If I take enough c/l to feel motivated, I get compulsive, hyperfocused, forget to eat or follow my schedule, stay up too late, etc. This holiday season has disrupted my schedule and I've lost 5 lbs that l'd spent months trying to gain back.
If I take less, I don't feel like doing much other than sitting in a chair, especially in the afternoon and evening.
I was prescribed Rytary 3x145 three times per day. I felt like I was on speed. Dropped to 2x145 plus 1x95. At 8am, 1-1:30 pm and 6-6:30pm. 200 C/L ER at bedtime. Big slump mid afternoon, MDS said ok to take 1/2-1 C/L IR around 2:30 as needed.
It's been suggested I try every 4 or 4.5 hours, by then I'm feeling substantial wearing off, but because of the compulsiveness, I'm afraid of stacking.
I feel OK in the morning once I get going, but then I barely have time to exercise a bit and eat early enough to not have major food interference with next dose.
I fortunately have a husband who is very supportive and helps a lot but not good at all the details or figuring these things out. It's such a delicate balance. I'm aware that my cognitive abilities aren't what they were (I'm 67), and I'm afraid where this is headed.
I'm pretty sure more exercise would be helpful, probably a lot more (i do some core exercise and walk 40-60 min most days, occasionally i do 29-30 min on the elliptical) but I'm not sure I can get myself there, and I don't know how to manage meds, food, exercise scheduling so that it works!
Your thoughts, encouragement, experiences are always appreciated.
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rebtar
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I exercise first thing in the morning-now with the winter day light hours I get out the door by 6 to 6:30 AM - back by 7:30 and start mucuna (Barlowes) 650 mg 40% LD plus 1 CL 10/100 at 8. .then take breakfast approx 8:30 to 9 . Then 2ndmucuna/CL med dose at 1 pm . Exercise (walk) is # 1 priority no matter the weather. Getting up early in the morning seems to make the med dosing /breakfast work well The med wears off usually about 6 pm -even though I get pretty shake , rattle and roll ee am still able to brush teeth and wash my feet before going to bed usually by 8. I am now 66 years old and have pd sx for30 years + . what a marathon it has been however happy to find out that some of my symptoms seemd to have cycled through-to completion ..for example dropped foot and frozen shoulder the latter lasting 2 years but fortunately with the help of qi gong "arrow and bow walking" the dropped foot problem is gone. The shoulder injury curiously resulted in my arm swing returning! Right after I injured it my arm became very flaccid and it took time and exercise to heal -no more cogwheel rigidity or contracted forearm except lately my arm begins to return to "carrying" position( just slightly) I wonder what snapped! or was there some kind of pinched nerve that gave way ? I was not a surgical candidate ..BTW how is your shoulder doing? Your posts back then were very helpful to me . Sure hope you can figure things out- cognitive decline like all the other sx can oscillate and doesn't have to be just progressive deterioration- I take comfort in the thought that this wacky dis-ease can be unpredictable-and try to surrender to all the shifting that happens . Take courage and keep on keepin' on.
Thank you for your reply. I also think exercise is key. I have the issue of toe curling (foot dystonia) so I have to take my first dose before exercise.
What is arrow and bow walking? Do you practice qigong other than that?
My shoulder seems fine for now, but like the rest of me, needs more exercise.
Did you switch to mucuna at some point, and do you find it works better?
Thanks again for the hopeful reply. It's easy to fall into believing the decline scenario. I watched my father do that.
The holidays have also been disruptive (but good spending time with kids and grandkids...)
Gee rebtar you have a lot to juggle-and yes I switched to mucuna - actually waited for 16 years from start of resting tremor, bradykinesia, postural instability etc. to start CL...my husband suffered a debilitating stroke which launched me into taking med so I could function....and became his caregiver for 15 years ....eventually I did switch to mucuna and found that it did indeed work better...lasted longer and comes "on" quicker...I feel hesitant to try the agonists and even the IR and CR versions of LD because it seems they really mess with mental function. After reading your experience with Rytary I do not feel inclined to try that. For quite awhile I got into a downward spiral taking mucuna W/ green tea every 2 hours ..then read a conversation Park Bear had discussing dosage and thought I'd tr y to take more mucuna in a higher dose less often and was able to cut back from taking 6-8 doses /day down to 2 .. its SO MUCH simpler taking less med overall and better too . I was really suprised that I could get by ( actually do better) on so much less - and am hopeful that I might be able to reduce dosage even further. I was able to switch from white mucuna capsules to brown for the afternoon dose .
As for arrow and bow walking it is a sort of dance/tai chi paced type walk - I experiment with walking---sometimes do the fast walking sometimes I try a nordic/cross country ski style , sometimes just mindful trail walking. I used to practice qi gong quite a bit but not so much lately- it is difficult to "get to it" .
Can you sleep very well?
Glad to hear you have kids and grandkids to enjoy.
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