When I was first given my Parkinson’s diagnosis, my world shattered… Our daughter was 9 months old and trying to learn how to walk. Was I to stop walking when she started? How much longer would I be able to work? How long before I was going to be completely dependant on others? Would my then partner (now husband) leave me (apparently he didn’t)? The questions were many, the answers were few…
This is of course a very natural response to such a life-changing realization. I had been diagnosed with a chronic, incurable, degenerative, neurological disorder. None of these words is even remotely positive. So, how come I am stupid or ignorant enough to call myself an optimistic realist today, more than seven years later?
You might imagine that the more I read about the vast number of symptoms that PD can bring and the more people disabled by our common lodger, the more terrified I would be… You would be wrong. For me knowledge is empowering (I am quoting a PD buddy of mine, thank you Chris!) and the more I learn, the more power I have in the fight.
There are different paths to choose when walking with PD (or if you are dyskinesic: dancing with PD). For me the path is involvement. I take pride in being a difficult patient, asking a lot of questions and expecting answers. I have also made the choice of going back to university, currently studying health informatics at a medical university. I hope to take my involvement even further and do what I can to help myself and others living with chronic diseases in general and, of course, PD in particular. Fingers crossed that I will be able to contribute.