A reason for hope
 

I was going through my badly neglected journal this afternoon and found something encouraging. There is a self-rating form called the UPDRS Rating Scale. It is a bit lengthy and you rate yourself in about 35 areas. Low numbers are good and the worst you can do is 128. Counting today I have filled it in 4 times in the last three years. The following are my unmedicated totals:

11/06/05 - 78
07/05/06 - 73
11/08/06 - 72
04/20/08 - 67

Those numbers should not be dropping by the standard way of thinking. Something is working, but I can only guess at what it is. Ginseng? MJFox are you out there?

Updrs
 

The UPDRS rating is used in many clinical trials as well as by neurologists, they have a special assistant they call in to assess you using this rating scale. So you can do it yourself, but it is also widely used professionally as well as by researchers. Just google it and you'll find lots of trials measuring the success/failure by the UPDRS rating.

Congrats on the lowering of the score, that is awesome and I hope you keep getting a lower and lower score! Thank you for sharing your white rat experiments and progress reports.

Interesting...Did you keep up with any changes in meds ,supplements,exercise,etc that might correspond to the improvement?

data slob
 

Yes, I do have a good bit of data but need to put in some time getting it organized and cleaned up. I will try to do that soon and post it.

Medications have always been limited to Sinemet, Sinemet CR, Requip, and Selegeline. A plethora of supplements have come and gone. The ones that I currently judge to be worth keeping I list in my signature line.

Just out of curiosity (and if it's not too personal), in which parts of the scale are you showing improvement? Is it global or big improvements in a couple of areas?

global
 

And that is particularly heartening. Elsewhere I posted on my test of ginseng over the last twelve months or so (a subset of the times noted above) and noted improvements in some specific areas that I attribute to that particular herbal, primarily because there weren't other contenders to muddy the waters. I had begun ginseng in hopes pof longerm gain and was surprised at the acute effects.But after several months I had to conclude definite improvements in bladder control and GI function (no more constipation). Neither of those lend itself to just being one's imagination :)

While the specifics get sloppy, I have to say that there has been overall improvement while reducing medication. And that is not supposed to happen. :D

I have a couple of theories. One is that the ginseng has stimulated neurogenesis. Another is that it has removed blockages that were preventing same. And quite possibly both.

updrs
 

It would be interesting if you can tell us your UPDRS scores on medication.

more data
 

I am going to start by pasting in the first and last UPDRS that I did. Then I will move on to a second post so that it doesn't get too long-

The earliest one=

11/06/05:
The 31 items on the UPDRS are divided into 3 major categories. Each item
is scored from 0 to 4. 0 = No impact / 4 = Major Impact.
Scoring is Medicated/Unmedicated..

Mentation, Mood, and Behavior:
Intellectual impairment = 0/3
Thought disorder = 0/3
Depression = 0/0
Motivation/initiative = 0/2

Daily Living:
Speech = 0/2
Salivation = 0/0
Swallowing = 0/1
Handwriting = 0/1
Use of eating utensils = 0/2
Dressing = 0/3
Hygiene = 0/3
Turning in bed = 0/3
Falling = 0/3
Freezing while walking = 0/4
Walking = 0/3
Tremor = 0/2
Sensory complaints = 0/2

Motor Function:
Speech = 0/2
Facial expression = 0/3
Tremor at rest = 0/3
Action or postural tremor = 0/2
Rigidity = 0/3
Finger taps = 0/3
Hand movements = 0/3
Rapid alternating movements = 0/3
Foot agility = 0/3
Arising from chair = 0/3
Posture = 0/4
Gait = 0/4
Postural stability = 0/4
Body bradykinesia = 0/4
Totals = 0/78 of possible 124



The latest one=

UPDRS Rating Scale – Date: __4__/__20__/__08__

The 31 items on the UPDRS are divided into 3 major categories. Each item
is scored from 0 to 4. 0 = No impact / 4 = Major Impact.

Scoring is two numbers: Medicated/Unmedicated (i.e. At your best and at your worst)

Mentation, Mood, and Behavior:
Intellectual impairment =0/3
Thought disorder =0/3
Depression =0/1
Motivation/initiative =0/2

Daily Living:
Speech =0/1
Salivation =0/0
Swallowing =0/1
Handwriting =0/1
Use of eating utensils =0/3
Dressing =0/3
Hygiene =0/2
Turning in bed =0/1
Falling =0/3
Freezing while walking =0/2
Walking =0/2
Tremor =0/2
Sensory complaints =0/1

Motor Function:
Speech =0/1
Facial expression =0/2
Tremor at rest =0/2
Action or postural tremor =0/2
Rigidity =0/3
Finger taps =0/2
Hand movements =0/3
Rapid alternating movements =0/3
Foot agility =0/3
Arising from chair =0/3
Posture =0/3
Gait =0/3
Postural stability =0/3
Body bradykinesia =0/3

Totals = 0/67

But wait! There's more!
 

