NEW HERE? BE CAREFUL: I noticed a few new... - Cure Parkinson's

Cure Parkinson's

26,583 members27,897 posts

NEW HERE? BE CAREFUL

11 Replies

I noticed a few new people, I just want to be sure they understand. I have never observed that any one posting here claimed to be a professional in health care and just because several people agree on something here does not make them correct, nor the information valid. Be careful what you do based on information gleaned from the internet.

This web site is not designed to, and does not, provide professional medical advice. All content including text, graphics, images and information available on or through this web site are suitable for general informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this web site. Never rely on information on this web site in place of seeking professional medical advice.

Other than that Enjoy yourself, it's later than you think

11 Replies
soup profile image
soup

Well said GymBag

Hikoi profile image
Hikoi

THANKS GB.

999---666 profile image
999---666

i'm here for the empirical experiences of others which I value more than some professionals who only have noxious drugs to offer.

luba1 profile image
luba1 in reply to999---666

Agree!

in reply to999---666

Understood, and that is basically why we are all here. You sound able and equipped to look after yourself, however people with chronic disease can be desperate and very susceptible to being preyed upon or inter-feared with by any one who claims they are able to alleviate the afflicted person's or their loved one's pain.

* By "preyed upon ", I mean purposeful scams and money changing hands and I do not know of any incident of this happening here. However this site could be used as a primary introductory contact and lead to communication off site.

* By "Inter-feared with" I mean people giving advise that could be dangerous to someone that has a higher level of severity of the decease. Example : Statements were made that one did not need to take medication if a type of exercise regime was followed. A elderly care giver reduced the medication her husband was taking , who then fell.

Confusion, misunderstanding, not enough warnings, misapplication, blind hope, desperation, etc. can lead to damage done. A similar warning could also be given to those people giving the advise such as:

Be careful when giving advise, you may not understand or anticipate that people with sever PD may suffer unintended consequence from following this advice or that they may misunderstand your advise that does not include a list of all possible consequences. Confusing? yes, that is my point.

999---666 profile image
999---666 in reply to

hope no one takes my journey as advice, i'm still not sure I ave pd..

park_bear profile image
park_bear

There are no easy answers. There are quite a number of people out there whose lives have been ruined as a consequence of taking dopamine agonists as prescribed by an MD, who were never warned about the potential downsides by their doctor.

dailykos.com/story/2016/03/...

OTOH we have some very well informed people here. What to trust? Links to medical journals are a start, but not the end.

Google Scholar is your friend: scholar.google.com/

So is Sci-Hub: sci-hub.bz/

So if some researchers recommend raising urate levels, you can check for yourself and see that may not be such a good idea. OTOH if some other researchers got good results with NAC, you can check that too and see there does not seem to be much downside.

park_bear profile image
park_bear in reply topark_bear

So to check out a recommended intervention from doctor, researcher, or fellow patient, you would go to google scholar and search on "treatment name" and "adverse effects".

Additional resources from the first link:

askapatient.com/

drugwatch.com

consumerreports.org/cro/201...

I like Google scholar but it tends to go overboard with references etc and it is difficult to get a straight answer.

The lure of Wiki is undeniable, so fast, so easy, they try and they will improve , but they perpetuate old wives tales and often their experts are not, but it is better than the blogs.

Good to see you post Parky

999---666 profile image
999---666

wealth of info sources! take me all day to get through them.

aching to refer you to progress in former ussr... google Russian news then select Pravda.... only two medical stories to peck, one of them promising for movement problems.

wifeofparky profile image
wifeofparky

Thank you. I have been reluctant to post lately because of a response I received when I asked if they discussed their problem with their doctor. I am an RN and I find it disconcerting when some request medical advice but have not addressed the issue with a doctor.

Not what you're looking for?

You may also like...

How to get the most out of a post to this forum seeking advice on treating PD

People often post to this forum wanting advice on how best to treat their Parkinson's. Ideally,...
johntPM profile image

Be careful.....

This happened to a guy that lives a few miles from me.... I'm done helping people. I won't help...
laglag profile image

Parkinson's research journal club on Twitter?

Being very interested in the latest advances in PD research, I have been trying to stay updated and...
SaraRiggare profile image

Contact info for another compounding pharmacy. CORRECTION: I said McGuff'S thiamine was not sterile which was wrong, it is sterile.

I may have scared the be Jesus out of some some of you reporting that the thiamine from McGuff was...
MBAnderson profile image

B12 Adenosylcobalamin Global healing health center, stable in liquid form only.

How to Determine Adenosylcobalamin Deficiency High levels of Methylmalonic Acid (MMA) in the blood...
akgirlsrock profile image

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

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.