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Medication daily or only when you think you will need it? So many questions.

I was diagnosed with Parkinson's 2 years ago after having a DAT scan. I lost my left arm swing, suffer from rigidity, and have trouble with my left leg. My Dr. put me on Carbidopa/Levodopa. I never questioned the 3 times a day schedule I was given, and I have never missed a dose. What do you do?
Like many of you I suffer from side effects, sIeeping, nausea etc. When I saw my neurologist a year later and after checking me out said I was doing great and keep it up. Added Modafinil to help with my sleepiness and that was it. How often do you see your neurologist?

I am 59 years old and recently retired. I have always been a go getter kind of person. Up beat, positive. Now, not so much. I am doing all of the things we are supposed to do including exercising like crazy. I used to run short distance races like 5K,10K, and even a couple of half marathons. Due to my gait and left side stiffness I am unable to run longer then 2 min and walk 2 min even with Carbo/Levo. Getting to 2 miles is the goal but so painful. Recently my meds wear off before my workout is over and I can hardly move my left leg. I was told that when you exercise it metabolizes faster? I don't want to keep raising my med dose just to move better. I already have symptoms of dyskinesia at 3:00 and 7:00.

I know all about how to take the medications and to avoid protein early in the day. I follow a strict schedule and have never changed because I thought I had to take the meds daily and on time. I take them at 7:30, Eat between 8:30-10:00, wait 2 hours, take next dose at noon. Eat between 1-3. Nothing after 3 and meds at 5 wait to eat till 6 and that's my day. I hour before eating, 2 hours after eating was the direction given to me.
So you can see I'm a rule follower, but now questioning if I should be. To be honest, in 2 years I've never stopped to see what I would be like without the medication.

  1. First of all , I commend you for being so vigilant. To never have missed a dose is remarkable. I would discuss with your neurologist the possibility of putting off a dose by half an hour or so if you are not showing any symptoms of off time to see the results. I certainly would not recommend experimenting without a discussion with my neurologist
    especially if things are going well. Let us know how it goes. This community cares about you. Thea DeStephano Community Team Member

    1. Thank you

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