UPDATE 09/25/01

Having just read the updates on your Thoughts, Experiences, and Suggestions from Visitors page, I was interested to read the letter from Vicki, Switzerland. I notice that she follows an exercise and deep breathing routine 4 times a week. I would like to add to this that I have been following a Rosemary Conley course of exercise since July last year. I attend a class once a week sometimes twice and in the interim I do the exercises in my own home every morning following one of her video exercise programmes. I have a routine whereby I exercise for about 40 minutes every morning before going to work. I find that this has considerably helped my OT symptoms and enabled my balance to greatly improve on what it was in April last year. If for any reason I should miss a session I notice the difference. She is right when she says it maintains muscle tone and flexibility and also releases 'those wonderful endorphins which promote a feeling of well being'. This has helped me tremendously during a very stressful time with my job last year and having to cope with the recent diagnosis of OT last June.

I hope this is of some encouragement to other sufferers.

UPDATE 05/14/02-
(the following article written by Sue was printed in the National Tremor Foundation April newsletter)

PRIMARY ORTHOSTATIC TREMOR
Attitude of Employers to Sufferers

I was diagnosed with Primary Orthostatic Tremor in June 2000 after extensive visits to my GP, Consultants and Specialists over a period of nine months. My symptoms began in October 1999 at work and manifested themselves in the form of being light-headed and unable to stand. I also passed out on several occasions whilst at work and in a restaurant, although I was told that if I had a balance problem this was unlikely to happen. I found that after driving to work I was unable to stand for around 15 minutes afterwards and would stagger as if drunk.

My job at the time was Personal Assistant to the Head of an independent girls school where I was also Office Manager. After about a month I was signed off sick by my GP with a diagnosis of Labyrinthitis and given the appropriate medication. I was referred to a Balance Specialist who sent me for tests with an Audiologist where my balance and hearing were found to be perfect! I was referred back to my GP with the advice that if my symptoms continued I was to be referred for a general medical examination or to see a neurologist. My GP referred me to a neurologist but during this time my employer also referred me to the School Doctor and subsequently to an Occupational Health Doctor.

By this time over three months had passed and I had been in and out of work trying to do my job. I was sent home from work in February 2000 and told not to return until I had seen the Occupational Health Doctor and a report had been received. I was seen by a Doctor in Oxford in February 2000 who sent me for an MRI scan and took a blood test. The MRI scan revealed that I had a small cerebellum and my GP deduced from this that I had cerebellar ataxia, which I was devastated to hear. However, two weeks later when I again visited the neurologist he put my mind at rest and informed me that I did not have cerebellar ataxia but he still didn't know what was causing my symptoms. As I seemed to have improved since the last time I saw him he suggested that I keep a daily record of my symptoms and send this to him after three weeks to see how I was getting on. By the end of the three weeks I had started back at work and duly sent off my diary. However, after being back at work I deteriorated and by April I was unable to stand still and when trying to walk down a corridor I would stagger from one wall to the other. By this time I was working shorter hours as recommended by the Occupational Health Doctor.

I returned to see my Doctor who recommended further tests during a day spent in hospital and having a lumbar puncture carried out. This occurred at the beginning of May 2000, I then had an agonising wait for any results as I was referred to a Movement Disorder Clinic at the end of June. By this time I was shaking rather badly from the waist down. At the Movement Disorder Clinic I had my legs listened to by two Consultants and other tests carried out, still no conclusive diagnosis was made. I was then told that I would be referred for further tests. However, it only took a week this time to get an EMG test carried out (I was told it normally takes over a year for an appointment for this test). The Doctor who carried out this test immediately informed me that I had Primary Orthostatic Tremor, I still didn't really know what this meant, but I was relieved at last to have a name given to my problem. I subsequently looked it up on the internet and found a website called orthostatictremor.org; I was one of the first to contact the site back in July last year and have kept in contact ever since. It was a great comfort to correspond with someone who knew the disorder and had only recently been diagnosed herself after years of misdiagnosis.

I started taking Clonazepam (Rivotril) at the end of July 2000, gradually building up the dosage as it did tend to make me sleepy. However, I started back at work in August and had also began an exercise programme to build up my stamina, I was keen to get back to my job after such a long time away from it. Unfortunately, this did not work out as planned as my employer told me that she did not want me staggering around in front of the parents. I was extremely upset at this statement, which of course made my tremors worse. I carried out my work to the best of my ability for another two months or so but during this time I felt that there was a definite change in the working atmosphere. The outcome of this was that I was immediately suspended from work on a "trumped up charge" and subsequently disciplined. This all made my condition worse and caused anxiety and depression. I was not allowed to return to my designated employment. This was extremely sad after loyal service of over five years.

I would like my story to be read by other sufferers and to know whether any of them have had a similar experience in the workplace, as I feel this has scarred me for life. I still continue with the exercise programme and felt that this gave me a focus in my life when "the chips were down". I have now found another job with an employer who is sympathetic to my condition and has no problems with it at all. I attended the National Tremor Foundation Conference in Stratford last year and met other POT sufferers and intend to keep in touch. I have also joined the Foundation and hope to raise awareness of the condition in my area.

Sue - Oxford, England