More Helpful Links

I collected even more links that I've been reading through. Some of them I still have to finish! This also marks my 36th post (I believe?) in 2013. It is an odd coincidence that I also posted a total of 36 post in 2012. I definitely did not intend to do that! So here's to another year of my ongoing blog over embouchure dystonia!!!! I can't believe I've written that much and recorded so many videos. I am so happy though knowing that my blog helps others realize they're not as alone as they think they are with this disorder. I've received support messages, and also love to hear about other people's experiences with the disorder and how they cope as well. It's always interesting to find similarities in things that help, but also to see the differences in observations from one person's personal journey to another. Here are the links!

Research and treatment of Musician Movement Disorders at Hannover Music University.

 Lee Andre: http://dystonia-europe.org/wp-content/uploads/2013/08/AndreLeeEdinburgh13_EAAbstract-1.pdf

Rehabilitation of musician's dystonia through retraining. de Lisle, R:

 https://researchspace.auckland.ac.nz/handle/2292/18690

The musician’s brain as a model of neuroplasticity.

 Thomas F. Münte, Eckart Altenmüller and Lutz Jäncke:

 http://homepages.inf.ed.ac.uk/pseries/CCN09/brainmusicians_nrn.pdf

 Dystonia: Etiology, Clinical Features, and Treatment

 edited by Mitchell F. Brin, Cynthia Comella, Joseph Jankovic:

 http://books.google.com/books?id=bMKypn_B0tIC&pg=PA58&lpg=PA58&dq=musician's+dystonia+conference&source=bl&ots=NRJwKrQUvK&sig=56cTp0oQQeJk6fACFQ0hR2rK0ys&hl=en&sa=X&ei=rVzAUq3NNoOgyAGNwoH4Cw&ved=0CCsQ6AEwADge#v=onepage&q=musician's%20dystonia%20conference&f=false

  

Neurological Rehabilitation

 edited by Darcy Ann Umphred, Rolando T. Lazaro, Margaret Roller, Gordon Burton:

 http://books.google.com/books?id=lVJPAQAAQBAJ&pg=PA630-IA10&lpg=PA630-IA10&dq=musician's+dystonia+conference&source=bl&ots=YRhunsGjzW&sig=jazGWjwZYhoEfv5yo-FbqvxJzJo&hl=en&sa=X&ei=pVjAUoi-DsKVygHq3oHYCw&ved=0CHMQ6AEwBjgK#v=onepage&q=musician's%20dystonia%20conference&f=false

Acquisition and Loss of Skilled Movement in Musicians. Frank R. Wilson:

 http://handoc.com/Documents/Acquisition_Loss_Skilled_Movement_dist.pdf

The Musician's Hand: A Clinical Guide.

 edited by Ian Winspur, Christopher B Wynn Parry:

http://books.google.com/books?id=L9g1BEewqJkC&pg=PA6&lpg=PA6&dq=musician's+dystonia+conference&source=bl&ots=JG6wikt-4W&sig=aKnFAIbCmXcLqieqUtFq-fIVHq0&hl=en&sa=X&ei=B13AUtrSFJTOyAGzu4DgCw&ved=0CD0Q6AEwAjgo#v=onepage&q=musician's%20dystonia%20conference&f=false

Rehabilitation of the Hand and Upper Extremity, 2-Volume Set: Expert Consult.

 By Terri M. Skirven, A. Lee Osterman, Jane Fedorczyk, Peter C. Amadio:

http://books.google.com/books?id=wMJrX4AB80IC&pg=RA7-PT8734&lpg=RA7-PT8734&dq=musician's+dystonia+conference&source=bl&ots=cuRT3lQ7E4&sig=qxkvIDJ8muDM4oiisBqdWMYMEkY&hl=en&sa=X&ei=pVjAUoi-DsKVygHq3oHYCw&ved=0CGMQ6AEwBDgK#v=onepage&q=musician's%20dystonia%20conference&f=false

Treatment of Musician’s Dystonia with the Use of Ultrasound-Guided Injection of Botox: An Interesting Case Report. Rajat Goel:

http://www.omicsonline.org/scientific-reports/srep220.php

Dysfunctional neural activity linked to musician’s dystonia. Danny Rose: http://www.medicalobserver.com.au/news/dysfunctional-neural-activity-linked-to-musicians-dystonia

