Did you know that recovery from musician's focal dystonia is possible? Good news...it is! Growing number of musicians have resolved focal dystonia symptoms and many who have, have done so by training. This channel is an attempt to share some of the self-training ideas and techniques that has been proven effective by me (Akiko Trush) and some of my fellow MFD colleagues. Training requires a lot of patience, but by grasping few key ideas and by having some persistence, recovery is possible. It's about consciously working on freeing every little movement one micro step at a time. The key is to be observant and to learn a little bit about why you might be experiencing the symptoms, what really is going on and how to break down the steps and most important of all, have a free mind.
Hey came across this as I got brass related dystonia from practicing rite of spring. As I grew up jazz my chops naturally succumbed to the increased demand. The symptoms were akin to a Novocaine shot that didnt wear off but also associated with "fake" arguments in my head and little releases of panic chemicals into my abs. Both of these I'm fixing by slowing down breathing.
Thank you SO much for sharing your journey. I aman oboe player just starting out on my journey with focal dystonia and your videos are wonderful and inspiring. Jen
I think you just saved my life, I Play E-Guitar and have exactely the Problem with the Shampoo, but it is Not the thumb, it is the little finger on the left Hand, I will try now what you explained , thanks 👍😊
Thank you for taking the time to share your story. I am just discovering my focal dystonia in my hands (bassist and lots of computer work). I am happy to hear your story about retraining your approach to the piano, and being mindful about all types of movement. I hope that I may find the same mindful solution .
Hi there Akiko. Everything you're saying is exactly the symptoms I have although my instrument is the guitar. Is there anything you offer in terms of paid lessons as what your saying is really familiar and I'm desperate to recover.
Thank you! This is valuable insite. I’m dealing with this on my right foot. The good news, I’ve been playing all my gigs and recording sessions with my left foot. And my timing is better than ever ! I am sure my right foot will come back even stronger.
Thank you for posting. Awesome that you have overcome this. I would like if it stayed away for good. I’m a pro drummer. My right foot stopped working while I was practicing to get my triple strikes faster. Now I can’t play even the simplest patterns. My foot won’t even go in the right position . I’m training to find a new technique. And for now I’m playing our shows with My left foot. That has been successfully working but I’d like my right back.
I don't have or know anyone with focal dystonia, but I am so fascinated with your journey here. As someone who obsesses over the form of my movements, I feel so happy to hear you articulate your inner thoughts so colourfully and clearly. Like when you said "birth a new way to move.." I had a big smile on my face.
Are you saying that the more we practice without the triggers, the quicker dystonia goes away so that we can almost play in the same way that we used to but without it triggering again? Also, do you ever still get triggers once a month or a few times a year or has it completely returned to how you were without any dystonia all of those years ago?
I've been living through this for 10 years myself. I'm still determined to get back a bit of my old identity, but with every day, it seems less and less possible. Glad someone is talking about this though!
Thank you for this wonderful video! You have a great talent for analysing and sharing the difficult things! More than 20 years ago I also had focal dystonia, but without knowing what it was. I thought I was the only one who had these disorders and felt very bad. I had a lot of shame. Your video would have helped me a lot at that time! I managed to use my right hand (I'm a guitarist) normally again after about 5 years. It took a lot of patience, I did a lot of single movements at a very slow tempo. I hope that many sufferers will watch your video to overcome focal dystonia more quickly. The problem is that many people don't know the term "focal dystonia". Maybe you would have to give search words like playing disorders in musicians or something like that.
I just wanted to thank you so much for your videos and for so generously sharing your story with us. I have dystonia at the moment and feel that i am beginning my process and your videos give so much hope for recovery. Arigatou Akiko.
Thank you for the hope, I have watched this video a few times over the years and it is inspiring. I'm so happy that you have recovered! Were you diagnosed by a doctor ? Thanks again for the video. It was very kind of you to take the time out for others whom are struggling with this condition.
This is awesome. I have focal dystonia and it seems there is a huge connection with early childhood traumas, it's fascinating that my adoption could be where it all started.
This ailment is devastating for any musician--especially if it is your lively hood- I have it in both hands as a classical and trained pianist and it seems to be progressive -am no longer to sit at the keyboard and perform simple scales at the least--the emotional toll is as it is- apparently it is neurological and their is no known cure
Dear Akikko, I'm halfway on my recovery from my left hand's focal dystonia, but it seems that I'm having a bottle neck on it and not making any further progress. I love piano so much and it always let me down when my efforts are in vain due to the problem. May I ask for some advice from you please?
