Ad van der Wegen

Hello, my name is Ad, I am 62 years old and I live in the Netherlands. I am married with Marina and we have a daughter Dorith. Since September 2023 we have a grandson Matteo. Some 10 years ago I sometimes lost my balance and fell. I had no reason to worry, so I merely ignored it. Maybe some 5 years ago I had more permanent difficulty with walking straight and I visited my physician. Because I had a considerable overweight I was convinced losing weight would probably not solve the problem, but it would certainly be helpful in many ways. I decided to have a gastric bypass. In December 2020, after a careful intake, I had my surgery. My balance problem aggravated and I visited a ENT-doctor. My balance organ was intensely examined, but nothing was found. I finally visited a neurologist, but she just came to the conclusion: functional movement disorder. That was unsatisfactory for me. My symptoms aggravated and I increasingly suffered from nystagmus and a blurry speech. I went for a second opinion to a neurologist at the academic hospital in Antwerp. My father had similar symptoms, but at a much higher age (round his 80’s) so I was convinced it was something hereditary. I suggested neurology to search for a form of SCA. The then known variants weren’t detected. End of last year I visited the academic hospital Erasmus in Rotterdam. Only in February this year it was confirmed I was found positive for SCA27B. This week I have a new appointment and I hope to start with the NS medication fampyra. The most things I read about it are very positive. And so am I. 

Best regards,

Ad van der Wegenl