The pathophysiological basis of dystonias. Xandra O. Breakefield, Anne J. Blood, Yuqing Li, Mark Hallett, Phyllis I. Hanson, and David G. Standaert:
https://fysio.dk/Upload/KursUdd/Kursusmateriale/Tema%20tonus,%20bev%C3%A6gelse,%20b%C3%B8rn/HS%20-%20Breakfield%20Pathophysiology%20of%20Dystonia.pdf

Focal hand dystonia – a disorder of neuroplasticity? Joseph Classen:

http://brain.oxfordjournals.org/content/126/12/2571.full

What is Dystonia? Contributed by Prof. Alberto Albanese, MD

Professor of Neurology Istituto Neurologico C. Besta Milano, Italy:

http://www.movementdisorders.org/disorders/dystonia.php

Understanding a Career Killer: Focal Dystonia. Brian Wise:

http://www.wqxr.org/#!/story/188002-understanding-career-killer-focal-dystonia/

The Performing Arts Clinic of Brigham:

http://www.brighamandwomens.org/Departments_and_Services/neurology/Patient/PerfArts.aspx

CC Grand Rounds: (1) Musician's Dystonia: When the Music Stops. (Video)

http://videocast.nih.gov/summary.asp?file=18165

Music on the brain. Philip: http//www.nature.com/news/2010/101005/full/news.2010.510.html

Acupuncture Update and Observations!

So far things have been going great, and I have a lot to say. Acupuncture has left me with some interesting experiences and observations!

The first meeting I had I played my horn for my acupuncturist, and (forgive me for forgetting the correct terminology) she said the type of movement in my face is sometimes referred to as windy or winding or wind. She also noticed how the right side of my face is more tense than my left. My muscles on the right side were especially tight around my jaw and pulling my lower lip muscle to the side. She said it's probably been effecting part of my playing too. I couldn't agree more! I explained how that lower lip was causing me a lot of problems, especially in my mid-to-low range my lip quivers or spasms, but had gotten better over time with re-training.

Anywhoo, the first session we did some cupping along my back. She said I must have a lot of tension in my right shoulder because it turned bright red almost immediately and it hurt. But after she was done it felt good! Then I had a light acupuncture session, had some facial massage, and a pain-relieving type of medication applied to my face. I was instructed that I am only allowed to play 15 minutes once a week, and to ice-pack/heat-pack afterwards, along with stretches and massage.

However, the rest of the following week after my first session I had the most intense pain in my face accompanied by a headache...even though the first session was light. It lasted a couple days and I had to massage my face a lot, put on the pain relief medicine along with heat-packing/ice-packing as instructed. I felt like there was a nerve on the inside of my cheeks pulsating. It wasn't TMJ either like some people think because I've had a dentist confirm that it is not the source of my problems.

When I went in the first time the slight dullness was there in my cheek (near the buccinator muscles) and in my upper lip. But after the session ended it had moved further back near my ear, and on the top of my cheek bone, but instead of feeling dullness, I felt a soreness that developed into that intense pain. I put the pictures below showing where the soreness and sometimes throbbing felt the most intense and how it moved to different areas after every session. The remaining sessions down the road where not nearly as painful, and I felt more like soreness accompanied by blood trying to flow through my face, yet some areas it felt good and the other areas it just felt sore. I found it interesting that after the pain receded, there was much improvement in the feeling of my face and gradual physical appearances/changes.

The black circles represent the specific points where I felt soreness or a blockage before or after the sessions.

Before session one: dullness in cheek area, upper lip, and a ton of tension the chin.

1(A)

After session 1: Intense pain in the areas with the black circles, and a headache in the green area. Eventually all went away and the soreness remained in less areas as in the next after this one.

1(B)

After session 2: Soreness moved to near front of ear and behind ear.

2

After session 3: Soreness moved to side of chin/jaw closest to chin, and chin area only.

3

After session 4: Soreness moved to almost all of the right side of upper lip...especially near the base or bottom of the nose where the lip and nose meet, and also soreness along the lines that appear when you smile that run from the lip to the corners of the nose and along the nose.

4

After session 5: This was interesting because during the session it was the first time we used the electric currents/stimulation on my face. Soreness afterwards primarily existed in the whole muscle area on the underside of my chin or jaw and ran all the way down the muscles on the front of my neck, and also along the left side/back side of my neck. There was slight soreness in the muscles on my forehead....but I didn't have a headache or anything. Then very slight soreness in the side of my cheek but this time a much smaller area and on-off again.

