It may sound a little crazy but remember to embrace your instrument every day. On my instrument (doublebass) I have had many fights, physical and mentally challenges, stress, competitions, defeats and anxiety. No wonder your body and our subconscious and our autonomic nervous system react on it. By hugging your instrument 5-10 minutes every day, is reprogramming your subconscious. Your instrument will then be categorized as a friend in your autonomic nervous system and not a enemy or a battlefield. It can be a good first step (but not the only) on the journey to cure. Try it out ;-)
Thanks for posting this. I was diagnosed with FD 13 years ago. I was a jazz guitarist for over 20 years and actually switched over to playing organ and synthesizer (7 years ago) because it was easier to facilitate the concept of making music with one functioning hand on these said instruments. I had tried numerous times to resolve my issues with FD several times with what can only be described as less that impressive results. I finally decided to really put my mind to it recently and dig deep from within to find out exactly what the real cause of my fingers/hand not doing what I wanted it to. I came to the conclusion that i really just needed to learn new movements - slowly - and retrain my brain. Your video has really inspired me and has confirmed what I was starting to discover. I've been working diligently for 2 weeks and I am starting to see positive results.
Hello, my name is Dimitris, I am a guitarist and I was just diagnosed today with focal dystonia. I thought that sharing our experiences on this subject with other focal dystonia guitarists might give us ideas on how to get over this. If interested please feel free to contact me: my Skype is dkiortsis2 and my Facebook is facebook.com/dimitris.kiortsis.5
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.
Hello Akiko-san, thank you very much for this encouraging commentary. I'm an amatuer guitarist dealing with FHD on my right picking hand and it's scary to see how my technique and overcompensation (d)evolved over my entire RUclips lifetime (14 years!). As a career engineer I was initially focused on trying to "fix" the problem but your path has highlighted to me the importance of a holistic approach that involves rethinking one's relationship with the instrument. I mean I love my guitars, all of them, maybe just a bit too much!
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!
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!
I am recovering from embouchure dystonia. There were a lot of deep psychological issues about myself as a musician I needed to work through in order to start healing. I am not recovered yet, as I have some "on" days when I find myself "in the zone" and my body is working harmoniously and effortlessly, and then I have some "off" days where I find myself hyper-focused on my embouchure. The "on" days are happening with greater regularity, but not to a point when I can rely on them to be there to play for others (or for money). I have been working on this for about 3 years. I think back and realize I started falling into dystonia about 13 years ago.
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!
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 .
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 understand what you mean by 'dystonia being manufactured' somewhere along the path of interpreting instructions that does not align with our optimal body movement. I do see many variations of mis-guided and/or mis-interpreted instructions that had led to somewhat permanent tension of certain muscle group that could have been the main cause of unbalanced sensory input, which... may have been one of the contributing ingredients for the onset of MFD, including myself. Certainly the 'palm parallel to the floor' understanding will force your elbow and wrist to be twisted away from the natural skeletal structure and finger mobility, especially thumb mobility is very compromised. I suspect that many students miss the understanding of the projection of the weight onto the fingers because of the misalignment of various body parts and misunderstanding of how movements originate. I did not seek for any focal dystonia re-training method, but I did get to collect wisdom from seemingly unrelated disciplines. In no way I could have worked it out completely all on my own either by all means and so I owe my recovery to everybody who is around me.
Thanks for your video! I am a drummer with focal dystonia in my left hand and I have been working on developing a method for overcoming it for over a year now (it was a very fast flare-up for me). I believe I'm currently on the right track and your video helps give me confidence that I will definitely get over this unbelievably soul-sucking condition! It's my intention to post a video when I have fixed the problem detailing to other drummers exactly how I went about it. On the bright side, whilst working on the problem I am channeling my passion for playing into guitar and piano a lot more, so I am still able to learn and continue that musical expression that is so important
I’ve been suffering dystonia for couple of years .I play guitar and worked as a barber for over 10 years .When I look back there was a lot of compensating I was doing without even knowing it .I started playing for a local darts team and this was where the dystonia became uncontrollable or undeniable .I have been practicing the Wim Hoff method aka the (iceman) method for over 1 month now and can see massive difference in my dystonia and my general well being .
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 👍😊
Brilliant video. I think I've a very similar attitude to the young woman in the video, and believe that there's a lot of benefit in connecting better with and understanding your relationship with your body. As strange as it sounds I don't think people are as conscious or care to be as understanding, or perhaps rarely need to, outside of extreme situations, or when the inevitable happens and the body is required to fall back on its final and drastic warning with pain or simply not working. Many years ago I was made aware of this with a very different subject to the one discussed here. I got into weight training, not in any serious way, more out of vanity than anything, but as with any activity there's clearly a lot of good advice and information available by professionals and those that have spent years studying the subject. What was immediately striking was the way body-builders seemed to have a better understanding, a more intimate relationship with how their muscles worked, and specifically in understanding how far they could push themselves, their exact energy levels and how their food intake and rest period, training intensity and regularity were far better understood than I felt I'd ever even considered. I imagine this is true of all sports people but I'd previously never taken an interest in such a thing so it was a very different concept to my relationship with my body or muscles. I actually believe this to be true now of everyone who uses their body or part of their body in any way different to a typical person living a normal life. I also believe that it's not necessarily natural but requires a little focus, an awareness that can easily be ignored as we spent a lifetime moving but rarely need to put any 'extra' thought or understanding into the process; or at least that's certainly true for those of us that don't do something that's essentially extraordinary or beyond the norm (ie, any form of sport, exercise, or activity that requires a physical use and/or requires years of practice, ie. playing an instrument). In an odd relation to this I applied a similar chain of thought with regards my father. He suffered a stroke many years ago which ultimately led me to be incredibly disappointed at how he was treated, and importantly how 'alien' the condition seemed to the 