On/offs. Freezing. Dyskenisias extraordinerre. Often referred to as signs of advanced PD, but I'm not so sure. How many of us have them? Keith (aka kk13) and I for sure. Anyone else?

If not, then the question of why not becomes very interesting.

On/offs are when the meds seem to just stop working. I can take double and triple doses and nothing happens. Zero. The only thing that offers relief is the passage of time. Usually two to four hours, in my case. Try to walk and freezing clamps down. Since this is paired with a strong urge to urinate things get rough. In fact, that rip to the john under those conditions is the biggest challenge that PD poses for me. But the odd thing is that if I don't try to walk and crawl instead, I move right along.

Oddity number 1- There is a great lessening of symptoms when on all fours or just in the floor in general.

Oddity number 2 - meds don't work. At all.

Oddity number 3 - time passes and they work again.

ON 4 - the bladder works overtime.

This occurs under at least three conditions, all very predictable. If I get acutely stressed, if it is late evenng and my meds are wearing off, and if I eat certain things.

ON 5 - Stress starts it. If I act in time to escape the stress, it reverses sometimes with no further meds.

ON 6 - Late evening, yes. But I am not 100% sure that it is the meds wearing off. I suspect a circadian rhythm effect. If I go on to bed and wake up at, say 4:00 AM, I'm in much the same condition. But if I wake up at 5:00 AM, there is a world of difference.

ON 7 - Anything with MSG in its many forms does it every time. I can feel it coming and know that I have fifteen minutes max to get to a safe place for the next four hours. MSG locks on to the NMDA receptors. Those are the ones that J.S. Hong is trying to protect with the dex cough syrup and they are the ones that glutamate lights a fire under.

So, Keith or anyne else, any parallels?

That has got to be tough going. The complete wearing off of meds has got to be the enemy we all rally against. I simply cannot imagine not being able to do stuff, such as jogging in the park, mowing the lawns, shopping, etc.

In my own case, meds were stable on around 900mg per day until around April 14 2008l (Dx 1996 age 46. started meds 1999) when a simple gastro bug ripped the heart out of meds working for close to 30 hours. On recovery i was taken off the 25/100 sinemet and banged on the 50/200 CR Sinemet. I enjoyed--not-- 2 weeks of ubiquitous living and uncertainty, a cocktail for disaster. Fortunately I have managed to settle on a combination of meds, good eating, plenty of exercise to a stage where the heart is pumping blood and oxygen through the system during exercise, thus reducing toxins and other impurities, while strengthning vital neccessary organs such as kidney and liver.

My meds had climbed to around 1350, 1400mg per day now back to 1200. Dicipline is the key to success and the goal is to improve the condition of the body each day from that April day. i'm out for a jog now and looong may that continue....

this is to me - my own private garden -
I will share -and there will be those that do not understand or scoff
do not scoff at me...
just turn the page and read something else - okay?

fear is faith perverted - I have learned to lean on God...

sometimes when meds go down -it is because I am tired - and I am pushin me/myself and that "I" character to hard.

