I’m suffering from terrible off periods between medication doses, the main subject I will address when I see my Neurologist next week. Meantime, I found this video about ‘off time’. It’s answered many questions I had. Well worth a watch. Hope you find it useful.
Hi Dusty 68 Many thanks for telling/posting this link about Off time I have had PD for 14 years and I was having a few problems with my meds. I had to keep a diary for 2 weeks and then send it to my Neurologist and PD nurse, they could not come up with an answer and as they could not up my meds anymore, it was put on the back burner (so to speak) but this like you say answer’s many questions, again a BIG THANYOU for your post,
You’re welcome 
If you are one one of the various levadopa/carbidopa blends, you might want to try adding entacapone into the mix. There is a combo drug that does exactly that and it is called either stalevo or sastravi
Hi mary. My husband like you is 14yrs on with PD and taking Sinemet. He has problems with walking esp in the house, but after 4pm we usually manage a perfectly normal walk for 45mn ? Cannot explain why it comes at this time…again normal around 9pm. Speech is also a problem. Is this the type if things you experience ?
Hi. My wear off shows itself as my body, from shoulders down, just seizing up. I can walk and talk normally, albeit my torso and shoulders become rigid.
I’ve since been given Opicapone to counter this which for the most part, works well. I still get a ‘weird whole body sensation’, not dissimilar to what I was experiencing, but no where near as bad.
I’m wondering whether the Opicapone makes my brain think there’s too much dopamine. Who know’s.
Cheers
D
Hi Joleyn it sound as though me and your husband are at the same cross roads, When I first get out of bed, you would not think that I had any thing wrong with me. 6 00 am take first meds of the day Madopar 100mg/25mg about an hour after getting up my legs and feet just don’t want to move. This goes on till about 2 00pm by then my mobility is a little better. by 7 00pm it is better still, but I don’t have any day time meds left. So then to see me through the night Co-beneldopa 3 one hour before going to bed. Of course these are not the only meds that I have to take. At the moment I have no problem with my speech (touch wood) Last weekend I had a realy bad one, I had my Sciatica fleer up it was, Thusday, GP fully booked could not even talk to one, In desperation I phone 111 The GP later phoned me and gave me a px for Morphine. Which took the pain off. but put me on a high wow!!! dont want too much of that. Hopfully Joleyn I have just gave your question.
