Anyone here who don't have 'off' periods?

[kaypeeoh]

Just curious. I have some PD signs but I don't have off times. Is that common or no?

[Hidden]

I consider my condition free of off times

[Oceanflow]

For me that was the case only the first two years but I was medicating and the medication was doing the job, keeping me mostly “on”. After that I could predict my off times.

[Dap1948]

Just a bit of a tremor sometimes when meds are due.

[grower]

After 6 years (since diagnosis and on meds) just starting to feel the off times

[Larrydds]

I do not experience off times, I hope that continues

[DrewE]

I am in agreement with the others. I am 6+ years post diagnosis. I didn’t start taking c/l until I began showing tremors. Began with one pill 3x/day. After a couple of years I had off times before it was time for my next dose. The doctor upped my dosage to 2 pills 4x/day. After that dosage started to allow some tremor to break through before it was time for meds, he prescribed one pill of Entacapone each time I took c/l. Entacapone extends the effects of c/l without any apparent side effects. That is where I am now.

Be safe.

[Gioc in reply to DrewE]

if I were you, I'd have a caregiver prepare the pills, it's safer

[sharoncrayn in reply to Gioc]

Amen

[marnegro]

It will depend upon the progression of the disease and it’s different on each PWP. At beginning of the illnesses your main source of dopamine still the one produced by your own body then you supplements the shortage with drugs so you won’t experience off periods other than the symptoms made you seek medical evaluation ( subtle finger or hand tremors or balance issues, etc). Thereafter, as the illness progresses and you still loosing dopamine producing neurons the equation changes and then your main source of dopamine is drugs and the less the one your own body produces but the shortage is too much to keep you functional or moving like you did before. It’s known as the “off time” and is quite difficult to predict or manage because duration of the medication varies from patients and is affected by several factors like the consumption of protein, stress, if you slept well or not and even if you are very constipated as the slow bowels movement will cause low absorption of the meds too. The off time is the result of the inability to maintain the dopamine levels at the optimum ( not too much as will cause dyskinesia and dystonia, not too low as will not relieve most symptoms) and some days you will hit the target ( reaching the perfect timing not to let the dopamine levels drop or rise too much) and some days you won’t for the reasons explained above, among others. I hope this will help you to understand better the disease. It has been my experience during 14 years since diagnosed with PD.

[DrewE in reply to marnegro]

Well stated and accurate as l understand this capricious disease.

[Xenos]

I wonder if I am not OFF all the time, meds or no meds...

Bradykinesia, freezings, lack of motivation...

[kaypeeoh]

Well it's been a year, I take rytary TID and recently started memantine SID. I still don't know what the #### an off period is because I don't seem to have them.

[jimcaster in reply to kaypeeoh]

An "off period" is simply a period of time when your medication isn't working. You and I don't experience difficult off periods because we are relatively early in the process and our medication works regularly and predictably. We are fortunate.