I wrote a critical post in the “The Quality of Posts has Not Diminished” topic by jimcaster.
It was deleted. I assume since someone found it objectionable and then reported it.
If you know anything about this please let me know why you reported it...
Or if you are a moderator, could you please let me know what terms of service I violated...
Never mind... I guess there is no place in this forum for people who support mainstream c/l treatment options...So I close my account and wish you all the best of luck...
I tried to read all of the comments on that thread and I don't remember anything offensive. If whoever wrote it actually left Healthunlocked, that's unfortunate, but it's their loss...
I wrote the post above,,, I wrote the post that was deleted from jimcaster’s thread... i am the poster formerly known as “pdinva”... I closed my account In disgust after my post was deleted... you may say that closing my account was an overreaction, and I would totally agree... Indeed pd has made me a very anxious and emotional person who doesn’t necessarily make well-reasoned decisions...
I dont remember what you wrote Levod but i am saddened that your post was deleted when others appear to have free reign to pass off opinion as fact and make pronouncements about THE way to reverse symptoms, telling people meds are no use, and continually high jacking posts to spread their message.
If the HU administrators are deleting comments because they don't like the content, that is very troubling. Censoring content is a huge disservice to people with Parkinson's.
I have to agree. After getting a lot of good info on this site, there are very few posts that I read, or get any useful info from.
I don’t have a copy of my original post, and I guess I would not post it even if I did (since it was deemed to violate community guidelines). Anyway, this is the essence of what I wrote (adjusted to minimize the chances of someone’s feelings being hurt)…
I have found this site to be a bit discouraging, since I believe it tends to promote unproven alternative “treatments” whose effectiveness is dubious, and any positive results can be most likely be attributed to the placebo effect, and I think it is very sad (and potentially harmful) that newcomers (especially the newly diagnosed) join this site, and are greeted-at-the-door with this kind of dubious advice… (i.e., I agree with the person who said (paraphrasing), “I would never recommend this site to someone who is newly diagnosed.”)
I guess that most of us have at least another 5 to 10 years of c/l being the best treatment available. And I suggest we can better help ourselves, by focusing on ways to improve oral c/l treatments. This includes discussion of dosing strategies that maximize effectiveness and minimize side effects, and also, investigating alternative ways to improve c/l effectiveness, with emphasis placed on safety, and the effectiveness of these alternatives being tested with some form of objective and reproducible measure (e.g, a tap test).
And lastly, and with these things in mind, I would like to recognize johntpm, who I feel is the most valuable member of this forum (see his web site for the tools he has developed; for example, parkinsonsmeasurement.org/t..., parkinsonsmeasurement.org/t....
If you accept advice on the form, do not use very broad generalizations such as "This site" because it includes everyone, ugly and beautiful, wanders attention and is irritating.
wriga, who hasn't posted much lately, is "beautiful".
The people willing to run c/l tests and share their findings are "beautiful".
My view is that we as a community, should be more purposeful, in what we do, and thus become more "beautiful"... This means aiming to make real and substantive differences in the lives of people with Parkinsons... This includes "publishing" tips/gotchas for c/l dosing (or on whatever PD-related topics), holding video web seminars on various subjects (for example how to use johntpm's tools), generating ideas for new tools, actually contributing to the development of these new tools, forming "research teams" with the objective of researching potential c/l effectiveness improvements...
I wonder if this vision inspires anybody more than those simply responding to everyone's person's post with the advice, "take Thiamin HCL" or "walk fast" (which I find a bit maddening).
I hope you are inspired, and you can express your interest (and "beauty") by contributing your ideas on how this site can be made better (and more "beautiful")...
I hear what you're saying, but we are all intelligent adults here capable of coherent posts, so therefore capable of making reasonable judgements and decisions about what information and advice is relevant to us as individuals and what is not. There have been posts I've discounted due to tone, repetition, and attitude--but I've also found there are nuggets of helpful information buried in most posts--if nothing more than to get me thinking about and seeing something from a new angle I'd not considered before.
We are all different people with different belief systems, lifestyles, political views, etc., thrown together by the commonality of a Parkinson's diagnosis which we all acknowledge is a different disease to different people. Add to the mix the PD anxiety and the physical, mental, and emotional stress of dealing with a difficult disease. Things are bound to get reactive at times.
Arguing the merit of an idea is helpful; criticizing or (worse) attacking the character of the person who proposes it is not. Is it even necessary? Ignore the maddening; expend your energies in positive ways. I know my energy level is limited.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
why does an antibiotic improve my PD symptoms BIG TIME
Why is not working the HDT on me?
