I spent last Thursday and Friday at Vanderbilt Hospital in Nashville undergoing testing to see how my disease has progressed since my DBS surgery which was completed four years ago this past July. I thought I'd share the test results with my extended PD Family since you have all been along for the ride for some time now. So, here goes...
Physically, I'm holding up pretty well, in fact, "holding" would definitely be the operative word. I was in Stage II before the surgery and, as of now, I remain there. My general PD symptoms (balance, tremor, etc.) were evaluated with my DBS switched off for a period of time and then again with it switched back on. The disease has, of course, progressed, but the DBS has kept the physical changes I have undergone from making themselves too apparent in my body--because, so far, when they appear, a DBS adjustment usually corrects the problem. At the time of my surgery I was on 600mg of Sinemet a day, now I am taking between 400 to 600mg daily. My MDS scheduled me for another evaluation in a year.
Then, there was the neuropsychology department and the cognitive functions testing--the thing I dread every time. Mixed news there, but on the whole, I'd say relatively positive results. There have been, as my neuropsyche doc put it, "some changes in your cognitive functioning." Hmm... OK, what? Well, it seems I am a little slower at retaining new data than I was four years ago. Also, on the dot-to-dot testing (as I call it), I have slowed down. This is the test where you are asked to draw a line in numerical order from multiple numbers jumbled on a page. Then, in numerical and alphabetical order from numbers and letters jumbled on a page (1-a-2-b and so on). Evidently, I'm slower at this test than I was four years ago.
The UPside, however--and, the area of my greatest fear--is that I am showing, "absolutely no signs whatsoever of Alzheimer's or early dementia." Well, I'll take dot-to-dot slowness over slowly going dotty any day of the week!
In other areas of brain testing, I'm told I knocked it out of the ballpark. The tester very kindly thanked me for being, "the most fun person" he'd ever tested, which I thought was rather nice, since I fear it can be annoying--I make jokes when I am nervous. On the, "say as many words beginning with the letter "S" as you can in one minute" test, I gave words such as, "serendipity, serenity, sacrifice, synonym, and shale..." where most people, they tell me, list words such as, "sleep, sit, sorry, and seven." The tester rather thought I favoured Royalty in "my name as many boy's names as you can in one minute" test, but really, George and Edward were my father's names and I have relatives to thank for leading me to James, William, Henry and so-on.
My DBS battery is still going strong (currently at 2.94) and my MDS thinks I could get at least another 2 years out of it at this rate.
So, there you have it... pretty much, good news I'd say. I'm passing the information on in hopes it will prove useful to someone in some way.