My previous blog ended: “I did not get back to them”, and I did not.
However, my mother did. In my medical record I found that exactly 2 years after my first visit, my mother called the clinic, worried about my deterioration. I was given another examination in October of 1989 and in the record I can see the professor’s words: “…at the exmination today, as previously noted, a dystonic cramp is observed… relatively distinct extrapyramidal symptoms…. dystonian in nature….”.
I was sent to a number of examinations: MRT, eye exam, EEG… My memory from this occassion is that the professor said that “well, now he could see that I did have some sort of neurological problem and it was probably something called generalised dystonia”. His assessment was that the symptoms were not difficult enough as to justify medication at this point. At my visit the day before my 20th birthday, he saw fit to give me my first medication and when starting taking it, I felt like a completely new person. For the first time in literally years, my body actually responded to commands, I could walk as a “normal” person. I felt strong, happy, I felt truly alive!
The initial boost-effect lasted about a week. The medication still had an effect though, it was just not as strong as in the beginning. I got on with my life, at the time being a student of chemical engineering, tried my very best to see the positive things in life. Which was actually not very difficult, seeing I was in love :-). I had just met the man who 17 or so years later became my husband (as well as the father of my child… although since that happened before marrying, let’s not make a big deal of that…). This was in the early days of the internet (yes, I am that old…) so I did my fair share of searching for information on this mysterious disease (a disease that for some peculiar reason responded positively to medication for Parkinson’s Disease… who would have guessed…).
Generalised dystonia was the first diagnosis I was given for what troubled me… but not the last.