Laura
I could hardly wait to reply to this when I saw it earlier. "Freezing" that I have experienced sounds very similar to yours. This has only started happening in the last 2 years.
It can best be described as my feet sticking to the ground/floor- as if my shoes were super-glued down. I have even tried to just continue walking through a freeze, only to have my torso go forward and my lower part of my body stay behind.I have found nothing that works, so I usually drop to my knees and literally crawl to my destination.
When does it happen? Sometimes for no rhyme or reason, but you can bet your bottom dollar that stress or anxiety adds to it lasting more than a few seconds. I KNOW that I will freeze when I am in "off" mode (end of dose - sometiimes a few minutes after taking meds, or when in tight places coupled wwith fatigue.
Here are some things I have found out about freezing in my case:
1. If I anticipate freezing, then I most definitely WILL freeze.
2. Floor textures sometimes cause it to occur (like walking on a wooden floor, then freezing when I come to a rug)
3. Tight places, doorways, or making quick turns cause freezing.
4. The more I worry about freezing and not being able to get to my destination, the harder it is to "unfreeze." (such as when you hear the baby crying or I am trying to get to a ringing telephone).
I believe it does in some cases have to do with advancing of the disease, but is not necessarily the norm in all cases. (e.g. paula doesn't sound like she experiences freezing as I know it, and she has had PD longer than I).
My history:
As I said earlier, I have only been bothered with this over the past 2 years. When I go annually for my clinical trial check-up in Atlanta, I am supposed to go in off medication for 12 hours. Two years ago, the freezing started when off meds. With assistance from my hubby, I was able to walk to my car, hubby let me out while he parked the car, and I stood all of t h at time. Once I stop, it is very, very difficult to start going again. After finally getting through the automatic doors (after 2-3 attempts, it came time for the elevator to go to the 3rd floor. What a riot!
The elevator would come down to first, open, then i could not move to get across the threshhold. Hubby kepot saying, "Let me get the wheelchair," but I kept refusing. After 10-11 attempts, he got pretty upset with me. I kept telling myself to step - step -step; and on the 11th try, I was able to step thru the elevator doorway. It wasn't as hard to get off, and I think it w as my messed up brain making me so anxious. This year, I told the doctor that with the back pain I have been having (and knowing how hard it is to get up in the mornings WITH meds) that I was going to just be checked when "on."
What helps?
This is a perfect time to try apopmorphine (Apokyn), the injection of mega agonist that kicks you into the "on" mode in a matter of minutes. When it first came out, you had to handle a syringe and needles and manually take the med up into the syringe, then give yourself a s hot. Well, duh! When I am "off," I am re4ally off! My hands don't work or anything. Now they have it in an epi-pen, something like an inkpen that you just inject yourself in the leg, etc. I still am a big chicken - haven't tried it et.
There's the Neupro patch (we had it for a while, then the US FDA pulled it because of packaging/storage problems. That release of medicine continuously helps some people. But for me it make more dyskinesias and horrible muscle spasms.
Then some say to swing your arms or bounce yourself up and down. Again, these folks telling this must not have what I have in an off time. I ain't able to swing or bounce nada! lol
Now, let me tell you about the anxiety that causes it to worsen. I have to talk to myself - out loud - so I give myself verbal cues - "Pick up your feet and take a step - heel/toe - heel/toe, etc. When none of that works I go down and crawl. Now this isn't too acceptable in public, so in those instances I resort to a wheelchair. Also, I have my family trained to get beside me, and I watch as they exaggerate taking a step, which usually brings me out of the freeze. (That doesn't work, of course, when you are alone). DBS is supposed stop freezing in most cases.
I am working on not letting it worry me so much, but things like hearing the baby cry or trying t o catch the phone, or answer the doorbell, well . . . they just don't happen. I have a sign on my door that says, "Taking a bath or nap - cannot come to the door;" or "It may take the person inside several minutes to answer the door." (to which my son jokingly once added - "Person inside is loading gun!") An intercom system would be best, but I didn't think about that until recently.
Finally, I want to address the time you went off medications. This is a fact - it takes a 2-week washout for carbidopa/levodopa (aka Sinemet). When you suddenly stop PD meds, you send your system into shock - and you get a rebound effect. This means that you could actually have worse symptoms than if you had never taken the PD meds. I instantly get very depressed - have horrible pain, and extreme rigidity and bradykinesia.
And with some medications for PD, or mixing certain meds with your MAO-Inhibitors (Eldepryl/Selegeline or Azilect), you can go into Neuroleptic Malignant Syndrome.
"Neuroleptic malignant syndrome is a rare, potentially life-threatening disorder that is usually precipitated by the use of medications that block the neurotransmitter called dopamine. Most often, the drugs involved are those that treat psychosis.
" Definition of neuroleptic malignant syndrome - NCI Dictionary of Cancer Terms
A life-threatening condition that may be caused by certain drugs used to treat mental illness, nausea, or vomiting. Symptoms include high fever, sweating, unstable blood pressure, confusion, and stiffness. Also called NMS."
HealthLine (OMS Preferred Provider)
Well, Laura - I think I beat you in number of words to this post! lol But you asked
Peggy