'professionals' looking after him. He had suffered the worst of strokes leaving him completely paralysed down one side and incapable of speaking. It had only been extreme luck and timing that my mother had effectively caught this on the night, likely within minutes, and he was able to be treated almost immediately. We were constantly reminded that his condition was about as bad as it gets and that in almost every similar situation the chances of survival are incredibly slim. Combined with his age, other conditions, and a soon to be diagnosed cancer after being admitted to hospital, the general attitude was that he was medically a helpless case, and the system simply kicks in to provide as much comfort for his remaining time. I didn't see it this way, naturally. It's of no consequence to me if a child has another seventy years of life, I have a couple of decades or Dad had only a few months. But I'm not in the medical profession! So I started trying to understand the condition, not accepting the explanation that we might as well be talking 'Russian' as far as he was concerned in terms understanding us. A very simple test absolutely confirmed this to not be true!!! That's not to say there were some very clear and extreme damage to his brain, the intimate understanding of him and his personality, and a refusal to simply always accept everything religiously, made me extremely determined to go beyond the professional care. However, the damage done to my father's brain from the stroke isn't too different from the damage the medical profession did to my respect for it as an industry. I won't go into every situation, every fight, every argument or discussion, but all of them are very clear to me because they were all noted in what first seemed to be a rather weird suggestion by my mother; to keep a diary. This actually proved to be an ingenious idea as it not only became an incredible form of positivity in that I kept an extremely detailed record of every change to Dad's condition. Specifically it helped me focus on continual but small improvements I might otherwise have not have paid as much attention to. It also helped compel me to spend every minute we were able to visit Dad to work on specifically improving the movement in Dad's paralysed arm. Apparently my diary proved to be of interest to the hospital and was mentioned on several occasions in discussions with my mother when I was briefly absent (taking a short break or a call of nature). Anyone who does find themselves in such a situation, I cannot stress how the focus, study and attention you put into the person if you're recording every detail can prove to be so incredibly positive. Positive words from anyone can be amazing. But nothing beats having physical proof and the clarity to record this for yourself. I would go so far as to suggest that diary was as beneficial to me as it was important to recording the improvements in Dad. There isn't a happy ending but there were some incredibly positive improvements until such a time the stroke was overtaken as the primary condition, including the start of speech and a strength and partial movement of the arm and hand. To be clear, I have unparalleled respect for nurses; the problem can be their better paid, better 'qualified' assistants; the consultants, doctors and specialists. Fortunately the very last one assigned to Dad at the very end wasn't of the same mould and attitude of the rest and proved to be exceptionally caring. This video reminded me of all this, and I think it highlights an important understanding and relationship we often lack with our own bodies. The truth of how I happened to accidentally find this video is very different to all that I've explained above. It is oddly connected to politics and a specific public figure who I believe has suffered, or is suffering from something related to Dystonia, or a form of Stroke perhaps. While I have nothing but the utmost sympathy for anyone who goes through well, anything outside of perfect health, with this one public figure I make an exception!
Thank you! This past November I was having dystonic symptoms, and I had to do one concert with the problem. This is the first video I came across in my research, and I stopped having issues, having caught the problem early enough and reversing the course. Blessings to you.
Wow, that is super great to hear. I believe sharing stories and raising awareness of this problem can get many many musicians to reverse course in early stages.
Thank you Akiko, I enjoy your channel very much. I have recently interviewed a FD recovered on my channel, I will be sharing this video on how you resolved, FD. Thanks again! Steve
This is a wonderful video. I am a 26-year-old flutist and developed embouchure dystonia seven years ago during music school. My dystonia has improved tremendously over the years. Personally, I have found that taking certain medications has been the key to alleviating my dystonic symptoms, as well as to alleviating the anxiety that I developed alongside my dystonia. I am yet to the place where I would call myself completely recovered, but my condition has been steadily and slowly improving over time. You’re exactly right that the body has a “fight-or-flight” reaction to playing one’s instrument or even the thought of playing one’s instrument. I think task specific dystonia should be talked about more and more as a psychosomatic disorder. I plan to share my own video soon about my own experiences with dystonia. For those that love and are devoted to music, developing dystonia is devastating. The more we can all support one another and share our stories, the better. Thank you again for sharing!
@@kevinmclean2415 Hi, Kevin! I'd be happy to discuss over email or direct message if you like... I think RUclips still has the option to send private messages? Would prefer not to share my medications publicly on RUclips as you can probably understand :)
@@Natalie-dw9jy Definitely! I couldn't figure out how to send a private message. My email address is kevinbrucemclean at gmail dot com - I'd really appreciate hearing from you!
I want to thank you for posting this video, and for being a voice for those with MFD. I have it in my left hand, and I'm a guitarist. I've been struggling with it for a few years now, but I do honestly believe that recovery is possible, even more so after watching this, and I will most definitely watch and learn from your other videos. I may even post a video of my own story and perhaps use my channel as a record of my recovery journey (which I've been meaning to, anyhow.) Anyways, thank you again! :-)
Hello, my name is Dimitris, I am a guitarist and I was just diagnosed today with focal dystonia. I thought that sharing our experiences on this subject with other focal dystonia guitarists might give us ideas on how to get over this. If interested please feel free to contact me: my Skype is dkiortsis2 and my Facebook is facebook.com/dimitris.kiortsis.5
Very good explanation, thank you for sharing your experience, knowledge and positive thinking.Yes, it is possible to recover and certainly quite many changes are required in order to do it. You understood your body, relationship with your instrument and perhaps you did find way ( peace ) how to control your emotions/stress ( mind ) when you perform and practice difficult pieces. I am in last stage of my recovery- 7th year, I feel that I understand what you came through, since I had quite similar way of finding what works and what doesn't .Best wishes from north Norway,Daniel ( viola player )
Thank you Daniel. It's a very personal journey to finding what works and what doesn't. I feel like I could have cut years to recover, knowing what I know today, but on the other hand, the very process of searching was probably the experience that I needed for my own personal growth. Best of everything to you too.
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.
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.
