Following on from Libra's thread that I did'nt want to hijack I wondered if anyone can shed some light on how to manage foot dystonia (foot pulling down and turning inward, v painful in am) and more generalised dystonia. Neuro advised adding a sinemet cr in the night (gives headaches due to clenched teeth and nightmary dreams), gp thinks I should take quinine tabs, neither have helped, takes till my third meds of the day to get some relief and feel reasonably mobile. It feels like this posture is changing the shape of my foot. Have had internal dystonias for some time, those are worsening too, ........ in the mean time I am doing a rather strange hobble/shuffle punctuated by the odd yowl!

Pd certainly has a way of demolishing all dignity....

Lindy

Thanks for starting this thread Lindy..Ive had some trouble with that too

Almost every morning - ten minutes after rising it hits my left foot for 15 minutes and then it is gone for the day.

I have had success stopping it after about two minutes using binaural brainwave entrainment at about 6 HZ. In fact I don't recall a time that it failed.

If anyone knows what I am talking about, there is a shareware generator available called (what else?) - "Brain Wave Generator" Just google it.

That's fascinating, Rick!

Many people with the LRRK2 mutation start out with foot dystonia.

Lindy, I have foot dystonia at rest and it worsens with walking. My foot turned inward, toes curled, and I had spasms in my feet and my leg. The dystonia got my knee out of whack and I had awful knee pain (I have arthritis with bone spurs).

Baclofen, 10 mg three times a day, is my life saver. Most of the disabling dystonia is gone. I still have it sometimes, but it's uncomfortable, not unbearable. And my knees are okay, as long as I take the NSAID etodolac.

Maybe ask your neuro about baclofen. It's very good for foot dystonia.

my right foot has developed hammer toe in 2 of my toes. The toes don't hurt, but it is painful to walk, because the joint below toes now points downward and hurts to put pressure on it. This has developed since my dx with parkinsons so I assume they are connected. I haven't figured out how to solve problem, so no suggestions in that direction Lindy, but just lending a sympathetic ear.

use my "good side" to pull against the dystonia, not scientific, probably not helpful, stating the bleeding obvious, but I'm with you on this one and eagerly await better replies.

Neil.

I don't know if it the same as some of you describe but my right foot is turned inward and rotated to where I walk mostly on the outer edges of it. I have right sided PD. This has progressed to where I have what is called a tailor's bunion as the old time tailors would sit on their stools and turn the foot under them. It has become very painful, my foot is deformed and it has progressed to where I now have pain in the tarsals or larger bones of my foot due to my weight being carried on the edges of my foot. I have been to a podiatrist with no recommendations because it was said that this would simply recurr as PD progressses that he was not aware of any treatment.
I wear out the sides of my shoes before the bottoms!!! I don't get spasms, it's just always turned inwards, oh well..

Hi Jim,

I'm probably lucky that I don't do that as much anymore, but my foot still wants to turn in anyway which is really painful. I think the right foot wants to go in but it can't due to surgery I had many years ago.

Let me explain... I was born with a clubbed right foot, which is on the same side of my PD. The foot was surgically corrected twice. The first being in 1962as I was the second person in the world to have the heal cord lengthening, and the youngest person at 8-months to have it done. After that, I had a metatarsal osteotomy done to straighten the foot in 1982. This involved breaking the metatarsal bones and taking pieces of bone from my shin to fill in the gaps.

All was well until the PD started with the spasms again. As a result, my second toe pushes over the big toe and the rest of the foot tries to turn in. My left foot turns in when the cramps hit.

John

Jim, that is exactly what I had! Same side, too. I was walking on the side of my foot and looked pretty terrible when I 'walked'. I was all twisted and it was really painful. Baclofen fixed it.

I had bilateral clubbed feet. Had to have shoes with braces like Forest Gump!! Life is like a box of chocolates...