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!
Looking for a sophisticated tablets' App ... - Cure Parkinson's
Looking for a sophisticated tablets' App to remind me I can't eat before Ldopa due time, and then remind me to take Ldopa
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
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?
Would "I can't eat before Ldopa due time" signs around your kitchen help?
use app medisafe
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
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.
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,
hahaha
A green light to eat, that would be some kind of change of mindset… Sounds feasible
And a warning on the fridge…
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!
Are you able to eat fibers? I'm scared just staring on celery, salad leaves
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.
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.
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.
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.