Dear Mindful Pianist, being unable to play Trombone any longer due to a focal embouchure dystonia, I am extremly interested in your approach. All in all the mental setup and its recovery seems to be the way forward. What do you think, the best way of strengthening the mind is, confronted to the fact, that giving up always is part of the story
I am sorry you had to struggle for thirteen years. I developed a left index finger dystonia around 2006 and it took me four years to get rid of it. I know how I got it, it was through forcing myself to play straight filled tenths in Waller solos. I did not seek professional help either, more or less turning my time at the piano into a laboratory each day. I kept a diary in which I wrote the results of numerous experiments trying many different things. Some worked better than others but I soon realised that no single solution existed for a cure. A better idea was to create an enormous pile of tricks and if one didn't help on a particular day I tried another. I am primarily an improviser and it was a great comfort to discover that improvisation was affected far less than playing pieces. So I could, in some measure, preserve the joy of my music. I still don't fully know why this was so as movements are just movements whether learned or spontaneous. With my pieces I soon found that I had to alter the sound, the musical effect, to preserve and improve dexterity. This meant playing pieces in very unconventional ways for some time. I am not a classical pianist but I can appreciate that this device, although remarkably effective for me over time, could be frustrating at best and unthinkable at worst to a concert pianist. Of course there was a whole lot more to it. If nothing else the recovery was very, very complicated and personal. Nonetheless now, at seventy-five, I probably have a better technique than I did in my twenties. The main thing though was finding ways to preserve my joy in music through it all and I was very lucky being able to improvise in order to achieve this.
@@windy110 Sorry, I didn't see you had replied. The highly personal nature of a dystonia makes general advice very difficult. What was right for me might be no good or even detrimental to you. In general though I found some particular movements brought it on strongly while others caused fewer motor problems and some movements remained unaffected. With improvisation I could, in most situations, use the latter movements. With some pieces, I had to accept that in order to play them I had to alter traditional musical effect. Of course for a classical player I realise that would run contrary to all training. For instance in Chopin 25/6, 25/1 and 25/11, to name three, and indeed in much ragtime and swing, I found I could get through everything very easily, and at high speed provided I used a detached, light finger striking technique. But as soon as I started legato weight transfer things went wrong. Put simply, speed didn't matter but weight and leaning did. Now most people report the opposite reaction, so I have to be very careful dishing out advice. I also found my Virgil Practice Clavier crucial in recovery but again, those devices are not recommended even for healthy players. I was lucky in that improvisation provided a road back, albeit a long one, because I could create satisfying music wholly within symptomless movements and retain a high degree of creative freedom. Then little by little I extended the range of technique until things came right in general. Now, at seventy-five, I play better than I did in my twenties but the recovery was long and required much personal discipline and the retention of optimism.
I am 24 years old and have been living with focal dystonia for 5 years now and nothing Ive previously tried worked, did some physical therapy, botox injections, sensory tricks. But after coming across your videos and applying your method of retraining for only 2 months every day I already feel so much better, im not close to full recovery yet, but for the first time i see the light at the end of the tunnel, thank you so much Akiko!
Thanks for sharing this it’s great to see what the other side is like. Ive been sick my whole life but only realized it was dystonia this year. Doctors kept telling me I’d have to learn to hurt and I didn’t want to. Took me 6 months but Wow has a ton of motor control come back! The healing process is exactly as you describe im happy to have words for it now! For anyone learning to use their muscles again, please don’t give up. Keep pushing you will eventually find that first “clip”. Some advice I have is use your senses that work to drown out the ones that don’t. When I train I always turn off lights (my vision sucks) and put on music. Removing the visual static and adding the music takes me to a place where if I work hard I can find the connection I need to build. Also a real big tip I found medical marijuana to be a god send and I used cbd cream to stimulate healthy nerve reactions it really makes a big difference! Best of luck!
You give so much hope, thank you. Would you mean, that your way of rebirth also works to a trombne player, where not tension is the obvious main problem, but an extremely uncontrollable embouchure?
Im a violinist, and i have focal dystonia on my left hand middle finger. Its been 3 years when it first started affecting my playing enormously. Thanks for giving me hope again. Im gonna try and practise now💪
@The Mindful Pianist Thanks for sharing your story. You speak about „retraining“. Could you please go more into detail of what you did on a daily basis and also how frequently and how long you trained? What in practice is retraining? Thanks already. Kind regards from Luxembourg.
Hi! I saw this several years ago and have shared it with my sister and a few of my friends who also suffer from focal dystonia. Your success encouraged me to examine ways to retrain my body so that I can manage my symptoms more effectively. A breakthrough, for me, was to simply accept and forgive myself. Once I did that, I was able to begin the process of working with my body instead of forcing it to behave. It is not, nor will it ever be, a cure and will likely be with me always. I have, however, learned how to cope more effectively. Thank you!
I type for a living. I think doing typing exercises with this technique would help so that I don't have the pressure of trying to get work done. Would you go through the steps with both hands or just the affected one? (FYI--my dystonia is connected to Parkinson's.)
This works even if your dystonia is genetic like mine. Thank you for describing some of what I do through a dystonia storm. I also use a Chinese healing mantra of "it's already healed" Tai chi, has become my base retraining method now. It's a constant battle, yet maintains range of motion and control. Even it effects my breathing, the breath training meditations work through it and add stability. Just like dance for dystonia, I used drunken style to keep training martial arts. Retraining...as she says. It would be excellent to try and add, some EMS, acupuncture and cupping. I use some acupressure, depending on situations. Acupressure certainly helps, but the wrong application can be bad. Tiger balm, Albi balm is working great. Dystonia is exercising those cells better than any workout. They are filled with lactose acid that will make tour de France cyclist cry... actual tears...
