O for On/Off, of course…
After the first couple of years of symptoms, the first trial and error finding the right meds, after accepting the diagnosis and trying to get used to my new situation I started experiencing on/off time.
When meds work I am «on» and I feel pretty normal. If you didn’t know, you probably wouldn’t notice I have PD. When meds wear off I enter the dreaded «off» state, which as the name suggests is where nothing really works.
It is very different from being tired vs awake - I might not even feel tired, but it’s when the symptoms come back and I feel useless. Everything I try to do gets harder, feels overwhelming and sometimes impossible. When I walk I walk slowly and out of rhythm. My foot cramps up and my toes curl. My left leg feels super tight as if I have tight rubber bands around it. My hands get uncoordinated, my left hand is slow, jerky and shaky. My body feels heavy, and initiating any movement takes longer than normal. My hand makes a fist and everything is tight and stiff. I better have my pills nearby so I can hurry up and take one. But I forgot to bring water so the pill sits in my throat until I can gather the energy to get up and get a drink to get it down to start working. Waiting up to an hour for it to kick in can feel like forever. Maybe it will never kick in? But then - almost without warning - I am back “on”. 🎉Now I better use this time wisely, get as much done as possible before the switch flips back.
I think a lot of people with PD know all too well how this feels, and like me spend a lot of energy trying to master the art of timing the meds just right so you don’t suffer from more “off” time than necessary. And as you progress this gets more tricky and less predictable.
There are new meds on the market trying to solve this issue. I have yet to try any of them, and not many are available in Norway yet. But if off periods could be treated more effectively that would make a huge difference for the quality of life of many people with Parkinson’s.
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