Athetosis

Living with athetosis often means the body keeps moving when you want it to be still. Your child may want to point at a picture, hold a cup or look at the person speaking, but the arm sweeps past, the fingers curl or the head turns away. It is tiring, frustrating and often misunderstood. At Revivo, our work with athetosis starts from one idea: control grows from a stable base. Intensive Suit Therapy gives the body that base while it practises.

What athetosis is

Athetosis describes slow, continuous, writhing movements that a person cannot control. The name comes from a Greek word meaning "without fixed position", which captures how hard it is to hold a posture. The movements are usually most noticeable in the hands, fingers, feet and toes, and can also affect the arms, legs, neck, face and tongue. Athetosis often appears alongside other involuntary movements: quicker, jerkier movements (together called choreoathetosis) or sustained twisting postures known as dystonia.

A few features set athetosis apart:

• Muscle tone often shifts, floppy one moment and tight the next.
• Movements usually increase with effort, excitement, stress or the intention to move, and settle during sleep.
• Holding the head and trunk steady is hard, which affects every skill built on top of them.
• Athetosis is a movement problem. It does not by itself reflect intelligence, and many people understand far more than they can easily show.

What causes athetosis

Athetosis is linked to the basal ganglia, structures deep in the brain that help start, stop and smooth out movement. When they are injured or develop differently, unwanted movement leaks through.

In children, athetosis is most often part of dyskinetic (athetoid) cerebral palsy. This type is commonly associated with a serious lack of oxygen around the time of birth, or with very severe newborn jaundice (kernicterus), both of which can affect the basal ganglia. Read more on our cerebral palsy page.

In adults, athetosis can follow a stroke or brain injury affecting these areas, and it can appear in some genetic, metabolic and degenerative conditions or as a side effect of certain medications. Because the causes vary so much, diagnosis by a neurologist or developmental paediatrician comes first.

How athetosis affects daily life

• Sitting and head control: staying upright, keeping the head centred and looking where you intend to look.
• Reaching and grasping: overshooting, trouble letting go of objects, and difficulty with buttons, utensils or a tablet.
• Speech and eating: involvement of the lips, tongue and jaw can affect speech clarity, chewing, swallowing and drooling.
• Walking and transfers: some people walk with an effortful, unsteady gait; others rely on a walker or wheelchair.
• Energy: constant extra movement burns energy, and some children find it hard to gain weight.

Good positioning also makes communication easier, whether through speech, signs or a communication device. Stability supports far more than movement.

How Revivo approaches athetosis

Most therapy for athetosis aims to help the person find stability and then use it. Intensive Suit Therapy fits this well because it supplies stability from the outside while the nervous system practises producing it from the inside.

What the suit adds

The suit is a soft vest, shorts, knee pads, shoe attachments and cap joined by elastic bungee cords, linking upper and lower body and left and right sides. For someone with athetosis, the cords provide gentle, constant resistance and feedback around the trunk and limbs. This may help damp some of the extra movement and make a centred posture easier to hold. Some families describe their child as steadier and more organized in the suit, although responses vary.

Building control piece by piece

In the Universal Exercise Unit, therapists can stabilize one part of the body and ask another to work, using pulleys and light weights to practise slow, graded movements: a controlled reach, holding the head up against light resistance, pushing through the legs. Breaking a movement into manageable pieces and repeating it gives the brain clearer practice than trying to manage the whole body at once. Dynamic work, such as stand-ups, parallel bars and suspended walking, then puts the pieces together.

Programs typically run 3–4 hours a day, five days a week, for 3–4 consecutive weeks. Each day opens with hot packs and deep-pressure massage, and the plan is customized after an assessment by specially trained physiotherapists.

Play video: A TheraSuit session at Revivo9:02

"He wasn't able to control the involuntary movements of his hands, or lift his head on his own or be able to sit without any support… now for the first time in a long time Zain has been able to sit on his own without any support for longer periods of time. He is better at controlling the direction of his hands."

Sadaf Mahmood, mother of Zain, 5 · Oshawa, ON

HBOT and other supports

Families may add Hyperbaric Oxygen Therapy, in which raised pressure lets more oxygen dissolve into the plasma and body fluids. Athetosis and dyskinetic CP are not among the 13 conditions Health Canada recognizes for HBOT, so Revivo offers it only as a complementary therapy alongside, never instead of, physiotherapy. Because the mouth and throat are often involved, speech-language pathology can be especially valuable, and massage and physiotherapy are available through our supporting therapies.

Goals families commonly work toward

We build from the centre outward. Progress varies widely, and after your assessment we will talk openly about which goals look realistic.

1. Head and trunk first

   Holding the head centred for longer and sitting with less support, giving the eyes and hands a steady platform.

2. Hands with direction

   Reaching toward a target with less overshoot, grasping and releasing more reliably, and bringing both hands to the middle.

3. Standing and stepping

   Bearing weight through aligned legs and practising stepping in the suit or at the parallel bars.

4. Everyday function

   Using new control for feeding, play, schoolwork, a communication device or helping with dressing.

Safety and suitability

The intake assessment, about an hour, covers medical history, seizures, hip health, heart and breathing, swallowing safety, weight and current medications. We may ask your physician for records or clearance. Some people with athetosis receive medication or other treatments from their neurologist; let us know about any changes so the program can be planned around them.

Frequently asked questions

Medical note: this page is general information, not medical advice. Every person is different and progress varies. Please involve your family physician or specialist when planning therapy. Hyperbaric oxygen is offered at Revivo as a complementary therapy; neurological conditions are not among the 13 HBOT indications currently recognized by Health Canada.