5

It was during this previous session that my acupuncturist also brought up the noticeable difference or position of my lower lip when I spoke. It looked less abnormal. She said it looked like my right side wasn't pulling that muscle back as much as it was before. I was shocked that she said this because this is one the things my family members and friends noticed about me in the past; that my lower lip was positioned abnormally when I spoke ...which I had at the time thought it was just due to aging. I told her that I too noticed a change in my chin area, and in my speech too. It was easier for my jaw to move, and I felt a letting-go of tension type of feeling going on in my face...but it's not all at once...it's as if the blood circulation is trying to break through all the channels and blockages, and some are opening up, and some still are resistant...and I think that's what's causing the soreness. There's areas of my face that feel like there's changes going on, like there is blood flow that wasn't as vital-life of a type of feeling as before.

Anywhoo, my next session is coming up this Tuesday on New Years Eve! I'm very excited!!! Despite other people worrying that any additional signs of pain to my face are not good, I can only say that the soreness has only been temporary, and I believe it is necessary when it comes to relieving tension. Sometimes relieving tension in the body is painful...I'm not saying it should be excruciating, but that I believe it is a vital step in the process of recovery, especially when after the soreness goes away, my face feels so much different and less tense than I have felt in a very long time. Even the symptoms of dystonia have lessened, and some symptoms act differently than they did before because the way my embouchure functions or the way the muscles function has changed.

Finding Strength

I refuse to believe there is no possibility or chance of overcoming embouchure dystonia. There is nothing that can waiver my willpower, determination, and patience. No one can stand in my way. I know without a doubt that something once so natural cannot be lost forever when my muscles still possess natural abilities outside of playing. It is a paradoxical mystery as to why only very specific movements trigger it, yet the muscles can still function naturally when at rest. There is a way to return function or eliminate the triggers.

I don't know how I know, but I know THERE IS a way to reverse it. I know it in my gut and soul that this observation of contradictory therein lies an answer hidden somewhere, and that's what gives me strength. It's ultimate faith that what is considered impossible is possible due to that extra space of grey area and a question mark lingering.

I refuse to believe the only thing that exists is a dead end with no hope when the answer is at the tip of ones tongue constantly, and hints at the possibility of freedom from the disorder through glimpses or moments of normalcy after so much hard work and effort accomplished.

Most people who are diagnosed with FTSHD (Hand Dystonia) or FTSED (Embouchure Dystonia) ask, "How could my abilities degrade to such a state when I use to be able to play so naturally with ease and nothing wrong?"  when the question should be, "Why should I believe my dystonia is irreversible when normal function still exists in my muscles outside of playing?" Not all is lost when muscle function still exists.

If the possibility of all muscle function is to be completely thrown out the window into the realm of never returning, then I would not be able to use all of my muscle capabilities in my face; I would not be able to eat, not be able to speak, not be able to form a natural smile, not be able to whistle, not be able to do other related tasks or parallel motions. Yet, I still can perform other tasks with the muscles and movement in my face...so why is it not possible to restore function when it comes to horn playing? As long as there is that grey area, as long as my muscles function normally outside of playing, not all is lost...there has to be...there MUST be...there IS a way of restoring normalcy. I just know it! I refuse to let my strength and faith waiver!!

If Musician's Dystonia Were Treated Like A Mental Illness.....Oh Wait...It Already Is.

This little short comic jokes about what it would be like if a physical illness or trauma were treated like a mental illness. This reminded me of how dystonia is often treated like a mental illness or something ridiculous. 

Thank you to http://imgur.com/CWFTYoV for this awesome comic! :)

More Useful Links on Musician's Dystonia and Other Related Interests

There's not enough room on the side of my blog page, so I'm going to start grouping links into separate blogs titled: Links Of Interest / More Helpful Links.




