I was born in 1956 and studied as an Electrotechnic Engineer. My wife Tatjana, 45, works in a local factory and Anja, our 22 year old daughter, is a student. We all live together in a two room apartment in a small town in Slovenija.
When I was 27, I noticed the fine tremor in my right hand – especially when excited. My friends asked what was wrong with my right arm.
In the factory where I worked, a preventive medical check up was carried out every three years and in 1983 I mentioned my troubles to the doctor. He referred me to a neurologist, but as I was only 27 they were not expecting Parkinson's disease and I did not receive a confirmed diagnosis until three years later.
They introduced me to levodopa as my therapy, with marvelous results and my quality of life improved enormously. Before being prescribed levodopa, I was very tired after a day's work and was becoming very slow and clumsy. Three 125mg of levodopa solved these problems for the next five years. But then the drug gradually became less effective and my neurologist began increasing my dose more and more, and also prescribed Yuprenil, two tab. per day and Bromocriptin from three 2mg to three 6mg per day.
After ten years, slowly but surely I developed involuntary movements as well as sleep disturbances and balance problems. The tremor became stronger. Not only did the right hand shake, but also the left hand! In 1994 my neurologist applied to the Health Commission to assess the level of my disability and from then I began working part-time. I was 38.
In 2002 my neurologist decided to admit me to hospital to review my treatment and change the therapy. This arrangement took three weeks. Firstly, my drugs were given a holiday – but my days were awful – no holiday for me. I could not move or walk and for the majority of those three weeks I was 'off'. It was a terrible nightmare. The tremor was so violent it caused me to sweat, so much so that I needed to change my clothes several times a day.
The physiotherapists were excellent though and helped by moving me. It was at that time that I realised a ball is a very efficient tool (see EPDA Coping Strategies) to manage my tremor.
A few days later, the neurologist introduced me to an agonist drug (Mirapexin) instead of levodopa and that slowly began to take effect. I left hospital with: one tab. Madopar Liq in the morning, two 1.5mg and one 2mg of Mirapexin per day, three 1mg tab. Nakom (Sinemet) Mite, 3 1mg tab. Comtan, Nakom R for overnight and NO dyskinesias and involuntary movements!
But when I returned to work, it was not enough. After consulting with my doctor, one tab. of levodopa was added to the list and this therapy worked quite well for the next two years.
After the good moods comes the bad and this holds true for Parkinson's as well. My 'offs' got worse and more often, so much so that the times when I was able to go to work, became unpredictable. My neurologist tried to stabalise me by prescribing me with Tasmar and Apo Go, but my difficulties continued. Experiencing 'offs' three to five times a day created a fear in me of dependency. In 2006, at the age of 50, I had to stop working, 20 years after the diagnosis was confirmed.
Even though I experience many difficulties each day (see EPDA Plus issue 6), my social life is fulfilling. I enjoy all kind of sports (including winter skiing in the Slovenian mountains), but prefer walking, table tennis, billiards and darts – all helpful for my co-ordination and keeping me active. I enjoy good company and lots of fun.
My wife and my daughter are very supportive of me and my Parkinson's. I have supported the EPDA since 1996, have been an elected Board member for six years and have made many friends around the world during that time. I was also President of the Slovenian Parkinson's Disease Society for several years until I retired in 2007. Throughout all that time, Tatjana and Anja have helped me and have co-operated with both organisations. If I had not had such wonderful support from them and my other relatives, I really do not believe that I would be so optimistic.