In addition to the UPDRS, I use a simplified day tracker to record my subjective state from hour to hour. Since this is a much simpler form I have more of them. I am going to do first and last as before but add in one or two between.

9/12/05
Tracking scale (0 = Wheelchair/ 5 = Obvious to 3rd party / 10 = Ballet dancer}
Arising = 6
9 AM = 10
3 PM = 8
5 PM = 3
7 PM = 7
11 PM = 3
Turning in bed = 7
Hours of sleep 6 to 8
Avg times up to pee 2


12/15/05
Tracking scale (0 = Wheelchair/ 5 = Obvious to 3rd party / 10 = Ballet dancer}
Arising = 6
9 AM = 10
11 AM = 9
1 PM = 7
3 PM = 9
5 PM = 9
7 PM = 8
11 PM = 7
Turning in bed = 7
Hours of sleep 5 to 8
Avg times up to pee 2


3/19/06
Tracking scale (0 = Wheelchair/ 5 = Obvious to 3rd party / 10 = Ballet dancer}
Arising = 5
9 AM = 7
11 AM = 8
1 PM = 7
3 PM = 7
5 PM = 7
7 PM = 8
11 PM =
Turning in bed = 6
Hours of sleep = 10
Avg times up to pee = 4


7/05/06
Tracking scale (0 = Wheelchair/ 5 = Obvious to 3rd party / 10 = Ballet dancer}
Arising = 5
9 AM = 8
11 AM = 10
1 PM = 10
3 PM = 10
5 PM = 10
7 PM = 8
11 PM = 6
Turning in bed = 5
Hours of sleep = 7
Avg times up to pee = 2



11/08/06
Parkinson’s Tracking scale / Date:_11/_08/_06_

(0 = Wheelchair/ 5 = Obvious to 3rd party / 10 = Ballet dancer)

Arising = 4
9 AM = 6
11 AM = 10
1 PM = 10
3 PM = 10
5 PM = 10
7 PM = 9
11 PM = 3
Turning in bed = 6
Hours of sleep =7
Avg times up to bathroom = 3


12/31/06
Parkinson’s Tracking scale / Date:_12/31/06

(0 = Wheelchair/ 5 = Obvious to 3rd party / 10 = Ballet dancer)

Arising = 5
9 AM = 8
11 AM = 8
1 PM = 8
3 PM = 7
5 PM = 7
7 PM = 7
11 PM = 5
Turning in bed = 5
Hours of sleep =8
Avg times up to bathroom = 0


4/20/08

Parkinson’s Tracking scale / Date:_

(0 = Wheelchair/ 5 = Obvious to 3rd party / 10 = Ballet dancer)

Arising = 4
9 AM = 9
11 AM = 9
1 PM = 8
3 PM = 7
5 PM = 7
7 PM = 7
11 PM = 4
Turning in bed = 8
Hours of sleep =8
Avg times up to bathroom = 1


The changes aren't as dramatic but they are in the right direction. If one averages the first and last groups of hourly ratings, you get about six on the first and about seven on the last. Very subjective of course.

Finally, I will add some other data in one more post.
g

My gawd! Can no one stop him?
 

I also record a couple of other easy bits of data.

One is simply the number of steps it takes to cover a hundred feet in a relaxed manner. Shortening of stride is considered a sign of deterioration so lower numbers are good, higher bad.

4/20/08----35 steps
10/23/07-----36 steps
1/10/07---------35 steps
11/25/06-------38 steps!!!

I definitely will look at that short period at the end of '06.

Finally, I also use a "balance on one foot" test as a measure of balance and leg strength and for testing new supplements.
4/20/08------on right foot 18 sec / on left 44 sec
2/20/07-----------rt 25 / lft 78
1/21/07-----------22 and 50
12/31/06---------18 and 43
12/19/06---------5 and 18!! Again the end of '06.

Now, at last, some useful data-
"12/19/06
Still doing better overall but not as good as at first. Have been skipping all supplements so that may be cause. Will restart today.
Adding A-lipoic acid; ALC; Carnosine; Fish oil; multi; green tea; ginger"

I remember that turnaround because it was so dramatic and also the first time I used the balance tactic. It was the combo of alpha lipoic acid, acetyl-L-carnitine, and L-carnosine and it happened over about a three day period.

