Do you use any devices or apps to monitor your Parkinson's - or would you be interested to try some out?

[CPT_Helen]

We are aware of a number of apps which people with Parkinson's use to monitor their PD (below). It would be fantastic if you would consider testing these for us, and then completing a very short questionnaire to tell us what you think about them, and whether you found them useful or not

Tremor meter

i-seismometer

tremortracer

speedtapping

fast fingers

react time

tapitap

dexteria

i-trem

This is not a definitive list by any means, if you know of or have others that you find useful, do please let us know.

With very many thanks

Q

surveymonkey.com/s/XKPXXJS

[Hidden]

First I have heard of any sort of monitoring available or who uses them.

Being a retired Nurse I would be interested to learn more.

[jillannf6]

hi

yes i should like to try out soem fo the monitoring devices

lol Jill

[Court]

I would be willing to try some of the monitoring devices. My main symptom is a tremor.

[ham2257]

Yes, I would like to try out some of the monitoring devices.

[Hamish]

yes I would be interested in trying a monitoring device, I suffer mostly from tremor

[AlanEG]

Yes I would like to try one or some of these, not least because on a voluntary basis I am an expert patient for 3rd and 4th year Medical students at our local neurologic centre

[froggatt55]

Hello Helen

I too would be very interested in trying out these apps for you. I last saw you in Preston

Bob (Froggatt55)

[PatV]

I don't have tremor but dystonia and immobility, Any way to measure that?

[hanuman]

I'm not currently using any apps or devices but would be very happy to test some.

[bimal1763]

Sure I would try it might be goood for me,

[JeanetteCW]

I'd be very interested in testing and reviewing apps for PD. My smartphone and I are ready. I do participate in clinical trials so I know the nature of participation and review. Thanks for asking for volunteers!

Jeanette

[CJ49]

I too would be interested in finding out more.

[jimsey]

would be happy to particapate.

have worked with local P . groups

[Grams7]

Please add me to this trial. i live in Dallas area and use Tx Neurology.

[mitchdee]

i would be more than willing, in the early stages and it would be interesting to find out if pd is progressing or its all in my head. i think my tremour is getting worse but gp says this is because i have a chest infection at the moment. i live in scotland and on mirapixen.

[NanCyclist]

Haven't heard of them. Would be eager to try a tremor monitor.

[myHealthPal]

Hi folks,

After i was diagnosed with PD last year i have been working on a new healthcare initiative, and since then have invested a lot of time, effort and money in setting up and creating myHealthPal™. myHealthPal's will provide multi-condition support, tools and resources for both the patient and carer and the first condition we are tackling is Parkinson's.

There is a holding website under development at the moment, take a peek at myHealthPal.com where all being well if you should be able to watch a small slide show with snippets of the first mobile app together with find some additional information.

We have spent time with several UK leading charities and hopefully will be working with them moving forward and i look forward to supporting these guys in their fantastic work.

Unlike anything else out there this is not simply an app to measure a tremor or draw a line, this is about helping to manage a condition for yourself or someone you love, it is about creating a care circle™ where you can share your various aspects of a condition with those in your circe, this can include your medication schedule, your tests etc. Self support and engaging others is important, its the reason we are all on sites like this and we have continued this by building Live Chat and chat rooms in to both the apps and the website, there is the ability to post questions and blog in the same way.

I wont go into the total in and out at this stage but a couple keys parts to this other than those we have touched on above include medication management allowing medication to be scheduled and reminders delivered in 4 ways, for users with smartphones this can be a notification (the app doesn't need to be running), it can be a simple email or a sms / text message to an mobile phone or a personalised voice reminder to a landline number. You can schedule several other events also, these can be tests, simple questions you want to ask yourself everyday and reminders for these can be delivered the same way.

When we are looking at tests we have 3 categories;

1/. Physical including spiral, tremor, balance

2/. Assessments including recognised measurement scales to measure progression

3/. Daily Living to record your experiences in daily life

Physical tests are recorded and can be viewed by anyone in your care circle who you have given sharing permissions to. Everything you do is recorded against your timeline which can be viewed, exported and we hope will help during any consultation phase.

I could go on for ages, and whilst i haven't posted any new images on twitter or facebook you can find detail on myHealthPal.com and i will put a couple new images for timeline up shortly.

We are aiming for release this side of Christmas but there is still lots of work to be done, we are currently about 80% through the iOS (Apple iPhone / iPad) phase with the website and Android to follow and all being well everything will be this side of Christmas.

We also have several trademark registration in progress and are waiting for our patent pending status, we can also be found on all the other usuals suspects Facebook, twitter, youtube and linkedIn. On a person note I can often be found posting poems and other stuff about life on various sites.

I hope i didn't waffle on too long and speak soon.

Mike

[myHealthPal]

Hi Helen,

Sorry just noticed it was your post.

I hope your well, you wasn't around when i last came over for a catch up with Tom & Jon. I know Jon thinks we are ready for some more user testing but I'm holding off for a while longer as the changes to the notification system and timeline will be done in around 25-30 days. Good news is since my last visit the big button mode has been implemented for the menu system and the full screen replacement keyboard making it easier to use when tremor is present.

I am also speaking with a couple watch manufacturers about delivering reminders directly to a watch, ill drop you an email and hopefully next time i come over you can be there to have a look at the app working on the phone also.

Speak soon.

Mike

[Helenxxx]

Obvious that LOTS of people are interested...as I am, on behalf of my husband!! Will look out for more info.

[honeycombe3]

Hi Helen, I was unaware of these apps before reading your post. I'm game for anything that might help in any way but I need more detail on how to access these if you can help. Thanks for the info/invitation.

Angela

[oldskool49]

This a first for me as well. Sometimes I present something new to my PD Doc. But yes I would like to be a tester.

[jillfd]

Ok,so I took the time to link to survey monkey site.

The instructions need clarification (where are apps found, what location (country) are you focusing on?)

Some research should be done on apps before listing in the survey. The following information is from the App store on my I-phone (USA)

Tremor meter - listed for medicall professionals and costs $6.99 - no ratings

i-seismometer- actually" i seismometer"- will not load

tremortracer -$3.99 - 2 star ratings - bad reviews

speedtapping -won't load

fast fingers- Ireflex - Fast Fingers $.99 2 star rating -

react time -couldn't find

tapitap- couldn't find

Dexteria- $4.99 and 4 stars - for use by OT in therapy but can see potential for PD use here

i-trem -couldn't find.

You have a fine idea here but bad data is worse than no data, correct?

You'll have dozens of participants.

Thaaat'ss allll Folks

Aloha,

Jill