Thanks you for volunteering for research. Folks volunteering for studies is the only way we will learn more about Parkinson as well as all matters of the human condition.
If you do look at those word lists, you will screw up the research. Please don't do it.
Did they name the tests on the consent form?
Honestly, them sending you a smell test by mail and giving you the names of the tests on the consent form suggests research integrity issues.
Too late - yes I memorized 6 lists of 12 words. Nailed that part of the exam, but they weren't impressed.
They sent me the smell test about 6 months ago - I think it was before I had even consented to the study, maybe part of the potential cohort screening or something. Today they said they don't do that any more, and they gave me a more advanced version of the same test in the exam room.ETA - yes, the smell test was part of the pre-selection process to decide which group I would be assigned to (genetic cohort, unaffected with PD):
Also of note, the smell test and self-report questionnaire that we mailed you are being phased out of the study so your study group assignment will not be made based on this assessment.
During the consent visit they gave me a spreadsheet that shows which tests or procedures I'll have for each of my 12 semi-annual visits - so I just Googled them and this list memorizing thing kind of appealed to me as a hack. I figure if I really did have a cognitive impairment I wouldn't be able to do that anyway - and what they're really looking for is deterioration over time, so I'll have to memorize them again next time or else I'll look like I'm losing it. There were several other cognitive tests that would've shown any issues as well... for instance given a string of 3 to 6 letters and digits, sort them in your head and repeat them back numbers first smallest to largest, and then letters in alphabetical order. Some of the tests have a specific name like "Montreal Cognitive Assessment", and some of them are more general like "semantic fluency". My mom was a clinical psychologist, I remember her discussing a lot of these tests and how brain impairment makes people not be able to do them.
There are also physical tests looking for fine motor skills, balance, coordination and things, and blood work.
The MRI was much less traumatic (noisy) than the last one I had.
And the spinal tap wasn't awful either... a couple moments during the procedure were painful enough to make me wince , but overall, just not that bad. Can't exercise for 48 hours though.
Next visit in 6 months.