Tracking my Parkinson's disease

Hi,

I have been tracking my Parkinson’s disease (PD) for a very long time. Since PD is a progressive condition, meaning that it continuously changes, my tracking focus and methods have changed over time. For the Keating Memorial Project I will be exploring tracking the quality of my gait. Let me know if you have any questions!

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Do you already have some ideas of how you’ll track your gait? :slight_smile: Id be Curious to hear if there are tools for it out there already!

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Welcome! it’s wonderful to have you here!

Are you thinking about using the one-button tracker? I’m curious about your thoughts so far about how to track it.

I find a lot of “qualitative” things I wonder about in my life where I’m not sure how to track it – and yet those things seem so important for the questions that really matter to me. I’ve also wondered about setting up forms that prompt me for responses once or a couple times a day.

(Edit to add: sounds like @gedankenstuecke had a similar question! :slight_smile:)

I have been exploring ways to track my gait for a long time, literally since the first QSEU conference in 2011. Pretty soon I realised that the data collection part of gait tracking is really easy: there’s accelerometers pretty much everywhere these day. But the REALLY tricky part is to transform the X-Y-Z-t data into information and put that information into a useful context. Because what is really “high quality gait”? It depends on so many factors, for example: How tall are you? Are you walking or running? What kind of shoes are you wearing? And specific to PD: How well are my meds working currently?

So, I will be trying to track my gait qualitatively, by using the one-button tracker to record when I think my gait is working especially well and especially badly respectively. By doing that, I hope to be able to identify some kind of pattern.

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Thanks, I see great potential with this community! I think the answers to your questions can be found in my reply to @gedankenstuecke :slight_smile:

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@saraR Nice to read what you do to better understand your Parkinson. I got a message from Mad about this thread and your efforts.
Hope we can have contact and talk about what we both do and maybe learn or support eachother.

I’m a cluster headache patient, so something completely different. But we as community collect our own data and have setup our own data analysis to try and understand how effective our treatments are and to see how we change through and how we differ from other members of our group.

Some examples of what we do:


Something we do is create timelines. A timeline is a plot with hours of the day on the y-axis and the days of the registered time on the x-axis. Every attack is listed on the place of occurance and the color represents the intensity.


But to understand change we also make plots like these, where you see the amount of attacks in every month and inside that bar, the intensity is shown of those attacks. Giving a good insight in how this person changed.


These are examples of plots showing when we (on average) have our attacks. The time of attacks could say something about the individual patients and could maybe help better understand why treatments work for one and not for the other.

What we have now: We have our own app active. It works with buttons and everybody uses the buttons they need. Every button is a symptom or treatment and we can add any that is needed.
We store our data on OpenHumans and have the cooporation from the Ubiqum Code Academy (Barcelona- Spain) to help us analyse and visualise our data.

What we hope to build: Collecting data alone isn’t really funny and if you don’t have community, its always n=1. Meaning all you think to find out can be a coincidence. So community and a platform to support it should be build. Problem with community is that we need many thins to get it active and fuctional. We need a member list, we need to be able to contact the organization, receive news, Chat, extrenal communication, knowledge starage and our own “data analysis” So this can get very complicated to get in one app- or platform.

I’ve designed a setup for that that I think will be understandable and fun to use (colors changed after uploading to this forum). The idea is to compare community to a town. If you go to a town, you can go to the townhall to ask general information or see who is member of it. If you want news, you get the local newspaper. If you want to chat you can go to the bar and meet fellow members. A town can also have a factory where the community could import raw data to produce trends and patterns. Many other buildings could be added like a library, a hospital, theatre and we all know what these mean.

Our setup is usable for other groups interested in doing their own research. I will start a crowdfunding for it soon to see if I can get this funded. If you like it, have interest or any question, please contact me at info@nobism.com and I’ll get back to you.

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Yeah, I assumed that using some kind of accelerometer/gyroscope data would be useful for this, but I remember Brian Bot of Sage Bionetworks giving presentations on how hard it is to actually convert those x/y/z values into more meaningful data, as just the orientation of the phone plays a big role in the data collected (and I think Gary can say a lot about that as well from his tremor tracking experience).

Do you have a protocol to minimize the variations between recordings? :slight_smile:

Funny, because I’m returning to the one button to track my tremor (for now). I have some methods of reducing measurement variability using the accelerometer, because I’m measuring something much simpler than gate. However, I’ve lost confidence in the numerical score that I create from my measurements. Until I have this sorted out, I’m going back to the 1-Button.

Thank you @nobismRogierKoning, what you are doing is very interesting and definitely of potential interest also for other disease groups. How many people are actively using your platform today?

@gedankenstuecke I’m not sure that I understand what you mean re minimising the variations between recordings?

Brian Bot gave examples of how the data looks completely different, just based on how the phone is held (vertically, upside down, horizontally, etc) and thus makes it hard to compare the recorded X/Y/Z values as this variation between how the phone was held is much bigger than the actual signal of differences in gait.

That’s why I was wondering whether you had a protocol for yourself on how and where to hold the phone/accelerometer to minimize these variations that are not linked to your gait.

I understand your question now @gedankenstuecke and the variations you describe is one reason why I will not use accelerometers or my phone to track my gait. Instead I am planning to use a 1-button-tracker for recording times when my gait/movement is especially good or bad to try to find patterns relating to medication intake times.

Ah, got it and makes total sense! I had misunderstood it as wanting to correlate accelerometer data to the one-button-data, I blame jetlag!

@SaraR I want to do something similar, but because I have an additional dx which has become more pressing than the PD - myelitis - which has become my focus. I want to track my spasticity, because it so variable - to see if it has a pattern. I am going to journal for now for mine, but I am really curious to see how your study goes. I’m going to start a separate thread, but I’m going to watch what you’re doing for ideas.
Fran Lo

We have about 40 that collected data, over 140 that seem to store data on OpenHumans. In the base we have about 8 now with detailed data over longer time that share it also back so we can use the reports. Those are most valuable because they;ve tried already various treatments and its interesting to see changes happening, even if its only with a few.