Parkinson's Disease Tulip


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Old 12-09-2010, 12:26 AM #1
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Default Compensatory mehcanisms....working what we have

I recently read an interesting approach to treating Parkinson, it did not involve any drugs, and it's a natural resource we have in long supply: compensatory mechanisms and our reserve endogenous dopamine. Imagine if researchers took a different perspective? Instead of filling the half full glass, they worked on taking the good still in the glass and working with it? I started thinking in terms of how great an improvement Imad has made...and then I thought of Ron....Max...Fiona...Nan. What they all share in common is that they seem to have tapped into their systems natural ability to heal and in the process enhanced their remaining compensatory ability to restore the balance we felt when health.

Two key articles out there are saying the same thing. Our brains are so plastic that we might be able to manipulate it at the molecular level to ease symptoms of the disease on our own for longer than we do now. The fact that we get such a long run on compensation is amazing in and of itself! It takes PD on average 15 years or longer in YO to degenerate to the point of cardinal signs, so that means the disease is fairly silent for quite some time save for the non-motor autonomic nervous system signs being named as potential biomarkers. However, researchers agree that our neurons take their largest blow within the first few years of insult or pathogenesis, so that 15 years later we present with a tremor. So, bang! right away we lose close to 80% or our neurons...yet we remain asymptomatic. This is compensatory mechanism. Our brain picks up the slack and our bodies follow suit. It is a natural symptom control, and motor symptoms emerge only after we start to lose our ability to compensate.

Further supporting the importance of compensation is the fact that those with YOPD lose many more neurons right off the cuff, in late onset less is loss. Yet, there is no correlation between amount of neuronal loss and symptom or disease severity. There is no real linear path in PD. Our symptom severity can seemingly fluctuate by the hour.

These researchers are suggesting two novel things here and suggesting a 180 in how we treat this disorder: 1) use and enhance our innate ability to compensate 2) not all of our neurons are dying; many may just be held hostage as dysfunctional. So let's focus on the good ones we have left and try to revive the others! Forget about the lost. Personally, I think this is why GDNF was so remarkable in reversing symptoms.

They are hypothesizing, and I believe that some of us are living it out now. It has been suggested by one author that at the very least to stimulate our remaining dopamine stores and to enhance function, we should look to as a foundation for all treatment a hypocaloric diet and exercise as a way to nourish compensatory ability and in regenerating any remaining healthy neurons.

A global view of Parkinson's disease pathogenesis: Implications for natural history and neuroprotection
Parkinsonism & Related Disorders

Just what are some of the compensations...

The MPTP (N-methyl-4-phenyl-1,2,3,6-tetrahydropyridine) monkey model of PD has contributed to gaining insight into compensatory mechanisms. The most relevant ones are the increase in D2-receptor binding at the striatal level, the increase in the expression and activity of encephalin, the overactivity of the subthalamic nucleus (STN) and internal globus pallidus (Gpi) and the increase in the activity of some premotor cortical regions [19].


A network dysfunction perspective on neurodegenerative diseases.

Nature. Oct 2006 Palop, et al.
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Old 12-09-2010, 08:25 AM #2
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Default great post

[QUOTE=Conductor71;723981]I recently read an interesting approach to treating Parkinson, it did not involve any drugs, and it's a natural resource we have in long supply: compensatory mechanisms and our reserve endogenous dopamine. Imagine if researchers took a different perspective?

I wrote a long reply which I promptly lost

Thanks for voicing so lucidly, my gut belief
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Old 12-09-2010, 09:05 AM #3
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Default A good point Laura

If we are forced to remain in life-circumstances that have generated the PD from the beginning, how can we expect improvement? If we take medication so that we can punch that time clock one more day, why should we be surprised that our condition worsens? To a large extent we feel trapped by our obligations and the lack of support. But a part of that is illusion. What if the DX had been a brain tumor? Why would change have been possible but not with PD?

Remember that we respond to placebo at twice the normal rate. When we are given permission to improve, we do so.

Remember that when we "lose" our selves at a wood lathe or potter's wheel or the end of a joint, a miracle occurs.

There is untapped potential there, for sure.
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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 12-09-2010, 09:28 AM #4
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Default Therapy is right under our nose

My 3 maine drugs are NUTRITION, SLEEP AND EXERCISE along with a wild sense of humor and a positive attitude and an occasional margarita. They help my body stockpile dopamine. Having 20 years of PD, my husband and I rode a tendem recumbent bike across Iowa (RAGBRAI) this summer - 442 miles/over 14,000feet elevation/7 days. To do this,, we put in 1000miles of training. I credit my husband for "pushing" me to my limits. We continue to pedal together every morning but now we do it indoors on a stand. Check out "forced exercise" by Dr Jay Alberts.
TG
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Old 12-09-2010, 12:13 PM #5
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Originally Posted by tulip girl View Post
My 3 maine drugs are NUTRITION, SLEEP AND EXERCISE along with a wild sense of humor and a positive attitude and an occasional margarita. They help my body stockpile dopamine. Having 20 years of PD, my husband and I rode a tendem recumbent bike across Iowa (RAGBRAI) this summer - 442 miles/over 14,000feet elevation/7 days. To do this,, we put in 1000miles of training. I credit my husband for "pushing" me to my limits. We continue to pedal together every morning but now we do it indoors on a stand. Check out "forced exercise" by Dr Jay Alberts.
TG
I couldn't have pedalled 400 yards 20 years ago - envy envy
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Old 12-09-2010, 01:20 PM #6
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Ooo on the negative side...............

