My mother has Meniere's disease, which affects her hearing and balance. Once an outgoing and independent woman, she now has difficulty navigating busy public places and can't participate in group conversations, but because she doesn't look "sick" many people think she is just making up her symptoms. VEDA has provided a great deal of comfort and validation to her so that she doesn't feel so alone, reassurance that it's not all just "in her head." I have also learned a great deal about vestibular disorders and feel more compassion for what my mother has to live with.
I have been connected with VEDA since I was initially diagnosed with Vestibular "Neuronitis" in 1986 (pre-MRI; I am allergic to CT contrast medium;). At that time the research and growing body of information available through VEDA helped me to understand the symptoms I was experiencing, especially the varied distortions in my balance the dramatic changes in cognitive processes. VEDA has LITERALLY saved my sanity and self-confidence over the years since the initial onset. That is not an understatement!
In the mid 1980's physicians were largely unaware of symptoms of vestibular disorders. I was fortunate to have worked with an ENT surgeon who quickly pinpointed the likely vestibular origin of my symptoms. However subsequent referrals by my primary care to neurologists brought very unpleasant, pejorative evaluations and allusions to malingering and psychiatric origins.
I believe VEDA has been a major catalyst and leader in furthering awareness of vestibular disorders among physicians, the development of PT reeducation of balance, research to provide further information, support to and from specialists.... so many positive developments in a life-altering yet largely invisible disease process.
I was a highly functioning RN working in the operating room at the time of onset. After 6 months away from work, mostly housebound, much of the time sleeping and regaining a semblance of balance, I found that I was unable to prioritize and re-prioritize without extreme effort and hesitation, unworkable and unsafe for patients. Information from VEDA assisted me in decisions to move to other areas of nursing. And it helped me compensate for chronic disabilities and the accompanying fatigue. It also was a source of reassurance in a few situations when coworkers judged my situation harshly.
I have been fortunate to have been able to learn to compensate or leave behind prior pleasures (bicycling, skiing,) adjust my lifestyle and continue in my profession over the past 25+ years. As I am aging, I experience the subtle decline in balance and abilities to multitask are further challenged by the underlying chronic vestibular disability. PT is a valuable assistance. And VEDA continues to be a source of valuable information. I introduce VEDA to physicians, friends and acquaintances who are experiencing inner ear symptoms.VEDA is worthy of all the support we can muster; the money is well-used and the results are indeed life changing.
Review from Guidestar
As a Vestibular Physiotherapist who has been treating people with dizziness and balance disorders for 20 years, VEDA has been an extremely valuable resource for my patients and my practice. For many years I've utilized VEDA's excellent and reliable patient education materials, their resources for professionals and their Provider Directory to help people find help from vestibular medical professionals in their area.
Now that I am fortunate enough to be on the Board of Directors, I've come to appreciate the hard work, passion and dedication from those 'behind the scenes' and am amazed by how much is accomplished by so few. We are committed to serving and advocating for those with vestibular disorders, with the vision of an international community where vestibular patients are rapidly recognized, diagnosed and treated.
Those with vestibular disorders frequently encounter a lack of understanding and support from their medical, insurance, employment and social communities. VEDA is working hard to change this, so I encourage everyone who has or cares for a person with a vestibular disorder to consider joining and supporting this wonderful and necessary organization.
When my symptoms of Meniere's began to worsen, I found the best information source was VEDA! This organization provides invaluable information for people with the vast array of vestibular disorders. I truly do not know what I would have done, or to whom I would have turned for knowledge, for guidance, for support, if it weren't for VEDA, especially the publications they provide that address just about everything vestibular.
Unless people have already established a relationship with the right kind of physician who can effectively diagnose and treat these diseases, so many of us wander the Earth in agony. VEDA knows these diseases well and provides those afflicted with the tools and resources we need to get moving in the right direction of health.
Thank you to all the people of VEDA! You rock.
Review from Guidestar