Vice President of Mental Health Programming Karen Ross, PhD (left) and Vice President of Support Paula Schneider are guiding DMRF efforts to address mental health.

At a Glance:

The hallmark symptoms of dystonia are involuntary movements and postures, but this only tells part of the story.

While the DMRF has long recognized the need for emotional and mental support for individuals and families, the Foundation is taking added steps to address mental health in the dystonia community. Earlier this year, the DMRF formalized this priority by creating a Mental Health Programming Committee. Past Leadership Chairperson Paula Schneider is stepping into the role of Vice President of Support to replace Karen Ross, PhD, who is now the first Vice President of Mental Health Programming.

Dr. Ross has served on the Board of Directors since the 1980s. Her adult son developed generalized dystonia as a child. She is a retired Clinical Psychologist and Family and Marriage Therapist. She authored the book Holding the Hope: A Parent’s Guide to Living with Dystonia.

Paula developed dystonia in her 30s, and it quickly became severe. She was one of the first dystonia patients in the country to undergo deep brain stimulation (DBS). She has served on the DMRF Board of Directors since 2009 and is a liaison between the Board and DMRF peer support groups.

Dr. Ross and Paula recently met for a conversation about mental health and dystonia and how the Covid-19 pandemic has made it all the more important to ensure the emotional and mental health needs of the dystonia community are being addressed.

“It’s very stressful for everybody in the world,” said Dr. Ross. “There’s nobody that’s not touched by the effects of the pandemic. But for people that have dystonia, or have pre-existing conditions, it’s a double whammy. The anxiety is heightened so much more right now.”

The Covid-19 pandemic has exacerbated issues the dystonia community has long struggled against including healthcare and treatment access, accessibility of public spaces, social isolation, lack of social services for individuals with disabilities, and mental health disorders including depression and anxiety.

Echoing the various types and severity of dystonia, as well as individual life experiences, mental health experiences also tend to be varied.

“It’s hard to describe what people are experiencing in a general way. It’s very individual,” said Dr. Ross. “I know for me, and for others that I know, trying to get a diagnosis, trying to get treatment, just going through that whole process—it’s traumatic. Dystonia is a huge traumatic episode.”

“The isolation with this condition is just unbelievable,” added Paula, “and that was the case before Covid.”

Paula underwent deep brain stimulation (DBS) in 2001 after more than a decade of severe disability. Ironically, it was the success of the procedure, and the startling absence of pain and dystonia symptoms, that made her realize how profoundly dystonia affected her physically, emotionally, and mentally.

“I didn’t realize how sick I was and the effect it was having on other people,” she said. “It’s very hard to describe what the pain of dystonia is like, with the pulling and the twisting and all of that, until you don’t have it anymore. It creeps up on you.” She recalled that friends confessed, years after the fact, that they felt uneasy spending time with her when they sensed she was in pain. They didn’t know if they were helping by staying to visit and socialize, or whether they should leave and let her rest.

There was a time Paula didn’t realize she was presenting “classic” signs of clinical depression until, to her surprise, her doctor brought it up.

“You were suffering,” offered Dr. Ross. “I think that would be a way to describe how much suffering you were going through, that you had no idea how much you were suffering until you weren’t. Those are coping mechanisms because it allows you to survive the best you can, but it takes a toll when you have suffered and suffered and suffered. That too is traumatic.”

Karen stressed how intertwined social connection is to mental health: “If you don’t have family members or a therapist or somebody you can talk to about any of these things, it makes it so much more isolating and depressing and painful. It’s reaching out that is usually hard for people, maybe the hardest part, reaching out to say I need to talk for 10 minutes or to get on one of the private social media groups and say this is what’s going on with me and I don’t even know what to do. Taking that first step is difficult. The listening part is the healing part. When you’re being listened to, and you’re able to truly express what’s going on, you feel better afterwards.”

Paula agreed: “Just having somebody listen and acknowledge that the pain is real is so important.”

The goals of the Mental Health Programming Committee are to identify needs in the dystonia community related to mental health and to assemble experts and resources to address those needs. The scope of the DMRF’s efforts include research as well as patient education and outreach. In the fall, DMRF is planning the first-ever scientific workshop on non-motor aspects of dystonia. DMRF is also co-funding a Dystonia Coalition Pilot Projects grant on improving methods for screening individuals with dystonia for mental health concerns.

Dr. Ross said she looks forward to keeping the dystonia community informed of the Mental Health Programming Committee’s activities as they progress, “We are in the process of trying to discover what people need most and finding ways to help people get what they need most. We’re doing everything we can to help.”

“This is an organization that really cares about people,” said Paula. “We try to show every day that we care.”

Click here for more information about dystonia and mental health.

If you are in crisis:

The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.