Next week I am going to be in a situation where I will not be able to take my Madopar on my usual schedule for one dose. I normally take it at 2:00 PM. Should I take it an hour early? Or an hour late? As it involves two capsules, I’m wondering if I should take one early and one late.
I have signed up to attend a gong bathing session, which is about an hour and a half long, and starts at 1: 30. I will not be able to disturb the other attendees by taking medication in the middle of the session.
Good afternoon … Our bodies retain a certain amount of the medication. After stopping medication I have discovered it takes 4 days for my body to be medication free after stopping. In your situation I would take 1 pill early & 1 pill later.
Thanks Steve2, that’s what I was thinking, but I do recall my doctor saying timing is everything for them to work properly. I have become a slave to this! It’s only a one off, not like I’m doing it every day.
Hello Artgeek
My own way of dealing with days like this when, for whatever reason, I would not be able to take all my meds at their usual times, I tend to adjust the timings of the meds for the whole day. By adjusting the whole day’s meds you keep the same length of time between them. I usually find it’s works best for me by taking my first meds a bit earlier in the morning when I tend to be at my best never having been a night owl at the best of times. I prepare in advance in case in taking the meds early I may struggle a bit at the other end of the day, so make sure I have food and drink etc available and decamp to my bedroom where I can manage any fallout there might be. Normally around 30 mins is enough. I would say though, that on the odd occasion when I have done this, there’s not been a great deal of difference to how I usually manage the late afternoon or evening. This is what suits me, as you can see Steve2 thinks differently and therein lies the problem with many Parkinson’s symptoms - any number of people can tell you what suits them (incl Steve2 and me in this case) but ultimately you have to look at your own situation and use any replies as a measure for what might suit you. It might be worth doing a trial run if you have a day free between now and the event because decisions can be made based on your own (limited) experience.
Good luck
Tot
I totally agree with fkendall, Artgeek, and in an ideal world this would be the best course of action. Unfortunately we don’t live in an ideal world and have to make decisions differently sometimes. Changing timings is a last resort and should not occur often but you are the one with Parkinson’s and if the text book response just isn’t viable. You are then left with a choice if you can;t get hold of your medical team - either cancel whatever the reason is for needing to change the times or manage it as best you can. so you can do whatever it is you want to do. That’s the reality and only you can make that decision.
Tot
Hi Stamford … I rarely take my medication at the same time each day. The time I wake up varies & I often go back to sleep having not taken my pills. I also often forget my Parkinson’s midday pills.
Thanks, Tot
Interestingly, it was my medical team who told me to ask on the forum for advice. I am getting this reply from my PN and GP all too often now for comfort. It is not particularly reassuring.
This has turned into quite a long post but the issue you raise about timing of meds is one we all have to grapple with because, as I said in my previous reply, in an ideal world we would consult with our medical teams but this is not an ideal world and we have to live with our Parkinson’s in the real world. I thought it worth writing how I see it and why I manage things like this as I do. I’m not asking for you or anyone else to agree, only to say it works for me and may perhaps make others think a bit about the level of responsibility they take for their own Parkinson’s. We are, after all, the real experts are we not?
One of the hardest things for me to understand in the early days following my diagnosis is how different my relationship with my medical teams would be. Before Parkinson’s I rarely had a need to see my GP. When I did it generally followed the same pattern. I would tell him the problem, he would tell me what was wrong, give me a prescription or advice which I would follow and in quite a short space of time would be fully recovered. They would be for the everyday ailments we all get from time to time and would be commonly seen by GPs. What is clear to me now is that GPs are just that general, a sort of Jack of all trades, master of none. They may have an interest in a specific field but it is usually allied to conditions they see most frequently and Parkinson’s isn’t one of them.
I see my consultant and Parkinson’s Nurse once a year with appointments 6 months apart. Unlike my relationship with my GP my relationship with them is much more a partnership after all it is mainly based on what i tell them. That took some getting used to. I have always been able to contact them in between appointments if I need but they can take a few days to get back to me unless it’s urgent. I long ago concluded I basically have to do what feels right for me on a day to day basis because we have to make judgement calls about all sorts of things every day and changing med times or not, is one of those things that you just sometimes need to do. I accept it does take a certain level of confidence to trust your judgement but over time you get to know yourself pretty well and I believe you are then well placed to make those decisions that are sometimes needed if your life is to have some quality and meaning.
The fact is the GP can’t know about every condition in depth, nor should we expect them to especially those conditions like Parkinson’s that is not one they see everyday or in large numbers. I don’t see it as their role to be the main contact in management of my Parkinson’s which is reflected in this link
My medical team know about the condition in depth in medical terms and can give me good advice and we work in partnership, always agreeing a course of action and it is reassuring to know that I can contact them if I have concerns between appointments. At the end of the day however, it is me that is living with Parkinson’s not my GP nor my specialist medical team. It is me who knows what I should do but with the best will in the world, I simply can’t do a, b or c for all sorts of reasons and it is me who is left to decide whether to go with a, b or c or perhaps today x, y or z may be a better option. Going back to my medical team to get advice on that day-to-day is simply not viable. The best I can do is next time I see them, ask their advice in general terms about what to do in those circumstances when the normal timing of my meds isn’t practical but come the day, the decision will ultimately always have to be mine.
Tot