WOAH WOAH SLOW DOWN !!!!!!!!!!! You're a smart lady--now ASK yourself: "Where is this going?" SERIOUSLY where is this going???

Is there some fantastic new secret drug that ONLY SHE HAS? I don't THINK SO !!!!!!!!! So just where is this going???? Because at the end of the TEST she has the SAME options she had BEFORE it, but it's akin to HER INFLICTING HER testing UPON you for some BENEFIT TO HER TO HER TO HER...did you hear those words? TO HER, not to you.

ALL of the docs have the same paltry? selection of medications-- WITH their various drawbacks. TBC

For most of us, just showing up for an appointment takes some "doing" SIX hours of testing is more than grueling. Did you READ the word you used? That tells you a lot. Fifteen minute WALK??? Unfortunately with records being all digitized the liklihood of getting a fresh opinon ANYwhere by ANY doc is going to be nigh? unto impossible as upon your first visit the doc sees what the previous one stated about you. I think this is more likely to close doors that are important to you than open some new door. I hope you will think this over before you put yourself in the hands of others for hours on end.

No thanks.

God bless you dear.

I have had cognitive testing done, but nothing on the scale you are talking about. I have to do them once a year for the PPMI study, however the longest mine lasted was less than an hour.. During some of my regular Neuro visits, he has asked me weird things to check my memory - like name the Presidents - and I almost always fail. lol

I do understand the frustration, and breaking down - and actually I joke with the nurse about it - and have dubbed them "the make me feel stupid" tests. However, my consolation is that since my husband is in the study as part of the control group - he also has to do them, and finds them just as frustrating and embarrassing.

Maybe since you have already done it once - it won't be so bad the 2nd time around. Hugs!

Or like Wewillwin is suggesting, you can just refuse to do it! I think they can serve a purpose, but I certainly would want to know if there is less severe testing that could be done - that might serve the same purpose.

Here is an interesting article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3012617/

I have done it ,but it was part of resurge i agree to be part of. It did take 4-5 hr. I was not stressed because my memory is good I only had a problem figuring out the date , I refuse to answer because i do not work so i do not look at the calendar. After the test i always lock what date it is.Just so no one specially my husband does not lock at me like[OMG SHE IS STARTING WITH DEMENTIA].
So i think do it ,do not be afraid, you find out what you have problem with and get a chance to work on it. They are not going to lock you up and throw away the keys . I think it is just a test to see where you are and the doctors comparing the findings .You can train your brain . just like exercise the body, play brain games on computer, I do that and cross word puzzle and sudoku every day. Also try to eat with the other hand you do not use normally , use the same hand to control the mouse on computer ,change your routine and do anything which help you to boost your memory. Reed learn to play instrument,I started playing the piano again and recorder which helps me with my voice problem. there is no rest now you have to work hard to help your self to keep what you still have. It is good. Trust me it is worth it. You feel much better and you will not worry so much.Good luck and do not be so hard on your self.

That testing is ridiculous. My husband goes to a Motion Disorder Specialist which is a neurologist but specializes in that field. He even has a column in the Parkinson's Society Magaizine. His first appointment 6 years ago involved an hour with the nurse asking questions about his medical history and some memory tests, and then the medical assistant/student asked questions since it was in a University Hospital and then the MDS asking more and checking reflexes etc.which lasted about an hour. This was the routine for a year or two, but not the lengthy as the initial diagnosis. He goes every six months but he doesn't see the nurse now, basically the assistant who takes notes and then the specialist see him for a little while when we can state our concerns. etc. .
The first time he had a memory test he was asked to count by seven backward from 100. Well he could only do 93........ and maybe 86...........but that was it. I believe that was unfair because most people would have problems without having PD. He also asked to remember 3 words and then about 5-10 minutes later, asked to repeat them.
I believe the 4-5 hour testing is very out of line for a doctor. Are they getting paid big bucks for this service? What does it show in the end. I imagine you are also paying big bucks for this too.
If there was a reason for the testing such as whether you should still be driving a car, then maybe, but the don't even take that long for testing. My husband is going to be assessed at a Drive Able Rehab program to see if he can still drive and that involves neurologists, etc. evaluating using a computer for memory and reflexes etc. which is hard to explain here. The testing takes about one and a half hours and if he passes that part then he will take a driving test. The test isn't conducted by the Ministry of Transportation either, but by technicians who determine if they are still able to drive. It costs $550 but at this point his driver's license was pulled by the doctor because of concerns he had so he needs to do this.
. It wasn't even the Motion Disorder Specialist who pulled the license and he who was surprised that my husband's family doctor had concerns. The problem is that if any doctor has concerns, then he has to report it. We are hoping that he will get his license back. My husband's is having problems expressing himself,,,,,,,,,,finding words, so maybe that is the reason for the doctor's concern.........

Anyway, if you have already been diagnosed with PD. why would they want to put you through this regiment. The doctor could simply check on you every 6 months similar to my husband and see if there is any change and if you need to go on medication or up your medication.
. If you have a spouse have him go with you to the appointments so they know what the doctor is saying in case you forgive a certain point.
I give my concerns to the doctor even though I have to take in front of my husband,. Sometimes he says things are going okay, but I know differently.
So to summarize....sorry I went on for so long........I would definite try to find a different doctor or else give your concerns and tell her what other people are doing..........if you think she/he would listen.........GOOD LUCK.

