Ruth was diagnosed with a rare movement disorder called orthostatic tremor (OT). Below, she shares her story to spread awareness, encourage more research, and help others who suffer from this debilitating condition.
Ruth Hochheiser always led an active life—she raised children, worked, played sports, and went to the gym almost daily. A few years into retirement, she realized something was wrong with her legs when she could no longer stand comfortably for extended periods. After four years of doctor’s appointments and searching for answers, Ruth was finally diagnosed with a rare movement disorder called orthostatic tremor (OT). Because OT is so rare, very little is known about the disorder, making it difficult to diagnose and often even harder to treat effectively.
We spoke with Ruth about her journey to get a diagnosis for OT, the difficulty of finding treatments, and the importance of funding research on movement disorders. Read her full story below.
What Is Orthostatic Tremor?
Orthostatic tremor is a rare movement disorder characterized by rapid muscle tremors in the legs and sometimes the torso. It occurs when standing still, disappears or lessens when a person is walking or sitting, and causes unsteadiness, exhaustion, pain, and muscle stiffness. In many people, the severity of tremors worsens over time, eventually requiring the use of mobility aids. Getting an OT diagnosis requires a clinical exam and a specialized test that measures electrical activity in the muscles. While the cause of OT is unknown, doctors believe it results from the brain incorrectly regulating nerve signals that control muscle activity.
Appearance and Progression of Symptoms
After a few years of playing in an orchestra, Ruth noticed something wasn’t right with the feeling in her legs. As a percussionist, she was required to stand for long periods of time. While this hadn’t been an issue previously, it was slowly becoming a problem.
“I noticed I couldn’t really stand for that long without sort of marching my legs… I just couldn’t stand still,” Ruth says. After attending an awards ceremony for a friend and realizing she could not stand and socialize afterward, Ruth knew she needed to seek help.
In 2014, she began her search for a diagnosis. In addition to seeing her primary care physician, she went to an orthopedist, multiple physiatrists (doctors that specialize in physical medicine and rehabilitation), and a neurosurgeon. No one could determine what exactly was wrong, and while several doctors had suggested different potential treatments, these weren’t helping reduce her symptoms.
Meanwhile, Ruth’s condition was getting progressively worse. She could no longer do household chores and other activities that required standing for significant periods of time. Eventually, Ruth saw a neurologist who suspected she had a movement disorder and referred her to a specialist. She was finally diagnosed with OT in 2018.
As Ruth discovered firsthand, it’s challenging to get a correct diagnosis for orthostatic tremor for several reasons. Orthostatic tremor shares symptoms with a number of other movement disorders, but unlike with diseases like Parkinson’s, the tremors caused by OT cannot be detected visually. The lack of research and awareness about OT also made it difficult for Ruth to find information about her condition, and she discovered that many doctors are not familiar with the signs and symptoms.
Treatment and Medications for Orthostatic Tremor
Soon after her diagnosis, Ruth encountered another challenge stemming from the lack of research and understanding of OT: there are no dependable treatments for the disorder. While there are several medications available to reduce tremors and pain, they do not work consistently for each individual, and most lose their effectiveness after a short time.
“Most of [the available medications] work for a short period of time until your body acclimates to them,” Ruth says. “And then your choice is: do you up the dosage, or do you try a different [medication]?”
The first medication Ruth took after her diagnosis initially worked wonders, making her feel almost as good as before she developed symptoms. However, after a little over three years, the effects wore off and she had to try something different. Ongoing treatment is a constant process between Ruth and her doctor of trying to determine which medications are actually working. “A lot of it is experimentation,” she says.
Ruth stays up-to-date on the latest clinical trials and treatment options for OT and frequently communicates with researchers around the world. It’s difficult for doctors to pinpoint which treatments will help because the disorder affects people differently—methods that aid one individual may not benefit another. There has been some research into deep brain stimulation (DBS), which involves stimulating the brain through electrical pulses and has shown promise for treating other movement disorders like Parkinson’s disease. Ultimately, more research is needed to identify how OT forms and progresses to provide better targets for treatment.
The Physical and Emotional Toll of OT
As with other brain diseases and disorders, OT impacts not just physical health but mental health as well. Dealing with its effects has been challenging for Ruth. “It’s been extremely emotionally difficult because I was such an active participant in life,” she says. “I’m still the same me, but my body does not allow me to do the things that it once did.”
Some days are better than others when it comes to accepting the new limitations and challenges of living with OT. “It creates a feeling of isolation, a feeling of powerlessness, a feeling that I have no control,” Ruth says. To combat those feelings, she meditates daily and is an active member of an international Facebook group for people with OT.
Ruth also feels extremely lucky to have the support of her family. Her husband has stepped into a caretaker role, assisting Ruth and taking on most of the household chores. He often helps her walk by holding hands—Ruth jokes that she leans on him physically and metaphorically. “He’s been amazing,” she says.
Though Ruth says her husband puts on a brave face, he is also impacted by her disorder. “He tries not to let me see him be upset because of how I am suffering with this,” she says. She is thankful that she is functioning well enough for him to still enjoy his regular social activities like golf and poker. “I don’t want my condition to take away that,” she says.
Ruth has two adult children who have also been affected by her disorder. Her son and his family live out of state. Before she started experiencing symptoms, she could visit every few months, but now she sees them much less often. Ruth’s daughter and her family live nearby, but OT has taken an emotional toll on them as well.
“It’s very hard for [my daughter] to see me because when I go to her house, I take my cane with me, and I kind of have to touch the wall to get around or touch a chair,” says Ruth. “I know it makes her very sad because she knew how active I was.”
Spreading Awareness and Inspiring Research
Ruth is passionate about spreading awareness of orthostatic tremor and hopes this will lead to more correct diagnoses and better treatments for people with the disorder. “One of the biggest problems is that [some] doctors [have] never heard of it,” Ruth says. “And how can you get a cure if they’ve never heard of it?” As a patient advocate, Ruth does everything she can—reaching out to health care organizations, writing statements, and contacting researchers—to put the spotlight on OT.
Ruth is eager to participate in clinical trials to advance our understanding of OT, but there are currently few options. She hopes that educating the public and medical professionals about OT will lead organizations like the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) to fund more clinical trials to help people living with the disorder.
Ruth believes that with more research, finding a way to slow the disorder’s progression may be achievable in the near future. Because brain diseases are interconnected, research into movement disorders like Parkinson’s, dystonia, and others will impact our understanding of conditions like OT and vice versa.
That’s why investing in brain disease research is crucial—even studies about a rare condition like OT can potentially affect millions of people. While she advocates for life-changing research, Ruth practices acceptance and gratitude. “I am more than my body,” she likes to remind herself. “And I am grateful for the simple things in life.”
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