asking me to keep a record or diary . I have tried but My husband is so different I get lost . really difficult to monitor .

Joanne_Joyce profile image
Joanne_Joyce in reply to cabbagecottage

I agree it isn't easy. But I think it is worth the effort so we know how to make adjustments.

movinngroovin profile image
movinngroovin

I-Phone--Michael J. Fox Foundation is doing research with them and they are free to participants!

Joanne_Joyce profile image
Joanne_Joyce in reply to movinngroovin

Thanks . Is it available for people who are not taking part in a study?

movinngroovin profile image
movinngroovin in reply to Joanne_Joyce

Sorry-not sure-you can email them and ask.

Joanne_Joyce profile image
Joanne_Joyce in reply to movinngroovin

Good idea. I'll try that.

alcv profile image
alcv

There is an app on phone - Parkinson's

Diary. Keeps times when you take meds, eat, exercise, how you're feeling (off/on). I take meds every 1 1/2 hrs, so it helps me keep track of times.

Joanne_Joyce profile image
Joanne_Joyce in reply to alcv

Thanks alcv. This sounds ideal. I've tried to download it but no success so far. I'll get someone to help me.

johntPM profile image
johntPM

To measure your movement speed you can do the side-to-side tap test, which counts the number of time you can type q followed by p in a fixed time, while using just one finger. This can be run online at:

parkinsonsmeasurement.org/t...

If you find this useful, you can navigate to PDMeasure which runs a version of the program that stores your results.

The disadvantage of this approach is that it requires your involvement. To avoid this, many recent methods have used accelerometers found in tablets and smart phones. This works well for measuring tremors, but not so well at measuring bradykinesia.

I've found that in the 10 years since diagnosis the progression of the disease has been best monitored by noticing new symptoms developing, such as drooling.

John

Joanne_Joyce profile image
Joanne_Joyce in reply to johntPM

Thanks John. It's good know what is available.

Joanne_Joyce profile image
Joanne_Joyce in reply to johntPM

I tried that finger tapping exercise. I had no idea it was so challenging. Maybe it is something that will improve with practice.

johntPM profile image
johntPM in reply to Joanne_Joyce

Yes, you do improve with practice - for perhaps the first 10 times. This learning effect needs to be taken into account.

One use of this measurement is to measure the effect of your medication. Take a reading while "off" and later while "on".

John

landman profile image
landman

Are you tracking your victories or your symptoms?

As for me I keep log, but only write on Tues & Fridays. I put in outlook and set it up as a recurring task.

Joanne_Joyce profile image
Joanne_Joyce in reply to landman

Landman, thanks for the suggestion. Twice a week is probably more realistic. Hope we all get lots of victories to track!

Balderdash profile image
Balderdash

Most programmes on your PC now have mobile compatible software.Difficult if your trying to cross platforms ie using apple platform on one and microsoft on another.Are you recordings for your own purpose or as part of a study,If its for personal use.What are your measures and how are recordings illustrated.

Joanne_Joyce profile image
Joanne_Joyce in reply to Balderdash

I just thought it would be easier to record on a phone since I carry it around . I try to record my motor fluctuations on an hourly basis in order to determine the effectivess of my present med schedule.

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