Wish my consultant had read this thread. My problems as you know started with dystonia in one hand/arm and spread to the foot/leg, only much less severe. Again its better on waking, worst with tiredness or stress. Aftet three years finally diagnosed yesterday with probable PD, but hes still a bit confused because of the lack of typical tremor, its a dystonic tremor instead, although dampened almost completely right now by beta blockers. Anyway he still hasn't ruled out other (worse) conditions, much to my concern, because of the atypical features. But he's starting me on medication, ropinorole. Says it may not help as some of my symptoms are definate parkinsonism but not definately sure its PD yet. Do others have problems with repetitive actions, like stirring, knocking, hair washing, tapping? He even tested me for signs of apraxia and seemed a bit concerned, but simulating tooth brushing and hair combing, etc with a dystonic hand is not easy! Was very fed up and upset afterwards as I'd started to adjust to idea of PD, not something even rarer, although he acknowledged they were unlikely, but then so is PD when you are 40 odd! I find exercise often helps my dystonia, compression knee length socks do too and a double tubigrip on arm right up to upper arm felt good too.

Rosa, does an alternative diagnosis have to be worse?
Repetitive actions are typically difficult for PD patients. Before I started on medication it was an effort to maintain the movement of egg beating, bread slicing, soup stirring, rubbing shampoo into hair, drying body parts with a towel. All the time I seemed to have to tell my arm to restart the movement as this movement petered out.It is similar to the tests the consultants make you perform with your fingers or toes. The affected side cannot keep up with the not (yet)affected side.
I can understand that you are deeply frustrated with this hesitancy over the diagnosis, still no certain outcome after all this time. On the other hand progression must be very slow, otherwise it would be easier to diagnose.....? Best wishes, Kate

Can relate to SF post about whispering, you think if you utter the words they will happen! Carol

Kate
The other two he mentioned were definately worse - both kill you within 10 years or less, usually involve some dementia or early severe incapacity,needing a tube for feeding within 5 years with one,etc. On checking the prevalence for each, corticobasal degeneration and supranuclear palsy its about 5-6 people out of 100,000! I knew however from my job what he was checking for and he admitted it, although said it was unlikely. But he keeps on about my presentation being untypical yet I have problems with every one of the tasks/actions you mentioned! It is exactly as if the movement just peters out. I myself think it is still relatively mild, but appeared a quicker deterioration to him because he didn't fully assess things like foot tapping before. Should start medication in a week or so.

Thanks for that, just checking the problem with repetitive movements is part of this really helped to know, haven't been asked what functional activities I have problems with, which makes me cross cos its the first thing I'd ask a patient in my job.

Try gel toe supports

Hi Rosa,

Glad to say dystonia is not keeping me away from the hills. Had a couple of attacks recently but they were over in about 5 mins, with no lasting after effects. Always the same, right leg calf muscle contracts painfully, followed by foot rotating and toes clawing. It's not so bad now knowing what to expect.

I've never had problem when cycling. Slowing down a lot but bad weather at weekends means not as active as I would like to be. And a reduction in waist size would help!

I've tried an exercise bike in the gym but find the repetitive motion of constant speed difficult to maintain. Not so repetitive on the hilly Scottish roads.

Best wishes,
Grey.

Sorry, I ment previous post for Rose...

Hi Rosa,

I too have problems with repetitive actions such as using a hand whisk, stirring, exercise bike etc. The motion starts well but quickly fads, sometimes to nothing. Also find it to be far worse in evenings.

Best wishes,
Grey.

hi i also suffer with dystonia in the feet on and off through the day does anybody get dead leg as well behind the knee and top of leg at the back

My dystonia started in May 2000, long before I was diagnosed with Parkinson's so I think it may be coincidental. I used to enjoy walking miles every day, but am no longer able to walk any distance before my foot locks and walking becomes awkward and painful.