As you can see in the following recovery story from a musician with focal dystonia, curing Dystonia requires a strategic approach:
Mid-2019 I started to notice some strange sensations and uncontrolled movements in my right Hand during playing the Accordion. For example: when I played a note with one finger, the other fingers moved uncontrolled and reflex-like. It went harder to move from one finger to the other. The fingers moved reflex-like to play the notes “faster/earlier than they should”, etc.
I didn’t know what was happening and thought, the reason was lack of practice (although I practiced a lot). So I practiced more. More repetition. More aggressive practice.
The whole practicing approach was just wrong and made it just worse. It was emotionally exhaustive.
In January 2020 it got worse so that I had dystonic symptoms in the right hand all the time. While resting, walking, moving the hand, typing on the keyboard, etc. Playing an instrument was impossible.
After one year of doing dystonia therapies focused on remapping the brain, this patient shows clear improvements that can be seen in this video:
Dystonia, a complex neurological condition characterized by sustained muscle contractions leading to abnormal postures, challenges conventional definitions of illness and cure. Unlike simpler classifications, dystonia and its rehabilitation involve a nuanced journey towards restoring function progressively.
Understanding Dystonia Recovery
In medical textbooks, “recovery” signifies the process of reclaiming lost function and enhancing well-being after neurological injury or illness. The objective often revolves around returning to baseline functioning or optimizing outcomes.
Many people use the word recovery as a synonym of cure. Being cured is the opposite of being ill. This binary definition does not take into consideration the process of restoring function gradually and its possible stages. Dystonia cannot be understood in terms of being ill or being cured. This binary definition cannot be applied to Dystonia nor to dystonia rehabilitation. Recovery of function (reducing the deficit restoring proper brain balance) is what we are looking for.
After the onset of dystonia your life changes. What defines this change is the deficit that you present that was not happening before. Some people after the onset of dystonia loose 1% of their muscular control, others loose 60% of his of her motor control and at the same time, pain becomes constant, gait is affected and activities such as speaking, chewing or breathing are compromised. There is a huge range of possible degrees different patients can be affected, but what is always present is the deficit (proper function of your nervous system is not fully preserved). The Dystonia recovery timeline varies between individuals.
If you have lost 40% of your motor control and you recover 20%- you are recovering. If you had pain all day long and now you live pain-free, you are recovering. If you improve your range of motion or your speed by 5%- you are recovering function. When you recover 100% of your function and your deficit is zero, we can talk about full recovery. Recovery is a process, is not a static point in your life, once you recover function you need to stabilize the improvement and make the new balance state in your brain your new second nature. Exercise, relaxation, meditation, dance and other activities can restore proper function of your brain. Once that your brain gets closer to the state of balance prior to the onset of dystonia, the deficit will decrease and your quality of life will improve, better mobility, less pain more independence, less restriction in what you can do in your life.
Recovery in Dystonia: A Non-Binary Path
Recovery in dystonia isn’t binary; progress is marked by regaining function, even partially. Full recovery is when 100% of function is restored, but it’s an ongoing process. Activities like exercise, relaxation, and meditation contribute to brain function restoration.
Milestones in Recovery
Recovery milestones may necessitate months or years:
Reduced Muscle Tension: One of the early signs of progress is a reduction in muscle tension. This can lead to increased comfort and less discomfort in daily life.
Alleviated Pain: As dystonia recovery progresses, pain levels often decrease, improving overall quality of life.
Enhanced Mobility: Gaining better control over muscle movements can translate into improved mobility and flexibility.
Improved Motor Command: Recovery often involves retraining the nervous system, leading to better motor control and coordination.
Diminished Tremor Frequency: Tremors are a common symptom of dystonia, and their frequency often decreases with rehabilitation.
Functional Equilibrium: As recovery continues, individuals may experience both good and challenging days. This balance is a sign of progress.
A Stable State of Normalized Function: The ultimate goal of dystonia recovery is achieving a stable state of normalized function. While full recovery may not always be possible, significant improvement is attainable.
Start your Recovery Journey Today
Join the complete online recovery program for dystonia patients.
The Belief in a Dystonia Cure
Belief in recovery is motivating. Self-determination empowers individuals to define life objectives. Commitment to daily rehabilitation and visualization of a desired future are powerful tools. Embrace your journey with resolve and optimism.
In conclusion, dystonia recovery is a gradual neurological rehabilitation process that involves multiple milestones, each contributing to an improved quality of life. While full recovery may not always be achievable, the journey towards reclaiming lost function is marked by hope, determination, and the belief in a brighter future. With commitment and patience, individuals with dystonia can make significant progress on their path to recovery.
Dr. Joaquin Farias. Ph.D., M.S., M.A.
Director Dystonia Recovery program
Lecturer. University of Toronto
Boyce MJ, et al. Active exercise for individuals with cervical dystonia: a pilot randomized controlled trial. Clin Rehabil. 2013;27(3):226–235. [PubMed]
De Pauw J, et al. The effectiveness of physiotherapy for cervical dystonia: a systematic literature review. J Neurol. 2014;261(10):1857–1865. [PubMed]
Johansson BB. Brain plasticity in health and disease. Keio J Med. 2004 Dec;53(4):231-46. doi: 10.2302/kjm.53.231. PMID: 15647628. [PubMed]
Quartarone A, Ghilardi MF. Neuroplasticity in dystonia: Motor symptoms and beyond. Handb Clin Neurol. 2022;184:207-218. doi: 10.1016/B978-0-12-819410-2.00031-X. PMID: 35034735. [PubMed]
Smith MT, Baer GD. Achievement of simple mobility milestones after stroke. Arch Phys Med Rehabil. 1999 Apr;80(4):442-7. doi: 10.1016/s0003-9993(99)90283-6. PMID: 10206608. [PubMed]