Never let a "pseudo-expert" gaslight you.
You are your own expert.: Never let a... - Cure Parkinson's
You are your own expert.
Written by
SilentEchoes
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33 Replies
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So true. That's why I stay away from doctors, neurologists and movement disorder specialists
when were you diagnosed?
5 years ago
You used to be @Iqbaliqbal if I'm not mistaken, right?
...and since you've stayed away from these people, how have you been managing your symptoms?
I have consulted three neurologists only once at the time of diagnosis five years back. They can only diagnose you and can prescribe a few known medications. They only will increase the dose if the symptoms do not subside. They don't know anything else about the PD. The same hit and trial process can be done by the patients themselves.
Neurologists have to adhere to established protocols. Outside of diagnosis there isn't much they can do, and it certainly won't cure you.
It's called 'Accepted Line of Treatment'
Allopathic / Modern Medicine practitioners do not deviate from it. If they do, then they can be sanctioned / outcast / subject to other actions
But patients cannot prescribe medicine for themselves
Pharmaceuticals are patentable lab created derivatives of natural medicine. Everything thing we need can be found in nature.
Experts can understand the patient experience clinically, but you don't know the thing until you live the thing. Can a male obstetrician ever really know what labor feels like?
We are the experts of our own body. Everyone has a different experience.
Farooqji I also stay away from them. I figured out my own treatment and dosage and what to do to feel better. Working on healing and detoxing constantly. I trust myself and my body more than I trust indoctrinated white coat wearing strangers.
Good. Can you explain a little bit of what protocol are you following
Right now I'm dealing with kidney issues. The premise for me is that neurodegenerative disease is toxin induced. The basic things I think everyone needs is high dose B12 methylene blue and zeolite for detoxification. You build out from there.
sure, i take whole brown 40% mucuna from barlowes with a tiny bit of carbidopa, I’ve posted about this before so you can check it out in my profile. Apart from that I’ve been treating for Lyme and co infections, recently I was finally able to leave the house were i was living for the past few years as it was heavily contaminated with black mold, so I’m detoxing and taking binders. I use a full spectrum infrared sauna 3x a week for detox and to lower inflammation. I’m also working on shielding my brand new clean house ( hopefully) from EMFs( electromagnetic fields) because I did not realize until I moved here that there were 3 cell towers surrounding the neighborhood and a box of multiple smart meters very close to my house. In the end, I’m just taking constant action to address my environment - internal and external- to allow my body to be in a parasympathetic state high enough to for it to feel safe and heal. I’ve been on this journey for many years and I’ve seen great benefit. It is in the end a whole lifestyle change and upkeep, to provide our bodies with the optimal care so they can function at their best.
Remember that unfortunately most people in the world do not have or cannot get enough knowledge to make the right decisions regarding their PD and additional complaints. That probably applies to a lesser extent to the participants in HU, but even here I think it would be wise to at least use your doctors as a sparring partner in addition to your own common sense if you have it. Just like adjusting and optimizing your medication from time to time, so does the choice of your doctors. Try to find the very best! 🍀
Hear hear!
Understandable, but what brought this on?
Are you addressing me the OP?
Somebody named Silent Echoes.
I fully agree. I believe that a holistic approach is required to slow down progression and manage our symptoms. This includes medicine, exercise, nutrition and meditation.
This forum is quite unique as it gives you access to a wide spectrum of knowledge and allows you to become experts in your own condition.
I don't think of myself as an expert, just not going to to sit back and do nothing. Who is a better judge of what works than me. I am 100% on board with B1 Therapy and exercise.....
I love the “ No silver bullet” interviews,and have cherry picked and put into practice an eclectic mix of ideas that are helping my husband.I find the massive gap between British and American medicine a bit depressing.”Find a new consultant” seems acceptable in the U.S. where as in Britain it almost impossible.Both my husbands G.P.,Parkinson’s nurse and consultant have negative attitudes to anything outside a protocol centred on Sinemet,and “ let us know when you get worse” At the beginning I thought they were God,now I realise I know more about what’s out there and effective than they do.It’s scary,but also empowering,because it means we can have hope,which they just cannot offer.
That's exactly the point, empowering the patient and their caregiver, because in the end we are responsible for rescuing ourselves and the sooner we realize this the better our lives will be. Some people just never try, but that's their journey.
It is a tough road.
Not necessarily, there's a workaround for most therapies.
The last visit I had with my neurologist, I filled him in on B1, fast walking, and my ongoing experiments with Sinemet, Entacapone, and Macuna Pruriens. I’ve been seeing him off and on for 3+ years, and he said I really don’t need him, as I probably know more about PD than he does. I can get my GP to prescribe what I feel I need for meds. I agree with most of the sentiment expressed here, and many other sources of information online. A grateful “Thank You” to those of you that post such helpful advice and let us in on what is helping you.
There was a post on this site ages ago linking to a speech by Professor Andrew Lees, a well known neurologist in the UK and since retired, saying that the system is broken. It’s now not run by doctors, but hospitals, universities and lawyers.
A good example of this was told to me by my husband’s neurologist. A neurologist and friend of his was criticised and reported by a regional hospital for prescribing a particular drug for its possible side effects. Not because the patient had this side effect, but because he could have.
Our Neurologist was asked to give his opinion by the “authorities”. He told us that they probably won’t ask again, as his report was 30 pages long. I suspect it didn’t just cover that drug. 😅 He also told us that he had never seen that particular side effect.
This puts doctors in a very difficult position.
Couldn’t agree more.
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