This is amazing knowledge you're sharing! And I can relate to everything you're saying. I have cervical dystonia many years now and Botox helps a bit. But I will certainly will benefit from your thoughtful insights. Thank you so much ✌😘
Thank you for this video. I am a violinist and violist (and, to a lesser degree, a pianist), and have had Focal Dystonia symptoms for 9 years now. It started out with finger confusion in my left hand and has progressed, especially in the last few years. For a while I worked with Jan Kagarice, who greatly helped me with focus of attention, thereby being able to negotiate around the dystonia by focusing on listening (note moves the finger), but after we weren't able to work together, the symptoms got worse. I appreciate your video, your hard work, and your encouragement that we can overcome this THING that has sidelined our careers. :-)
I have made a rather controversial approach by actually focusing on my symptoms (and of course various other parts of body) intensely ... especially after I have made conscious efforts to accepting my condition and giving in to what my body had to tell me. I have interpreted the symptoms as messages and guidelines to what I should be working on, rather than something I should fight against, ignore or navigate my attention away from. Our bodies are too clever make such a mistake. I am totally convinced now that focal dystonia, like many other disorder and disease, is a feedback from our mind/body to shake us hard enough and awaken us to be aliened to who we are meant to be, to guide us to be the better version of what we can possibly be.
@@themindfulpianist8606 you said FD is a feedback from our mind to shade us and awaken us to be aliened to who we are meant to be. I've been struggling with FD for over ten years and yes I thought my body was telling me - drop this, after 30 years of playing forget about it... Is it really what my mind/body tells me? Sounds like sentence. I can't imagine my life without playing guitar but at the same time I feel I lost my love, passion for guitar and performing because of FD. Very confusing and frustrating.
Hi! Thank you for your video! I have focal dystonia for over or about 12 years. In the beginning I just stop playing the piano, and about 7 years ago I decided trying to recover. What I liked about your video is that in my case the only thing I can say that really helped was to practice and trying to understand the triggers and rethinking the movements. I tried a lot of non invasive treatments, I even participated in a PHD paper research in my country as a case of study. I improved a lot, but not 100%, and I noticed that each day it's different, it depends in part how I am feeling as well, if I'm tired, anxious or depressed it tends to be harder to control, or I feel more weakness on the affected fingers. I do not believe I will ever be able to play and perform in high level as before, but I'm also curious and I keep trying. I'd love to have your contact if possible. Thank you!
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.
Thank you so much for sharing your experience! This is exactly what I need right now. I have exactly the same issue you had, also on my right thumb, also folding by itself towards my palm as if it has its own mind. You have brought hope!❤️
J’ai également ce problème sur mon instrument la guitare, et je lutte contre ce problème depuis 5 ans, sans l’aide de personne. Je crois comme vous qu’il faut être très patient, tenace et bien observer le problème sous tous les angles, et réapprendre en définitive en découvrant les fondamentaux des mouvements et postures. Cette année je commence à atteindre enfin un résultat qui me laisse à penser que je pourrais avoir un rétablissement complet de ma dystonie un jour, peut-être très bientôt. Merci pour votre partage de cette expérience douloureuse , J’ai moi-même partagé sur la dystonie focale du musicien sur ma page faceBook, votre post donne de l’espoir. Je suis certain que l’on peut s’en sortir et que le meilleur thérapeute n’est autre que nous même...
Salut! J'ai aussi le problème qui commence après une fracture, ca a été mentionné par la chirurgiennne de la main durant le suivi (donc pas de l'auto diagnostique), pour le moment c'est très très leger encore, mais je sens des genes. Par exemples des arpèges rapides, par exemple la partie arpégé du milieu de la chaconne de BWV 1004, avant l'accident, je la tenais +/- a vitesse, ajd, bcp bcp de raté, le platre a été retiré il y a 9 mois et je travaille tous les jours plusieurs heures, bien que n'ayant pas encore pris le temps de me remettre vraiment sur cette pièce en particulier, je sens que y'a des trucs qui ont changé... Du coup des conseils ? :/ (aussi, je pense vous "piquer", ou m'inspirer de votre arrangement de Everybody's gotta learn sometimes, c'est tellement évident que c'est un super morceau pour guitare seul, super idée! Et suis dans le gang godin aussi, mais la ACS nylon slim pour moi, avec "projet" d'en acheter une avec caisse dans le future, c'est ma pelle principale depuis deux ans, du beurre leurs instruments non ?)
I have had focal dystonia of the hand, and similar things with other body parts for the past 25 years or so. I have never had it officially diagnosed, but I have never seen a neurologist or therapist that might know of this disorder. I have social anxiety and generalized anxiety, and perhaps some OCD, but no other diagnosis that sheds more light on how to go about treating this thing. It has been the scourge of my life, severely limiting what I will attempt - jobwise, hobbies and in social situations. I have attempted to get to the root of it and have had some insights from counselors as to the effects of past events, but nothing definitively, and nothing that really explains the mechanism, which is intensely frustrating. My quality of life and ability to hold down a job is always a struggle, though I feel there is a big component of anxiety attached to it Your descriptions of self-therapy are giving me some hope to try again to figure this thing out. Thanks!
@Josh - I have had some kind of undiagnosed problem in my right (dominate) hand only when attempting to write for about 6 years. It is the must mysterious thing I've ever encountered. It is extremely distressing and disconcerting. You are not alone. Don't give up. I wish you well.
I admire you so much for being able to work this out on your own. It took me 20 years with training to reach a high level of playing again (actually a higher level than I had attained at my best prior to any injury). I still feel the dystonia is there and can be triggered by movements that I used to associate with it. For myself, I believe the dystonia was manufactured, partly, by my determination to follow instructions to the letter. It's possible that my strong belief in the instruction blocked me from feeling free to experiment, but I am still not sure I eould have come up with solutions on my own. A big piece of the puzzle was my discovery of my ulna and the bone/bone connection it has with tge humorus. This led me to exploring a more tilted (5th finger side) position of the hand and arm. Earlier in my training, I had been told to do just the opposite--palm parallel yo tge floor. I wonder how many students have difficulty due to not knowing how to project weight into the keys.
rbcmh That's very much an issue for me as well! I was more occupied with doing what my teacher said (much of what was incorrect), than respecting what felt comfortable for me. Since finding a teacher who can hear tension and has amazing technique, I spend time on working out the right angle and feeling, rather than just pursuing a sound. My best wishes to you for your endeavors!
I took a few lessons but am mostly self taught and I developed dystonia. I’ve had it since 2004 in my left fretting hand. I also developed it in college in the mid-80s but that miraculously cleared up after a couple years. I was dystonia free for about 20 years when it came back, same hand but different manifestation (no curling this time).
