Focal Dystonia - Interview with Neurologist Professor Eckart Altenmüller

[@fargofarawaywewillgo2933]

Tanks a lot for this ITW David. it gives some kind of hope and other ways to explore. My left hand dystonia (i'm a guitar player - mostly rock and blues electric guitar) has "settled" in a year and a half before i couldn't play anymore. it was 5 years ago . Hypnosis did help me a lot to play again, simple chords professions and after 2 years, a few licks. i'm now focusing on singing while playing chords. i won't give up trying to feel again the joy of jamming around with my buddies on a good blues or rock song. Again thank you for sharing this. I'll talk about the trioxi-thing you've mentioned to my neurologist. Cheers. Matt

[@annemariefrank]

Thank you so much, this i brilliant! And greets to Prof. Altenmüller, one of the kindest, realistic and most intelligent experts I've ever been able to meet! Sharing widely to spread the info.

[@feliciadesanctis1620]

Thanks for posting this interview. If focal dystonia is a neurological problem, I cannot explain why my right hand was unable to even just rest on the strings of my guitar for three months last year. To me that is a clear emotional reaction of fear. (I could rest the hand everywhere else on the guitar.) I believe that in my focal dystonia, which I’ve had for 9 years, the emotional component is impeding normal playing. My hand behaves normally away from the instrument. Even if the root of the problem is neurological, it cannot account for all the crazy movements I witness on the guitar. The solution to playing again is probably psychological. PS I spent about 45 minutes each day for three months last year trying to increase the amount of time the hand was able to rest on the strings. I searched for calm. Now I can at least rest it on the strings. Maybe that indicates the path.

[@chiragraju821]

It’s not just neurological, it seems to start off neurologically and later involves obsessive compulsive circuits as well. So, your problem is because of the fear caused grained in your head, that you can not hit the right notes.

[@SteveGilson]

Thanks David, that was a very useful interview!

[@wylum22]

Thank you very much for doing this interview!

[@cynefinmusic]

Super useful conversation. I wish the neurologist who diagnosed me had known this. What do you make of Ruth Chiles' work?

[@ChristopherClarkeGuitarist]

A fascinating interview. Many years ago, I was an aspiring classical guitarist but I haven't been able to play since developing focal dystonia. I had participated in and won one competition and was practicing Etude No. 1 by Villa Lobos for another and trying to compensate for my ring finger's relative weakness in that piece's repetitive arpeggio. Given this, I was probably under stress as Professor Altenmüller mentions. As an aside, I think the Etude's particular right hand fingering pattern was a contributory factor to my developing focal dystonia. Although the disparity in strength between digits is anatomical, I was trying to achieve the same tone in the weaker finger and within minutes, it began curling into the palm of my hand and subsequently began affecting me in daily life. The condition in my case would therefore better be described as dystonic cramp. At the time, one specialist suggested I subconsciously didn't want to perform and attributed the symptoms to a psychological response. Another specialist suggested I try relearning the instrument left-handed. Hypnosis, carpal tunnel injections, Alexander Technique, acupuncture etc were all explored, although I recall opting not to receive the neurotoxic protein, Botulinum. Understanding of the symptoms of focal dystonia have moved on significantly and I'd be keen to explore the latest treatments here in Australia, not with the objective of playing the guitar again but to alleviate the ongoing arm and shoulder pain.

[@DavidBuckingham-Guitarist]

Hi Christopher, thanks for sharing your experience. It sounds like quite a typical case. So your shoulder pain is from the unwanted movements in everyday life? Or, as Prof. Altenmüller calls it "dystonic cramp". The botox simply paralyses the muscle, so it should stop the muscle from doing the movement that you don't want it to do, but it will affect every movement you make with this muscle. Leon Fleisher had the very same problem - his ring finger would curl into the palm of his hand to the point where he found it difficult to wash his face. He found that rolfing, a form of deep tissue massage helped with this. He also took botulinum toxin injections which helped him to play again. Something I would recommend, which has helped me and others avoid the involuntary movements away from the instruments is to use the fingers in a dexterous way away from the instrument, for example paying the piano or another instrument. I think the important thing here though is to only do this in a way that doesn't trigger the dystonia, otherwise the probability is that you'll make it worse.

[@ChristopherClarkeGuitarist]

@@DavidBuckingham-Guitarist My shoulder pain/fatigue is a result of everyday use because it's as though every muscle is employed for tasks ordinarily requiring very few. Even typing with my right hand triggers the issue along with playing the piano and other non-guitar specific movements. Yes, I read with interest and sadness about Leon Fleisher and empathised with the issues he encountered. In the early days, prior to the Internet, I started wrapping tape around my fingers and used a mirror to alter the stimulus to my brain so it was interesting to hear that I was on the right track, albeit in a rudimentary and experimental way. I found that I could make promising advances only for the relearning of the movements to revert to its dysfunctional state and I'd essentially be back to where I started soon after. After years sitting alone and trying to fix the problem, I eventually resigned myself to never playing again. Now, I regret the non-productive years and wish I'd devoted my time to another creative outlet. Later, I did play some plectrum guitar but the movement issue also became apparent in my limited right hand fine control.

