Maybe I could put my REM Sleep Behavior Disorder out of my mind if I was not taking a dozen supplements. I don't really think I could stop taking them, but started wondering if anybody on this forum was not taking supplements?
Is Anybody NOT Taking Any Supplements? - Cure Parkinson's
Is Anybody NOT Taking Any Supplements?
I think there is a very good psychological case for not being constantly reminded of one's condition by pill schedules - until necessary of course.I have just started Rasagiline - only the one pill in the morning. I take mannitol before bed like a bedtime routine. And vitamin d most days for all sorts of reasons. And probiotics most days (been taking so long I figure it must be ok to miss a few days here and there!)
Dietary mods for constipation - linseed etc but as part of breakfast.
I have other supplements on my list to try - I'm sure I'll add more - but I do believe it can affect me adversely to be over scheduled. While I'm fortunate enough not to have to.
I try to keep the number small and I add and subtract incrementally and slowly. I have tried to identify through testing the absolute minimum # that are indicated as missing by testing: so that is vitamins D3 and B12. My neuro will do a metabolic panel once or twice a year so we can keep an eye on the obvious ones. Over the last five years, I have tried several other supplements...some suggested on this site..I give a new one 2-3 months (though have dumped some in a few days due to negative reactions). I do experiment but try not to run two experiments at the same time so I can see the effect of the single change. Keepers from this process: melatonin, magnesium glycinate for sleep; psillium, and flax seed for constipation; along with many dietary changes. Sadly, B1 makes my tremor worse and my initial attempt at Mannitol was a disaster...though may try again.
I do not take any supplements at all.
I respond well to Prolopa (the Canadian version of Madopar) , under supervision of a Movement disorder Clinic. My condition has been stable for almost two years.
If any supplement is proved to be effective, I will certainly take it , but a sincere, fervent belief in a particular supplement is not proof.
There must be many more of readers of this site who do not take Supplements?
I do not take any. B1 sank my blood pressure dramatically, which was a blow.
I take D2, K2 and Magnesium Malate. Plus eye health tablets with Lutein and Zeaxanthin. A good company called Time Health. I only have the sight on one eye so naturally want to look after my good one. And recently on my second bottle of Liquid Curcumin tablets, in black bottle. They're are supposed to help with inflammation. I've read up on them and they seem to be working. The company I use is called Vivanta. I like to pay a decent price to get good quality. Many in H&B have fillers in. I have B12 in a spray that I use once daily to top up my B12. Boron too, as that's supposed to help our joints. Whether any of these work I've really no idea, but live in hope they help.
I get so confused with supplement, when you listen, read anything about them I feel as if you should be taking all of them for all different reasons. My husband has only just been diagnosed with PD. He has been prescribed with 3 capsules of Madopar 50/12.5mg a day. He has been taking them for a week so early days (he is Already prescribed 1.25 Bisoprolol, 5mg Finasteride, 100 mg Levothyroxine for other health issues). Previously to PD diagnosis I have been giving him B12 B9 Vit D, Tumeric curcumin magnesium supplements ...I’ve also got him having acupuncture in the hope it will help him with his balance, he can’t walk without an aid ! I’m wondering now whether to stop them and just keep him on prescribed medication.
I only take Emergen C on a regular basis.
These are things I need take about 2 - 4 times a week:
Healthy Chocolate
Coconut oil
Ceylon cinnamon
Listed below are things I take occasionally:
Krill oil
Vit D3
Protandim
Turmeric
These things I tried and didn't like:
B1 - made tremors worse
Probiotics, including the one with P128 - made tremors worse
There's probably something else but I can't think of right now.
Keep fighting! 🥊
Debbie