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.
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.
Hello, I am contacting from DMRFC (Dystonia Medical Research Foundation Canada) based in Canada. The mission of the DMRFC is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families. Currently, we have about 2-4 videos of individuals suffering from dystonia under 'patient stories' on our channel. If we have your permission, we would like to repost your video on our RUclips channel. We are sorry that you have to go through the pain! The Dystonia Foundation is doing the best they can to build more awareness about the disorder, and your video can definitely help them. Thank you for your time Regards, DMRF Canada
I am experiencing my index fingers locking in a curl at different times. I have some pain on the index fingers (both hands) when curling my hands into a fist
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
Hi the mindful pianist and to everyone! I’m a violinist with focal ya to ja since three years now and working on it. Does anyone of you tried a treatment with botulinium toxin?? Thank you.
I've actually have 3 rounds of botox injections in my earlier days. It didn't contribute to my retraining or recovery, though I think it did make my symptoms a bit milder.
@@themindfulpianist8606 oh God just watching this again and seeing that I didn’t answer you, I’m so sorry. RUclips is truly not my social media. But thank you for your answer. I recently tried Botox and it helps but just in a super partial way, I mean nothing relevant. Anyway, in general during this two years my performance is been increasing, so I feel myself like at 65% of my skills. I trust in a full recovery and your witness give me hope to achieve that. Thank you so much for that!
Il mio nome è Pietro Ricchiuti, sono un chitarrista professionista e sono affetto da distonia alla mano destra. Vorrei poter comunicare con lei perchè il suo video è molto interessante ma non so esprimermi con la lingua inglese. Le sarei infinitamente grato se potesse aiutarmi....La ringrazio e le auguro ogni bene!
It's really hard to say, because it probably took me 10 years to full recover but I performed 'somewhat okay' for a much long time before that. I'd say it took me 3 years to resume to performing 'okay' and 10 years to recover to the point that I could play everything I wanted again. Knowing what I know today, I think I could have done it MUCH faster.
I don't think you ever really had focal dystonia - or maybe you had the mildest form. The ease with which you are opening your right hand is proof of this. I know someone with focal dystonia, and he can only open the first three digits of his right hand comfortably. The only way he can open his hand completely is to stick his third and fourth fingers together, but then the second finger drops a bit. As soon as he moves the fourth finger away from the third, it begins to drop, taking the fifth along with it. This person is a pianist and his condition is not task specific. He can barely do easy tasks like shaking hands, waving, clapping, or washing his face. He tried Botox, but his hand eventually got used to this medication. Playing Romantic works on the piano, works that require any kind of a stretch (octaves, chords, etc...) is now impossible. And so are early period works such as Bach and Mozart, as the fourth finger wants to constantly press into the keys. When he raises his hand from the keys the fourth finger drops and the third sticks out. He has tried everything, and is now only relying on very slow practice with no improvement. There is no cure for acute focal dystonia - at least not yet.
Hi, we don't care what you think... seriously, it's not because your friend case is worst and/or not similar that your friend IS what every focal dystonia case is about. Google search 5 min, you'll realize there's as much variation in dystonia types as there's a-hole on the earth. Then, degree may vary, a lot! I've been told I had the issue few month ago by a hand surgeon after a bone break (not that it's the direct cause, but it was noticed by her at that time and it might be due to nerve damages), at first, I just thought "argh, ok, some muscles do their own life, I'll be able to get over it", and it didn't got much far. (I already have a paralyzed left hand pinky, not like it was the first time for me) Since, it kind of got visible and I have the feeling of my right hand sometimes feeling "numb", quick arpegios I could play before are now... less than optimal, but I thought first it was just due to the bone break and still needed a bit of time to get everything back up and ready. I was wrong. But I'm sure you'll be there too to undiagnose rando's on the web... Anyways, don't judge people like that, what is the point of your comment? talk about your friend? Then, just cut the part where you deny others based on your 2 cent personal experience of people you know. Also, there's no cure, but tons of people find solutions for them and share it, for instance, a session bassist who use gloves, without them, his hand shake like a earthquake, with them, the hand is stable, but I'm sure you'll be there to un-diagnose him. There's tons or people explaining how they could recover/reduce symptoms/be able to play again by "re-learning", but I guess those are just lies, problem is, most of them don't sell anything, so what would be the point of having that much people "faking getting through it" ? It's sad for your friend, he's definitively not lucky, but mind your own business. tldr: stfu doc ^^
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It may sound a little crazy but remember to embrace your instrument every day. On my instrument (doublebass) I have had many fights, physical and mentally challenges, stress, competitions, defeats and anxiety. No wonder your body and our subconscious and our autonomic nervous system react on it.
By hugging your instrument 5-10 minutes every day, is reprogramming your subconscious.
Your instrument will then be categorized as a friend in your autonomic nervous system and not a enemy or a battlefield.
It can be a good first step (but not the only) on the journey to cure.
Try it out ;-)
I'll try it today!
Excellent comment
I like the hugging idea!! Thanks Jakob!
Thanks for posting this. I was diagnosed with FD 13 years ago. I was a jazz guitarist for over 20 years and actually switched over to playing organ and synthesizer (7 years ago) because it was easier to facilitate the concept of making music with one functioning hand on these said instruments. I had tried numerous times to resolve my issues with FD several times with what can only be described as less that impressive results. I finally decided to really put my mind to it recently and dig deep from within to find out exactly what the real cause of my fingers/hand not doing what I wanted it to. I came to the conclusion that i really just needed to learn new movements - slowly - and retrain my brain. Your video has really inspired me and has confirmed what I was starting to discover. I've been working diligently for 2 weeks and I am starting to see positive results.
Hello, my name is Dimitris, I am a guitarist and I was just diagnosed today with focal dystonia. I thought that sharing our experiences on this subject with other focal dystonia guitarists might give us ideas on how to get over this. If interested please feel free to contact me: my Skype is dkiortsis2 and my Facebook is facebook.com/dimitris.kiortsis.5
I have had dystonic reactions to writing for 6 years (I also play the violin). You have given me hope! Thank you Akiko.