[@gspotjazz]

if everyone can recover, I wonder why Gary Graffman, Leon Fleischer, and Keith Emerson never fully recovered. I emailed Dr. Altenmuller about ten years ago and he wrote back that "Few people recover." I wonder what might have changed his mind (if he did). Maybe things have changed a lot in the last ten years.

[@DavidBuckingham-Guitarist]

A very valid point. Leon Fleisher did improve enough to perform again, though it is clear that he was working around the problem somewhat. Prof. Altenmüller distinguishes between levels of dystonia and says that Fleisher had severe dystonia ( I think many of his attempts to cure himself reinforced the dystonia). Dr. Rossett at Instututart in Barcelona believes that dystonia cannot be measured in terms of severity or levity. His system treats all manifestations the same. Rossett believes that most of the techniques used by Altenmüller's patients are training the frontal cortex to overpower the dystonia which is a problem in the back part of the brain which stores automated motor skills. He says that there is a small chance that the brain will then transfer these forced movements to the back part of the brain as automated movements. He cites one patient who did this, relearning from scratch, and that it took him severn years to do so. My personal experience does not square with this as on several occasions I have been able to play with no dystonia at all. It has then returned the following day, so only temporal improvement but I was not overpowering the dystonia in those moments, I had somehow gained access to the neurological pathways. Prof. Altenmüller insists that these are still there, the pathways still exist and it is a matter of accessing them. He does not give specific exercises as he believes that every patient experiences the condition in a different way and that the path of recovery has to come from the patient himself/herself. I improved rapidly with Prof. Altenmüller's combination of botox and trihexyphenidyl and was playing at 80% capacity within a month. Then I plateaued however and then deteriorated again. After two years of this treatment I can play to around 80% capacity again with regular injections, Trihexyphenidyl and a lot of daily practice. Picking up a guitar and playing off the cuff is out of the question, I have to warm up for an hour. I feel this is untenable however, as the side effects of Trihexyphenidyl are quite unpleasant and so much daily practice is not good for the hands physically. I am currently trying Dr. Rossett's treatment. This is a lot more dogmatic and I was not as convinced by his analysis of dystonia, BUT... I have a friend who completely cured his dystonia with this course of treatment. I also know another patient who has been following the treatment for three years and said he has definitely seen improvements but they are relatively small and the amount of work he has put in has been huge. Dr. Rossett says that the time it takes too cure dystonia with his method can differ: he cites a patient who did it in ten months whilst for others it ca take several years. I would like to do a similar interview with Dr. Rossett so as to show two distinct approaches from leading specialists in the field.

[@gspotjazz]

@@DavidBuckingham-Guitarist Thanks for your detailed response, as well as your great interview of Dr. Altenmuller. My dystonia is much more in line with Leon Fleischer's as a dystonic cramp rather than a context driven focal dystonia. It shows up everywhere as a continuous contraction, such as typing, and other tasks where I am using my right hand. When it began, the cramp was so bad, the inner tips of my fourth and fifth fingers made contact with my palm when my hand hung loosely. After ten years of tedious, difficult work, my improvement has been tremendous, but not 100%. I do find trihexyphenidyl helpful, even at very small doses. I'm lucky as I've never had any side effects at all; zero. I have heard that others have a real problem with it. Currently I'm taking one 2mg tablet a day as it makes the practice in the morning go fairly smoothly. I have developed my own approach and routine, as the doctor mentioned, which changes as my condition improves. I did try Botox twice; it helped a little, but I decided to forego it as I believe I can get to where I want to be without it. I haven't heard of Dr.Rossett's approach, and it would be great to hear about his approach. I'll look forward to hearing an interview if you do one.

[@gspotjazz]

@@DavidBuckingham-Guitarist By the way, I call musician's dystonia a "dispositional" disorder. As was the case with me, it was the "state" that I held my hand in, as well as the "state" in which my body was held. Rather than "forcing" my hand to wend its way around the keyboard, I simply let it go so it could find its own way around the keyboard without my conscious interference. Learning to relax was a big part of this. I never knew how much tension I brought to my hand until this nightmare forced me to figure it out and come to this conclusion.

[@peterschmidtcello]

@@DavidBuckingham-Guitarist Please try it, I have been doing the treatment in Terrassa, Barcelona with the Institut de l'Art for the past 14 months and am almost symptomless, confident that it's just a matter of weeks. As you say, they don't believe there is a difference in probability of recovery according to severity of the symptoms or a correlation with the duration until full recovery.

