I wish there was a monitor that I could wear, that would tell me what's causing what...I feel like I'm in search of a secret formula and if I could just figure it out, I could deal with this! One dose, meds may work great for 4-5 hours, another dose maybe 2 hours or not at all. Sometimes there seems to be a delayed effect, when I go 2 hours after taking meds and think that they're not going to work and surprise...all of a sudden, they kick in! Now, do I time the next dose at the scheduled time or from when they kicked in?
I have noticed this summer that if I sit in the sun or try to work in the garden in the heat and humidity, that I quickly become weak, light-headed, stiff and shaky, just like when my meds are wearing off. Normally, I would take my meds, but the other day, I couldn't make it in to do that, so sat in the shade, put my feet up and drank a glass of iced tea, within 15-30 minutes, all symptoms had subsided...without taking any meds.
Why is it that sometimes I can go to bed feeling meds are wearing off, becoming slow, stiff and tremor kicking in, awake in the night, unable to roll over or sit up on my own, however get up in the morning feeling fine, no tremor or stiffness and not having taken any meds in 8-10 hours? On such mornings, I am usually good for about 3-4 hours after getting up and then tremor and stiffness start kicking in, so then I take my meds. Other mornings, I'm stiff, shaky and can barely move.
If I have to drive on the thruway or expressway or in the city...major stressor for me, even if I time my meds accordingly, I get my tremor and what I call my uncontrolled movements (flailing arms and tapping foot). For some odd reason, I can no longer flip an egg without these failing arm movements. What the heck is that all about, it's not like flipping an egg is stressful! Then when trying to dice or chop something, I seem to either freeze up or go along willy-nilly until I can't stop or move my fingers fast enough and cut myself. I feel like a circus act at times, my husband will walk into the kitchen at times like these and say, "what the hell are you doing?" (After 12+ years, he still doesn't get it!)
Since I've been dealing with low blood pressure and blood sugar since I was a kid, becoming light-headed, shaky and even passing out is something I am used to dealing with. Therefore, when my meds are wearing off and it's time to take the next dose, my symptoms are similar, so I almost always eat with my meds. My pharmacist says to wait an hour, but it's become such a habit, when I get that shaky feeling, I feel I need to eat something, peanut butter is my go to thing.
I was diagnosed with pd 12 years ago, in my mid 40's, I hate this disease, I hate taking meds! I used to be an active person, so much that I wanted to do in life, now I feel as though I am a puppet to this disease. Though I try hard to start each day with a positive attitude, good intentions and plans for the day, pd has the ultimate control. I never get much accomplished and am so disappointed in myself by day's end. It seems like I'm always waiting for my meds to kick in or symptoms to pass or the strength, flexibility, coordination and balance that a simple task requires or the clarity of mind or energy that fades with the meds and as the day progresses.
I guess it's too much to ask to have mind and body in sync with this disease. So I guess unless I can figure out that secret formula on how to take control of the strings or someone discovers a cure, the puppet master will prevail and I will feel like I have fallen down the proverbial rabbit hole. Thanks for listening, it's comforting to have a place where I know someone understands the challenges and frustrations of this disease. Though they say "what doesn't kill you, makes you stronger", not so with pd...still alive and definitely much weaker!