Anne Bard knows! She knows how you search for an answer to what is causing your dizziness, vertigo or imbalance. She knows what it is like to have “countless doctors, tests, medications, trying everything under the sun, but still having no clear diagnosis or cure.” She knows how you must struggle to find support from professionals, family, and friends. She knows, because, like you, she has been struggling with a vestibular disorder.
This is the first of Anne’s three-part story that I will share with you over the next week. As I tell her story, I will provide you with the resources she was able to use to help inform herself about her vestibular disorder, and the ways she found a community of support.
Anne began to feel dizzy in 1981; the symptoms impacted her ability to work. “I have been swaying when standing every minute of my life for the past 35 years,” says Anne. “The dizziness varies from mild to severe, depending on how long I am on my feet. But one thing has never changed: It is always there.”
Anne had a wonderful teaching career at Lehman College, City University of New York. “I loved the students, the association with colleagues, the sense that I could help people, and the creativity and challenge of the work,” she recollects. Until Recently, Anne was able to find ways to continue working at the university with her symptoms.
Eight years after first being afflicted with balance issues, Anne found the Vestibular Disorders Association (VeDA). “It was a godsend when I first discovered VeDA,” says Anne.
One of VeDA’s main goals is connecting patients like you and Anne with vestibular medical specialists through our provider directory. Anne found Dr. Kenneth Brookler, a neuro-otologist, at Lenox Hill Hospital in New York City, through VeDA, which made a huge difference in her vestibular recovery.
Dr. Brookler referred Anne to a vestibular rehabilitation specialist. He also gave her cherished advice to “never go without having a bit of food every few hours, since the inner ear is sensitive to changes in blood sugar.” (Dietary considerations are relevant for certain diagnoses. One thing that can help you and your provider better understand your symptoms is by logging how food, the weather, and exercise impact your symptoms.)
Years after having her first vestibular rehabilitation therapy treatment, Anne returned to therapy with Mackenzie Root, DPT, a vestibular physical therapist at The Rusk Institute in Manhattan. Under Dr. Root’s guidance, Anne began a program that involved vestibular rehabilitation therapy and balance retraining.
It was additionally recommended that she participate in a Tai Chi class developed by Peter Walter. Anne has attributed her health “slowly inching back to abnormal” to the support of Dr. Root and Mr. Walter.
Even with her improving balance, Anne continued to wonder why she was having trouble getting a diagnosis. She recently met with Dr. Catherine Cho, who was finally able to give her a probable diagnosis. “I feel fortunate to have found a doctor who is investigative and dogged about finding answers to this often mysterious and frustrating condition,” says Anne. Knowing her diagnosis has encouraged Anne to further research her type of vestibular disorder.
As a proud member of VeDA, Anne has been able to learn about vestibular disorders and others who “suffer from crippling vertigo and can’t get out of the house” through On the Level (VeDA’s quarterly newsletter, available to members of VeDA’s Community of Support. You can read a free sample of On the Level so you can learn how others cope with their vestibular disorder, what types of treatments specialists are currently providing, and the most current research).
Anne is hoping to use the information she learned through VeDA to help her go back to work someday, though this time she will have to rely on a cane for support.
The feeling that you are the only person in the world going through this is common. Anne Bard has known this experience. To cope with this feeling she did not just seek to know about her vestibular disorder, she sought out personal connections. She has worked to develop a support network amongst the vestibular community to provide emotional support and share tips on managing symptoms.
Anne found Dr. Brookler with the help of the Vestibular Disorders Association (VeDA). In 1991, Dr. Brookler offered to help Anne and three of his other vestibular patients create a support group. He would provide them with a meeting space, while they would need to promote and manage the meetings.
The four women founded the Dizziness and Balance Disorders Association, the first support group for people with vestibular disorders in New York City.
“People living with all kinds of dizziness and vertigo came from the New York area and nearby states to take part in open discussions, workshops and lectures given by a variety of guest speakers in the health care professions. And there was even a coffee hour with a nice array of nuts and cheese.”
Anne was a facilitator for the meetings for several years. After the Dizziness and Balance Disorders Association stopped meeting, Anne looked for new ways to connect with members of the vestibular community.
Anne utilized her VeDA membership benefits to create bonds with others through our member forum and our V-Pals list (an email pen pal list).
Through V-Pals Anne was contacted by Amy, a new member of VeDA in the New York area. Amy knew to contact Anne after receiving a recommendation from VeDA. Anne and Amy exchanged emails before meeting in person. Knowing the value of support, the two women became interested in forming a new vestibular support group in New York City.
They again contacted VeDA in order to find out more information about starting a group and joining the Vestibular Support Group Network. VeDA provided them with the tools to organize meetings and made contact with the New York Vestibular Community (individuals and professionals) to find a potential host location.
Anne and Amy received an overwhelming response of individuals interested in joining their vestibular support group. One person offered their home as a temporary location to host a small number of individuals.
The New York support group is still in the formative stages, but Anne is “honored to be part of this effort” to create another option for support for the vestibular community.
You may have learned about vestibular disorders by searching for your symptoms online, or perhaps you were fortunate enough to have a primary care doctor who was familiar with vestibular disorders and could refer you to an ear, nose and throat doctor, neurologist or audiologist for evaluation and testing.
For the most part, however, there is a lack of awareness about vestibular disorders, both among the general public and within the medical community. When you tell someone that you have a vestibular disorder, chances are they have never heard that term.
Consequently, your search for a diagnosis may be a long and arduous one. Thirty-five years ago, finding information on vestibular disorders was nearly impossible.
A lot has changed since Anne first started feeling disoriented as a result of her vestibular disorder. Back then, she didn’t have a doctor who understood what was causing her symptoms.
Anne found VeDA shortly after we grew from being a local support group to a fully-fledged national nonprofit with the goal of providing information and support to all patients suffering from inner ear and brain balance disorders. VeDA referred Anne to a healthcare provider who specializes in vestibular disorders. Prior to that, Anne had spent eight years without any understanding of why she was dizzy. Perhaps you have had this experience and know how hard it is to find the right specialist.
That is why VeDA’s advocacy work has focused on helping reduce the time it takes for you to find the right doctor and receive an accurate diagnosis. Our Advocacy Team has created a triage protocol to help primary care physicians recognize the symptoms of vestibular disorders and refer patients to the appropriate specialist.
Advocating for quicker diagnosis addresses part of the problem, but equally important is raising awareness about vestibular disorders among the general public. You have probably had the experience of feeling ostracized by someone because of your illness. Anne certainly has. She says that “the isolation, the need for much rest, how it truncates the day, how one must hide it and devise peculiar strategies, and how it is trivialized” can make it very difficult for her to cope.
In 1997, VeDA created Balance Awareness Week to raise awareness about vestibular disorders worldwide. Each year this event reaches more and more people who are searching for answers. In 2016 that outreach led to the House of Representatives declaring September 12-18th, 2016 as National Balance Awareness Week.
After 35 years, Anne has seen a real change in people recognizing her personal struggle with a vestibular disorder. “It’s not invisible anymore, and now wherever I go people are considerate and polite. They make way on the street for someone walking oddly, and they always offer me their seat on public transit, even in the middle of rush hour.”