what do you do when you’re “off”

[rebtar]

I have three main “off” symptoms. Tight left leg, left foot dystonia, and anxiety. Someone recently told me that dopamine breaks down to noradrenaline and then to adrenaline, which can feel anxiety especially when movement is difficult.

My tendency is to want to sit still until this passes, which can take what feels like forever.

what do you do?

[ddmagee1]

I just push my way forward, and try to be more careful, unless if the dystonia is too bad, then I will wait for a bit! It’s not easy, I know. I have the same symptoms that you have! My toes have curled under and when I get a terrible foot spasm, I can hardly walk! I try hard not to let anxiety get the best of me! Good luck to you!

[House2]

Consider magnesium and or lemon balm herb.

[jeeves19]

read, watch tv and curse the universe for the absurdity of what I’m experiencing 🤔

[JeanieBeanie]

I read on here that one person gets up and walks around the house and it brings her on. It works sometime for my husband.

[Shorebirdsotherhalf]

Have you tried Inbrija (inhaler). My dose is 84 mg (two capsules @42 mg each) if I happen to sleep through my dosing schedule (Rytary ER carbidopa/levodopa 158.75mg/635mg 5 times daily) and it works beautifully for stiffness and other symptoms (including non-motor). Since I take Rytary 5 times daily I may sleep 6 hours which is my threshold for a more obvious “off period” requiring Inbrija. I’ve heard of others who chew/crush regular C/L and that works for a quicker release but the inhaler bypasses the stomach and works within minutes. One drawback with Inbrija is it’s comparatively expensive. Best of luck.

[beehive23]

i ride it out...hang tough....

[LagLag37]

I eat a serving of Quacker carmal rice crisps while I try to relax in my recliner. Sometimes I’ll walk around the house and swing my arms with an exaggerated swing. 🥊

[kaypeeoh]

Sometimes cramping of my left foot's arch wakes me up at night. It's difficult but I force myself out of bed and stand on both feet. That stretches the cramp after a minute or so. When I get back in bed I tell myself, "I'm not cramping, I'm not cramping..."

[BDSLD]

Just last week When I walking and start to be "off" my toes will start to curl. Then I will backwards with as long as a backward stride possible for 5 to 10 meters. It uncurls my toes and loosens up my calfs and hip. I hope this trick keeps working.

[Enidah]

I'm doing it right now, sitting in my chair flipping through YouTube on the TV and waiting. Doing more and more of this all the time and trying to keep my spirit up. Not enjoyable.