Phil from Washington recently submitted the following article on his personal, 33 year experience with a vestibular disorder, an inner ear disorder that causes severe dizziness.
Phil's experience with misdiagnoses and dizziness are unfortunately common with inner ear diseases. Through Phil's experience, we can all begin to understand the complications brought to daily living with vestibular disorders. Thank you to Phil for sharing his experiences and these helpful suggestions on what people with vestibular disorders need from health professionals and rehabilitation.
On March 18th 1973, I drove the full length of Sunset Blvd. with a friend of mine and her son from downtown Los Angeles to the Pacific Ocean. I had moved to Monrovia, CA the summer before. We took a long drive in the LA area almost every Sunday. We took a long route back to get to a restaurant in El Monte for dinner.
I remember looking at the bottom of my coffee cup which was empty, then waking up lying in my friendís sonís lap. He was 8. Someone had called the paramedics and pretty soon I could see a fire truck with its big red light on top going around and around. The paramedics asked me some questions and I knew my name and things like that. When they asked me to sit up I was still dizzy; so, I was taken to the hospital in an ambulance. Nothing serious was found wrong and I was sent home. Thatís how my 33 years with a vestibular disorder started.
My life was changed forever. I lost the ability to work or go to school. I couldnít shop for myself. The neurologist I saw said it was okay to drive, but it was difficult. It was hard to go to the bank, pick up prescriptions, or get my haircut. Up to that time, I was a bachelor who ate out all the time. I couldnít do that anymore and I didnít know how to cook (Still donít).
Constant dizziness and nausea is very disabling. Many people with physical disabilities can go where they want with assistance or a wheelchair. If they get tired, they can go home; but, otherwise, they can go to the store, movies, etc. providing the place they want to go is accessible. Dizziness presents a different problem. A person is uncomfortable everywhere. Getting dizzy in a store is very scary. It makes a person leave a basket of groceries and rush out of the store and never go back. In California, I had three friends shop for me at different times. I had originally moved to California to attend graduate school. After a couple of quarters, I had changed my mind and took tests for a government job. If I hadnít gotten sick, I might have been working for the IRS. By the time I received notices of interviews, I was too sick to go.
A year later, my friends in Portland, Oregon decided I was not getting well in California and moved me back to the Portland area in the summer of 1974. My friends in Portland had a large family and one member in particular shopped for me. They also took me to their home frequently and took me out to eat. I frequently had to leave a restaurant and wait for them in the car, but it still got me out. I had to give up driving when my California license expired, because I couldnít deal with the process of getting a new license. I finally was able to get a new driverís license in 1976.
When I applied for Social Security benefits in 1976, they wanted me to go to work. I did find a job that I held for seven months full time in 1977. That was the longest I held a job between 1976 and 1981. Altogether, I probably worked two years during that time period. I have to add here that I had had polio while serving in the Air Force in 1957. I was 19 at the time. I receive full VA disability compensation for the polio which is the only reason Iíve been able to survive all these years. After 1981, I gave up trying to work. I had worked myself off Social Security disability in 1977 and didnít get Social Security again until I was 62 at the end of 1999.
The other problem I had was finding appropriate treatment. It took me 12 years to find a specialist who could diagnose my inner ear condition and treat it. The first thing he told me was that he couldnít cure my condition, endolymphatic hydrops, but he could make me feel better. The treatment included diet, medication, and physical therapy. It took all of this to overcome chronic dizziness and nausea, and it took time, not months, but several years to make any real progress. My activities are still limited, but Iím much better than I was 20 or more years ago. My worst days today are like my best days were 20 years ago. I can do some shopping, although I pick my stores carefully. Large, busy stores are out of the question. On average, I donít leave home for more than 4 or 5 hours on the days I leave home at all. I generally go out 2 or 3 days a week.
I have found volunteering to be a way that I can contribute to my community. Even 2 hours a week is enough to help out an agency that might not have enough staff to get everything done that they need to do. I did data entry at my local volunteer center for about 2 hours a week for 10 years. There are also opportunities to volunteer on-line for people who need, or want, to volunteer without ever leaving home. There are two things that I think are necessary to help people with vestibular disorders have a better life.
2. Social Security and Vocational Rehabilitation need to do more to help people with these disorders than send a person to the local unemployment office to find a job. People need counseling to help them determine what kind of job they might be able to do, appropriate training when necessary, and follow up by a counselor for a year or two to see if they are being successful.
If I had had appropriate treatment sooner and more help in finding an appropriate job, I might have been able to work for many years after age 35. The longer a person is out of work with this disease, the less likely that person will be able to get back into the workforce. At least, thatís my conclusion from my experience.
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