What is the "Off" period?

[kaypeeoh]

I read about it often on this website but never understood because I didn't think I had "Off" periods. I believed it's when the PD mediation is wearing off? Is this the same as 'sundowning'? What brought this to mind is a spent a lot of time doing crossword puzzles. The challenging puzzles offered in this magazine are difficult. I think mainly because my 9 years in college was spent devoting myself to veterinary medicine. Beyond the basic courses I never studied music or Latin or literature . All things that end up as questions in crosswords. I can get 80-90% of the boxes but rarely all 100%.

I'll get stumped and put the magazine down for a while. And when I go back to it later in the day I find I can do much of the puzzle. So is this because of taking Rytary? Is the Rytary making me 'sharper'?

And nearing bedtime I can't get a single answer but the next morning I have no problem solving the clues. Again, is that sundowning?

[laglag]

I view "off" time as the time right before your next dosage is due, which varies for each person, when your symptoms start raising their ugly head again. If your meds are timed perfectly then your "off" time is short, but I believe most PwP's have anywhere between a 1/2 hr to an hour of "off" time; therefore "on" time is when your meds are working at their best.

Keep fighting! 🥊

[jeeves19 in reply to laglag]

Debbie. Do you take your second CL before the first has run out or do you wait to be ‘off’ before you have it?

[laglag in reply to jeeves19]

Jeeves, I do it both ways. I usually try to keep it within the hour. If my symptoms start too early, I often take 1/2 an ODT (Orally dissolving tablet) to keep the symptoms from getting too bad. 🥊

[jeeves19 in reply to laglag]

Thanks 😊

[laglag in reply to jeeves19]

Jeeves, when do you take yours and do you believe is the best way?

[jeeves19 in reply to laglag]

Well I don’t really have a best way and that’s why I’m asking 😂. My main issue is that the drugs seem to work for about 2/3 hours but are often compromised as if I eat something, they often fail. And people say it’s protein but I find that many foods affect it. Especially if I’ve had a big meal: that’s a sure fire way to impede them.

[kaypeeoh in reply to jeeves19]

My understanding is Sinemet or Rytary are amino acids. When you eat protein stomach acids break it into amino acids. Rytary competes for absorption with other amino acids. It gets absorbed eventually but takes longer compared to taking it on an empty stomach.

[Hidden in reply to jeeves19]

I am currently experimenting with "dynamic dosing". This is a term I first heard coined my 'johntpm'. It means you don't follow a strict dose timing, but rather try to predict when you are about to go off and take your dose then. If you are good at it, you can avoid going off between doses. The trick is how do you predict? Well for the longest time, I didn't know how to predict, but more recently I have found that a precursor to going off for me is a numb sensation in my right foot, and now most of the time I am able to dynamic dose so that I avoid going "off".

I guess "how you predict" is highly personal (ie, varies greatly form one PWP to another).

[jeeves19 in reply to Hidden]

But it’s frustrating how sometimes the dose lasts for 3/4 hours and sometimes 1/2! This always makes eating something a drag. So let’s say it’s two hours ago that I had a CL and somebody offers me a coffee and some biscuits . I know that it’s coming up to time when the dose will wear off and if I say YES to the coffee etc that will make the taking of the next dose somewhat redundant. So we’re always caught in the middle aren’t we in a way?

[Hidden in reply to jeeves19]

I hear you. I have to follow a very strict diet, and this includes watching what I eat, how much I eat, and when I eat it. It makes planning to eat with others very difficult.

[laglag in reply to jeeves19]

It's very frustrating! Big meals seem to bother me the most, especially steaks. Overall, protein doesn't bother me too much unless I eat a lot of it. Sometimes I eat a snack of caramel rice cakes and they actually help my meds work a little better? And sometimes I take my Emergen C and it seems to make them work a little faster. But, I can't say they help every time. I do believe it does help to stay on somewhat of a close schedule. You might want give the ODT a try and use it for those times your meds only last 2-3 hrs. A 1/2 ODT starts working in about 20 minutes.

[Rebtar in reply to jeeves19]

If you find the magic recipe, let me know. I've lost weight -- 20 lbs last year due to poor sleep and a lot of worry -- I consulted a nutritionist who wants me to eat a lot of smoothies ... and a lot of healthy fats. I did a big smoothie this AM with about the same protein and fats as I usually have in the AM in my steel cut oats ... and my second dose didn't work at all! I don't have nearly as much of a problem with the steel cut oats!! Go figure. I agree, it's confusing and frustrating.

[kaypeeoh in reply to Rebtar]

It's the opposite problem for me. Since the PD Dx I've gained 30#. Before getting sick I was a distance runner. Back then whatever I ate got burned up. I averaged running 50 miles per week for 35 years.

[Hikoi]

On and off are uniquely Parkinson terms. They are connected to medication. In the early days of treatment people have enough dopamine neurones for this not to happen. After a number of years some people experience on periods when their meds are working and off when the meds are not. These may be motor on and offs but also all the other symptoms that are improved by c/l. So yes what you notice could well be due to off periods. For example I shuffle, have back pain, my thinking is slowed down and I have speech problems when I am off. I am much “sharper” when I am on.

[Mapleshade58 in reply to Hikoi]

My husband is the Pwp. We didn't think he had off períods. But after 6 yrs he has started getting restless/anxious when it's near time for more pills.

Re: the crossword puzzles. I find that when I set the puzzle down for several hours and come back to it the next day I can answer some that I had no answer for previously. Maybe our brains work on solving those in the interim or maybe it's just the fresh new look.

[Hidden]

"Off" time is when your Parkinson's meds are not giving you relief from Parkinson's symptoms.

"On" time is when they are giving you relief.

If you say you don't have "off" times, that implies you don't have any Parkinson's symptoms (most importantly bradykinesia and at least one of the following: tremor, rigidity, which are commonly defined as the diagnostic criteria idiopathic Parkinson's Disease ), and it follows that you don't have Parkinson's disease.

parkinson.org/Understanding...

[kaypeeoh in reply to Hidden]

I don't have bradykinesia or rigidity. I've had a left hand/arm tremor for at least 4 years. Unresponsive to Rytary. Also have poor hand writing unresponsive to Rytary. But I had a DAT scan that confirmed PD.

[Hidden in reply to kaypeeoh]

Hi KPO,

I am not making a judgment on your diagnosis, but I think a datscan is not perfect (does not always yield the correct diagnosis).

[kaypeeoh in reply to Hidden]

I think other conditions like MSA will show on the DAT scan. But these are much worse diseases. Again, I don't have signs suggesting much of anything.