I saw this posted on a Facebook page this morning for people with Parkinson’s and those that support them. It felt raw and very sad for that person to post this note to his or her Parkinson’s community.
As someone also with the diagnosis, I absolutely get what they are saying. How could I not? At the beginning, this was very much the way I thought and felt. Even now thoughts of the future creep in unbidden and can stop me in my tracks for a moment or more…
But, this is what I have learned about myself. I can’t afford to think too far into the future, because in doing so I may miss the magical moments of the present. If I focus on the ‘what if’s’ of this condition. If I take it for granted that the future is dire then what happens to hope? Life would feel – for me – that I was just waiting for that moment in time when life turns (basically) to crap and is not worth living. For me, this condition feels like it has sharpened my need to milk every ounce of enjoyment out of life, every loving moment, every joy needs to be savoured and relished. I cannot and will not deny myself joy and hope because fate has delivered me what has been referred to as ‘the family curse’ by me (both my parents had it) I am just not willing to give it that power.
So, yes, I know how scary it can be to have a degenerative condition and it’s (possible) implications for the future. I can acknowledge that and accept it, but I can also refuse to have it take over my life. I can find that at times my thoughts can race ahead to the future and what it might be like. However, anything can happen between now and ‘the end game’ so I’m choosing to do what I can to look after myself. To take my medications. To do my exercises. To consult my specialist when needed. To live my life and love my life despite this condition and that’s the best armour I can wear to protect myself against this thing I call Parkies!
My journey with Parkinsons 