Never heard of orthostatic tremor (OT)? Most physicians haven’t, let alone the general public. But for the small number of adults who develop OT around midlife, it’s very real, very life-limiting, and very, very hard to explain to others.
Patients with OT can walk quite well at a brisk pace. But if they slow down or stand still they feel that their legs no longer hold them up! It has been compared to riding a bicycle: you’re fine when you’re riding along, wobbly when you slow down, and unable to stay upright when holding still.
Orthostatic tremor means a tremor while standing. The patients have a high-speed fine shaking that occurs while standing, and is associated with a sensation of impending falling. Although some patients are able to feel the tremor in their legs, the high frequency and small amplitude make it imperceptible to most.
The inability to stand still produces very significant limitations. People with OT have difficulty with activities such as receptions, buffets, and even checking out at the grocery store. People with OT can also have problems carrying heavy items or extending their arms, so activities as simple as changing a light bulb, reaching for an object, or holding a digital camera become challenging. Standing chores must often be done sitting, for example making a bed while sitting on it.
OT was first identified in 1970 by Dr. Elio Lugaresi and colleagues in Italy, and was named Orthostatic Tremor by USA physician Dr. Kenneth Heilman in 1984. Neurologists, and especially neurologists who subspecialize in treating Movement Disorders, have the expertise to diagnose OT by performing electrophysiological studies and ruling out other possible causes. Orthostatic Tremor can occur in combination with other neurological conditions, and is often misdiagnosed or not diagnosed at all.
After her diagnosis in 2000, Gloria Nelson MacWright created a website called www.orthostatictremor.org to see if there was anyone else out there. She began hearing from others worldwide, and now over 1,100 people have registered on the site to create the Orthostatic Tremor Community.
Through this OT Community, people with the disorder can meet and share their experiences. Annual meetings are organized throughout the World to exchange information and hear presentations on OT. Community members, in partnership with Lundbeck Inc.’s “Raise Your Hand to Fight Rare Diseases” campaign, also raise funds for OT research that are awarded through the National Organization for Rare Disorders (NORD).
Nebraska Medicine is at the forefront in the effort to understand and treat OT. Nebraska Medicine is one of the three worldwide sites for Orthostatic Tremor Community meetings. Since 2011, Dr. Diego Torres-Russotto, Director of the Nebraska Medicine Movement Disorders Clinic, has led a series of clinical studies designed to unravel the origins of this greatly misunderstood disorder. More than 50 people are currently participating in Dr. Torres-Russotto’s project, making it the largest prospective OT study ever conducted.
Promising research is also being conducted elsewhere with the support of the Orthostatic Tremor Community and NORD. A group of neurologists at the Pitié-Salpêtriére Hospital in Paris recently performed a novel study in which nine OT patients were treated with electrical brain stimulation, while researchers at the University of Florida are piloting the use of a magnetic pulse treatment known as rTMS therapy for OT treatment.
Rare disorders such as orthostatic tremor do not attract the kind of research funding that produces treatments and medicines that can be mass-marketed. But people with OT have found solidarity through their website, meetings, raising awareness in their personal networks, and raising support for smaller research projects that may someday unlock the cure for this disease.
To support OT research, consider making a donation to the University of Nebraska Foundation Orthostatic Tremor Fund page.
To schedule an appointment with Dr. Torres-Russotto, call 888.898.8662.