Medication and Supplement Survey

[alexask]

On this website there are quite a lot of people who report benefit from taking various vitamins and supplements. Specifically Mannitol and Vitamin B1 are mentioned often, but many others are mentioned too. But is it just a small vocal minority or do a significant proportion of people actually benefit? Also for those who do benefit, how much of each supplement do they take and how often? Are there any side-effects from supplements we should be aware of from short or long term use?

In addition it would be interesting to see how prescribed Medications are rated. Occasional stories appear, normally to do with gambling or other addictive behaviours, but how prevalent are these?

Do any supplements or medicines or combination of the two actually slow progression?

In order to try and answer these questions I have created an online survey at crowdwisdomsurveys.com for sufferers and carers to record ratings of supplements and medications.

In addition I am asking people to record their progression of Parkinson's, as well as some other lifestyle questions. This way I am trying to see what, if anything, can help slow the progression, or whether those who just stick to traditional medications, do better.

I would be particularly grateful for those who have tried something, but seen no benefit, or suffered side-effects to fill out their findings, to make sure the numbers are as accurate as possible.

I will, of course, report all the results here.

Survey Instructions:

Enter your email address and a password and check the disclaimer

Fill out the sections - there are a lot of Slider Ratings. If you have trouble using the mouse you can press the tab key to get to each field - then the Left <- and Right -> to change the rating. Or get someone to help you. Similarly for dropdowns the up/down arrow will work.

If there are any medications and supplements missing that you have gained significant benefit from and would like to rate, then please add to this thread and I can add to the list. It is easy to add new supplements and medications for rating.

The code is easy to develop and make changes, but as a result the site takes a while to load up (especially on Android). Once loaded however it is fairly quick. Note this doesn't work on Internet Explorer, but will on modern browsers such as Chrome.

Thanks to Chartist, Jimcaster, MBAnderson and park_bear for their feedback.

[condor39]

I have been completing a similar, but much, much longer survey, every six months for several years by the Michael Fox organization.

[alexask in reply to condor39]

Interesting. Did they ask about Vitamin B1? I made my survey short enough so that most could fill it out fairly quickly.

[condor39 in reply to alexask]

They ask about supplements, it do not ask about any specific ones There are several hundred questions about symptoms and which ones bother you the most, and why. It is completed every six months.

The MJ survey is more to measure progress of the condition

You survey might produce useful information, but on his site will be will be heavily loaded towards people on supplements - there are some people on over 30 of them , which means it is impossible to tell which one does what

Good Luck

[alexask in reply to condor39]

While some people may be taking 30 supplements, I think most start taking one at a time. And I only believe that they continue using and paying for these, if they notice an ongoing benefit.

[CaseyInsights in reply to alexask]

This is not necessarily so: ‘...(people) continue using and paying for these (supplements) if they notice an ongoing benefit.’

My spouse use (on my recommendation) -

(1) NAC and I cannot point to a noticeable benefit

(2) Cucumin and I cannot point to a noticeable benefit

(3) Lithium and I cannot point to a noticeable benefit

(4) Trace Minerals and I cannot point to a noticeable benefit

(5) Vitamin B complex, Vitamin C, Vitamin D (recent) and I cannot point to a noticeable benefit

(6) Alpha Lipoic Acid , CoQ10 & Alpha L Carnitine and I cannot point to a noticeable benefit

For me then that supposition does not hold, as I have not seen benefits and yet have no desire to recommend that she stop such supplements.

Symptom relief is not the only game in town 🌺

[CaseyInsights in reply to CaseyInsights]

...I have seen some symptom relief with amino acid supplementation

(1) Tyrosine/L-Dopa: movement

(2) Phosphatidylcholine/Citicoline: balance

(3) L-Tryptophan/Melatonin(hormone): sleep

(4) 5-HTP: reduction of carbohydrate cravings/appetite suppression

Symptom relief is an important part of the story, but it is not the whole story 🌺

[CaseyInsights in reply to CaseyInsights]

...and here my closing comments on this issue of supplement usage.

Some supplements are tried for targeted relief. For example I was quite taken with the mechanics of how L-theanine could deal with anxiety. I was not impressed and discontinued this after one bottle - 60 capsules.

But bassofspades celebration of this supplement to produce a chill mindset has once again put it on my radar. And it is in fact on the shopping list for a three month revisit.

For the other supplements a theory of the disease process has them firmly fixed on the supplement schedule. 🌺

[chartist in reply to CaseyInsights]

Some forum members reported zero benefit from HDT, but then went back and reviewed their videos that were a Dr. Costantini requirement in order to work with him via email. I remember in particular one member who said he thought he had gotten no benefit from HDT, but when he went back and looked at his earliest videos, the change was very apparent, but the benefits had come on very slowly that he had in fact not realized he had received any benefit at all. Here is a link to the thread where he said this. Changes that occur slowly over months are generally not noticeable to the patient, but other members who responded quickly to HDT (less than a few weeks) readily noticed the changes without even having to review the videos. This was the very reason that Dr. C required the videos because many of his patients who responded slowly , thought that they had not benefited at all. :

healthunlocked.com/parkinso...

It's in the replies section and you have to scroll down to just above the halfway point of the page as seen by the square gray indicator in the scrolling column on the right side of the page. The reply was from forum member "Celtis".

Also, in the 10 mg RCT study from earlier this year that used 10 mg of melatonin in PwP, the benefit after just 12 weeks of supplementing was significant and measurable in multiple areas of PD, but I doubt that many of those PwP actually thought they saw a measurable difference. :

healthunlocked.com/parkinso...

Art

[alexask in reply to CaseyInsights]

Thanks Casey. What I would say is that even if you do not notice a benefit from taking any particular supplement (marking it as No Impact or perhaps that should be no noticable impact), even noting that you take it at all is beneficial. For instance I have a neighbour who is in his early 70's with Parkinsons with Dementia ( which I am not sure is LBD - he has a noticeable tremor). If I can say to his wife -well I have done a survey and 200 people take this, none report any issues and over half see a benefit, that reduces the risk to them of taking that.

[LauraYu in reply to CaseyInsights]

Hi Casey, I am interested hearing that you take Phosphatidylcholine/Citicoline for balance. Do you take both of them together? At what dosage? My balance is so bad currently, I am desperate to get any help! Thanks a lot! Laura

[CaseyInsights in reply to LauraYu]

This is what I used initially when my spouse complained of ‘feeling like a drunken sailor’

amazon.com/dp/B00AESD5CI/?c...

Added this some time later when I unraveled the differences between the different choline supplements.

amazon.com/dp/B004JO4EFU/?c...

And I would recommend that you use both together. Start with the recommended dose on the packages. But feel free to experiment upwards with dosage 🌺

[LauraYu in reply to CaseyInsights]

Thank you Casey, “ drunken sailor “ is exactly me😂I will try these supplements. Laura

[Hidden in reply to alexask]

They (me included) mostly keep paying for them on the off chance that they are doing something.

[alexask in reply to Hidden]

Fair enough. The other thing about the survey is that it allows people to document how they take something, when they take it and what with. I am just wondering whether with enough people taking supplements that one or two will find a combination of stuff that really works to stop progression.

[chartist]

alexask,

I signed on to take your survey, but quickly realized that in order to fill it out properly, I would have to have PD and I don't, so I have to pass on this one, but thank you for taking the time to put this survey together!

Art