1ST My meds/Sup coconut oil , CoQ10 , turmeric , Sinemet I take these for my psp. b-12 , asprin ,flecanide , diltizem for my heart condition, I ran out of coconut oil this past Monday today is Wednesday and now I feel bad worst day so far . Needless to say as soon as I can I will pick up more coconut oil . And I will use it ! P.S. For breakfast I put it on my toast 1 slice.

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  • edker, do you cook with it also? How much per day rough estimate?

  • Hi goldcap ,We don't but you can .Maybe a tablespoon per day ( 1 toast )

  • Hello! What is Sinemet Edkor? And what kind of Coq10 are you taking? Thanks a lot

  • Hello Zuzanka2 , Sinemet is what my nero gave me a prescription for my PSP .Its a mix of carbidopa levodopa (sp?) in 1 pill .The coq10 is a mix of two the adult strength soft chew and the gel caps, I take aprox, 1000mg. in 24 hrs. I am about 1 month into this. I might up it soon ? Hope this helps .

  • It helps a lot of people i have heard. My dad used to take this in liquid but it was very expensive and now he takes in capsules. Are you taking 1000mg in capsules?

    All the best Edkor

  • No I mix about 50/50the ones that are for adults soft chew ( gummies ) and the gel caps that are easy to swallow .Be careful swallowing anything if you have swallowing problems because of your PSP.

  • Sinemet is one of the most commonly used medications for Parkinson's disease. Some (but not all) people with PSP find it helps

  • Coconut oil is fine, but actually fish oil is much better for you. Recommendation is to take up to 3 x 3 g of fish oil in soft capsules a day. At breakfast, lunch and dinner. The product I would recommend is the Omega-3 Fish Oil with active EPA/DHA (good for the heart) from Holland & Barrett.

  • Here's my input. Coconut Oil has not been proven as any assistance with PSP. My neurologist at the University is up on all the latest things and says it is not proven that it helps. There have been no clinical trials that I'm aware of on Coconut Oil which tells me something. CoQ10 on the other hand he says has been of help to some, not all, patients who try it. Haven't asked him about turmeric but will very soon. Stay tuned. Sinemet helps some PSP patients, a few, but even then only for a short time. It has dangerous side effects so if you are taking it and it doesn't seem to do anything I'd advise getting off it. We did. I'm no medical doctor but check the long range side effects of Sinemet which are VERY bad in some cases. It can cause uncontrolled arms and leg movements and it if does those are irreversible as I understand it. The type of uncontrolled movements that Parkinson's causes in people like Michael J Fox. They are irreversible once you have them. Again, I'm not a doctor and am only reporting what I have been made aware of. Do your own research on all these things. That's what I do and recommend. Perhaps Strelly or some other person on this site can give more information. If you try something and it seems to be working for you that is wonderful. PSP is so "patient individual" that what works for one doesn't for another. Jimbo

  • That's my thoughts. Try what you think might work. If you find something that works share it with others. In response, I don't think the medical or drug professions would deliberately hold back on some known thing/product that works or not do clinical trials on something that appears to work. They'd find a way to improve it and market it under their own brand and pocket the money. LOL

  • I checked with my neurologist at the University. He said that Tamarac (active ingredient is curcumin) has had an official study with Alzheimer's patients. They found it was not of help and in fact there were some tolerance problems with those taking it. I'm just stating one opinion so check for your self and keep using it if you think it is even remotely helping. I realize that PSP is not Alzheimer's. Best to you and your PSP patient.

  • Interesting stuff. I noted that the words "if" and "may" and "could" appear in the article. I also noted that they did not make the bold statement that curcumin would help/work. Also, no mention of PSP in the article. That may be because the main cause of Alzheimer's and PSP are a bit different. Yes both have some connection to Tau but Tau is much more a part of PSP than in Alzheimer's (as I understand these diseases). As I mentioned, anything is worth a try if you think it will work for you.


  • Jimbo, we are actually in LA and our doctor is at UCLA and from what we have been told there is a lot of overlap in the studies because there is a high incidence of concurrent conditions with PSP presently only with an autopsy.

  • Jim that's all very interesting , My husband has been taking Sinemet from day one seven years ago . he has gradually got. Worse . I kept telling the consultant it didn't seem to help but he insisting on keeping them saying he would b much worse without . . looking back I do wonder .

    they added the patch to it but eventually it affected his skin so I bit the bullet and stopped that . I have also gradual reduced the Sinemet .

    he is hoisted now at all times . he is always worse after taking the Sinemet for. A few hours . I did try stopping them myself gradually he didn't seem any worse but I was afraid that he may still be running on any build up in his system . .

    the Parkinsons nurse told me he might get too slow if I stopped them and o got afraid that he wouldn't be able to swallow or move at all .

    for example I gave him the Sinemet at 1pm he switched off with his head on his chest and jaw protruding until about 4 . He is now sat up and watching the Tv , it will soon be time for the next pill and so it goes on and on .

  • Hello all,

    What about tumeric tablets? which one are you taking? and how much of it? many thanks for your stories and advice. i wish my mum could read it .... In Poland no one knows about this horrible disease and she cant talk to anyone about it. thank you

  • Hi Zuzanka2 I use coconut oil and I take 1 450mg turmeric pill and also take apox, 1000mg coq10. every day At best I feel ok . but I feel something is not working anymore. The only prescribed med . is the sinemet I Take 9x per day. I am not sure what to do anymore. I still go to my speech spec.for my swallowing problems. I am sorry I just feel like crap!

  • my sister doesn't have Parkinsons but she does seem to have any virus that is going about . over the years she has tried all sorts of different things ,. she came across an article about coconut oil and Bingo she tells how much better she feels , she certainly looks much better . might b coincidence of course

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