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.
Hello Akiko-san, thank you very much for this encouraging commentary. I'm an amatuer guitarist dealing with FHD on my right picking hand and it's scary to see how my technique and overcompensation (d)evolved over my entire RUclips lifetime (14 years!). As a career engineer I was initially focused on trying to "fix" the problem but your path has highlighted to me the importance of a holistic approach that involves rethinking one's relationship with the instrument. I mean I love my guitars, all of them, maybe just a bit too much!
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!
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!
I am recovering from embouchure dystonia. There were a lot of deep psychological issues about myself as a musician I needed to work through in order to start healing. I am not recovered yet, as I have some "on" days when I find myself "in the zone" and my body is working harmoniously and effortlessly, and then I have some "off" days where I find myself hyper-focused on my embouchure. The "on" days are happening with greater regularity, but not to a point when I can rely on them to be there to play for others (or for money). I have been working on this for about 3 years. I think back and realize I started falling into dystonia about 13 years ago.
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!
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 .
Thank you thank you thank you for sharing! Gives so many people so much hope!
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.
Could you share some of your tricks? I am currently stuck, frustrated and out of ideas on how can I get better
@@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 understand what you mean by 'dystonia being manufactured' somewhere along the path of interpreting instructions that does not align with our optimal body movement.
I do see many variations of mis-guided and/or mis-interpreted instructions that had led to somewhat permanent tension of certain muscle group that could have been the main cause of unbalanced sensory input, which... may have been one of the contributing ingredients for the onset of MFD, including myself.
Certainly the 'palm parallel to the floor' understanding will force your elbow and wrist to be twisted away from the natural skeletal structure and finger mobility, especially thumb mobility is very compromised. I suspect that many students miss the understanding of the projection of the weight onto the fingers because of the misalignment of various body parts and misunderstanding of how movements originate.
I did not seek for any focal dystonia re-training method, but I did get to collect wisdom from seemingly unrelated disciplines. In no way I could have worked it out completely all on my own either by all means and so I owe my recovery to everybody who is around me.
Thanks for your video! I am a drummer with focal dystonia in my left hand and I have been working on developing a method for overcoming it for over a year now (it was a very fast flare-up for me). I believe I'm currently on the right track and your video helps give me confidence that I will definitely get over this unbelievably soul-sucking condition! It's my intention to post a video when I have fixed the problem detailing to other drummers exactly how I went about it.
On the bright side, whilst working on the problem I am channeling my passion for playing into guitar and piano a lot more, so I am still able to learn and continue that musical expression that is so important
I’ve been suffering dystonia for couple of years .I play guitar and worked as a barber for over 10 years .When I look back there was a lot of compensating I was doing without even knowing it .I started playing for a local darts team and this was where the dystonia became uncontrollable or undeniable .I have been practicing the Wim Hoff method aka the (iceman) method for over 1 month now and can see massive difference in my dystonia and my general well being .
Could you please elaborate on how you think the Wim Hoff method helped in this specific case?
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 👍😊
Brilliant video. I think I've a very similar attitude to the young woman in the video, and believe that there's a lot of benefit in connecting better with and understanding your relationship with your body. As strange as it sounds I don't think people are as conscious or care to be as understanding, or perhaps rarely need to, outside of extreme situations, or when the inevitable happens and the body is required to fall back on its final and drastic warning with pain or simply not working.
Many years ago I was made aware of this with a very different subject to the one discussed here. I got into weight training, not in any serious way, more out of vanity than anything, but as with any activity there's clearly a lot of good advice and information available by professionals and those that have spent years studying the subject. What was immediately striking was the way body-builders seemed to have a better understanding, a more intimate relationship with how their muscles worked, and specifically in understanding how far they could push themselves, their exact energy levels and how their food intake and rest period, training intensity and regularity were far better understood than I felt I'd ever even considered. I imagine this is true of all sports people but I'd previously never taken an interest in such a thing so it was a very different concept to my relationship with my body or muscles. I actually believe this to be true now of everyone who uses their body or part of their body in any way different to a typical person living a normal life. I also believe that it's not necessarily natural but requires a little focus, an awareness that can easily be ignored as we spent a lifetime moving but rarely need to put any 'extra' thought or understanding into the process; or at least that's certainly true for those of us that don't do something that's essentially extraordinary or beyond the norm (ie, any form of sport, exercise, or activity that requires a physical use and/or requires years of practice, ie. playing an instrument).
In an odd relation to this I applied a similar chain of thought with regards my father. He suffered a stroke many years ago which ultimately led me to be incredibly disappointed at how he was treated, and importantly how 'alien' the condition seemed to the 'professionals' looking after him. He had suffered the worst of strokes leaving him completely paralysed down one side and incapable of speaking. It had only been extreme luck and timing that my mother had effectively caught this on the night, likely within minutes, and he was able to be treated almost immediately. We were constantly reminded that his condition was about as bad as it gets and that in almost every similar situation the chances of survival are incredibly slim. Combined with his age, other conditions, and a soon to be diagnosed cancer after being admitted to hospital, the general attitude was that he was medically a helpless case, and the system simply kicks in to provide as much comfort for his remaining time. I didn't see it this way, naturally. It's of no consequence to me if a child has another seventy years of life, I have a couple of decades or Dad had only a few months. But I'm not in the medical profession!
So I started trying to understand the condition, not accepting the explanation that we might as well be talking 'Russian' as far as he was concerned in terms understanding us. A very simple test absolutely confirmed this to not be true!!! That's not to say there were some very clear and extreme damage to his brain, the intimate understanding of him and his personality, and a refusal to simply always accept everything religiously, made me extremely determined to go beyond the professional care. However, the damage done to my father's brain from the stroke isn't too different from the damage the medical profession did to my respect for it as an industry. I won't go into every situation, every fight, every argument or discussion, but all of them are very clear to me because they were all noted in what first seemed to be a rather weird suggestion by my mother; to keep a diary.
