When posts are removed as a result of a complaint it would be polite to tell the person complained about who has complained and on what grounds the complaint has been upheld. Otherwise reasonable discussion and comment can be anonymously suppressed.
When I first come across this PDS web site about 7 weeks ago I was elated to know that here was a forum where PwP, their carers and anyone else, could exchange their points of view freely without fear of offending anyone. As I have got more familiar with the content I now realise things are not quite as I thought, even though I am still grateful for the opportunity to participate. It is clear that rudeness and deliberate causing offence should not be tolerated as no positive progress is gained from such action.
What I hoped for when coming here was to find a cure for my PD; a tall order I know. If I could not find a cure, then I wanted to stop its progress. If not stop it, I would want to slow it down. Sadly, despite some positive reports from PwP taking mainstream medication, there appears to be more people having a difficult time taking the same. Nowhere, have I remotely seen the possibility of meeting my hopes through conventional medicine. What I do see is the distinct likelihood of feeling unwell whilst possibly improving one or two symptoms. At the risk of seeming ungrateful, I want a little more!
So, it is with disappointment that I find some of Chewexpert's posts being removed without explanation. As a participant in Chewexpert's PiP I am hoping to achieve at least one of my above aims. Are his suggestions about taking folic acid, vitamins B6 and 12 any more extreme than someone else suggesting I try an NHS allopathic medication or eating broad beans for example? By some of the comments I have seen here I, and others, could be forgiven for wondering if the PDS is 'in the pockets of pharmaceutical companies' judging the apparent bias against him.
Please, let Chewexpert continue to have his voice here. I am sure nobody reading his comments feel pressured to follow his regime; certainly I did not.
Personally, I have had enough of 'nannying' this Christmas about being careful when handling christmas tree baubles and advice not to give children alcohol and so on. When it comes to me and my PD, I want to see everything 'out there' and make up my own mind. In this, I think I am far from alone.
i totaly agree with you adrian xx
And so do I.
Sorry guys but I disagree
chewexperts advice can give the wrong message to carers and pwp and also younger family members.
This came about in my mind when a young carer was concerned her father was not taking his meds. the 1st response was chewexpert who in fairness did not answer the question raised. the 2nd and 3rd posts were the ones that answered and offered advice.
* did he feel sick?
* had he been asked why?
Without knowing if the person takes meds (that are not for Pd) that are compatible with the regime for example diabetic medication. Then that could cause more distress and ill health than any Pd meds.
That is my own opinion based on the information I received from chew and my own medical background and use of both Parkinson's and nhs choice website.
I posted this once and it didn't appear so I apologize if it now appears twice!
I feel that everyone should be able to give their opinion on the forum but agree that it sometimes difficult for newcomers to distinguish between NHS approved treatments and alternative treatments due to the way the forum is organized. When I asked my question about trihexyphenidyl it was lost in the argument that ensued about the merits of Chewies treatment. Having been a member for some time this did not surprise me as I have seen many posts hijacked in this way. I was disappointed that I only had two answers to the question posed but know it can be intimidating for "quieter" members of the forum to post in the midst of an argument. Maybe we should have a section for Alternative Treatments and posts relating to them could be posted there (or moved there by admin) rather than being deleted.
I should think that the majority of PwP or carers are over the age of 21 and if they are able to use a computer they must still have a few brain cells left.
Assuming that much, surely they would check with with their own GP first before taking any thing.
Having said that, the supplements suggested by chewexpert, are just that, a food supplement, and not a drug, as far as I am aware.
Please feel free to correct me if I am wrong about that.
Chewexpert does not suggest that you to stop taking your prescribed medication. He does say that you might be able to reduce the amount of your prescribed medication. there are no promises.
I understand and respect your concern Tina.
Having said that, if I thought I had the answer to some ones constant suffering, I would want to tell them.
It follows that I am prepared to listen. And choose for my self.
I am no great scholar, just an ordinary person. But I think of myself as some one with two feet placed firmly on the ground, or the used to be. They still are in my dreams,at least.
I hope you had a lovely Christmas,Tina and wish you a happy new year.
Tina, I have read your post above, but have to admit I did not fully understand the point you were making. Perhaps I missed out on some information in a previous post.
However, I would like to say this: there will always be people who do not understand the effects of their medication, both allopathic and alternative (nutritional in respect of Chewexpert's theory). In my opinion, we do not always know the 'right questions' to ask. Some of us have been 'conditioned' to think that the neurologist or doctor always knows best. There are others who do not want to find out anything about their medication apart from how many times a day do I take it!
Speaking for myself I want to know as much information as I can, but accept there must be a lot more I do not know about and probably never will. Who does fully understand the interactions between medications? My wife has been taking steroids for 24 years and when consulting our copy of Mimms (Doctors aid when prescribing), certainly not all GPs. When you think about it the human body is so complex that it is impossible to know of all interactions of every medication and nutrient (if so, why are some medications and and even the occasional herb withdrawn every year?).