and I must respiral up - all of me, and I thank GOD, andf my legs and I will
think about how hard our body works to please us -?
I ask God to make the body respond to love, so the meds can work, and I ask
for God to be my great physician...
~~~~~~~~

this is my own private way -

I pray and distract myself & and it seems if I get on my knees, and breethe as deeply as I can and think on something I love or just pray for others -
the dystonia will disapear ever so quickly -
I have a CD where the actrss / singer Megan Mullally sings "AVE MARIA"
and I try to sing w/ her - because when I attended Catholic School as a child growing up we learned and those of us in the Choir -sang the scales and did breathing exercises -sometimes just asking God for divine hope and health -
helps me tremendously - perhaps you may find comfort in the sound of quiet music...

OK, here's another one: When wildly dyskinetic, if I stop whatever I'm doing, and go sit quietly in a comfortable chair and meditate (nothing fancy, just relaxing, taking deep breaths, clearing my mind, and so on) I can usually become perfectly still within minutes!

Unfortunately, the second I stand or even just speak, the writhing kicks right back in again.

I suppose I could meditate all day long, but that would defeat the purpose. I think this suggests that there is at least some - if not a lot- of mind over matter going on here.

Anybody else have this experience?

...are not that bad but I can relate. In fact they are not a problem unless I take a little too much sinemet, usually in the morning. On such a morning, if I am going to drive into town I may seem normal as I leave the house. But if I try to talk on the cellphone, first thing I know I am jerking and twisting so much that I no longer do so while driving.

Another thing that starts them up on those OD mornings is my choice of music. Anything "peppy" starts them.

My impression or hypothesis or best guess is that the problem is the sinemet since it is a constant in all cases and that it is dose related. It feels like the opposing muscle pairs are clinching and unclinching in a chaotic manner which yields the distinctive "dance". They are worsened by overstimulation such as music or phone calls.

We know that it is a control problem in that, as you said, sitting quietly and peacing out provides temporary relief. I wonder what hypnosis could do here? I have had pretty good success with the brain wave entrainment but it is only so long as I listen. But it might be worth your checking it out to see if you get temporary relief with it.

When I cut all sweets out of my diet, dyskinesia literally disappears from my list of movement disorders. Unless I OD on my meds. The interesting thing to me is if I take both A benzo and an agonist with my sinemet I will become dyskinetic(??) I suspect the relaxation effect of the benzo puts me in an overmedicated state because I need less sinemet when calm. It's all speculation, but like Rick I can predict what will have what effect on me.

The need to go to the washroom is an adrenaline effect. Somehow when your sinemet is blocked from reaching the brain it gets redirected to your adrenal system and cranks the whole off experience into overdrive.

The endocrine system is a huge and largely unexplored region of the PD experience. Neurologists typically know little of it. Yet it affects everything. Dozens of hormones interacting with dozens of neurotransmitters. Yet there is an artificial line which says that on this side you should be a neurologist and on that side you should be an endocrinologist. Never mind that neither will ever have a complete picture.

We are constantly awash in a sea of chemicals. They are not just a "chemical" either any more than a "word" is just a word. They are messengers carrying reports, queries, and commands from one end of us to the other. And the old model of the powerful brain at the center receiving input through the senses, processing data, and sending orders out the nerve fibers couldn't be more wrong. Every single cell is monitoring the datastream passing by in chemical form and is capable of adding a few sentences of its own when circumstances warrant. Its like the internet, each of us able to add in while monitoring the larger conversation.

If there is a true command center, it has to be the HPA axis (hypothalamus, pituitary, adrenal). That is where the Big Three come together - Mind, Body, and World. And its the heart of the endocrine system. See a tiger (World) and your Mind doesn't waste time with the stodgy old brain. It yells at your heart (Body) to beat faster, etc. No brain needed.

....Now, how the heck did I get onto that tangent?...

I have had all these symptoms to the extreme when I was on Mirapex. It was a shock to my system and I started having panic attacks. I couldn't help dwelling on pd obsessively. It was all I thought about and talked about. And the worse I got. I would freeze for hours and I actually felt and recognized that there was no body/mind connection. I wondered why I was not in the psych ward. I sure wanted to be.

It has taken me a long time to turn this around. It takes hope. When I started to believe that the brain can re-circuit and heal itself I thought yes. It is something I think we are going to start hearing more about in the near future. I have always been all over the road-map, inconsistency in one's life brings inconsistency to your health. Damn, I had to wake up and smell the coffee.

I have always been into vitamins, herbs and supplements. I just got the results back from some blood work I had done and it showed I had too much calcium in my blood. The interesting thing about this is that for no reason (other than I take a break from different things once in a while) I had quit taking calcium a few months ago. I think we intuitively know how to heal ourselves.