"1/21/07

Baseline info: I am taking every two hours or so; Requip 4 mg (1X) and Sinemet CR 25/100 (1X) for a daily total of 28 mg Requip and 700 mg levodopa

In addition I take 5 mg Eldepryl with my first dose and sometimes a single Sinemet 10/100.

Supplements: Alpha Lipoic Acid; Acetyl-L-Carnitine; L-Carnosine; Green Tea Extract; going to drop Ginger since Turmeric duplicates; Fish Oil; Flax Oil; just started Creatine

I am doing moderately well and much better than I was last month. Sleeping 7 to 9 hrs; polyuria mostly gone and am up avg of two times per night (occasionally none); good bladder control in daytime for the most part. Turning in bed has improved noticeably."

Well, for what it is worht. It was interesting to compile the mess.

medicated
 

Are you saying that when you are medicated you have a 0 score.That would mean you have no symtoms of PD while medicated.

Yes that is basically it
 

I rate it, however, at the best period in my daily cycle. So, on a given day I might move between the extremes with my highest scores when I first get up and my lowest (0) at late morning when things are working well. That is one reason I worked up the other system since the UPDRS didn't tell me how I was doing at a particular time of day, say, last year

I don't want anyone to read too much into it because it was not designed for anything but my own tracking and to be honest I could have done better on recording data, but the general improvement instead of decline is solid and important. I just wish the reasons why were clear..

those elusive reasons...
 

Reason for improvement? You have not changed meds during this time (unless I missed something) so that cannot be it. And by "change", I mean increase or add: if I remember correctly, you actually reduced meds during this time.

Doesn't sound like you embarked on any new physical exercise program, either, so that can't be it...although I understand that is really helping a lot of folks. That leaves your personal supplement regime (I'm assuming you combine that with healthy eating and no tap water)...so I think it's very encouraging to all. Everyone should try to keep track of how they feel so they, too, can monitor what works best for them. Don't forget the daily laughter quotient!!

That is
 

some tracking report Rick. Good skills. I note some of those reports date back to 07 where you were taking around 900mg per day of snmt, 700 of the faster release 100mg snmt and 200mg of the Controlled Release. How does that compare with what you are taking today? Is there others taking 1500mg or more of snmt per day? If so what is the outcome? How long have you been on that level. What is considered a safe level?

Great thread Rick.

thanks
 

If I had known tht I'd get results I would have minute detail 24/7 but who'd uh thunk it? :)

Before I started the mucuna trial and near the end of the ginseng trial six or eight weeks ago, I was officially taking 3x sinemet CR 200/50 and 6x requip 4 mg and six months ago I jettisoned 1x eldepryl 5 mg as well as a blood pressure drug called hyzaar. The ginseng was supposed to normalize blood pressure and it did (just now checked at 112/65 !). The eldepryl was a potential problem with the dex cough syrup (which I still haven't gotten around to). And a few months prior to that I was up to 8x requp 4 mg which even I knew was too much.

Through most of that period it was a slow start in the mornings, dragile but mostly functional all day and freezing from about 8 PM onward.

Today I started out with a half of one of the 50/200s, 1x requip 4 mg, and 10 g mucuna.
At 10 AM I took another half of a 50/200 and another 4 mg requip but no mucuna.
At 1 PM I took (I think) a repeat of the 10 AM
At 4 PM it was 10 g of mucuna and one requip 4 mg.
Normally I would have taken a final round at 8 PM (15 min ago) but I am functional and a bit dyskinetic so I am going to skip it until I start needing it.

So totals for today are one and a half sinemet cr 50/200s and four requip. Darn, that's cutting the sinemet by half and the requip by a third! And considering the dyskinesia, I probably should have left out the 4 PM requip. I am impressed!

The wait for turning on time is much shorter in the mornings and the freezing is probably a fourth what it was. And when I get up I am noticeably ore functional right out of the bed.

You know, I've already figured out that there is more at work than just natural ldopa and I assumed that there was some carbidopa clone at work. ut a possibility that I just thought of is that there is something that is either increasin the number of or the sensitivity of recetors so that a little goes a long way. Hmm, this is getting interesting.

-Rick

Just Three
 

dayz to go before catching up with brilliant Neurology surgeon Dr D Mc, on Monday. I feel my meds are a little on the high side and that's attributtable to the difficulties of early last week where the meds did not kick in.

The meds are certainly kicking in now with my on times just about 24/7. I have no idea if that's a good thing, I suspect the meds will be adjusted down so another trial week looks likely.

Having four hours on time between meds is awesome, I suspect that will need to be balanced against side effects that may eventuate through taking 1500mg day.