pre-Rx backdrop (10.15.22)
fall 2022, was having evermore difficulty, cramping and pain limited my ability to do routine tasks like dress/groom and walk/drive, was needing help to get jackets on and shave, frequently losing balance stumbling to the rear.
with low finger dexterity everything was tougher, more challenging. was forced to use a human checker at safeway as self-checkout/bagging was a struggle as was carrying bags through doorways without losing balance or dropping stuff.
i was barely able to get out of the car on my own strength (relying 90% on right arm strength, 10% legs/hips vs the opposite), was not able to handle tight turns or parking lots well, driving braille over the dots too much, in a slow swerve, unable to hold the car center lane, foot fumbling between pedals. got disability plates to alert others why i drive so slow/oddly.
so as the pain/struggle/misery ex neck/back pain, imbalance, indexterity and insomnia got more relentless, too intense, and you try but cannot find a way to sleep or to bear it all if awake upright, you start to lose your marbles and want for it to end, are open to try anything. and not wanting to get stuck enduring a protracted misery like that, you edit/expand on your health directive exit plan so that there is no doubt you want all to know to pull all plugs early.
the decline reached new lows. desperate, i felt forced to finally give the Rx-prescription a 6-week try, at which time, i sent my neurologist #3, a movement disorder specialist who assured me a 12-pack beer a week was not causal, this 'vast improvements' progress summary:
carbidopa-levodopa feedback after 6 weeks: vast improvements (12.14.22)
3 weeks into Rx regime, i subtly noticed 5% more range of motion, less stiffness, more able.
after 6 weeks on the meds, i'm obviously doing much better, have regained about 95% balance, stability and dexterity thus ADL activities of daily living independence: can again shave myself and put my own jackets on, safely/normally shower and towel dry myself, easily open containers/bottles, carry 2 bottles in one hand, type on keyboards more normally with far more control less random key-press/clicking, more able to cuts bread/food with a knife...
and I can drive again 95% normally irritating less drivers behind, the slowness reduction enables me to make tight turns in tight parking lots, no more need to do 5-point turns instead of 3-point turns like I can again. less delay of right foot move off the brake to the gas pedal, able to hold the car center lane again, no more driving the dotted lines every quarter mile...
and I can walk 15% lighter easier with better taller posture, 15% less heavy falling forward gait and without the two walking sticks i needed all year prior to 3rd week on CDLD.
and in my parki-yoga class I can march-in-place almost in time with the music and do all the exercises without legs freezing-up in place - i couldn't even march-in-place in the class prior to CDLD five weeks earlier. and the yoga teacher noted I was losing my balance a lot less.
also 95% normal: ability to fling open a door with shoulder when hands are full, had to hold the rails going up and down the stairs, but now stable, can again do it hands free without issue, and i can more readily make fine-adjustments to get optimally-situated in the car, bed, seats.
regained ability to abruptly change direction on a dime without losing balance or getting tripped up clumsy. so feel 97% normal, could play soccer (if it wasn't for a bum knee strain), almost able-enough to work jobs that don't require vax or masks. losing 15% of base abilities/independence is enough to drive you nuts ready to get all your 'pull the plug' legal paperwork in order.
range of movement, balance, dexterity, ability and independence, all generally more normal. even if it's only 15% better, it makes all the difference between feeling alive, living, doing things vs enduring aka slow dying.
now, 45 days after mounting the new disability license plates the dmv sent me, i'm feel semi-guilty using the parking spots.
I'm an Rx sceptic, but so far I'm very impressed with this Rx, aware I will gradually need higher doses and eventually it'll stop working, knowing it is likely to tax my organs, but it's good for now. how long might it last before one needs higher dose adjustments?
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12.16.22
This is fantastic news! There's no good way to predict dose escalation timing, but most patients will stay on the same dose for many years with only minimal adjustments. If you are feeling good on your current dose you should stick with that and we may not need to change for a long time.
Happy Holidays!
Dr. Massa
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12.24.22
so I could hang at this one tab dose or could climb for experimental purposes half a dose to see if I get any more benefit or even a full dose. or I could save those higher doses for later. for now it makes the difference between ready to join dignitas to 'get this endgame over with' versus able to enjoy every little routine ADL thing including showers. merry xmas happier holidays!
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