Some disturbing emails from members of this site. In terms of my language, I am English and we all speak that way - no swearing, of course. In terms of everything else, I, like you, have an astonishingly nasty illness that will probably kill me before Christmas and all I was doing was share some information on a recognised vitamin supplement - not "snake oil" as one of your dimmer members suggested - that has helped alleviate some of my symptoms, arrives at the same conclusions that every neurologist I have ever seen shares and I have absolutely no association with the company. I know that PSP messes with temper but keep yours to yourself. You are all blocked and I don't trust PSPA at all. All their money from big pharma, doubtless
I have received : Some disturbing emails... - PSP Association
I have received
42 Replies
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Sorry yopu feel that way, bye bye.
AVB
He has gone AVB
X
I tried to engage him in the reasons he felt that a vitamin supplement would help with PSP and he said that he was 'uninterested in the science'. Well I think that anyone with contact with PSP suddenly becomes very interested in science in all its forms - sometimes of necessity as doing your own research is the only way of finding out anything.
But yes a sad episode from a person who needs help.
That was so weird x. Yvonne
I'm flabbergasted.
Must admit i heaved a sigh of relief. He kept on about a suplament that was for neuropathy (nerve pain) that it had reversed his psp (neuro). It broke my heart that someone could be so cruel as to give false hope to so many people. Janexx
For someone who is end stage Psp you have amazing cognition and perception ! Is this due to to the vitamin ? Mum is late stage and no way could she type or even think like you ( contractures)
Oh I have just seen he gone
You appear to have mistaken me for an American. I too am English, formative years in Southeast London (Peckham) and worked as far north as Glasgow and south in Southampton Docks and lots of places in-between. I would contest your assertion that "we all speak like that", not that it matters, ones initial nationality is an accident of birth.
When my wife was eventually diagnosed the PSPA were the only helpful source of information available, our local GP was totally unaware of the illness and having exhausted all the things he did know about referred us to a neurologist. It is not an easy thing to diagnose and we were told that only following examination of the brain, post mortem, could one be sure. Which brings me to the point of this post, if vitamin supplements have helped your symptoms so much, with luck, it could be that the diagnosis of PSP may not be secure, I certainly hope so for your sake. If in fact you do have PSP and the tablets work for you that is good news; bearing in mind the variable nature of the disease, it may help others. Perhaps you could help by identifying the precise name of the product, where it can be sourced and how much it costs.
I asked him that but he never answered. His home page doesn't exist now. He has gone.
NanaB and jzygirl,
Thank you both for keeping me informed. I have to say I wondered if he was a sad soul or it was a sick spoof. My first suspicion was aroused by his choice of name since with a small rearrangement of the letters "dingbat" style one has 'timurinsaneman' tim u r insane man!! It could have been pure coincidence or my dyslexic side showing through but it did cause me to wonder who or what we were dealing with.
Regards, Jerry.
Wow , what some working out well done you , would never have crossed my mind x
hahah... I got tim insurance man I like yours better!
Thanks, I don't think he would have agreed though, yours was much kinder - I would have probably been 'double blocked' for sending "disturbing emails"!!!
hahahahha: hmm heres one about me AVbtlkin2mch cuz I feel like such a chatty cathy !!!
Haha,
AVB
The best I could come up with is - AV(you) be talking too much because - - I'm going to need help if that isn't close.
Kind regards, Jerry.
The company is rhp and the supplement is nerve support. But it states it helps with nerve pain (not death of neurons). We would all like to have a miracle but i don't think they have come up with a supplement that will grow new brain cells yet. Janexx
NanaB and jzygirl,
Thank you both for keeping me informed. I have to say I wondered if he was a sad soul or it was a sick spoof. My first suspicion was aroused by his choice of name since with a small rearrangement of the letters "dingbat" style one has 'timurinsaneman' tim u r insane man!! It could have been pure coincidence or my dyslexic side showing through but it did cause me to wonder who or what we were dealing with.
Regards, Jerry.
Who was this guy? Let's hope he has gone. This site has no room for nutters, well present company accepted!!!
Lots of love
Heady
Poor man, on another thread he said he had been an active alcoholic for most of his life, and I can imagine he has that angry alcoholic dementia on top of whatever psp is doing to him. For all his initial post was saying how wonderful it was have his symptoms reversed, he was so terribly unhappy. I don't think there would have been any reasoning with him, but I can certainly hope he finds his way to some peace of mind.
I think he was having a game with us. I'm afraid you will get the odd one that will come out with a load of rubbish if you whent thru all his posts he had phd's was a solicitor all achieved whilst being an alcoholic totally bed ridden but reliant on his brother to do personal care but his brother lived 3 hours away. The sad thing is he got people's hopes up with his talk of a supplement that reversed his symptoms of psp. He has probably been on other websites causing upset. Janexx
I suppose it is better if he was an internet troll playing crazy than if he is truly ordinarily sick and actually crazy. It was a distasteful round, anyway. And mean. I hope folks who perked up about the vitamin supplement aren't too unhappy about it.
I do believe you are right. I went on a a gov. website for an unrelated thing got and stupidly caught up in some TOP 20 Most popular names 2014 blog. I had to chime in cuz while ppl were naming their babies unique names with meanings such as "deep running water" Something about God" Some guy on the blog was purporting how ignorant they all were to believe in some sort of God and name their child after Him..........I gave him what and wherefore and haven't been back since....still can't find that form on the gov. page! I am the one who needs a caretaker!
I was trying to find out more about him. I don't want to now he has gone but what was the other thread? How and where did you find it? Am I missing something?
X
He replied on the post asking about history of alcohol use, too.
I definitely missed that. I thought I was quite a good Miss Marple.......I'm not.
X
Hi all
I feel so naive I took it as genuine and got M's hopes up. I think I need to get a thicker skin and more suspicion of miracle cures. Hey ho back to the usual grind.
Thanks for pointing me to the posts page for future ref. best wishes Tim ( not the other one)
Oh Tim i am so sorry that you got your hopes up but he did get a lot of people excited with his stories but when i read thru and he said about neuropathy (nerve pain) and not neurological (brain) i was a bit sceptical. But will admit i did look up the rhp nerve support supplement before he posted the wrong type of condition. Janexx
NannaB when he posted about the supplement i looked at his history and read all that he had posted and replied to and it was very strange reading and none of it added up. Janexx
How weird. I looked at it as well but it said he had only joined that day and hadn't posted anything else. Perhaps I looked in the wrong place somehow.
X
I can't believe he did that, he must be sick, then you have to feel sorry for him, I did say to him he seemed very angry, good he has gone looked up the supplement, hope no one brought any of it Yvonne xxxxxxx
So what do we call you? You with "three PHD's" Doctor, Doctor, doctor?......
One other thing, I doubt your English in responding to my comment regarding "snake oil" 😘
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