As I searched for his previous posts, I find his username has been removed and replaced with the word ”Hidden.” Gio just explained to me the HU administrators do that when someone has signed off because it’s so hard for them to go back and delete their every post so their username is automatically replaced.
It’s a sad, sad day. He will be truly missed.
(Maybe something’s going on and he will someday come back.)
Thanks for being you, Art.
LUV
Marc
In comparing Art’s last post and all of his previous ones, I have a sneaking suspicion that the last one might not have been written by him. Art’s writing had always been word-perfect, yet the last post had quite a few punctuation issues in addition to the somewhat agitated tone, which does not ring true to Art’s usually reasoned, patient and helpful style.
Let’s wish Art well, now and for the future.
I agree , something is askew.
Good catch, SkyDome. I noticed that too.
Totally agree, something is definitely not right. If you are reading this Art, a big thank you for absolutely everything, including your huge heart! Take care ❤️
It is a very sad day. Hopefully, he'll be back soon.
Marc
Has the HU removed all of his posts?
I later noticed that his post are present but like you said with Hidden username. Anyone know why?
Thanks Gio
Do you really believe BIG PHARMA would have left Art alone? His latest post IS NOT HIM! Lawyers can cost you lots of money. Who knows what threats imposed on him?
Avatar gone. Hidden? Is it joke Art? You have been such an inspiration to all of us with your knowledge and courtesy in answering our questions. Yes, we are adults, and we know you are not a doctor, but in this cruel PD world we have become our own doctors. No doctor of ours IS WILLING or KNOWS ANYTHING about HDT and its therapeutic effects.
Hope to see you back on HU SOON!
SAFETY FIRST, of course, but I do hope the clinical trial will be funded by MJFF, or would it????????????????????????????
Thank you, Marc and Gio, for sharing the information of HU policy of "hidden" . I have always wondered why somebody would sign "HIDDEN".
My understanding is that we are each entitled to delete shares and posts that we have written. On the PSP site I have found that has been done more than once.
I am/was grateful that Easilly did soooooooo much work for us. I am grateful that when he decided to delete; he shared at length his reasons. Now, we will have to do our own research and search past info from past shares on Vit B1hcl.
Yes, I give a great deal of thanks/gratitude to Easilly for all his work and contributions.
I agree, something is up. Either he's just had enough with all the questions, many repetitive, and it has taken over his life,,,,or someone has had a word in his ear, I gather if he's based in the USA where you can be sued for anything he's decided to play it safe. And as for our Dr or specialist being involved with B1 or other ways to improve your life that doesn't end up putting money in big pharma pockets - forget it! They don't know what they don't know,,,I know more about B1 and mucuna for example than them. They are taught to diagnose and prescribe and only - the lucky few and I mean few, who have a health professional that is listening and working with them as they take control of their health, their bodies, you are a minority. That's why HU has come to be what it is, HU has been instrumental in contributing to my husbands improvement. Art you will be missed we all hope you are well and maybe you just need a break for a while and let other things into your life, understandable and best wishes.
I find Art's SafetyFirst post out of character. It's just not like him. Does anyone have a valid email contact address for him ? Surely Dr C or Marco.
I don't take thiamine, so far, but had looked at his posts for information. I did feel there was someting strange with his last post. I know he was trying to get an important message across, but he repeated the same words many times - it seemed very strained. I'm sorry to hear that the thiamine programme has been knocked back, with Dr C's illness, and now this.
Was/is he a pharmacist? I have some vague recall of that. Not on this forum as long as many of you, but agree his last SafetyFirst post rang of legalese, a cover-my-legal-ass type post. I’ve written my share of such caveat-type messages in my career to recognize that tone. Some professions are more liable than others
I will miss his post. Great personality. Sad...
Someone has done a "cease and desist" on him (or the website), or on the website publisher due to him; Question is: who would find him a commercial threat and use financial big-boy leverage to force him out due to inordinate cost to defend his free personal opinions?
I don't think he is a commercial threat. Big Pharma will make almost $500,000,000,000 this year. If everyone on this website were cured of PD in the morning, they wouldn't know the difference and if they did, they wouldn't care. I also don't think this website was involved, because if they were, there would be sanctions against many of the rest of us.
