Coming off my PD drugs

Issi 8 · 09-10-2015, 01:28 PM

[QUOTE=bluedahlia;1169638]Janette, sounds to me like you have ldopa responsive dystonia. Have you ever taken artane?

Hi No I haven't taken Artane, Thanks

johnt · 09-11-2015, 01:12 PM

Issi 8,

Your scores on the side-to-side tap test are high for both a PwP and a healthy person. (Note for this test "high" means good, whereas for the UPDRS test "high" means bad.)

The test you did was a stand-alone version that did not store the results. There is also a different version that stores the results and on which statistics are calculated. These show that the test has been taken 770 times, almost all by people diagnosed with Parkinson's. There, the mean for the left-hand is 20.7 and for the right-hand it is 20.4, and with maximum values of 38.4 and 40.6, respectively.

On the other hand, your test score increased slightly after you took your drugs, which hints at a response to the dugs. But this is a single result, so it does not have statistical significance.

If you want to keep track of your scores over time, you can register at:

http://www.parkinsonsmeasurement.org/PDMeasure/

John

ravenloonatik · 10-17-2015, 12:47 PM

Quote:

Originally Posted by TexasTom

I'll admit I am feeling so good I do think "is this all in my head?" Then I mess up and forget my medication dose, and realize "uh oh what happened" as I seem to go from 40 to 80 years old.

Comtan is used to boost the on time of sinmet. It is one you do not want to split (if there are scribe lines like sinmet, safe to split.... no scribe line it is not meant to be split).

Slow change is good. So drop just one dose of comtan for a week.... then a second comtan... then the third. Give yourself three weeks with no comtan before making any other changes. TALK TO YOUR DOCTOR First before any change.

Daily journal really does help. I was doing 3 x daily of 2-25/100 sinemet and one 200mg comtan. I would wake up in pretzel man mode around 1am. Finally added a fourth dose around 10pm which helped making it through the night. I had missed what was going on, but looking at the journal it was obvious.

Tom

Hi Tom....
I was also misdiagnosed with Early onset PD from 10 years ago but I was not taking any L-dopa or Sinemet. I had a similar experience to Jannette(sp?)

I have just been recently diagnosed with Segawa Syndrome (this month) as well and for the first time in 10-15 years I am walking relatively "normal" now and do not wake up "like a pretzel" either with 4 doses of Sinemet
(I laughed out loud about the pretzel comment as it is a great description)

Very little support out there as far as I've seen so far for Segawa or DRD so it is very nice to have a kindred spirit around who also "feels like it's all in my head" (it really is)
.... I joke and tell people it's Mad Cow

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
Are newer drugs safer than older drugs?	mrsD	Medications & Treatments	2	09-23-2011 05:09 PM

Site Navigation

NeuroTalk Online Support Groups

Coming off my PD drugs

NeuroTalk Forums