Hello,

This is a subject that rarely seems to surface on PD support forums. I am assuming it is because either people are at earlier disease stages or are some of the more fortunate PD'ers who don't go on to experience this strange disabling phenomenon. Or maybe it is because it scares the heck out of us? This is what I have gleaned from talking to others and in reading but my experiences with it have been odd and I wondered how many others out here have gone through anything at all similar?

I first began freezing, though not in the typical getting stuck in a door way sense, early, early on in my diagnosis. I was pregnant, had to come off all meds very quickly and thought at first I was simply having a symptom rebound from stopping meds too suddenly. Yet over the course of a month, I got to the point where I could not turn in bed at night. I really began thinking "My God, this is what it feels like to be paralyzed." I wasn't stiff but felt nothing and had no strength to really even move my arms to put the covers over myself...talk about scary. My daytime hours were not much better. I lay on the sofa and the only way I could sit up was to roll off onto the floor on all fours. Even more bizarre, I could then get up and walk normally, no shuffling, a little slowness but I could walk. This, of course, all went away when I was forced to introduce meds again in my second trimester. It is really difficult for me to even write of it now. I still cannot comprehend how someone who had only a minor right hand tremor, a little slowness and stiffness could become totally akinetic in the course of a few weeks. This has been the thing that most haunts me about what this disease can do, and I have never had any doctor give me a reasonable explanation as to how or why it could happen without any build up.

Fast forward one year and a half later. I have a beautiful healthy son who is a blessing in my life. I am also under an intense amount of stress over a personal relationship and a work situation in which I am being targeted by a supervisor for things out of my control. I have had no recurrence of what I now call "The Turtle Period" for my life with PD. As the stress continues to mount, I go on my merry way feeling rather well despite it all. I don't feel any particular anxiety over things. Yet, over the course of a couple months, I am again freezing, only this time when I attempt to walk.

Now I am super peeved because it impacts what I can do on my own with my son. I was hoping that it was just an extreme stress response that would disappear as I let go of toxic relationships and had some time away from work. Nope, the freezing just escalated. It started with a few anxiety attacks and seemed to keep going until I was having what Rick and I describe for everyone in excruciating detail as more like episodes of periodic paralysis; our legs felt so weak we could barely stand or walk. It all seemed tied to our metabolism like a sudden potassium depletion. Our thyroid levels always checked out as normal, so it could not be induced by toxic levels of thyroid hormone. Our meds wouldn't touch it.

So here is where I am with what all the medical literature and what people might say in reaction to freezing.

It happens only in advanced PD.--"Isn't it a bit early on for that?"--"Over 50% of PWP will experience freezing", no wait, other sources say "over 70 %" --Visual cues get you moving....

This is all about freezing of gait which I now experience and which I am discovering (thankfully) is 90% mind over matter. This is a far cry from what I (and Rick too if I remember correctly) experienced this summer and from my turtle period during pregnancy- those are like a deep, profound sense of disconnection from your limbs while with freezing of gait the muscles are fully over engaged.

So based on all this...

I would say there is a spectrum of freezing--at one end we have no neurons firing to signal movement and at the other end we have overfiring that cancels each other out. It is mostly,b ut

All of it is triggered by stress. The weird leg paralysis, for me, was triggered by hot, humid weather of all things and always culminated in a panic attack. The freezing of gait is also stress induced, but I am taking away its power through cognitive behavioral therapy.

I do not have the typical paradoxical kinesia that goes with territory. Where in an emergency we can all of a sudden move normally. I do the opposite; my son's crying makes the freezing even worse.

It seems cyclical. It's like you have a building up period of a few weeks, full on episodes, then it slowly reverses. I no longer have the periodic paralysis sensation but it left behind a freezing of gait that I never expected to happen with me this soon, if ever. I was tremor dominant and have never had gait or balance issues. Technically, I have been symptomatic with PD for nearly ten years, as I was misdiagnosed for most of those ten and did not need meds for seven years, still it seems to soon

For me, levodopa controls it for the most part. I do experience "on" time freezing only when I am stressed out, but I am working on it.

Would love to hear from others on this.

Sorry this is so long but it weighs heavily on my mind. I wonder if one triggers the other. I just have questions for anyone out there feeling brave enough to confront this horrid side of PD. Has anyone felt like they had different 'types' of freezing? How many would say it is totally stress induced? Anyone else notice any odd triggers? How about gaining control over it?

No real answers or insights here. I just needed to hear from others what their initial freezing experiences were like and how it has evolved. I wouldn't even say it progresses; it more or less seems to suddenly emerge and change shape. I never read of these things elsewhere and think it would be good for us to start speaking out on what seems to be a somewhat verboten topic.