I volunteered to be part of an ICICLE study which is a five year cognitive study. I only have to go once a year and yes it is a similar 6 - 7 hour day. I have to admit it wasn't purely for the advancement of research though, I wanted to see myself if I was at all affected.

I had a lot if walking tests too whilst repeating a given series of numbers. The markers on me created a computer image which could be seen to slow down or even stop when trying to recall the correct sequence. I know what you mean about feeling stressed and exhausted especially as I thought I was performing poorly so I found it very reassuring to know that I was perfectly fine.

Although the tests are tiring, I thought it was worth it, if we don't help the Dr's now how are they going to find the answers for the future?

Best of luck

Julie

I had one performed by a VA Psychiatrist. They had me count backwards by 7 from 100, he would read two paragraphs from some kinda of story. and I was suppose to recite like back verbatim. After 3 hours of testing he in all his wisdom (sarcastic) found me not able to handle cognitive issue. If that the kind of test it is. I don't put much faith in them. Best wishes. Brian

My nerurodoc gave a 15 minute cognitive evaluation. It included the count backwards by7 from 100, draw a clock and set the hands to the current time, and list as many animals as you can in a minute. i got 35.
If this all day testing is a requirement for your insurance or you are obligated in some other way grin and bear it. If you have no obligation to participate just say NO.

im with www on this, sounds like another doc needs his european vacation $$$ for christmas......what a joke....i did 1/2 hr neuro cog eval. as part of my original workup. any more than that is pointless unless you are having cognitive issues and want to know for yourself. Stress makes PD worse...period. dont let the hacks make you pay for their hoidays....

Brer T

I had that EXACT test done and I was totally exhausted from it. The psychologist that ordered it was --- let's say looking to explain why she had her job. The test was for TWO days about 5 hrs each day.....so stupid.

First of all, I spent too much time analyzing everything because at most job interviews these days they give you short tests just to see your IQ level. That is what I first thought was going on. There are trick questions on them as their were with this one also. Asking the same questions but in a different way to see if you answered the same both times. Then stupid 'little kid stuff' questions also. I did not do well on it because of taking too long and reading too much into it so she thought I did that 'unpurpose'. It was a complete waste of time and tons of money charged to the insurance needlessly. Although she did rank me with a very high IQ.....lol.

If I were you....I would cancel it out and not go. I will never do that again. It is so ridiculous what drs cook up for a person to do. It did not benefit me one bit nor really help anything. Best wishes.

I have done two of these testing episodes for trials. It is really grueling!!! I get there at 9:00 and am there until 12:30 and can only take a break to go to the bathroom. I guess if I wanted to they would let me walk around but I usually just want to get out of there. I love games so I don't mind it and think it is kind of fun for a while - but let me tell you at the end of the sessions I am glad it is over with. I had to count backwards by 7 and I did really good because I am addicted to a 21 countdown game. lol My own neuro has never asked me to do cognitive testing but gets a report from Columbia. The most important thing is that I try to relax there are

sorry - thought I was done. They tell me all the time there are no right answers and not to worry - so when I follow that - I'm ok.

You Tube is free -- I have 2 and a half y e a r s of videos that I can view at ANY time of myself to see what kind of shape I am in. NONE are rehearsed. There are hundreds and that is ALL I NEED to see the truth objectively. IT IS FREE FOR ALL to use and you can make them private so nobody else can view them It would be GOOD TO HAVE such PROOF of the kind of shape you are in should you NEED or want to prove it at any time, but being judged by someone who doesn't KNOW you well with ONLY a written report should scare the hell out of patients because hey what have you got to lose???? A lot. AND YES stress is bad for us period.
www

THANK YOU all for your comments / sharing your experiences. I have read thru them twice over the past 2 days - the 2nd time to REALLY read what is being said to me.

Quite honestly - I wasn't sure if this is standard testing for PD patients or if my neuro was just stuck on this. (I forgot - she did give me an online test about a year ago in her office. It lasted less than 10 minutes...now that test did seem totally worthless.)

I have given it a lot of thought & I plan to look elsewhere for a doctor specializing in PD - not a neuro that covers some PD patients as a part of her practice. It will mean 1 1/2 hr drive if I go to the closest University Hospital with an entire dept. specializing in PD. Or - I could drive about an hour (opposite direction) to see neuros specializing in Movement Disorders. Concerned about those PD days when making such a drive will not be possible, but thinking if I can get to the appt., then I can stay overnight there.

So - I had decided after my last neuro appt (just over a month ago) that I would go for the swallowing consultations ordered with a Speech Pathologist. (AMAZING help to me!) My Speech Path has requested additional visits to work on my soft voice....doc hasn't said "Yay" or "Nay" yet, but left pretty stern message last week that we need to know ASAP. I originally decided I would go for these neuro-cognitive tests, too. I was thinking they could be of benefit for my new doc. So - if I were taking these tests just for my current neuro, I would cancel. As it stands now - I feel I am going to go ahead & give up a day of my life for the testing, find out what the report says one week later, and prepare to gather data for my new doc.

Thanks again.....you were generous in your comments and truly have given me lots to think on.

Laura