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