I was piano instructor. I play piano for 10 years. But now i won't meet anybody since something happen to my life, my finger on right hand. When I try to press key by finger 1-3 with natural position, the 4th and 5th curl more than 1-3 do. And when i try to curl 1-3 to make it balance, the 4 and 5 do curl even more. It makes fingertips uneven and weight transfer absolutely Imposible , especially white keys passages like c major scale and mozart's. Very frustrating. Its bloody frustrating. I know how to play, I know much about music. I have much musical ideas and i love classical music. Piano is my life. It is my carreer. But my hand won't follow me. This is happened to my right hand only. The left one is no problem. Since I realized this, I went to ortophedic. And surgeon did stenosing tenosinovity surgery at my 3rd finger because it sounded click and inflammed. .. I think it is because my attempt to equalized those fingers with tension. Anda voila, 3rd finger got stenosing tenosin After surgery, the condition remained the same. No less, no more.. . The main problem stayed. 4th finger loves to curl so much more than 1-3 fingers do. Always more curl. ;( Is this focal dystonia?
Hi, Sorry to hear that you had a surgery that does not help. I had a similar problem but with my 2nd finger on LH. I have been playing the piano for more than 30 years but this problem happened about half a year ago. Whatever I played, my 2nd finger get closed (tightly curved) uncontrollable. I know how frustrating it is as piano has long been my life. Now what I’m doing is to retrain my 2nd finger from scratch, very slowly lifting, touching, and relaxing without making any sound. Just touch as soft as you can. At the very beginning I could not do this, but helped with the other hand. Tried to learn the feeling for every small changes of the finger. It seemed working a bit. Now I can make soft sound by my 2nd finger, which gave me some hope. Maybe you can also have a try; do remember, we should never use our old method to play because this will trigger the memory from the brain and it may replace the newly learned feelings. A new problem comes, that is I have to learn how to balance my entire LH. But I think I can do it later.
So true. The first thing that I did was massaging my arm from the fingers to the shoulder. I also rolled a can or whatever just to relax every single muscle possible. It is very important the breatheing and relaxation too, as much as possible. Then came a little confortable pain all over my arm and hand that allowed me to know how much my muscles were tense. And I wasn't aware of it. I wasn't consious of the torture over my body and also my mind. I was trying to be the best but, in fact, I was hurting myself. My passion turned to obsession. Believe me that the very next day I began to feel much better and without much less tension. It takes time and patience, but also setting the mind on the present and love for yourself: your mind is asking you to stop, please. Remember that music is for enjoy. Not to be perfect, just because. It doesn't matter the instrument. It' s about joy. So, it is very important what you are saying here. Thank You!
Have you ever had the botox injections for focal hand dystonia? I had them for years, I have handwriting dystonia and the botox helped, however I could not lift my middle finger to type after injection, so Botox created a 2nd handicap sadly, but I could write perfectly with it, but couldn't type well. During the pandemic I stopped the injections as an experiment to see if I could rehab on my own and to detox from the botox mostly. Now my issue is not only handwriting, but now keyboarding. I was always able to type 90wpm and this took me forever to type with the constant tension. I believe the botox created a 2nd dystonia where now my wrist extensors tense when typing, didn't have this before botox. Now I'm too afraid to get the injections again. I work in an office and I need to type and write, it's so depressing. I will try your technique so thank you for this, maybe I can fix it on my own!
It wasn't until a fellow trombonist said he thought he had focal dystonia in his "chops" (facial muscles or embouchure), that I wondered if that was similar to what was going in up to 3 fingers of my left hand (including thumb and pinky), where I would strangely stiffen up and be unable to really move those fingers for a while. Your video helped me realize that I had done it in somewhat tense moments, once recently when I was doing a Handel's' Messiah sing-a-long at church, and a few times when playing music with other trombonists. I also got it at least once while driving. I have as yet gotten it from playing piano, but I have not publicly performed on piano for quite a long time. The common situation seems to be the problem came when I was stressing out a little, being concerned about my performance. Driving in LA traffic is requires a kind of performance, along with unbelievable patience needed. Thank you for you video, since I think it both gives me hope I can recover, and for giving me some ideas on how to recover. About a year ago, I finally got off anti-anxiety meds that I was on for about 1.5 years, so I tend to be VERY anxious. And back starting around 1999, I developed strong music performance phobia, something I never really had before. I got "music coached" by one of the top classical trombones in the western USA to help me get over my phobia, which greatly involved focusing on the MOMENT in music, rather than on what the audience reactions are or might be, or if I might make a mistake. As you know, classical music, such as symphonic music I play, is very demanding in many ways, including the need for precision. Thanks again!
