Sheldon Sugar

We are not alone with this "invisible" disease. It is just a matter of time and education when the word "vestibular" will be a commonplace name the public will readily understand.

Diagnosis: Undiagnosed

My life changed and my career as a tv cameraman/videographer gradually came to a halt starting back in 2003. My fellow cameramen would notice I was losing my balance while carrying my video equipment for the next gig. I said,”Oh,that’s nothing.” However, it was an omen of things that would bring a drastic change to my life. I’d be standing and talking to someone and I’d “catch” myself. My friends would ask,”What’s wrong?” “Nothing.” I kept denying anything was wrong. Everybody loses their balance sometime in their life. It went on like this for at least a year. The loss of balance was getting more noticeable and I knew something was not right. One April morning back in 2003 I had an afternoon wedding to videotape. I had had a bad cold all week and was worried I would not be well enough to videotape the wedding. However, Friday night I felt much better and gathered my equipment and started charging the necessary batteries for the next day’s event. Saturday morning came and I awoke to my very first episode of vertigo. I had never experienced anything like it before. My main concern was not what was happening to me but that I had better find a videographer for the afternoon wedding.Before making the calls, I thought if I take a shower I would feel better and be able to work that day. That didn’t happen. I was very nauseous and unstable.

The Miami VA Hospital was the first place I made contact with concerning my problem. They had been taking care of me ever since I had bladder cancer. The nurse that answered my call told me to go the EMERGENCY ROOM because of my vertigo. I told her it had stopped. I didn’t know at the time but the vertigo could have been the possibility of a stroke. I just dismissed it. I was only concerned with getting a videograpgher for the afternoon. The nurse said to come Monday to get examined. I did. The VA thought it might be an ear infection and gave me some antbiotics. I did feel better during the week and continued working. In fact I worked several months after that vertigo episode. My losing my balance was still prominent. I just ignored it and week after week did my camerawork.

My very last job turned out to be in October of that year I had my vertigo. Ironically,the song,”The Last Dance” was the last dance I videotaped. I was up on a ladder on the dance floor taping the couple to that song. I became very unstable and was afraid I’d my fall. I slowly came down with my camera and finished videotaping on floor level. I knew now I must get down to business and see what is causing me this balance issue.

Months and months of testing through the Miami VA indicated I had weakness in my left ear that was causing my balance problem. I’ve seen various ENT doctors, neurologists, audiologists and have had several MRI’s and CT scans. Nothing really showed up. Further testing was done at the University of Miami and the specialist there told me I have a damaged vestibular system. I said “What the heck is that?” Well I quickly educated myself and became connected with VeDA. It was correspondence with John Hopkins and the National Institute of Health that linked me to VeDA. The rest is history.

I feel such a connection to VeDA for all of their information and support. Because of VeDA’s Link List I contacted many of its members and the feeling of not being alone with this disorder has helped me tremendously. People would look at me and say, “Oh, you look fine.” Why do you need that cane? Then I explain to them about the inner ear and the vestibular nerve. They all were shocked that the vestibular nerve was the reason I walk unsteadily and use a cane. Some people still do not understand the function of the vestibular nerve. Slowly the word is getting out. That is why it is so important that we get the word out on Balance Awareness Week. I have done my part here in South Florida by sending VeDA’s press releases to our local tv stations and newspapers.

I am so grateful for being associated with VeDA and for the Miami VA diagnosing my disorder.  We are not alone with this “invisible” disease. It is just a matter of  time and education when the word “vestibular” will be a commonplace name the public will readily understand,due to everyone’s hard work and determination with VeDA. Thank you for everyone involved with my balance issue. It sure makes coping a whole lot easier.