I consider myself very lucky for a lot of reasons. To name them all would take up more space than I have been given, so I will limit myself to my PD-related luck this time.
I am sure that there are people that would probably argue that experiencing the first symptoms of PD in my teens would be very far from luck, no matter how you see it. Well, I can only agree…
The same would probably go for not getting a correct diagnosis until some 18 years later. But here I must beg to differ. I consider it very lucky that I wasn’t diagnosed with a neurological disorder mainly associated with old people in my teens. I am certain that it was better for me at the time not really knowing what was going on with my body and why it didn’t always do what I wanted, even though I can assure you that I didn’t think so then.
I think it would have been a real stigma having had a PD-diagnosis hanging over me all that time. Because what would have been the point of it all?
Most neurologists will tell you that with PD you will have 5-10 good years when the drugs do what they’re supposed to and you will be able to live more or less the life you did before. However, after 10 or so years, you will be likely to come into the fluctuating phase, when your wellbeing will be difficult to predict from day to day and even during the course of the day… Or so they will tell us……. That is a whole blog of its own….. or a whole book……
For the time being, picture in your mind what would have happened to a 15-ish years old girl being told she has a condition that would be likely to render her totally incapable of controlling her body in 15 years time. If she’s lucky, she might get 20 years of independance before she’ll be cared for by her mother and father, like she’s a baby again. Would anyone expect such a girl to make the effort of finishing school? Going to university? Getting a drivers license? Getting a job? No, I didn’t think so and neither would I.
Looking back now on 25 (and counting…) years of a lot of hard work but also a WHOLE LOT OF FUN and rewarding experiences, I wouldn’t want to have it any other way. If I had been told at age 15 that what made my body disobediant was PD, chances are I would not have the world’s most beautiful daughter and the best hubby possible today, so that’s why I consider myself very lucky indeed for having had the wrong diagnosis for such a long time.
I also consider myself ever so lucky for having such a slow progression in my PD. A ”fellow sufferer” (I really don’t like that expression, but maybe it sounds better to an English ear than to a rude Viking decendant?) told me (with a distinct twinkle in his eye) that I was ”a sorry excuse for a person with Parkinson’s” and that I should ”be ashamed of myself” for being so little effected by having PD for such a long time. Of course the telling off did me a lot of good, in fact, I consider it one of the finest compliments I ever recieved.
On a slightly less positive note, I have during the last few months, with increasing worry, discovered what I think is a new PD-symptom. When I am excited, afraid, angry or startled, I tend to start to take very fast, very small steps, to the point of almost falling at times. I am, of course, concerned about this, but decided to try my best not to take out anything negative in advance. That never did anyone any good. Instead I have decided to observe and try to work out a way to learn how to avoid those silly small steps.