Foot dystonia was my first symptom, and I put 3 stress fractures in my left foot thinking I could somehow get it to loosen up by exercise- in this case, walking a lot. So much for that piece of stupidity.

Your other ideas are much better.

However, I do still do some stretching - particularly standing on the edge of a stair step with my toes and letting my body weight push down my heals (did anyone get that?) - it helps, but not until I have some Sinemet going.

We've been very interested in this thread. Kevin's feet are now so deformed I fear at some point he will not be able to walk. We started with a new neurologist this January. She was the first one who asked him to remove his shoes and socks. When she saw his feet she could not believe it.

We have since learned that if a really good movement disorder specialist had seen his feet years ago, PD would have been dianosed much sooner. He now takes a muscle relaxer at night (Clonazepam) and also Effexor XR which is an anti depressant but because of the way it works, it helps with movement issues.

For the first time in years, he is getting some sleep. The pain has been relieved or at least become bearable and the feet are not turning in so badly. His toes are awful but he wears sandels almost exclusively and that helps. I really feel for any of you going through this!! It does not get a lot better - even with DBS.

We have since met far too many with PD who are having feet problems but for some reason it is seldom discussed!?

I also take Clonazepam and generally wear Keen sandals because they are wide and stabilize my feet - so I feel they gently work against the dsytonia without creating more harm.

I also take Clonazepam and generally wear Keen sandals because they are wide and stabilize my feet - so I feel they gently work against the dystonia without creating more harm.

that you want to try the entrainment route:
Go to http://www.bwgen.com/
Download and install the program. It runs for 30 days free of charge.
Put on a pair of headphones, start the program, and select the default (Relax) program.

It stops mine in two or three minutes. It isn't very portable, but it might be able to give some relief.

Hi Lindy, et al...

I'm wondering how many of us with foot/ankle dystonia, diskinesia - weird, painful twisting, bending, turning, writhing, etc. have had injuries to any part of that foot,ankle, knee, hip PRE PD symptoms. I have had a popping hip since age 11, a broken big toe, nasty nail in the ball of the foot, sprained ankle - and no doubt other minor insults to the left side. None of these injuries were treated medically except removal of the nail in an Emergency room. I can't help but think that these injuries have resulted in a pre-disposition to weaknesses that manifest when the dumptruck load of l-dopa &/or agonist courses through that area.

Also, did the emergence of dystonia/diskenesia signal the beginning of the end of the 'honeymoon' period with the PD drugs? For me, the problem is the limiting factor in how much dope I can tolerate. Too much, too painful.

This thinking is part of my ongoing attempts to understand what is happening! Anybody out there have similar thoughts?

Ibby

Ibby, this is an old article but explains differences... Some dystonia is drug induced, some like mine is not.

In some patients with dystonia as initial symptom of PD, the dystonia abated or disappeared as PD progressed. Some hope there.

Dystonia in parkinson's disease: Clinical and pharmacological features
1988

Abstract
We studied the features of dystonia in 9 patients with untreated idiopathic Parkinson's disease and in 56 patients on sustained treatment with L-dopa. Dystonia was seen as an initial symptom in patients with both early- and late-onset Parkinson's disease and included action dystonia of the limbs and cranial dystonia. Although the coexistence of parkinsonism and dystonia suggests a common pathophysiology, antiparkinsonian drugs did not consistently influence dystonic spasms. L-dopa-induced dystonia was seen as an off-period, biphasic, or peak-dose phenomenon. Each type showed a distinctive pattern of localization of dystonic spasms, possibly reflecting neurochemical aspects of basal ganglia somatotopy.

Neuropharmacological studies performed in 12 patients suggest that off-period dystonia is genuinely induced by L-dopa and best relieved by antiparkinsonian agents.

Read the PDF:

http://www3.interscience.wiley.com/c...78039/PDFSTART


http://www3.interscience.wiley.com/c...TRY=1&SRETRY=0

This was my initial symptom. I would get the spasms when I was stressed, and mostly in the early hours in the morning. The pain would get so bad from the feet turning in, I would actually get sick to my stomach. After taking Sinemet, they have all but disappeared. I get them occasionally now, but not like I did in the beginning. I would like to add that my jaw clenching stopped too, and I haven't done that either since the very first dose of Sinemet.

I have, however, broken all my toe nails from my toes digging into the shoes when the spasms hit. As a result, I am slowly trimming the little nail bits back as they grow out.

Of all the symptoms of PD, I wouldn't wish this on anyone.

John

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