In my opinion, life is not 'black and white', there are many shades in between. Whoever we are, whatever decision we make (even leaving it to someone else to decide, it is still our decision) it is inescapable that we ourselves take the consequences.
With respect the youngest person we know of in the UK with Pd is 12. One of our members was 8 when diagnosed that person is about mid 30's now. So we have to be careful, what we sat and how we say it.
chewexpert said his treatment wasn't expensive, well, I know someone who is following the treatment and it is very costly.
thanks for responding and hope you had a good Christmas too.
I agree life is not black or white and we are our own experts re Pd.
however I do feel that advice handed out on this forum should be friendly, helpful and inviting so that PwP and carers feel they can return and ask anything they want.
I absolutely agree with you.........
I feel likewise.
What are you agreeing with Mauli?
Tina just agreed with what Adrian had said!
Your post seemed to imply that they were in conflict.
No conflict here Pokermid, only a friendly debate regarding
Chewexpert's PIP. Some of us agree, some reserve judgement, and it would be nice to keep it that way.
We all have our own opinion, I can learn more this way than I could from any book.
I only have to read Tina's & Adrian's Postings to know I would lose any knowledge contest.
I have to make my decisions from gut instinct, personal experience, digging about, and asking around.
Then after a little thought, make a decision.
I think that it works 90% of the time.
For me anyway.
Happy new year.
Sorry to Sejveg, but it was my understanding this posting was listed under the heading, "Removed Posts"
I obviously did not dig deep enough.
How ever, I am sure any one who read your question, and felt they could help, would have posted.
Hi Kvell, thanks for the polite call for me to keep my nose out but I have a keen interest on removed or deleted posts.I have had 50-60 of mine go missing, so I think I will stick around and reserve my own judgement thank you! And I do realise that Chewies PiP was the catalyst for this thread.
Nonetheless, the thread heading says removed posts and that is what I am addressing. As for answering Sejvej's question about hi-jacking of threads, well, such is the nature of the beast.
One interesting thing will always lead to a more interesting thing.
Only yesterday, I had several posts removed from the 'Underwear' thread, and I fully understand the reasons why. I was just trying to inject some humour into a topic that had only one reply. I misjudged the seriousness of the question and the resulting furore that surely followed.
So when I glanced over this thread (all over), I was just keen to find out exactly what Maulihua was agreeing with Tina with, so absolutely!!!
Hello to everyone reading this post,
I am a little bemused by the talk of conflict between me and anyone in this thread or anywhere else on the forum. Whilst communication is difficult at the best of times; it has never been my intention to appear not friendly or unhelpful so that people feel they cannot respond to my posts. However, it has always been my intention to be constructive and direct when I write, that is my style, just as Kvell 'treads carefully' and Pokermid 'tell it as it is'! That is not to imply that I am always right for my experiences in life have taught me otherwise.
Moreover, in my opinion, not too much is gained either when we only communicate with platitudes, but much is gained when we speak openly and honestly with the intention of making progress for all concerned. Some people 'open their hearts up' on this forum and that is a brave thing to do, but when they want a response they cannot expect to be told only what they want to hear!
I do understand this though, communication requires a giver and a receiver and it is not always the giver who is being offensive, frequently it is the receiver who takes offence where none was intended.
I have just re-read my posting above, and you are right, my wording
could be taken to have the meaning you suggest.
I can honestly tell you it was not written with that in mind.
Don,t get me wrong though, provoked enough, you may find I could give even you a run for your money.
I just do not see that there is anything to gain by up setting any one.
I like to listen, and learn, and if I am able, which is not often, offer a little help.
If I have an opinion, it is just my opinion, I like to air it, but I do not expect every one to agree with me.
I know my limitations, and I find life goes smoother if I don't pretend to be something I'm not.
It seems to me, you have a mind which operates with precision on all four cylinders, and long may it continue, you would be missed if you were absent.
I am not creeping, not my style, I will just tell you how I see it.
I trust I have not said any thing this time, that could be taken as, Keep your nose out, if so, that is not my intent, If you want to join in, please do so, You will be hard pressed to upset me. I probably wouldn't even know what you were talking about ,any way.
Happy New Year Pokermid.
Hi again pokermid,I did notice that your postings had been removed from the knicker subject, It did bring a smile to my face because I could imagine the content.
I am not aware of your age, but for some reason when I was in my younger years, the fellers refrained from swearing, and telling what I think of, as dirty jokes, etc... in the presence of the ladies. And I am from the bottom of the pack. I know things are different now, but I am unable to change and I still think in those terms.
I am afraid I cringe when I hear a pretty young girl
f--- & blinding.
I am not putting you down, you are you, and this is me.
I am sure I will receive the rough end of your tongue pokermid, if so you will need to put it in small words so that I can
understand, that is if you want a response.
I will stand by.
Perhaps the fellers should have a men only section.