Sensory Mapping of Lip Representation in Brass Musicians with Embouchure Dystonia. By Hirata, Schulz, Altenmuller, Elbert, and Pantev. (PDF)
http://www.immm.hmtm-hannover.de/uploads/media/Hirata_et_al.__2004__Sensory_mapping_of_lip_representation_in_brass.pdf

The Challenge of Diagnosing Hand Dystonia. By J. Rosset-Llobet (PDF)
http://www.tmslab.org/publications/066.pdf

Leon Fleisher: Two Hands (video)
http://vimeo.com/6684412

Sex Prevalence of Focal Dystonia (PDF)
http://jnnp.bmj.com/content/60/2/204.full.pdf

Trigger Points Focal Dystonia (book excerpt)
http://books.google.com.mx/books?id=FrEmzwNOG_IC&pg=PA168&lpg=PA168&dq=trigger+points+focal+dystonia&source=bl&ots=BRrzto52bF&sig=w3Q2uNSTttU_Gl2ImB1uNr0pRso&hl=es-419&sa=X&ei=ooWwUMbCEoLm2QWpjoFo&ved=0CC4Q6AEwAA#v=onepage&q=trigger%20points%20focal%20dystonia&f=false

Joseph Meidt Xray Movie of Trumpet and Horn Player Embouchure.
http://www.youtube.com/watch?v=tpOwuAMqFTA

Dystonia.org.uk - another good review of what musician's dystonia is.
http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/focal-hand-dystonia/musicians-dystonia-musicians-cramp

Another site that explains Musician's Dystonia well.
http://www.fcart.org/distonia/english/
Axial Musculature
http://quizlet.com/4040527/axial-musculature-flash-cards/

Gray's Anatomy
http://prohealthsys.com/site/anatomy/grays-anatomy/

What Are Lips For?
http://www.theatlantic.com/daily-dish/archive/2008/02/what-are-lips-for/220420/
On Traumatic Injuries to the Lip and/or Tongue.
http://www.simplestepsdental.com/SS/ihtSS/r.==/st.32219/t.32774/pr.3.html

About Peripheral Nerve Damage.
http://en.wikipedia.org/wiki/Peripheral_nerve_injury#Types_of_Nerve_Damage

About Hemifacial Spasm. By Dr. Azizzadeh.
http://www.facialparalysisinstitute.com/31/hemifacial_spasm.html
About Different Types Of Muscle Strains
http://www.momsteam.com/sports/track-field/safety/muscle-tendon-strains-types-classification-treatment
About TMJ Upper/Lower Splints.
http://www.healthboards.com/boards/tmj-disorder-temporomandibular-joint/903582-lower-splint-vs-upper-splint.html

Fibromyalgia Solved: A pathology, not in the mind. By Paul Montjoy. 
http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/#.Up6IWhIGPgc.facebook

What Your Doctor Will NOT Tell You About Fibromyalgia. By Dr. Paul St. Amand.
http://www.amazon.com/What-Your-Doctor-About-Fibromyalgia/dp/B001Q3M66G

On Myofascial Pain: Ropes and Lumps in muscles.
http://forums.prohealth.com/forums/index.php?threads/lumps-and-rope-like-muscles.89081/

About Piano Performance-related Injuries and the Taubman Approach.
http://www.wellbalancedpianist.com/pianoinjury.htm
and ...http://www.wellbalancedpianist.com/dystoniatestimonials.htm

On Feldenkrais Movement Therapy.
http://openatm.org/

Jerald Harscher's website: The Poised Guitarist (Very helpful rehabilitator of guitarist with hand dystonia).
http://thepoisedguitarist.com/

Greg Fellow's YouTube Channel - Spasmodic Dysphonia (vocal chord dystonia)
http://www.youtube.com/user/GregFellowsSD

Billy McLaughlin (guitar) - Advocate for Musician Dystonia Awareness. Some information on his trials and tribulations with Hand Dystonia.
http://www.billymclaughlin.com/dystonia/

Steven Leung - Violinist Recovering from Dystonia
http://www.violinist.com/discussion/response.cfm?ID=9051

Paula Brusky, Ph.D - Advocate of Musician Injury Prevention, and Music and Medicine.
http://paulabrusky.com/about

On Schools of Music Psychology
http://musicpsychology.co.uk/studying-music-psychology/

Flutist Jen Cluff Talks about Embouchure Dystonia Observation of other Dystonia Flutist. (About a quarter ways down into the blog you'll see some neat observations)
http://jennifercluff.blogspot.com/2007/08/seeing-again-mcghee-cds-wye-nfa-lip.html

The Truth About Piano Lessons (To Parents of Piano Students). By Karen Berger
http://musicalresources.blogspot.com/2011/07/truth-about-piano-lessons.html

How It's Made: French Horn. (I just had to throw a fun one in here!)
https://www.youtube.com/watch?v=sTvYxP9tjQs&list=PLgkm6q2GGDItRpEUoPMnZAfn9XRT94E1Z