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Originally Posted by krugen68 View Post
I couldn't have pedalled 400 yards 20 years ago - envy envy
Did I mention our SPLATS on the road and our roadside "divorce moments"? ROTFLOL

TG
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Old 12-09-2010, 09:59 PM #7
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Default It's just so common sense to me...

Yes, TG! Exactly. They give us three cardinal signs, well let nutrition, exercise, and sleep be our cardinal treatments.

How many doctors even mention exercise? I have read on many a hospital or treatment center for PD website that daily exercise is right up there on the list with your meds. In fact I went for five years with a questionable tremor (atypical ET). During the clinical wait for the disease to present itself stage, it seems unconscionable, in my mind, that any doctor would not have the good common sense to come up with the idea of getting selfish,taking better care through nutrition and exercise. They wouldn't be saying...do this in place of meds. It's saying this is the foundation for being as healthy as you can be in as it's incurable....blah blah blah. You think they might even tell you in passing that exercise is the single most potent neuroprotective that you have going, so keep or get moving.

Is it really that doctors lack "clinical evidence" that our brains do benefit from some form of regular exercise? I admire what Dr. Alberts is doing, but PWP get so desperate to replicate the forced pacing, that the message is lost. The underlying truth and message is hey that exercise does wonders for us. I think doctors need to directly address how this is really key for neuronal sprouting and any regrowth compensation. Or is it just the medical community stuck in a rut with over-emphasis on band aiding everything with drugs?
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Old 12-09-2010, 10:27 PM #8
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Post Sleep Deprived Here

Quote:
Originally Posted by Conductor71 View Post
Yes, TG! Exactly. They give us three cardinal signs, well let nutrition, exercise, and sleep be our cardinal treatments.

How many doctors even mention exercise? I have read on many a hospital or treatment center for PD website that daily exercise is right up there on the list with your meds. In fact I went for five years with a questionable tremor (atypical ET). During the clinical wait for the disease to present itself stage, it seems unconscionable, in my mind, that any doctor would not have the good common sense to come up with the idea of getting selfish,taking better care through nutrition and exercise. They wouldn't be saying...do this in place of meds. It's saying this is the foundation for being as healthy as you can be in as it's incurable....blah blah blah. You think they might even tell you in passing that exercise is the single most potent neuroprotective that you have going, so keep or get moving.

Is it really that doctors lack "clinical evidence" that our brains do benefit from some form of regular exercise? I admire what Dr. Alberts is doing, but PWP get so desperate to replicate the forced pacing, that the message is lost. The underlying truth and message is hey that exercise does wonders for us. I think doctors need to directly address how this is really key for neuronal sprouting and any regrowth compensation. Or is it just the medical community stuck in a rut with over-emphasis on band aiding everything with drugs?
Key problem for me is almost totally being unable to get a decent night's sleep. I read an article that sleep deprivation is dangerous to our health even without PD. I have had severe pain issues due to lumbar spine problems most of my life to one extent or another. Constant cycle keeps me from ever seeming to be able to get ahead of the curve.
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Old 12-10-2010, 01:08 AM #9
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Default Sleep is a luxury

Quote:
Originally Posted by just_me_77 View Post
Key problem for me is almost totally being unable to get a decent night's sleep. I read an article that sleep deprivation is dangerous to our health even without PD. I have had severe pain issues due to lumbar spine problems most of my life to one extent or another. Constant cycle keeps me from ever seeming to be able to get ahead of the curve.
I'm glad you brought this up. I was thinking it is rather one of the cruel ironies of having PD. It was PD that interrupted my ability to exercise by declaring itself in dystonic foot. Now it is PD (and meds, largely, I suspect) that has turned my sleep cycle/diurnal rhythms completely on end. It's to the point where 2-4 hours a night feels normal to me and anything more it feels like I have slept too long. Ugh. So tired of taking pills that I tend to skip the sleeping pills....

Also, this profound sleep deficit has parallels to the encephalitis lethargica which further makes me wonder if there isn't a lethargica "lite" related viral infection that could have taken hold...I know it will be countered that our autonomic system that helps regulate this takes a hit with PD, but not everyone gets this symptom (I don't think).

Laura
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Old 12-10-2010, 06:12 AM #10
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Originally Posted by tulip girl View Post
Did I mention our SPLATS on the road and our roadside "divorce moments"? ROTFLOL

TG
......bet I know who got the blame for the steering
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