Parkinson's Disease Tulip


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Old 07-29-2008, 04:31 PM #1
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Default 24 hours

I am up a bit at night to hit the john and have been that way for a long time. As a result, I have had ample opportunity to sample my abilities at various times of the night and notice a definite pattern and I would like to know if anyone else fits this profile too.

I have a well defined decrease in function (seemingly indifferent to meds) starting around 10:00 PM and lasting until about 4:00 AM the next morning. The difference between 4 AM and 5 AM is almost startling.

Can anyone else relate to that?
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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 07-29-2008, 08:16 PM #2
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somewhere in a distant and not necessarily scientific part of my past i read that many of the major 'wake up and get ready for the day' body/brain mechanisms begin going to work at around 4 a.m. and the obverse is that these same mechanisms often bottom out 12 hours later at around 4 p.m. thus the time most favored for tea (or for naps). it's certainly been my experience.

jon
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Old 07-29-2008, 08:52 PM #3
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Default interesting about the 4pm thing...

I've never noticed my night patterns much. But the 4 pm down time is right on the money. I've tried to change my eating habits, my med schedules and anything else, but I almost always have some down time between 4-6pm.

Who knew???

a 10-20 min nap does amazing things for me, but any longer and I slow down too much and then I have a stall and it can take 2 or more hours to get my act back on the road.
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Old 07-29-2008, 09:53 PM #4
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Default yes..

It makes attending daytime appointments very difficult. This is one of the "PD THINGS" that has a profound affect on our ability to "FUNCTION" :normally".
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Old 07-29-2008, 10:40 PM #5
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When the "senior members" of the forum who began 10 years ago first got going strong....we retired at 4 a.m.

I continued the habit of staying up all night and finally crashing at 4 am for a number of years. That seemed to be the wind down time for my body chemistry -same time, just reversed in nature - for some hard working years- not missing even a few beats retiring from teaching and beginning a whole new "occupation"... in PD.... and it continues to exist with my just venturing as far can i get before i have to retire this rewarding "self-made cyber advocate for PD" thing -the person I turned into.

Do you remember when John Lester encouraged multiple user names in Brain talk? He always felt that it had positive uses. But there were many reasons that it wasn't for everyone to try. There are those here today who could still fess up about who else they were back in those days. It was a thrill seeking and skill requiring chance to take.

Toadie always used to write tactfully but directly - that a person could easily be identified just by the writing style....lol...but there were those who were good at it.

. Every close advocate friend I have is feeling electricity in the air about changes affecting everything.. as is everyone concerning the issues that affect them personally.

We need priority seeking analysis everywhere starting now about the election issues. Forget the name, color, age, party sex, and just grill them both hard. Lay down your arms....Nancy Pelosi stomping her feet so to speak claiming she was saving the planet is unnecessary drama and I can't suppress a giggle....does anyone have a similar reaction? Just make them both accountable for the competencies they claim. They know very well that scandals take attention away from the issues that no one can project accurately because half the world wants to wipe out the other half.

uh oh i have to stop..

THanks for any ideas or best of all thoughts about this way of thinking and approach to the elections.

GRC could start up as election coverage if we went into high gear. Another thought that may or may not have more matter headed it's way to activate the idea.

this is the time....it's always a personal call....and i'm just keeping you informed about what i find out...hope many do the same from their background knowledge.

sigh....not quite yet...still work to do...so perhaps a little should be done everyday. Looking at thread title and wrapping with:

uh, and therefore, I think 4 a.m. is ...common.

paula
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Old 07-30-2008, 03:59 AM #6
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Note the time I'm reading this.
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Old 07-30-2008, 07:39 PM #7
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I've been going to sleep at 4 am for a long time. I've tried to adjust my schedule on the weekends hoping to carry it over into the week and I always fail.

Although my gait is poor at night, I work best in the late afternoon and evening.

I usually get home from work at 12:45 am and get to sleep around 4 am, sometimes earlier when I've had a rough day.

It's good that my work hours are flexible!

~Zucchini
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Old 07-31-2008, 12:07 PM #8
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I haven't had a decent night's sleep in months. I go to bed around 11pm - 12:30 and wake up at 3 - 3:30am every day usually due to twitching legs or cramps in my arms and feet. I noticed that when I have stayed up late, like when doing homework, I'll be really stiff and sore through my arms, hips, and legs when I'm going to bed around this time. This is even after taking the CR at 11 or 11:30 so this makes me wonder how effective my Dopamine replacement is now.

The disturbed sleep along with the poor sleep is killing my physically as well as mentally. I find I'm losing my short-term memory, I'm also becoming pretty grumpy and irritable, and the overall fatigue never goes away.

John
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Old 07-31-2008, 12:22 PM #9
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Yeah, I seem to often wake around 4 am and have trouble getting back to sleep. Have been disciplining myself with breathing and meditation past that point though. But the 3pm to 6pm slot daily - oh my, that sure is ruff. Ever since I got the permanent acupuncture implants in the beginning of June, my on times are pretty dandy, but that 3-6 time I go through this hell of depression, anhedonia, crushing off-ness....it's been really weird. I feel like as my brain is being stimulated by these new trigger points in my ears on a regular basis, and is starting to regenerate somehow, I go through this period of renavigating my relationship to synthetic dopamine daily. It's very bizarre.
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Old 07-31-2008, 01:30 PM #10
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Default clocks

This is important stuff. Sleep disturbance can drive you bonkers. In the extreme, say meth addiction, you end up having conversations with the wallpaper and similar hallucinations. I am blessed in that I sleep pretty well but I don't know how long I can count on that.

Two things worth looking at are melatonin and light therapy. Medline has a lot of info.

BTW, the reason I raised the question was that I ran across the fact that cytokines (like from Ron's infected tooth) are produced at different levels at different times of the day. They peak in the 10 PM to 4 AM slot which is precisely when I am at my worst. Light therapy purportedly can reset the clock which seems to drift off for PWP.
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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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