Status: 5/20/14, All My Trials

No, I’m not having trials in my daily existence.  On the contrary, I feel great and got a great review at my last neurologist visit.  The trials I’m referring to are research trials. I’m a fervent believer in volunteering for PD research and I’ve now had a Parkinson’s diagnosis long enough that I am involved in some followup research.

(Psst….wanna be a hero and participate in PD research?  Both people with PD and healthy people (controls) are needed.  Sign up at Fox Trial Finder.) 

One followup is the CAM trial from the local naturopathic institution, Bastyr University.  CAM stands for Complementary/Alternative Medicine, i.e., non-conventional.  I fill out a lengthy on-line questionnaire every six months about how I’m feeling and what I’m eating.  The study’s goal is to assess whether there is some common thread in the diet of people with PD that mitigates (or worsens) the disease.

Any research trial involves lots of paperwork!

Any research trial involves lots of paperwork!

Today’s trial was an annual followup to the PANUC and PaGeR studies at the Veteran’s Hospital.  My researcher was Darla Chapman, RN.  PANUC (Pacific Northwest Udall Center) refers both to the research center and a study gathering core data, especially on cognition.  There are 14 Udall Centers at Veteran’s Hospitals nationwide, all devoted to Parkinson’s research, and inspired by the late Mo Udall, a much beloved US Representative from Utah who had Parkinson’s.

"This won't hurt a bit." Darla prepares to draw blood.

“This won’t hurt a bit.” Darla prepares to draw blood.

The PaGeR study (Parkinson’s Genetic Research) is a subset of PANUC; it uses core information from PANUC, plus does additional genetic testing on the blood sample that is gathered for both  trials.  A new option since I participated in these trials last year is that you can choose to be informed of the results of genetic testing if (and only if) you have a genetic variant tied to PD (or other neurological diseases).  I jumped at the chance to get this information.   It will take a couple months and the researchers won’t contact me if the testing shows no genetic variations tied to PD.

I spent about three hours at the VA, going over the forms (that’s about half-hour right there!), giving medical history, and going through a neurological exam.  Part of the medical history section was responding to a questionnaire about activities of daily living (Problems handling personal finances?  Organizing your day? etc.)  No problems with any of these except “Learning new electronic devices.”  (Who doesn’t have problems with this?!)

Most of the time was taken up in cognition tests.  Lots of memory tests, ranging from “repeat the three numbers the researcher just said”, to “tell the researcher what you remember of the dozen random words she said ten minutes ago”.   Last year, for the exercise of repeating back (backwards!) a combination of letters and digits, I got up to eight.  This year was only seven…Dang!  The task I most dreaded was copying line drawings, but despite my cringing at all things artistic, I did okay.   The toughest task turned out to be rapidly repeating a page of words.  The catch?  You had to repeat the color of the ink, not the actual word.  For example, the word “Blue” was printed in red ink, followed by “Red” in green ink, followed by “Green” in blue ink.

Warm, welcoming halls of Veteran's Hospital.

Warm, welcoming halls of Veteran’s Hospital.

Sea of cars at VA.

Sea of cars at VA.

I think part of my cognition test was just finding the examining room at VA.  The parking lot is a chaotic mass of automobiles, so zoo-like they actually offer free valet  parking.  I am very glad I don’t go there regularly.  It’s a grim, crowded and chaotic setting — is this really the best we can do for our Vets?

About Laura Kennedy Gould

Author of "The Magic Trick -- Life with Parkinson's"
This entry was posted in Parkinson's Basics, Parkinson's People, Parkinson's Research, Status. Bookmark the permalink.

One Response to Status: 5/20/14, All My Trials

  1. Jean says:

    Cool info. I can see your enthusiasm for participating because you are more intellectually active than many people. But just wait until they start asking questions from freshman algebra! I don’t know about you but I can’t recall how any of that worked.

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