A better way of testing: I just went... - Cure Parkinson's

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A better way of testing

etterus profile image
11 Replies

I just went through off-on testing at Mohammad Ali research center in Phoenix. It is an impressive facility with great staff. However I am wondering why there isn't a more accurate method that doesn't require as much MD time and subjective interpreting.

I think it would be simple to fit the patient with gloves socks and a cap with motion detecting sensors. A few more sensors at the trunk and knees and elbows could also be applied. The resting activity as well as all functional tests both off and on would be recorded by a computer. A simple home unit with an ipod could keep track of our daily fluctuations and indicate the best med formulations.... we would only have to record the time and dose of meds. Tremors, freezing, balance gait... fluctuations, everything would be there. Sometimes I feel like an idiot when describing my situation to the Docs.

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etterus profile image
etterus
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11 Replies
CJ49 profile image
CJ49

I know what you mean...... I can't relate how I feel with the "right words." The description I end up with just doesn't quite fully explain the situation.....Oh well, I guess I should have read more novels when I was young....then my discriptive vocabulary would be more refined!

tlongmire profile image
tlongmire in reply to CJ49

Sadly, I have the same problem so I can relate to what you are saying.

Love and hugs, Terri

hilarypeta profile image
hilarypeta

Ive had three neurological reports so far and none of them have been accurate! I think they ned a leson in listening skills!

tlongmire profile image
tlongmire in reply to hilarypeta

I hear that! LOL. My family and friends have better listening skills and patience than most in the medical community. Too bad.

Love and hugs, Terri

shetawk profile image
shetawk in reply to hilarypeta

I type a timeline narrative of my symptoms and give a copy to Dr. for my file. That way I have a record for me, too.

PatV profile image
PatV

I agree! Way too subjective. And I ended up yelling at the neuro in training last visit (who's a sweetie, usually) "YOU'RE BADGERING THE WITNESS" I know too much Law and Order!

But really! Same question over and over. "How many times a day do you experience off ?" etc

tlongmire profile image
tlongmire

I agree etterus. I've had the same test at Mohammad Ali in Phoenix. The testing is very subjective. Your idea sounds like it would be a better diagnostic tool.

Love and hugs, Terri

hilarypeta profile image
hilarypeta

They keep asking if I have had any symptoms and end up scaring me that ill get them. I swear I never had hardly any symptoms until they weresuggested to me. Its a v dangerous tthing to do , i think! Most seem to be caused by side effects ofdrugs it seems to me,love and peace..

Pelley profile image
Pelley

just had an appt with a psycologist who insustred what I needed was sound sleep. I think he abourt fell of his chair when I asked him just what experience has he had with PD patients.

I told him the problem wasn't getting to sleep it was getting up after. They just don't listen like they should!

Hikoi profile image
Hikoi

Im a but lost etterus, what were they testing for and how do they do it? Thanks.

etterus profile image
etterus

one day 4.5 hours-neuropsychiatric next day off-on meds testing

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