Looking for a sophisticated tablets' App ... - Cure Parkinson's

Cure Parkinson's

25,541 members26,862 posts

Looking for a sophisticated tablets' App to remind me I can't eat before Ldopa due time, and then remind me to take Ldopa

enjoy2013 profile image
22 Replies

Hello dear community, happy new year to you all, I'd like to kindly ask your help in solving a longstanding problem: when I'm switching on, which mostly lasts just about 2 hours, I often forget I'm ill and all the restrictions, and I'll end up having a meal a short while before Ldopa due time- eventually even lunch. It's a real disaster, as not only I have a lazy stomach, a gastroparesis (even though I didn't go through the diagnostic investigations), but I have dystonia on low Ldopa. This is the kind of things that can destroy several hours of my day.So I'm looking for an App that will remind me I can't eat on the top of reminding me to take my Ldopa.Or is the solution something different?Thanks!

Written by
enjoy2013 profile image
enjoy2013
To view profiles and participate in discussions please or .
22 Replies
johntPM profile image
johntPM

You may wish to look at two approaches that I use for dosing.

Static dosing: is a regimen where you take the doses at the same time each day. The app below graphs the level of levodopa and levodopa equivalent during the course of the day. Meals are not part of the app, but you can model diet by changing the size of the dose in the model when it is close to a meal. For instance, where you have a model dose of levodopa of 100 mg and starting at the same time a protein rich meal you can change your estimate of the effective dose to 50 mg. Note these are just examples of the effects of diet. Things will vary from person to person. Experimentation is required.

parkinsonsmeasurement.org/t...

Dynamic dosing: is a regimen where you try to take doses when they are needed. This is made difficult because it takes a varying amount of time for drugs to be absorped and the dopamine needs vary from day to day. You try to take a new dose at a time so that its sum with the remains of the previous dose is enough to avoid going below the "off" threshold. I find tremor and stiffness are good leading indicators.

John

enjoy2013 profile image
enjoy2013 in reply to johntPM

Thank you, your charts on your website look really interesting.

I'm struggling with keeping fixed times, but this is what I aim for. I think I have better days in periods where I take my ldopa at fixed times. Thank you for offering the help of those tools. Did you develop them?

johntPM profile image
johntPM in reply to enjoy2013

The data is from the literature. The apps were developed by me. Anyone is free to do what they wish with the apps.

Bolt_Upright profile image
Bolt_Upright

Would "I can't eat before Ldopa due time" signs around your kitchen help?

pdpatient profile image
pdpatient in reply to Bolt_Upright

Absolutely the best way!! Better than putting a sticker on the pill bottle.

Bolt_Upright profile image
Bolt_Upright in reply to pdpatient

Awesome!

enjoy2013 profile image
enjoy2013 in reply to Bolt_Upright

Definitely...

limcheeese22 profile image
limcheeese22

use app medisafe

Buckholt profile image
Buckholt

Designed by Kuhan, from the engaging more than a tremor podcast series and his partner, the App aims to keep better control of on time.

Stay on time with Medication schedule with simple set up, alerts and reminders of what and when to take and records the actual time taken.

Allows daily check ins, rating symptoms and records daily activities.

The interactive dash board shows medication adherence, symptom and activity trends.

Plus other content. Looks good

Parkinson’s On App
enjoy2013 profile image
enjoy2013 in reply to Buckholt

Thanks for your advise, I will try these

LAJ12345 profile image
LAJ12345

maybe an alarm that says you can eat, then train yourself not to eat any other time. You should be eating to a schedule anyway.

And a big note on the fridge and food cupboard.

justhavefun2 profile image
justhavefun2 in reply to LAJ12345

I use the alarm on the “clock” app on my iPhone. It works really well most of the time. I double check the alarm times each morning in case I need to adjust anything,

LAJ12345 profile image
LAJ12345 in reply to justhavefun2

Yes, I think what needs to change is the mindset of eating when you feel like it, to eating only at predetermined meal times. Then the time drives the meds and food and you can’t get it wrong if you have alarms set.

enjoy2013 profile image
enjoy2013 in reply to LAJ12345

hahaha

A green light to eat, that would be some kind of change of mindset… Sounds feasible

And a warning on the fridge…

LAJ12345 profile image
LAJ12345 in reply to enjoy2013

Perhaps if you are nibbling all day it might be part of the problem? Put a container of things you can nibble in the fridge at any time. This would be green leaves, carrot sticks, celery sticks, capsicum pieces, etc. ie non starchy colourful raw veges.

Then if you open fridge and see that and don’t feel like it you aren’t really hungry!

enjoy2013 profile image
enjoy2013 in reply to LAJ12345

Are you able to eat fibers? I'm scared just staring on celery, salad leaves

LAJ12345 profile image
LAJ12345 in reply to enjoy2013

They are part of a healthy diet! You absolutely should be eating them to become well. But your gut bacteria will take time to adjust so if you don’t normally eat them I would start wth eating them lightly steamed and add an ever increasing amount each day. At the same time stop all sugar, then start replacing processed refined carbs like pasta, white bread, white rice with whole grain ones.

We stopped eating gluten altogether.

Buy some white quinoa and if you usually eat white rice start swapping it out for a bit of quinoa. Try gluten free pasta options that are made with sorghum or quinoa or bean (not rice. ) and slowly swap out your normal one for the gf option.

Gradually increase the graininess of your bread.

I wouldn’t do a sudden swap but slowly swap out a portion of your normal diet and start reducing the unhealthy part over a month say, and start increasing the fibre. You will feel so much better.

You will find your food cravings will go away.

Allypally49 profile image
Allypally49

For my wife being treated for parkinsons I use Amazons echo dots 'Alexa" to set up voice reminders, which also sends a txt message to both our mobile phones.

BeedieBird profile image
BeedieBird

I have an eating schedule and stick to that so that it works with my medication schedule which is regulated with reminder alarms which come to me through my Google watch and phone. If I get hungry I'll have fruit or some raw veggies to keep it small or if I need some protein a small bit of raw almonds. I don't always stick to it and if I get hungry I'll look at my watch first to see when my next alarm for meds is. My brain is pretty trained now to do this 'alarm check-in' on my watch. And sometimes I'll just pay the price when I'm out running errands and grab some junk food wherever I can find it.

Nikosmom profile image
Nikosmom

excellent topic. Some of the responses seem more adequate than mine. But for what it’s worth, I searched the App Store in my iPhone for pill reminders and found this relatively simple one that has been helpful but not perfect. I will certainly look into a more targeted pill reminder as well as smart watch.

Pill reminder app
enjoy2013 profile image
enjoy2013 in reply to Nikosmom

I couldn't find this app on Google Play, is it Apple?

Nikosmom profile image
Nikosmom in reply to enjoy2013

sorry you couldn’t find it. I have an Apple iPhone I am not sure what the google store has. Perhaps something similar but not the same. Good luck.

You may also like...

The Marty Feldman look 😛

uncomfortable. I suspect it’s linked to a little too much Ldopa in ones system? I’m not sure...

How do you know when to go to emergency when PD symptoms are beyond erratic?

excruciating. These episodes can last for an hour up to several hours, and they happen now 2 or 3...

How to take sublingual B1

increased my medication which remains at just 200 mg ldopa per day. Yesterday I came across this...

How Much Carbidopa Levodopa After 5-10 Years? Any other meds?

don't quite make it 3 hours without feeling slightly \\"off.\\" It's tolerable, but I'm thinking...

Question about levodopa/carbidopa

since more than 1 year I'm on mucuna trying every kind of brands and dosages. I even tried Qi Gong,...