Thanks,

Laura

As Laura said, she and I shared a similar and very disquieting experience this year. ("Disquieting", my backside! Scary as hell is more apropo.) I am convinced that there are some major clues in the mess if they can be teased out.

My own version began with a huge stress load that culminated just under a year ago when I found myself in fetal position in the floor unable to move with breathing itself requiring extra effort. During this time I had my first and only experience of a "panic attack" - an event I do not want to repeat.

As Laura noted, there was a spectrum of muscle tone involved. At one end was was almost zero tone when I found myself on the floor. At the other was maximum tone as muscles clenched and refused to release. During an attack, I would move from near normal into the first state then into the second and then back to normal over a two-hour period. During the worst times this was happening to me three or four times per day. Virtually my entire waking life was consumed.

Again, like Laura, things have gradually improved as stress has dropped and my system has adjusted. I have a feeling that the improvement has been consolidated by the high-dose vitamin D that I recently added, as well.

Several thoughts have come out of this. Stress was at the core of it all and stress means endocrine system involvement. I read repeatedly that acute stressors can trigger a shift to a hyperthyroid state. That is just one example of the plastic nature of the endocrine system. We all know what stress does to our symptoms as PD advances but we, or at least the research community, don't follow that backward to the ealy stages. There is an immune-dominant state in PD and there is an endocrine-dominant state as well. While the progression seems to be generally in that order. outside forces can upset the apple cart. An infection can shift us into an immune-dominant state. A period of high stress can shift us into an endocrine-dominant state. In both cases, our neurologist is going to be clueless.

Stress makes me freeze. The first hint of freezing or even the memory of past episodes is itself a stressor. This triggers the endocrine response of hormonal release which, in turn, increases freezing. This sets up a classic feedback loop - the hallmark of the endocrine system. Muscle tone climbs quickly up the scale. In the discussion about cannabis use, I mentioned an incident where I "forgot" that I was off. I functioned normally during that hiatus and I think it was due to disruption of that feedback loop.

I have not experienced the effects on my symptoms of an acute infection such as Ron had with his tooth a couple of years back. But, as I recall from his description, weakness was more descriptive than rigidity vis-a-vis muscle tone. Is that true, Ron? If so, there is the spectrum once again.

There is much here to ponder.

I only freeze when I'm dyskinetic and holding something in my hand or trying to tackle stairs. That's when the majority of my falls occur. No freezing in my off state.

I freeze in OFF state only when crowded in by people or objects. When I am in open areas, it does not happen but put a water hose in front of me and I will STOP and at times lose my balance. Telling myself to take a huge step will help me overcome it. Currently, I am giving myself a full year to get rid of "stuff" (clutter) in my house. Just cleaning out my clothes closet and getting rid of over half my clothes makes my life simpler. A closet overstuffed was overwhelming me. For me, unfreezing is "mind over matter". A different slant on the subject for sure, but it works for me

Laura, having a toddler underfoot would have me freezing (even if it is one of my favourite kid age)
Rick, having a panic attack - I can only imagine how frightening it must have been for you
TG

i don't think i have ever experienced freezing unless your including the initial getting started shuffle. I just go with it and add a sprint to it and shuffle at a faster pace around the house.This can occur at any time, especially in a small area. It's a little running/shuffle start and settles into normal walking after a few shuffles usually.

When i get out into bigger pace and stride it usually goes away. it's just that getting started or when in a crowd. When we attended a taping of spin city, we noticed Michael would get a running start before he entered his scene.

when off i am like the hunchback of notre dame, or at least that's how i feel. I can't move safely when off but i've managed to load/unload the dishwasher and do a few things off but without the dystonia. This is with toes curled and leaning to one side, stiff as a board.

So i wonder about glutamate killing our cells and in pd there is an extended release which kills a neuron. if our acetycholinesterase if inhibited, then you have too much acetylcholine. Low dopamine and low epinephine (adrenaline gets depleted during times of high stres). Norepinephrine dying and missing in autopsy.

we lose dopamine, norepinephrine, and aren't producing enough GABA, the brakes that moderate and prevent too much glutamate.

thus we could be poisoning and killing our neurons by bad signaling. ending up with too much glutamate, possibly toomuch acetycholine - both toxic and paralyzing could be causing muscle weakness like paralysis.

are you talking about completely being unable to move due to a type of "paralysis'? I don't have the strength when off to untangle the bedding or roll over. It's not a freeze; it's weakness and not wanting to work too hard at it or i won't get back to sleep. Then i have to get up in the middle of the night and take sinemet and either a xanax or a nortriptyline, which help to balance it all, eventually i will either go back to sleep or just start the day at 3 a.m. During this time i can move slowly and shuffle walk to the bathroom. If i beat the dystonia and off attack, i can sometimes go to the bathroom and back to sleep without meds. Iremember michael said at some point, "I have to go fast and beat the pd." -referring to going to the bathroom during the night.