This actually proved to be an ingenious idea as it not only became an incredible form of positivity in that I kept an extremely detailed record of every change to Dad's condition. Specifically it helped me focus on continual but small improvements I might otherwise have not have paid as much attention to. It also helped compel me to spend every minute we were able to visit Dad to work on specifically improving the movement in Dad's paralysed arm. Apparently my diary proved to be of interest to the hospital and was mentioned on several occasions in discussions with my mother when I was briefly absent (taking a short break or a call of nature). Anyone who does find themselves in such a situation, I cannot stress how the focus, study and attention you put into the person if you're recording every detail can prove to be so incredibly positive. Positive words from anyone can be amazing. But nothing beats having physical proof and the clarity to record this for yourself. I would go so far as to suggest that diary was as beneficial to me as it was important to recording the improvements in Dad. There isn't a happy ending but there were some incredibly positive improvements until such a time the stroke was overtaken as the primary condition, including the start of speech and a strength and partial movement of the arm and hand. To be clear, I have unparalleled respect for nurses; the problem can be their better paid, better 'qualified' assistants; the consultants, doctors and specialists. Fortunately the very last one assigned to Dad at the very end wasn't of the same mould and attitude of the rest and proved to be exceptionally caring.
This video reminded me of all this, and I think it highlights an important understanding and relationship we often lack with our own bodies.
The truth of how I happened to accidentally find this video is very different to all that I've explained above. It is oddly connected to politics and a specific public figure who I believe has suffered, or is suffering from something related to Dystonia, or a form of Stroke perhaps. While I have nothing but the utmost sympathy for anyone who goes through well, anything outside of perfect health, with this one public figure I make an exception!
Thank you! This past November I was having dystonic symptoms, and I had to do one concert with the problem. This is the first video I came across in my research, and I stopped having issues, having caught the problem early enough and reversing the course. Blessings to you.
Wow, that is super great to hear. I believe sharing stories and raising awareness of this problem can get many many musicians to reverse course in early stages.
Thank you Akiko, I enjoy your channel very much. I have recently interviewed a FD recovered on my channel, I will be sharing this video on how you resolved, FD. Thanks again! Steve
This is a wonderful video. I am a 26-year-old flutist and developed embouchure dystonia seven years ago during music school. My dystonia has improved tremendously over the years. Personally, I have found that taking certain medications has been the key to alleviating my dystonic symptoms, as well as to alleviating the anxiety that I developed alongside my dystonia. I am yet to the place where I would call myself completely recovered, but my condition has been steadily and slowly improving over time.
You’re exactly right that the body has a “fight-or-flight” reaction to playing one’s instrument or even the thought of playing one’s instrument. I think task specific dystonia should be talked about more and more as a psychosomatic disorder.
I plan to share my own video soon about my own experiences with dystonia. For those that love and are devoted to music, developing dystonia is devastating. The more we can all support one another and share our stories, the better. Thank you again for sharing!
Hi Natalie, what medications worked for you and what did you do to get those prescriptions?
@@kevinmclean2415 Hi, Kevin! I'd be happy to discuss over email or direct message if you like... I think RUclips still has the option to send private messages? Would prefer not to share my medications publicly on RUclips as you can probably understand :)
@@Natalie-dw9jy Definitely! I couldn't figure out how to send a private message. My email address is kevinbrucemclean at gmail dot com - I'd really appreciate hearing from you!
Kevin McLean of Foamers' Folly. Awesome! I’ll email you this evening. Looking forward to sharing some things!
@@Natalie-dw9jy please i am facing focal dystonia about 20 years please tell me medicine which you used and recoved
I want to thank you for posting this video, and for being a voice for those with MFD. I have it in my left hand, and I'm a guitarist. I've been struggling with it for a few years now, but I do honestly believe that recovery is possible, even more so after watching this, and I will most definitely watch and learn from your other videos. I may even post a video of my own story and perhaps use my channel as a record of my recovery journey (which I've been meaning to, anyhow.) Anyways, thank you again! :-)
Hello, my name is Dimitris, I am a guitarist and I was just diagnosed today with focal dystonia. I thought that sharing our experiences on this subject with other focal dystonia guitarists might give us ideas on how to get over this. If interested please feel free to contact me: my Skype is dkiortsis2 and my Facebook is facebook.com/dimitris.kiortsis.5
Very good explanation, thank you for sharing your experience, knowledge and positive thinking.Yes, it is possible to recover and certainly quite many changes are required in order to do it. You understood your body, relationship with your instrument and perhaps you did find way ( peace ) how to control your emotions/stress ( mind ) when you perform and practice difficult pieces. I am in last stage of my recovery- 7th year, I feel that I understand what you came through, since I had quite similar way of finding what works and what doesn't .Best wishes from north Norway,Daniel ( viola player )
Wow, wonderful! Best wishes for you.
Thank you Daniel. It's a very personal journey to finding what works and what doesn't. I feel like I could have cut years to recover, knowing what I know today, but on the other hand, the very process of searching was probably the experience that I needed for my own personal growth. Best of everything to you too.
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.
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.
This is amazing knowledge you're sharing! And I can relate to everything you're saying. I have cervical dystonia many years now and Botox helps a bit. But I will certainly will benefit from your thoughtful insights. Thank you so much ✌😘
Thank you for this video. I am a violinist and violist (and, to a lesser degree, a pianist), and have had Focal Dystonia symptoms for 9 years now. It started out with finger confusion in my left hand and has progressed, especially in the last few years. For a while I worked with Jan Kagarice, who greatly helped me with focus of attention, thereby being able to negotiate around the dystonia by focusing on listening (note moves the finger), but after we weren't able to work together, the symptoms got worse. I appreciate your video, your hard work, and your encouragement that we can overcome this THING that has sidelined our careers. :-)
I have made a rather controversial approach by actually focusing on my symptoms (and of course various other parts of body) intensely ... especially after I have made conscious efforts to accepting my condition and giving in to what my body had to tell me. I have interpreted the symptoms as messages and guidelines to what I should be working on, rather than something I should fight against, ignore or navigate my attention away from. Our bodies are too clever make such a mistake.
I am totally convinced now that focal dystonia, like many other disorder and disease, is a feedback from our mind/body to shake us hard enough and awaken us to be aliened to who we are meant to be, to guide us to be the better version of what we can possibly be.
