When I was introduced to my disability I was also introduced to a lot of amazing people, each who had been introduced to the same condition from the same antibiotic as I had been. That guy really gets around, huh? To give you an idea of how that guy gets around, here’s a quick statistic from the Virtual Medical Centre (http://www.virtualmedicalcentre.com/diseases/ototoxicity/885);
Around 10% of people taking aminoglycoside antibiotics experience ototoxicity, although up to 33% has also been reported in adult patients, with a 3% chance of that damage being permanent. Generally, ototoxicity occurs more commonly in adults than in children and babies, where the incidence rate is about 2%. Vestibular toxicity from aminoglycosides is documented to occur in as many as 4% of adult patients, and around 2% of patients treated with gentamicin report hearing loss.
Oh, yea, hearing losses, as well as kidney damage, are other related side effects of ototoxicity. I am one of the fortunate whose kidneys were not affected but my high frequency hearing was. There are some people who because of gentamicin ototoxicity, that now require daily kidney dialysis treatment. Certainly a serious change in lifestyle; who I am kidding – a serious change in life itself!
Back to the future – I’ve already shared how I jumped on the bandwagon of advocacy and change. This included staying in touch others through a “Wobbler” email chat room sharing how our lives changed and offering each other a shoulder when needed, which was a lot. We talked about what could be done to stop what happened to us from happening to others. I took that part quite seriously, we all did.
These exchanges of support came together after connecting with Lynn Brown, the founder of Wobblers Anonymous. During my first 4-5 years of living life as a “Wobbler”, Lynn and I shared a passion of supporting, informing and igniting change. She educated me with a wealth of vestibular related information, people I could contact, and in helping her support the growing number of people finding the Wobbler’s group. And still today, the numbers continue to grow…
In 1998, when Lynn’s story came to producer’s attention, we shared a spot on a live taping of the Oprah Winfrey Show. Prior to that, I flew to Lynn’s home in Alabama, my first flight after losing my balance, a very frightening experience in itself. How I managed this I will never know… I do recall many tears of fear and absolute terrifying moments of not knowing where I was, trying desperately to navigate around people, to even freezing in fear at the thought of having to get on an escalator. Thank you to the kind gentleman who saw my predicament, grabbed my suitcase, and held on to me and my cane as we made our way to the top. Another lesson in asking for accommodations… as well as feeling compassion from a total stranger.
At Lynn’s home, a camera crew arrived to film Lynn, and several other Wobblers she had invited, to share our stories about the dangers of the antibiotic, gentamicin. Lynn shared her story candidly, as did everyone there. It was heart humbling to meet in person others who were experiencing the same life changing effects of ototoxicity. Very humbling…
Lynn asked me to accompany her to the live taping of the Oprah show in Chicago. Again, Lynn maintained her candid presence. Although I played a smaller role I was there and I learned a lot from Lynn and the lights, camera, action experience about telling my story. Also, I won’t lie, I was nervous – it was OPRAH for heaven’s sake!
Seriously, what Lynn and I shared that day was really important. Because of Oprah, and her show called “Prescription for Disaster”, with the aim of investigating the tragic side of medications, we were able to inform a lot of people on the risks of gentamicin and its ototoxic side effects. I was certainly honored that Lynn invited me to join her on the show and will always be grateful to her for that honor. It was also a thrill to meet Ms. Winfrey!
In 1999 I accompanied Lynn on a trip to Portland Oregon to take part in vestibular research at the Legacy Health Systems headed by a team of researchers who were working under the supervision of Dr. Owen Black. This time Lynn and I connected, I believe at O’Hare in Chicago, to travel together – which certainly lessened my fear and anxiety! Lynn is a former airline stewardess so she’s a seasoned pro at flying!
The research of Dr. Black delved into the vestibular system and postural control and how ototoxicity and other vestibular conditions affect these areas. Dr. Black played a major role working with NASA in investigating how space flight affects astronauts, especially how it affected the vestibular system. Did you know that when astronauts return from space they experience the same type of balance and visual symptoms as those of us with ototoxicity? Well, they do.
Dr. Black also guided many studies in how aging affects balance and a variety of other vestibular conditions. His dedication to supporting persons with vestibular dysfunction lead him to being a major influence to founding the Vestibular Disorders Association (VEDA), http://vestibular.org/. This Association helps persons understand vestibular disorders, how to cope, and help find support to live life with this disorder. Sadly, Dr. Black passed away May, 2012 but certainly left a legacy of his own.
My experience in Portland was really my first experience with the research world, and, being a test subject. There was a lot of strange and frightening looking equipment that I was either strapped or bound into or held up with a harness. I underwent tests unlike anything I had ever experienced to assess the damage done to my vestibular system, the visual effects of my oscillopsia, and ocular and postural control. Here are some photos from that experience:
So in 1999, my first bouncy and blurry look into the world of research took place. I was enthralled, curious, exhausted, but wanted to know more. How fortunate for me that that opportunity showed up a few years later in a tiny lab in Madison, Wisconsin surrounded by the work of Dr. Paul Bach-y-Rita and his team. Wow…