I think a friend, colleague, brother-in-law lawyer scared the be Jesus out of him about a lawsuit -- because he deleted his posts, whereas if he were just leaving HU, that would not have been necessary.
For him the post a thread saying, essentially, you shouldn't fart without your doctor's permission is almost as contradictory as me posting a thread like that.
I've come to believe he didn't write it.
I suspect he is not the author.
Have seen it done from the vantage of my own career experience many times. Slapping him down with a matter that would constitute a threat far above his ability to address happens all the time and at all scale levels. HDT therapy is virtually free and without regulation and without any proven safety hazard. If it were ever taken seriously, it has the potential to bring down many billions worth of installed, invested, earning empires across multiple businesses. Don't fool yourself just because you can't see. Have seen it done, this is no unique case. "There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy."
Oh NOOOO! This is a very sad day. 😥
Art/ easily, was a wonderful resource for me. I stared on the HDT and have had improvements but I have had many questions and Art has been very helpful especially since Dr. C had to leave due to his illness. We are adults and we should be aloud to decide who we choose to get advice from. People come to this site, HU, to get advice on a medical condition. Nowhere on this site does it say only people with a medical degree are allowed to respond, nor does it say anything about who can and can't respond to a question.
I was sad, but now I am mad.🤨 It is not fair that he is not able to respond with his current user name, easily. What ever happened to Freedom of speech?
Easily, Art, if you are able to please come back......😥😟
It's akin to the death of a loved one...aren't there 5 stages of grieving ? Art is probably devastated too....where did our Robin Hood go ?
I am not sure that all this paranoia and conspiracy theory is helpful. With all the things that have been said about him I would be surprised if he ever came back.
Move on and become the new Art.
It's been an outpouring of sadness and well wishing. Some of us feel the thrust of the thread is not consistent with everything else he's written which is understandable because he deleted hundreds of hours of work. There has to be a reason for that.
Well, how do we know whether the original Easilly was ever even a genuine person? We don’t really know anyone here on this forum yet we’re just making assumptions.
???
Some of us do know others. I've met several other people in person. I've exchanged private messages with Art many times. Take my word for it, he is a person.
This forum will be at a great loss wthout Art. He was so informative and sounded like a wondeful person. If anyone knows what happened to him please let us know, We all miss him.
Hello MB
I would like to convey a private message to someone on this site.
Suggestions....
Thank you.
If you click on their avatar or username, it will bring you to their profile and in the upper right-hand corner is a link that says "message."
Thank you
What a loss! We have all come to rely on Art for careful, knowledgeable and compassionate attention. He must have spent many hours responding to question after question, a generous, generous labour. I, for one, would like to say thank you Art. You are one of those who make a difference in this world.
We lost Silvestrov some time ago. Now Art. . . Think about it. Two very knowledgeable and helpful people gone.
Yes, but I have a feeling they are watching us from afar. We are, after all, an addictive group.
Very sad to log in today and see that Art is no longer with this forum. I would like to add my name to those of you that will miss him. In the short time that I have been a part of this forum he has been a caring person that many of us have looked up to. Art, if you're reading this, I hope you will come back and hope you are well.
I dont see why the HU admins would want to delete all previous posts. If/when I want to no longer participate on this forum, why would all my posts need to be deleted? Seems that I should be able to choose either to "delete/hide" all previous posts OR leave them all AS IS.
I am so sad 😭
Please come back. You hv been so encouraging when we were lost.
He is unable to come back, but I know he is still watching and it saddens him to not be able to help.
I have a question: why should we worry about someone or something (yes, “something “ maybe even a bot or a troll) who conveniently disappeared from the site after freely dispensing “advice “?
Easilly wasn’t a Parkinson’s sufferer, or a Doctor or a caregiver. If one is purportedly simply on this forum for some supposedly altruistic reason, then , he or “it” or she has really no vested interest in our outcomes. So, “it” had every right and reason to leave abruptly and unannounced. I am sure that the disappearance of this entity is painfully emotional for some of you. However, have you asked yourself what would happen if something went wrong after following a scientifically unproven protocol advocated by a doctor who is in Italy and perhaps will never be able to offer advice anymore after suffering a personal tragedy or perhaps provide context to other doctors. Or do you think that you can point your fingers at “it”? Do you think you know enough about “it “.
