Before DBS #2 – A day in the life?

I wonder how it all changes?
Before DBS #2

Up and doing yoga from 530. No dystonia (twisting out left calf muscle) today. Light stagger took usual pills 350mg levodopa with bowl of Kashi cereal at 7:30 kicked in at 8:15 with a typical little right leg wiggle and dance as prelude about 5 min before i smooth out. Just in time to walk smoothly to school and back with kids. I thought we had half a chance to get there on time but late as usual, Vance “fell” dramatically 25 times (he counted each dramatic flop) on the black ice. i vowed never to “hurry up” a kid being creative.

Leg starts to stiffen at 9:15. Next pills 9:20 with Helle’s heavy bread and cherry jam, kicks in about 45 min later. Dyskinetic (involuntary swing and swaying) at my desk past 1130.

12 40 go “off” as stiff set in again. Andreas home made chix soup probably not a good idea to have protein then chase it with levodopa pills that lose the competition for absorption up against protein. You’d thínk i’d learn by now after 13 years (this May) although i didnt start drugs till or 5 years into it. i was  at PD world congress in glasgow in 2010 and don’t recall taking much pills.

2pm still stiff since 1240 pills didn t kick in but will drive to get kids it will take a long time to walk. For some reason walking stiff doesn’t affect driving (or bike riding), my reflexes are still sharp. that was how i drove the famous white knuckle Amalfi coast road in italy last a may.

2pm Parents visit not talking very good but 2:15 try another round of pills. Pretty stiff picking kids up with Dad at 2:40 back “On” by 3 pm swaying and talking fine while mom and dad visited  and kids played.

Dropped off smooth movement at 6 and took last round of 350mg pill as directed to stop to be off for tomorrows DBs surgery. Note i left my azilect (rasagline) bottle at the cottage since the weekend, oops it was a mao-b inhibitor that costs 8$ per 1mg pill never did think it did much.

Vance and i shower till 9 and both kids wanted to sleep on either side but i need to be on the edge in order to getup. Fortunately Vance fell asleep while hannah and i having cereral so conflict avoided. Restless with mind racing about tomorrow and starting to feel hungry. 1am typing with both hands well and light stagger. Post this unusual day.


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