if you haven’t downloaded this app and done the first questionnaire to get your base score here is the link.
educationismedicine.com/pro-pd
This looks like a great tool and this group could help her research by as many people as possible from all around the world joining in by downloading the app and answering the questionnaire on a regular basis. It can be just once a year if you want.
Here is her talking about it.
Some experiences can be found here
when one responds, should one be thinking either on or off medication?
It's about your average condition over the past week.
Again, medicated or not. The difference is huge
During the week with and without medication, including too much liquor, your fasting period, John's missed training fast walking, 5 evenings of Netflix and chips on the couch. Etc
do it regularly with whatever lifestyle modifications you have chosen and over time you will have a chart of your progression of you doing you. Then once a year she quizzes people about what they are doing . That enables her to compare different lifestyles and I think in future meds and supplements vs progression . That is her research goal, to be able to see which people are doing the best and what they are doing.
I think she treats levodopa as a dietary supplement so it’s on meds and supplements.
I've done the rating several times in the past. I've always rated myself in my "off" state.
I think the main thing is for everyone to pick a method for them and stick to it as she is most interested in the slope of the line ie the increase year by year. Some people will be natural optimists and others pessimists when assessing their own scores but slope should not be affected by that.
And the study really needs more geographic/ethnic etc diversity which this forum can probably provide.
Yes. It might also be good to know things like is all dairy bad or is dairy from the US bad due to food cows eat there but dairy from grass fed cows in say NZ ok.
Nothing personal at all, but I just have to say this here. Drinking the substance specifically meant for babies as an adult makes zero sense to me. It makes even less than zero sense when it's the substance meant for baby cows who need to gain several HUNDRED pounds in the space of a few months. What happened to weaning off milk? When did it stop making sense in the world to wean off milk as an adult?
Looks like a good idea, I'll tell my husband to get the app.
That's a good idea, very thorough.
I love this app and have been using my PRO-PD score to track my progression since I was diagnosed four years ago. For me, determining how my symptoms have been on average over the last week feels much more accurate than the UPDRS score my doctor uses after a few silly finger taps. The fact the score is comprised of 35 symptoms just makes so much more sense.
Most striking observation was that my PRO-PD score dropped by half after I went on Sinemet and started following Dr Mischley’s eating and supplement recommendations. (Which I did all at once.) And, my score has stayed about the same ever since.
I track my scores on a spreadsheet with notes about any changes I’ve made in my plan. I also check my score before each annual doc visit as a way of tracking progress.
Dr Mischley says the average person is diagnosed at a score of around 500 and progresses an average of 38 points per year. My goal is to beat that every year.
Good luck!
Is it correct there is a fee ? $10 per month ?
from their site
“PRO-PD App: Free
The Parkinson Symptom Tracking App can be downloaded free of charge from all major app stores.
Any individual can get a their score for free at any time without cost or registration. ”
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