Parkinson's Disease Tulip


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Old 12-18-2013, 03:33 PM #1
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Default What a bunch of crap! Ibuprofen, BS, and anger

Has anyone paid attention to the media splash from about four years ago about ibuprofen and PD? Yeah, me neither.

I'm sure that a couple of dozen of hi-powered research teams got right on it. Turned out 50 papers or so by now. Special interest on how it affects symptoms once you have it I was sure. Give a bunch of PWP a bunch of ibuprofen and see if anything improves. Simple.

Dream on, my child. Go to Medline and see for yourself. A dozen or so academics kicking around old data and harrumphing about no proof of prevention. Not one single work asking "Does it help you function?"

Not one.

Do any of you newbies grasp what that says about where you rate in this mess? And why we old timers get so mad?
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 12-18-2013, 10:25 PM #2
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It keeps the $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$coming in.
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Old 12-18-2013, 10:39 PM #3
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Default Ibupropen

I am in completely in agreement with your understanding of Ibupropen. I do not agree with your attitude toward the new or younger on this site. They have as much right to prove to themselves the effects of different medications. They are not to be shamed for the need to learn the same way we did. Experience.

"Do any of you newbies grasp what that says about where you rate in this mess?"

Could be you were rated the same by your "Elders" when you began your journey living with PD.

Vicky
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Old 12-19-2013, 02:46 AM #4
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Almost a year ago Dan Murphy started an excellent thread "Ibuprofen helps sleep"

http://neurotalk.psychcentral.com/sh...ight=ibuprofen

A quick search of the forum shows many other postings over the years on ibuprofen.

Yet, almost a year after Dan's thread started, we're back to the same subject. It's like Ground Hog Day.

Rick, you're right to be frustrated at the lack of interest shown by "BIG MED" in the symptomatic use of ibuprofen. But, I think you should direct some of that frustration at me for not being able to organize the people in this forum to do a DIY trial.

It's not a lack of money that stops us, nor a lack of technology, nor a lack of knowledge.

What is it that stops us acting collectively to make our lives better?

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 12-19-2013, 09:30 AM #5
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Lightbulb

I have found over the years articles on PubMed about NSAIDs and brain inflammation. Sometimes these are using indomethacin instead of ibuprofen.

There are some chronic head pain articles that advocate indomethacin treatment. Try using keywords, indomethacin and/or NSAID in your searches.
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Old 12-19-2013, 03:16 PM #6
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Vicky-
I'm not sure that I understand you. I don't feel like I have much of an "attitude" towards the new faces. There are some promising minds here. NeuroTalk attracts a certain type of mind and drives others away. That is good design.

Shamed? Oh, give me a break!
-Rick



Quote:
Originally Posted by vlhperry View Post
I am in completely in agreement with your understanding of Ibupropen. I do not agree with your attitude toward the new or younger on this site. They have as much right to prove to themselves the effects of different medications. They are not to be shamed for the need to learn the same way we did. Experience.

"Do any of you newbies grasp what that says about where you rate in this mess?"

Could be you were rated the same by your "Elders" when you began your journey living with PD.

Vicky
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 12-19-2013, 03:56 PM #7
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johnt-
I have nothing but respect for you and your efforts. "The only failure lies in not making the attempt."

As to why you can't get us to move even with a sharp stick, that can be blamed (rightly) on the nature of the disease itself. It creeps up silently when we are young and busy with our lives or, perhaps, a senior who just dismisses it as a part of growing old. Then, like a vampire, it begins to feed. What is left behind is an empty shell sitting in a puddle of apathy. Life tastes of cardboard.

By the time that we realize our danger we have no energy to fight. That is what makes me so impressed by Peg and the gang standing up to Congress and actually speaking truth to power.

I will continue to fight until my last breath. My life spins increasingly out of control and I find myself watching my poor, weary wife through eyes hooded by shadows and tears. And I have begun to realize that I am not going to win. But that is a far cry from losing.

"I will fight no more forever." as Chief Joseph said.


Quote:
Originally Posted by johnt View Post
Almost a year ago Dan Murphy started an excellent thread "Ibuprofen helps sleep"

http://neurotalk.psychcentral.com/sh...ight=ibuprofen

A quick search of the forum shows many other postings over the years on ibuprofen.

Yet, almost a year after Dan's thread started, we're back to the same subject. It's like Ground Hog Day.

Rick, you're right to be frustrated at the lack of interest shown by "BIG MED" in the symptomatic use of ibuprofen. But, I think you should direct some of that frustration at me for not being able to organize the people in this forum to do a DIY trial.

It's not a lack of money that stops us, nor a lack of technology, nor a lack of knowledge.

What is it that stops us acting collectively to make our lives better?

John


Quote:
Originally Posted by johnt View Post
Almost a year ago Dan Murphy started an excellent thread "Ibuprofen helps sleep"

http://neurotalk.psychcentral.com/sh...ight=ibuprofen

A quick search of the forum shows many other postings over the years on ibuprofen.

Yet, almost a year after Dan's thread started, we're back to the same subject. It's like Ground Hog Day.

Rick, you're right to be frustrated at the lack of interest shown by "BIG MED" in the symptomatic use of ibuprofen. But, I think you should direct some of that frustration at me for not being able to organize the people in this forum to do a DIY trial.

It's not a lack of money that stops us, nor a lack of technology, nor a lack of knowledge.

What is it that stops us acting collectively to make our lives better?

John
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 12-19-2013, 09:17 PM #8
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Default Everett

I apologize for misunderstanding your post.

Vicky
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Old 01-01-2014, 04:29 AM #9
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Experiment to see if ibuprofen (200mg) relieves my bradykinesia.

As Rick points out, most of the research into whether ibuprofen impacts on PD relates to the negative correlation between ibuprofen usage and the relative risk of getting PD.

As far as I know, whether ibuprofen has an immediate effect on PD symptoms is unknown. This is what we look at here.

I've never taken ibuprofen as part of my Parkinson's medication. But, I have taken it, infrequently, when I've had headaches. On some of these occasions it has seemed to slightly relieve my PD symptoms. Of course this is just a subjective opinion.

To get objective data, I took the tap test [1] every 10 minutes starting 40 minutes before taking 200 mg ibuprofen and continuing until 160 minutes after taking the pill. To get control data I needed a time when my performance was stable, so I started 3 hours after last eating and 32 hours after my last medication. During the test I neither ate nor drunk (except for a little water to get the pill down).

The raw data is shown below.

I cannot see any evidence of an improvement of motor performance.

The next step is to test whether ibuprofen taken with levodopa has better performance than levodopa taken on its own.

Reference

[1] http://www.parkinsonsmeasurement.org...eToSideTap.htm

John

The data is in the format:
Min: minutes relative to taking dose. Negative value refer to the time before the dose
LH: left hand score, 30 sec
RH: right hand score, 30 sec

Min , LH , RH
-40 , 18.20, 12.81
-30 , 17.94, 12.92
-20 , 16.91, 13.65
-10 , 18.00, 12.83
0 , 16.52, 13.58
10 , 17.19, 12.56
20 , 17.39, 12.36
30 , 17.26, 12.34
40 , 18.00, 12.98
50 , 18.36, 13.21
60 , 17.31, 12.73
70 , 17.59, 11.70
80 , 18.69, 13.67
90 , 19.40, 12.51
100 , 18.64, 13.45
110 , 18.70, 13.98
120 , 20.33, 13.53
130 , 19.44, 12.60
140 , 17.70, 13.44
150 , 15.71, 11.48
160 , 16.42, 12.48
__________________
Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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