@@themindfulpianist8606 you said FD is a feedback from our mind to shade us and awaken us to be aliened to who we are meant to be. I've been struggling with FD for over ten years and yes I thought my body was telling me - drop this, after 30 years of playing forget about it... Is it really what my mind/body tells me? Sounds like sentence. I can't imagine my life without playing guitar but at the same time I feel I lost my love, passion for guitar and performing because of FD. Very confusing and frustrating.
Well! I´m asking my self if I have already some light symptoms of fokal dystonia.... you already helped me with your video! Thank you very much!
Hi! Thank you for your video!
I have focal dystonia for over or about 12 years.
In the beginning I just stop playing the piano, and about 7 years ago I decided trying to recover.
What I liked about your video is that in my case the only thing I can say that really helped was to
practice and trying to understand the triggers and rethinking the movements. I tried a lot of non invasive
treatments, I even participated in a PHD paper research in my country as a case of study.
I improved a lot, but not 100%, and I noticed that each day it's different, it depends in part how
I am feeling as well, if I'm tired, anxious or depressed it tends to be harder to control, or I feel
more weakness on the affected fingers.
I do not believe I will ever be able to play and perform in high level as before, but I'm also curious and
I keep trying.
I'd love to have your contact if possible.
Thank you!
I have seem focal dystonia. Are your fingers curling when you are playing piano?
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.
Thank you so much for sharing your experience! This is exactly what I need right now. I have exactly the same issue you had, also on my right thumb, also folding by itself towards my palm as if it has its own mind. You have brought hope!❤️
Thank you. If you would like to know anything in particular or if I can answer any questions, please let me know.
Thank you so much, it's really kind of you. :)
How is your recovering now? I hope you full recovered.
J’ai également ce problème sur mon instrument la guitare, et je lutte contre ce problème depuis 5 ans, sans l’aide de personne. Je crois comme vous qu’il faut être très patient, tenace et bien observer le problème sous tous les angles, et réapprendre en définitive en découvrant les fondamentaux des mouvements et postures.
Cette année je commence à atteindre enfin un résultat qui me laisse à penser que je pourrais avoir un rétablissement complet de ma dystonie un jour, peut-être très bientôt. Merci pour votre partage de cette expérience douloureuse , J’ai moi-même partagé sur la dystonie focale du musicien sur ma page faceBook, votre post donne de l’espoir. Je suis certain que l’on peut s’en sortir et que le meilleur thérapeute n’est autre que nous même...
Salut! J'ai aussi le problème qui commence après une fracture, ca a été mentionné par la chirurgiennne de la main durant le suivi (donc pas de l'auto diagnostique), pour le moment c'est très très leger encore, mais je sens des genes. Par exemples des arpèges rapides, par exemple la partie arpégé du milieu de la chaconne de BWV 1004, avant l'accident, je la tenais +/- a vitesse, ajd, bcp bcp de raté, le platre a été retiré il y a 9 mois et je travaille tous les jours plusieurs heures, bien que n'ayant pas encore pris le temps de me remettre vraiment sur cette pièce en particulier, je sens que y'a des trucs qui ont changé...
Du coup des conseils ? :/
(aussi, je pense vous "piquer", ou m'inspirer de votre arrangement de Everybody's gotta learn sometimes, c'est tellement évident que c'est un super morceau pour guitare seul, super idée! Et suis dans le gang godin aussi, mais la ACS nylon slim pour moi, avec "projet" d'en acheter une avec caisse dans le future, c'est ma pelle principale depuis deux ans, du beurre leurs instruments non ?)
I'm not a musician, but you helped me a little bit to understand how to approach the problem in my hand. thank you :)
I have had focal dystonia of the hand, and similar things with other body parts for the past 25 years or so. I have never had it officially diagnosed, but I have never seen a neurologist or therapist that might know of this disorder. I have social anxiety and generalized anxiety, and perhaps some OCD, but no other diagnosis that sheds more light on how to go about treating this thing. It has been the scourge of my life, severely limiting what I will attempt - jobwise, hobbies and in social situations. I have attempted to get to the root of it and have had some insights from counselors as to the effects of past events, but nothing definitively, and nothing that really explains the mechanism, which is intensely frustrating. My quality of life and ability to hold down a job is always a struggle, though I feel there is a big component of anxiety attached to it Your descriptions of self-therapy are giving me some hope to try again to figure this thing out. Thanks!
Thank you! Will you email me at info@themindfulpianist.com ? I'd love to know a little bit more...
@@themindfulpianist8606 yes i can sure do that - will be a day or two, thank you.
@Josh - I have had some kind of undiagnosed problem in my right (dominate) hand only when attempting to write for about 6 years. It is the must mysterious thing I've ever encountered. It is extremely distressing and disconcerting. You are not alone. Don't give up. I wish you well.
This is just brilliant and gives me great hope. Thankyou.
Thank you so much for this. Brings me a lot of hope!
Thankyou for speaking up :)
Thanks for sharing your experience with other i am going to put in practice your advice about distonia in my arm as well
Thank you for sharing this video, your explanation makes me believe that I can cure myself from this problem!
I admire you so much for being able to work this out on your own. It took me 20 years with training to reach a high level of playing again (actually a higher level than I had attained at my best prior to any injury). I still feel the dystonia is there and can be triggered by movements that I used to associate with it. For myself, I believe the dystonia was manufactured, partly, by my determination to follow instructions to the letter. It's possible that my strong belief in the instruction blocked me from feeling free to experiment, but I am still not sure I eould have come up with solutions on my own. A big piece of the puzzle was my discovery of my ulna and the bone/bone connection it has with tge humorus. This led me to exploring a more tilted (5th finger side) position of the hand and arm. Earlier in my training, I had been told to do just the opposite--palm parallel yo tge floor. I wonder how many students have difficulty due to not knowing how to project weight into the keys.
rbcmh That's very much an issue for me as well! I was more occupied with doing what my teacher said (much of what was incorrect), than respecting what felt comfortable for me. Since finding a teacher who can hear tension and has amazing technique, I spend time on working out the right angle and feeling, rather than just pursuing a sound.
