The experience of Dystonia and how massage therapy helps
An athlete, a movement disorder, and her experience with a massage therapist
By Don Quinn Dillon
Casey Kidson is an athlete with a movement disorder. In 2017 she competed in 34 races across Canada and the USA, including her first half-Iron distance Triathlon, and Marathon. In September 2019, she completed her first full Ironman. Kidson has a condition called Myoclonus Dystonia, which causes involuntary muscle contractions and twitches. “I experience some muscle pulling in my neck, lower back and occasionally muscle cramping in my legs, feet and hands.”
For Kidson, fine motor activities such as drinking from a cup, writing, balancing and carrying items are challenging. Holding position – like in a dental chair or medical visit, are difficult. Kidson admits, “riding my bike during races presents a challenge.”
The Dystonia Medical Research Foundation of Canada (DMRF) defines Dystonia as a movement disorder that causes the muscles to contract and spasm involuntarily. “The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures.” The site reports 13 forms of dystonia, and conditions such as Parkinson’s, Huntington’s and multiple sclerosis often present with dystonia as a secondary symptom.
Kidson is a spirited 31-year-old, born and raised in Kingston, Ontario. Her parents first noticed her symptoms at age 3, which progressed until her mid-teens where the symptoms stabilized in how they present today. Her symptoms improve with physical activity, so she changed her career from an Early Childhood Educator (ECE) to a full-time fitness instructor, instructing at six fitness facilities in Kingston.
Kidson has utilized a number of therapies – including massage therapy – to help her manage symptoms.
“With my muscles constantly contracting and working, they become very tight and fatigued. I have always leaned towards massage as my number one way to reduce my muscle fatigue and soreness.”
Kidson incorporates massage pre- and post-race. “My RMT is able to properly assist me in preparing my body for a race via stretches, relaxation, flexibility, improved range of motion and circulation.” Kidson acknowledges the effects of dystonia create stress on her body, and massage therapy helps reduce the strain. She describes a quicker recovery time from athletics, and has noticed a reduction in injuries.
THE RMT experience
Michaela Doolittle, RMT, of Mercury Massage Therapy in Kingston relays her early experiences in working with Kidson. Doolittle was “newish” at four years in practice when Kidson presented for massage therapy care, and needed to research and understand the effects of dystonia. It took a few sessions to orient. “I was concerned my massage was agitating her, given the involuntary muscle contractions. I wondered ‘am I using too much pressure? Is she uncomfortable?’” recalls Doolittle. Soon the pair developed familiarity and rapport which accelerated results of care. Doolittle confirms: “Working with someone with this unique condition may have been daunting, but maintaining clear and open communication with her was key in providing the best care.”
Doolittle has noticed progress. “Initially, involuntary movement was more pervasive and regular on the table, but this has diminished over time.” Doolittle has experimented with hot stones and other modalities for effect, and has shared Kidson’s care with other RMTs in Doolittle’s office. Doolittle shared that Kidson prefers deeper pressure to the legs and hips, more general pressure to the rest of the body.
Kidson has faced misconceptions regarding the involuntary movements. “[People ask] ‘Did I startle you?’ ‘Are you cold?’ Sometimes I get looks.” She continues, “Stress and anxiety can make symptoms worse. I remind my health practitioners when they say ‘just relax,’ it can aggravate my symptoms because I’m focusing on not moving when my muscles do the opposite.” She admits many people offer suggestions of panacea or modalities to try: For example, another healthcare professional at an event offered unsolicited advice as a result of witnessing Kidson’s involuntary movements and declared: “I can cure your dystonia.”
Empathy and understanding
Kidson appreciates practitioners who take time to educate themselves on dystonia, and approach her with helpful curiosity. “I like when practitioners say ‘tell me more’, and, ‘It’s OK if you need to move around or reposition’ which conveys empathy and understanding.” Kidson began a fundraising initiative called “DyFying Dystonia” through her athletic competitions to raise money for research, and bursaries to assist individuals experiencing dystonia.
The DMRF reports: “Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.”
Dystonia is a chronic disorder, but the majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The DMRF site is quick to point out, “Dystonia does not define who you are. People with all forms of dystonia have been able to become educated, work, remain independent and active, date and marry, enjoy children and family, and live productive fulfilled lives. Individuals may have to adjust activities and lifestyle to incorporate dystonia.”
Doolittle reminded me of the agency clients retain when they allow us to care for them. “Clients know their bodies very well. We need to work with them, not just on them.”
Areas of the body that can be affected by this disorder:
- Neck (cervical dystonia). Contractions cause your head to twist and turn to one side, or pull forward or backward, sometimes causing pain.
- Eyelids. Rapid blinking or involuntary spasms cause your eyes to close (blepharospasms) and make it difficult for you to see. Spasms usually aren’t painful but might increase when you’re in bright light, under stress or interacting with people. Your eyes might feel dry.
- Jaw or tongue (oromandibular dystonia). You might experience slurred speech, drooling, and difficulty chewing or swallowing. Oromandibular dystonia can be painful and often occurs in combination with cervical dystonia or blepharospasms.
- Voice box and vocal cords (spasmodic dystonia). You might have a tight or whispering voice.
- Hand and forearm. Some types of dystonia occur only while you do a repetitive activity, such as writing (writer’s dystonia) or playing a specific musical instrument (musician’s dystonia).
(Information courtesy of the Mayo Clinic)
Causes and complications of Dystonia
Causes: The exact cause of dystonia isn’t known. But it might involve altered nerve-cell communication in several regions of the brain. Some forms of dystonia are inherited.
Dystonia also can be a symptom of another disease or condition, including:
- Parkinson’s disease
- Huntington’s disease
- Wilson’s disease
- Traumatic brain injury
- Birth injury
- Brain tumor or certain disorders that develop in some people with cancer (paraneoplastic syndromes)
- Oxygen deprivation or carbon monoxide poisoning
- Infections, such as tuberculosis or encephalitis
- Reactions to certain medications or heavy metal poisoning
Complications: Depending on the type of dystonia, complications can include:
- Physical disabilities that affect your performance of daily activities or specific tasks
- Difficulty with vision that affects your eyelids
- Difficulty with jaw movement, swallowing or speech
- Pain and fatigue, due to constant contraction of your muscles
- Depression, anxiety and social withdrawal
(Information courtesy of the Mayo Clinic)
Donald Quinn Dillon, RMT, is a practitioner, speaker and practice coach. Check out his recent book, On Practice: From Entry-Level to Established Massage Therapist at DonDillon-RMT.com.