Are you using this PD-tracking app?

[PDWarrior1900]

It requires an ipad which I don't have... bummer ...

Her website is: PD-Symptoms.com

Some of you know her: Laurie Mischley

Excellent PD channel on YouTube with 24 videos:

youtube.com/@lauriemischley...

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youtu.be/5tx8rNBWx4M(Not working as expected?)

[CaseyInsights]

The Parkinson Symptom Tracking (PRO-PD) App is freely available on your app store for phones and tablets, for both iOS and Android🌺

[PDWarrior1900 in reply to CaseyInsights]

thanks for the tip! are you using it?

[CaseyInsights in reply to PDWarrior1900]

Just down loaded. Will have a look later this week, to get a feel (I do not have Parkinson’s).

Then I will introduce it to my spouse - PwP.

Looks interesting, will find out soon enough if it is useful🌹

[Divii in reply to CaseyInsights]

hi there Casey! Can’t find on iOS

[CaseyInsights in reply to Divii]

Try propd (no dash) in the App Store

or

google.com/url?sa=t&rct=j&q...

[Daisies22 in reply to Divii]

Hello,On iOS you could do a search for "Parkinson Symptom Tracking" and PRO-PD is the first app on the list.

I've just downloaded it and I'm not very impressed as it is very subjective.

I was hoping for an app that can collect and analyse data from wearable devices.

[Gioc in reply to Daisies22]

IF you find a good app for wearable devices let me know. Thanks in advance.

Greetings from Italy.

Gio

Vasi

[Smokeypurple in reply to Daisies22]

I've got the app on my phone and a reminder on my calendar to complete once a month. Yes it's my log of my experience but doing it once a month should iron out the discrepancies caused by mood etc and it logs so many things it helps me to build up a picture of my particular version of this varied syndrome over time. There is an option for your data to be used in research - which is how I found out about the pro pd questionnaire originally as it was on the web first and part of the Camcare study, now the MVP study.

mvp-study.com/

I think the more objective stuff will come - I get the PKG watch by Global Kinetics from my neurologist to wear for 7 days every now and then enabling him to compare an objective measure of my tremor and lack of movement. The problem is that the data is difficult to read and easily misinterpreted. If I ask anyone other than a senior nurse or member of the consultant team they can't read it.

But you're right, when it comes it will really help. Apple watch is already very good in this area, and can show us the equality (or lack of!) of left/right gait over the course of the day - even just carrying your iPhone can do this - and the Oura ring is very helpful for sleep info.

[Daisies22 in reply to Smokeypurple]

Hello,

Thank you for your comments and apologies if I have offended you or anyone else who uses the app, this was not my intention.

I watched the presentation and I thought it was actually a very good one. Perhaps for this reason I had a bit higher expectations for the app. I agree with you that it is a good idea to have data that allow meaningful conclusions to be drawn. Even though the data might be slightly subjective in this case (simply because people are bad data-taking devices).

Also, thank you for mentioning the watch your Neurologist has asked you to wear. I had no idea that such a device existsed!

I'm seeing my Neurologist in a couple of days and am going to ask why no-one has even mentioned it to me.

D.

[Smokeypurple in reply to Daisies22]

No offence taken here 😊!

It was interesting seeing the watch results from 2019 next to 2022. The consultant could point out how the movement line in the graph had lowered, he could show me why I was stiff at night and give me rationale for prescribing. It was helpful to me to see it, as I tend to be 'I'm fine, I'm fine' - it showed me that although my progression is slow, it is there and that I mustn't let my body slow down too far!

The second watch was part of a clinical trial I took part in, but he was able to access it to do the comparison.

[Daisies22 in reply to Smokeypurple]

This watch gives more information than my Apple watch series 8! I'm going to research it right now as I'm having serious problems caused by the anti-Parkinson's medication and not the disease itself. It is so bad that if I have any Parkinson's symptoms they are completely obscured by the effects of the medication. I've been three times in A&E but I feel that the patient is not listened to and a lot of effort is made to transfer the blame onto the patient (at least where we live).Thanks again for the information!

D.

[Michel0220]

I will have the pleasure of hosting a presentation by Laurie Mischley on the 15th of May. Please see my previous post on this if you want to join. There will be a Q&A at the end. She is probably one of the best PD naturopaths in the world.

[gomelgo in reply to Michel0220]

Please post link here. I find it very confusing searching these forums

[Michel0220 in reply to gomelgo]

Here it is:

eventbrite.co.uk/e/dr-l-mis...

[dkdc]

Available for a android too.