[joopoele]

Some five years ago I started an internet survey on symptoms people with Parkinson’s disease suffer from. More than a thousand respondents answered the call to fill in the answers to 127 questions. I’m still processing the results and expect to be finished by the end of this year.
I think I booked some startling results but I’m not always so sure about their significance. In a* previous posting I did, about a method to optimise medication, I used what I called Biomarkers. I found one of these markers by comparing the average results of respondents who were positive on this marker, and those who were not.
One of the most striking Biomarkers is the quivering of one’s tongue. Patients who have a quivering tongue sometimes, are:
- almost exclusively affected on the right side.
- Have a diminished spatial sense
While people who don’t have a quivering tongue often have thyroid problems.

What do you think?

Joop

[chasmo]

How many had that?
Did their quiver go up and down or side to side??
Side to side is indicative of Essential TRemor not PD as I recall.
You can have PD ANd ET at the same time......confusing eh????

Charlie

[joopoele]

Originally Posted by chasmo

How many had that?
Did their quiver go up and down or side to side??
Side to side is indicative of Essential TRemor not PD as I recall.
You can have PD ANd ET at the same time......confusing eh????

Charlie

Hi Charlie,

It is possible that these patients have essential tremor too. This comparision was done with a selection of patients who were diagonized Parkinson's disease by a neurologist.

I'll try to place part of the table here. Could be that the layout will be bad.
134 respondents had a quivering tongue and 492 dit not experience that symptom.

Joop

Images of Parkinson's


These data are acquired from an internet survey. The respondants are a select group and do not represent the population of Parkinson patients

Comparing patients with and without quivering tongue quivering tongue No quivering tongue
Images of Parkinson's Selected Respondents: 134 Average and modal scores on a 1-5 scale. 134 rsp 492 rsp
Symptom avrg mod avrg mod

Does your tongue quiver? 2,63 2 1,63 1 5
Does your chin tremble often? 2,46 2 1,26 1,2 2
Do you have a diminished spatial sense (impaired proprioception) 2,96 4 0,94 2,02 1
Do you often have a tingling sensation of the hands, legs, arms o 2,7 2 0,93 1,77 1
Do you have difficulties swallowing? 2,76 3 0,9 1,86 3
Do you have a problem holding your stools 2,24 1 0,88 1,36 1
Do you often have involuntary eyelid contractions 2,33 1 0,85 1,48 2
Are you very rigid after a night’s sleep? 3,31 4 0,83 2,48 1
Arm/hand tremble right 2,79 3 0,8 1,99 2
Do you suffer from Lack of movement? (Akinesia) 2,74 2 0,79 1,95 3
Is your skin often oily (greasy)? 2,42 1 0,78 1,64 2
Cramps arm/hand right 2,37 1 0,78 1,59 2
Is it sometimes hard for you to stay awake? 3,02 4 0,76 2,26 3
Cramps toes right 2,54 1 0,76 1,78 2
Could your general condition be called rigid? 3,09 3 0,76 2,33 1
Do you often choke? 2,5 2 0,75 1,75 3
Do you have any difficulty keeping your head steady? 2,1 1 0,75 1,35 2
Do you have trouble chewing? 2,11 2 0,75 1,36 1

[Sasha]

THis is very ambitious! I want to understand your findings, but I'm just not understanding how the numbers are coming through. Could you explain a little more, please? Maybe, for instance, write out the meaning of each of the tongue quivering numbers?

Thanks.

[sparta16]

One of the most striking Biomarkers is the quivering of one’s tongue. Patients who have a quivering tongue sometimes, are:
- almost exclusively affected on the right side.
- Have a diminished spatial sense
While people who don’t have a quivering tongue often have thyroid problems.

I'm new here, so first let me just say hello.
Ran across this site and saw your post. Wanted to say that almost all of my symptoms are right side and I also have the tongue and jaw quiver. My neurologist looks at me kind of funny when I tell her about the tongue, like she never heard of that before. Anyway, just wanted to add that bit.

[joopoele]

Originally Posted by Sasha

THis is very ambitious! I want to understand your findings, but I'm just not understanding how the numbers are coming through. Could you explain a little more, please? Maybe, for instance, write out the meaning of each of the tongue quivering numbers?

Thanks.

I'm afraid I can't get the layout right. Is there anyone who knows how to do it?
I placed part of the table in this document:
http://www.parkinsonhuis.nl/Quivering75.doc
I think this will work.

[Sasha]

thanks - this is very interesting - I had been totally confused by the fact that the decimal points were appearing as commas! now it makes sense!

[joopoele]

Originally Posted by sparta16

....
Ran across this site and saw your post. Wanted to say that almost all of my symptoms are right side and I also have the tongue and jaw quiver. My neurologist looks at me kind of funny when I tell her about the tongue, like she never heard of that before. Anyway, just wanted to add that bit.

Thank you very much for your response. First this: note that people with right-sided Parkinson's disease not always have a quivering tongue. It's the other way around. What I would like to know very much, is whether patients like you and me, who have a quivering tongue, can use this symptom as a biomarker. I know that if my tonque starts quivering, it is time to take my medication. This is a great advantage. Since I knew this, I was able to make my No Arousal Diet. It made such a difference!

What I also like to know if there are any other symptoms with such a clear characteristic. I found another one by observing my inner body perception. I didn't turn it into a question of my questionnaire as it is somewhat embarrissing. When the medication starts to work, I feel a pressure in my prostate gland. I suppose more patients have that. Please let me know if this sounds familiar.

In Europe we use decimal comma's.

[Sasha]

Decimal commas - I've learned something new today! Thanks.