Now before you say that this is not true and that I am disparaging the motives of a compassionate “it,” put your hands on your heart and ask this question: “how many people are really sympathetic towards us suffering from this terrible disease?
I know I lost my friends and family seemingly overnight after formal diagnosis. How did you fare?
So sorry that you apparently lost your friends after diagnosis. Perhaps they felt inadequate and unable to help so kept quiet. Many people are like that. If they really disappeared because of your illness, then they are not worth keeping. There are people on this forum who hv benefitted from B1 therapy without any meds or have improved because B1 works in synergy with the meds. Most importantly us to have compassion. What therapy or meds what one chooses is up to your own conviction
Excellent reply. I agree. Not too many people,(and, unfortunately, including some medical professionals), show much sympathy, for how I suffer, from both PD & Cerebellar Ataxia. Once I got a formal diagnosis, I found out who really cared a hoot about me, and who didn't. Compassion seems to be a lost art, I sometimes think. So, the support we have with each other, who also suffer with PD, in this forum, is valuable, and I have found that, unless one has actually experienced being one who has PD, or, perhaps a caregiver of someone with PD, that there is a lack of compassion, and understanding, of the disease process and ramifications, from many people.
malayppan,
You close your argument by posing the question, "how many people are really sympathetic towards us suffering from this terrible disease ?" Not enough, but that doesn't mean art wasn't. You, and many others, are disappointed by the percent of people who aren't sympathetic to us. Understandable. I'm sure we all feel frustrated by it. But that's the way it is and that doesn't make them bad people.
Essentially, you're casting doubt on whether or not Art is a real person because you don't get enough sympathy and even if he is, he is not likely motivated by altruism alone and you support that by connecting his leaving abruptly with his being "unvested." There is no connection between those 3 things. A lot of people leave this forum abruptly. It's not a reflection on anything, not to mention, there is no characteristic that applies to all people but it seems to me, like a a cynical view.
I find satisfaction in knowing that the world is filled with gracious people who do things and help others for no other reason than to be helpful -- yet, you make it sound improbable, if not impossible.
I'm satisfied that Art is a real person and spent as much time on this forum as he did simply because he wanted to make the lives of some PWP easier.
Marc
I agree I think Art May have begun at first as many of us seeking information. He mentioned quite a few times he had friends with PD that he was helping. As time went on you get to know others on this forum and he quickly became a valued member of the group. He was caring and kind and will be missed. 💕
I neglected to answer your specter of, "what if something goes wrong with an unproven protocol?" position. I dare say 80% of the nonpharmaceutical things taken by people on this forum are "unproven." (Sounds like you mean FDA approved.) Since naturally occurring substances cannot be owned, much of it will remain "unproven."
Since we can find any study to support any conclusion, you might argue that everything I take his "unproven."
Everyone on here is an adult. If they put some vitamin B1 in their mouth and something happens, it's not Art's fault -- is it? Otherwise, we're not taking responsibility for our own decisions.
PSS. In other words, the proposition that Art may not even be a real person is "conspiracy theory" level bizarre.
I think that HealthUnlocked needs to do a better job of “vetting “ its database. We shouldn’t have to speculate. Despite the social network nature of this forum, we don’t have a verifiable “connection” to each other. I know you have said before that you have personally met some of the people on this forum. It seems to be the exception than the norm.
But I get what you are trying to say. We both are having a conversation here and yet we haven’t met or know much about each other.
A person is of value to the degree that he is helpful to others. Art was one with his great experience acquired after a lifetime of successfully treating a his very painful chronic illness, as himself explained here on HU in another section where he made his contribution. There he was praised by the moderators of that section. This is why he knows suffering well and loves helping people and has been able to do it with respect, kindness and patience, as few in the world.
Any DBS prep advice?
turimec
leaning to left when walking
Mannitol and B1: What’s going on?