My best wishes to you for your endeavors!
I took a few lessons but am mostly self taught and I developed dystonia. I’ve had it since 2004 in my left fretting hand. I also developed it in college in the mid-80s but that miraculously cleared up after a couple years. I was dystonia free for about 20 years when it came back, same hand but different manifestation (no curling this time).
Thank you for sharing. This was very helpful.
Hi! I have a question : how did you start again playing piano? Did you have a break or did you make any special exercises with your instrument?
Thanks for the healing words!!
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.
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.
You are amazing, thank you for this explanation!
Thanks!
I am a guitarist...I have it in my pinky finger on my fretboard hand, it is so frustrating.
Love it. Thank you for your help.
Very useful video. Nicely explained.
Your video is very encouraging. How long did it take you to fully recover and how long did you train every day? Thanks a lot.
Thank you. Made a video about that specific question. ruclips.net/video/b0XsxR5Cyi8/видео.html
I am also facing this while writing
When retraining did you start by only playing easier pieces or did you retrain playing difficult pieces, just focusing on playing with a softer touch?
Hello,
I am contacting from DMRFC (Dystonia Medical Research Foundation Canada) based in Canada. The mission of the DMRFC is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.
Currently, we have about 2-4 videos of individuals suffering from dystonia under 'patient stories' on our channel. If we have your permission, we would like to repost your video on our RUclips channel.
We are sorry that you have to go through the pain! The Dystonia Foundation is doing the best they can to build more awareness about the disorder, and your video can definitely help them.
Thank you for your time
Regards,
DMRF Canada
This is excellent. Thank you. Very generous sharing.
I am experiencing my index fingers locking in a curl at different times. I have some pain on the index fingers (both hands) when curling my hands into a fist
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
SMART TRICK- THANKS
I have problems putting my hand on the record on the turntable :(
Good video!
Hi the mindful pianist and to everyone!
I’m a violinist with focal ya to ja since three years now and working on it.
Does anyone of you tried a treatment with botulinium toxin??
Thank you.
I've actually have 3 rounds of botox injections in my earlier days. It didn't contribute to my retraining or recovery, though I think it did make my symptoms a bit milder.
@@themindfulpianist8606 oh God just watching this again and seeing that I didn’t answer you, I’m so sorry. RUclips is truly not my social media. But thank you for your answer. I recently tried Botox and it helps but just in a super partial way, I mean nothing relevant. Anyway, in general during this two years my performance is been increasing, so I feel myself like at 65% of my skills. I trust in a full recovery and your witness give me hope to achieve that. Thank you so much for that!
Very thoughtful. Thank you!
Really Helpful...ThanKs
有難うございました、助かりましたねえ
Il mio nome è Pietro Ricchiuti, sono un chitarrista professionista e sono affetto da distonia alla mano destra. Vorrei poter comunicare con lei perchè il suo video è molto interessante ma non so esprimermi con la lingua inglese. Le sarei infinitamente grato se potesse aiutarmi....La ringrazio e le auguro ogni bene!
I found this frustrating; need a hell of a lot more detail.
Amaziing
13 years. Wow! That's a long time. I have to be honest, I have heard much more positive stories.
Me too!
Hello. Could you please share how long it took you to recover fully enough to resume performing? Thanks.
It's really hard to say, because it probably took me 10 years to full recover but I performed 'somewhat okay' for a much long time before that. I'd say it took me 3 years to resume to performing 'okay' and 10 years to recover to the point that I could play everything I wanted again. Knowing what I know today, I think I could have done it MUCH faster.
なるほど。
Taubman approach
Medical Marijuana cured a lot of pianists....
hello, don´t speak spanish?
I don't think you ever really had focal dystonia - or maybe you had the mildest form. The ease with which you are opening your right hand is proof of this. I know someone with focal dystonia, and he can only open the first three digits of his right hand comfortably. The only way he can open his hand completely is to stick his third and fourth fingers together, but then the second finger drops a bit. As soon as he moves the fourth finger away from the third, it begins to drop, taking the fifth along with it.
This person is a pianist and his condition is not task specific. He can barely do easy tasks like shaking hands, waving, clapping, or washing his face. He tried Botox, but his hand eventually got used to this medication. Playing Romantic works on the piano, works that require any kind of a stretch (octaves, chords, etc...) is now impossible. And so are early period works such as Bach and Mozart, as the fourth finger wants to constantly press into the keys.
When he raises his hand from the keys the fourth finger drops and the third sticks out. He has tried everything, and is now only relying on very slow practice with no improvement. There is no cure for acute focal dystonia - at least not yet.
Hi, we don't care what you think... seriously, it's not because your friend case is worst and/or not similar that your friend IS what every focal dystonia case is about. Google search 5 min, you'll realize there's as much variation in dystonia types as there's a-hole on the earth. Then, degree may vary, a lot! I've been told I had the issue few month ago by a hand surgeon after a bone break (not that it's the direct cause, but it was noticed by her at that time and it might be due to nerve damages), at first, I just thought "argh, ok, some muscles do their own life, I'll be able to get over it", and it didn't got much far. (I already have a paralyzed left hand pinky, not like it was the first time for me) Since, it kind of got visible and I have the feeling of my right hand sometimes feeling "numb", quick arpegios I could play before are now... less than optimal, but I thought first it was just due to the bone break and still needed a bit of time to get everything back up and ready. I was wrong. But I'm sure you'll be there too to undiagnose rando's on the web... Anyways, don't judge people like that, what is the point of your comment? talk about your friend? Then, just cut the part where you deny others based on your 2 cent personal experience of people you know. Also, there's no cure, but tons of people find solutions for them and share it, for instance, a session bassist who use gloves, without them, his hand shake like a earthquake, with them, the hand is stable, but I'm sure you'll be there to un-diagnose him. There's tons or people explaining how they could recover/reduce symptoms/be able to play again by "re-learning", but I guess those are just lies, problem is, most of them don't sell anything, so what would be the point of having that much people "faking getting through it" ? It's sad for your friend, he's definitively not lucky, but mind your own business.
tldr: stfu doc ^^
This is caused by bad technique