Musicians with Dystonia Bulletin Board

I think it's possible that individual cases of fhd might be very different from each other - either by being more or less progressed or maybe actually having root causes that are different enough that they require a different therapeutic approach. I've read a couple of articles suggesting that abnormal physiology might be a cause in some cases (connections developing between tendons or extra/missing muscles). I also had a look at a before and after youtube clip from Farias and the dystonic movements look nothing like mine. I don't know anyone here in Sydney with fhd so it's hard for me to know how similar my experience might be to what other people are going through. It's quite possible that what is true for me may be false for others and vice versa.

After getting your replies I read a few of Candia's articles. His research (like others') seems to show a connection between fhd and anomalies in the sensory cortex; also that constraint-induced therapies like SMR can be effective at reorganising the sensory map. I doubt that's enough to get rid of dystonic movements though.

The progress I've made seems to have come by first sorting out the proprioceptive and kinaesthetic senses - ie knowing which bit of which finger is making contact with something (the sensory map), knowing where the fingers are relative to each other, and knowing what movements the fingers are making. It was quite surprising to me at first how unaware of all these I was, particularly in my dystonic hand. Even when all that is much improved there is still the cramping and compensating to be taken care of - the normal balance between agonist and antagonist muscles doesn't automatically return. I have found that exercising my fingers under tension gradually resets the balance and leaves me capable of making the kind of movements that I used to make without even thinking about it - movements that are sensitive and precise and don't feel like they're unbalanced even when they're forceful.

I don't know whether this imbalance problem is caused by the nerves or the muscles but it seems to me that both are involved. When I first realised I had a problem I assumed that it must be muscular - that muscles on one side were just too strong for the muscles on the other side. After a while I came to the conclusion that the problem was in the nerves, not the muscles. I explained this to my fhd-afflicted friend in Germany late last year. She'd given up hope of improvement by then but had previously been seen by Altenmuller (who I think was one of Candia's thesis supervisors?) and she pointed out that one of his tests to see whether she was recovering was to check whether there was any increase in the strength of the muscles opposing the cramping and compensating muscles. This seems to suggest that muscle strength can be part of the equation.

Hand muscles are quite complicated, with different muscles able to accomplish roughly similar things. I think part of the problem for my middle finger was that it was just using the long flexor muscles (the muscle/tendon that goes from the elbow to the fingertip) to flex - the lumbrical and interossei (muscles in the palm of the hand) serving that finger had become very weak indeed. Again, I'm not sure whether this weakness was a nerve problem or a muscle strength problem but I'm not sure it matters - those small muscles just couldn't do what they were supposed to. I think this might be why the tension exercises work - holding a finger tense might exercise all the muscles connected to it (this might also explain why splinting doesn't always work - the muscles are still free to be over or underactive). Fine finger skills seem to require you to be able to use both the small intrinsic muscles and the large extrinsic muscles sensitively.

That's part of the reason why I decided to do the exercises on the piano instead of the cello. On the cello my left hand holds down the strings but it doesn't really make an obvious difference if I'm using too much force to do this. On the piano it's instantly obvious if the movements I make aren't sensitive because of the difference it makes to the volume of sound. There have been other benefits to using the piano as well. On the piano the fingers are very visible so it's more obvious when the proprioceptive and kinaesthetic senses aren't working. It's also very easy to compare what the two hands are doing and get a good idea of what normal muscle motion should be like (although after a while I realised that there was a small amount of dystonia in my other hand which is apparently common in fhd). Also it meant that I didn't have to torture myself with boring exercises on my main instrument. Although to be fair it hasn't been boring. Every exercise session I feel like I can notice big changes (although they probably wouldn't be big to someone without fhd) and that's been massively exciting for me. It's probably worth pointing out that the changes do transfer back to the cello as well. At first I wasn't sure that they would.

Clive, I think that process you talked about of rediscovering for yourself is very important. I think if somebody had tried to explain to me what was going wrong with my fingers it wouldn't have made much sense at all and I've come up with many theories along the way to try and make sense of it. The exercises I've been doing this year have mostly been about working out exactly what my fingers are doing wrong, how their movements influence the other fingers and what glitches there still are to iron out. That's really been the hard part - staying focused enough to notice the problems which are sometimes almost imperceptible.

Where I'm up to now is that for the most part I can use all my fingers sensitively and precisely and quickly when needed (I think rapid movements are an important part of playing, even slow playing). My middle left finger will still sometimes come down with more force than I intended but I haven't seen it curl into the palm for many months. The compensatory lifting is mostly gone although my left little finger in particular still needs some work (and I'm still not always aware of it when it does lift). All these improvements are most evident after I've done the exercises but they are still there the next time I play, even if I can't do the exercises for a week or more (for the most part I aim to do them every day which means I usually end up doing them 3 or 4 times a week).

I've just realised that I keep talking about tension exercises but it's really a cycle between exercising while holding the fingers under tension until I can then go back to doing the exercises without tension. Then I check for involuntary or problematic movements that are still happening and go back to holding the fingers under tension while exercising to sort those out. When I first started these exercises I needed tension in my fingers, in my MCP joints (the knuckles), in my hands and in my wrists to keep the fingers where I wanted them but now the tension is only needed in the fingers.