While i get stuck on the floor sometimes and need assistance to get back up, especially if I'm medicated but just too tired, i blame my back degeneration as much as the pd.

i also question that it's freezing at all with me. It's comparable to a serious stutter. They freeze i''ll research stuttering and transmitters.

so what we have is a multiple missignaling.This leads to lack of GABA which is in the glutamate family and the brakes (inhibitory). Then glutamate becomes a cell killer as can too much acetycholine.

freezing to me is that second when your feet just don't go with you but i can usually overcome it by going with it and just kind of half run, have shuffle, maintaining my balance; this works for me so i'll shuffle walk deliberately until balance and stride get me moving.

last thing - my right side doesn't turn or move with me frequently so i have to recover from near falls when i turn right in a somewhat small kitchen area. my right side doesn't move with me and i have to recover
quickly, but do any of these things i've described, common to many of us, constitute as freezing?

i hate to say this because i hated it when someone else did. but water exercise is as good as everyone irritatingly says it is. I wasted many years not exercising . It's the only way to generate energy and strenthen all of your body muscles so you can untangle from the bedding.

am i talking thesame thing as you are?i'm on a med for the very thing you describe tho not as severe it was unbearable. i couldn't walk and it is a torturous feeling - a combination of weakness and restless leg .

from the source below:

Glutamate is an excitatory neurotransmitter which acts to facilitate electrical signaling between nerve cells. When glutamate levels rise too much, however, they essentially jam a nerve cell in the open position, allowing calcium to flow freely into the cell. The calcium damages the structure and DNA of the cell, and creates a cascading reaction as cells die and release glutamate which floods neighboring cells, causing the damage to spread.

Several receptors on nerve cells are sensitized to glutamate, including the AMPA and NDMA receptors. Glutamate's ability to lock on to several receptors on nerve cells can work against it in cases of excitotoxicity because the compound can act quickly when it is present in the nervous system in high concentrations. The cascade of reactions linked with excitotoxicity can occur in both the brain and spinal cord and may lead to lasting damage if it cannot be identified and arrested

http://www.wisegeek.com/what-is-excitotoxicity.htm

http://www.alscenter.org/living_with...otoxicity.html

For me, freezing is a state of rigidity. It is all but impossible to lift my foot to take a step. Stress, such as a need to get to the bathroom, makes it much worse. I can count on it at two times of the day. One is when the meds drop off the plateau either because I forgot to take them or it is time for bed. The other is as one of those attacks enters its recovery phase. I have read that freezing is a short term problem that will pass soon. Not so for this. Once an attack begins it is going to run its two-hour course of low tone - acute urinary output - high tone - return to normal. The time of day when this is likely to happen is also part of the pattern. These tie into potassium fluctuations in response to insulin levels.

It is tempting for me to simply think of Laura and myself as anomalies. But I am not so sure. After all, sinemet messes with our insulin systems. Further, the following is from 1973 when levodopa was still new:

Levodopa has proved to -be safe despite many dose-
dependent adverse reactions at the start of treatment when
the dose is being adjusted to an optimal level. But with longterm treatment two new problems have emerged. One,
which has been termed "oscillation in performance" or the
"on-off phenomenon,"1 2 comprises rapid transient deteriora-
tion of the Parkinsonian motor deficit, which develops over
minutes and usually persist for 1-6 hours. These episodes
then clear spontaneously. Hypokinesia, tremor, and rigidity
may be exacerbated over the period of deterioration. Hypotonia is common and has also lbeen reported. These
oscillations in performance are commonest in patients
who have been on levodopa for over a year. They usually
occur in the afternoon, and they may be repeated in cycles.
Their mechanism is not understood.
The second new problem with levodopa is a group of
endocrine disturbances which have been detected by
metabolic investigation but which have not so far caused
clinical symptoms. Administration of levodopa over a year
has been found to result in a rise of growth hormone in the
plasma, an increase in serum cholesterol, a decrease in glu
cose tolerance, and a delayed but exaggerated insulin re-
sponse.3 It appears that these changes take some time to
become established, as similar investigations after shorter
periods of levodopa therapy have failed to show the same
abnormalities.4 British Medical Journal; Feb 17, 1973

I can't help but wonder if there is a part of the sinemet story yet to be told.