[@DavidBuckingham-Guitarist]

@@gspotjazz That's fantastic that you don't get side effects from

[@ralphmiller2265]

For me, my dystonia manifests when I play my piano AND when I work with a computer keyboard.

[@DavidBuckingham-Guitarist]

This is quite common, which goes against the notion that FD is "task specific". Eckart talks about dystonic cramp causing the hand to be affected away from the instrument, but in my experience there is a dystonic trigger. If you want to cute your dystonia then one school if thought would be to avoid that dystonic trigger at all costs (which is different than fighting against it). Perhaps holding a pen while you type, or changing the fingers you type with.

[@lidio7b]

Thank you very much for the video... How is your dystonia currently?

[@kostaspapoutsis935]

Playing piano at this level is more demanding than running. That explains 120 heartbeats.

[@Darkrye324]

Very interesting to hear. I learned this only now after hearing that victor wooten’s got it.

[@DavidBuckingham-Guitarist]

Victor who?

[@Darkrye324]

@@DavidBuckingham-Guitarist Wooten sorry I meant to out the last name there

[@Darkrye324]

Mentioned it in an interview with Rick Beato

[@DavidBuckingham-Guitarist]

@@Darkrye324 Ah yes, I saw an interview he did with the specialist Ruth Chiles: kzbin.info/www/bejne/g37agJ2PZqmBgZo Such a shame. He is apparently suffering with FD in both hands which is quite unusual. I wish him well.

[@Darkrye324]

@@DavidBuckingham-Guitarist thanks I’ll take a look.

[@banjorino]

❤️🙏🏽

[@simontai1]

Can Focal Dystonia actually be a symptom of Tension Myositis Syndrome?

[@wimkrol2233]

Yes I’m sure of that. I have both. TMS (chronic pains) ánd focal dystonia (embouchure). The similarities are amazing.

[@simontai1]

I had symptoms also in the embouchure for 25 years. I recently came out of it by watching the KZbin channel “ Pain Free You” and joining the group meetings over Zoom. It is all based on fear and protection by the brain. Mindset and keeping the mind-body calm and safe are key.

[@wimkrol2233]

@@simontai1 Yes I know. I watch the videos of Dan Buglio on a daily basis. He is worth gold! Thank you for sharing and I’m very happy for you! Well done. There’s hope. I always thought focal dystonia is incurable.

[@DjangobeatTV]

Late Onset Focal Dystonia is a byproduct of psychological trauma in those that have not experienced repeated head trauma.

[@DavidBuckingham-Guitarist]

Thank you for your comment. Are there any articles on this that you can refer to?

[@DjangobeatTV]

@@DavidBuckingham-Guitarist I don't know about specific research because that would be quite an endeavour to put into a comment section. However, you could look into @Ruth Chiles book "The Focal Dystonia Cure". She used Brainspotting to cure herself and has some great explanations as to why that process worked. She has a lot of success with her clients in overcoming their conditions entirely and I'm now trained as a Brainspotting therapist myself and I'm almost cured too and have it in my fret hand. You can checkout my youtube channel to see some progress vids if you like. It's a lot to do with polyvagal theory and how a traumatized nervous system inhibits fine motor control at the level of the deep brain. Enjoy your journey and stay in touch!!!

[@ubershredder1989]

At its heart, FD actually is an Emotional issue. Sure, someone who has had dystonia for a considerable amount of time will show different brain circuitry than someone who doesn't have FD. However, this plastic change in brain circuitry, is not the cause, but the symptom of a problem that is rooted in psychology. Dystonia is much like drug addiction. The main cause of drug addiction is FEAR and always is. Lets take a strong drug like heroin for example. The addict is driven to have his next dose because of the illusory FEAR that they will be miserable if they don't get their next dose, and wont enjoy life as much. The second, lesser component of drug addiction is the actual physical effect of addiction. Sure the withdrawal is savage from heroin, but an average heroin addict will go by everyday risking his life from overdose, intravenous disease, poverty, caridacrrest, etc, and not give a damn about any of that. In light of this, it is never a real excuse if an addict says he is scared to quit because of the miserable withdrawal. Cold turkey and heavy sweats are nothing compared to what he is risking every day. Hence the psychical aspect is a complete red herring. Same with dystonia. The fear is the real problem. The physical aspect is a red herring.

[@DavidBuckingham-Guitarist]

This myth is dealt with in the video as I ask Prof. Altenmüller about popular misconceptions relating to focal dystonia.

[@ubershredder1989]

@@DavidBuckingham-Guitarist thanks for the reply, could you pinpoint the time stamp plz

[@azuoccu]

No. And addiction is chemical.