To be clear, I am one of the people who complained about two of your replies, because I felt you were using sarcasm and negativity with some posters because you did not like what they had to say when you could have just ignored them or made your point without the sarcasm and negativity. In the years since I have been on this forum, I have probably only complained 5 times about another poster, but one of those 5 complaints was on behalf of another poster who asked me to make that complaint, otherwise I would never had made that complaint, because to me that type of complaint rarely produces the best outcome and in your case, I see no difference in terms of an outcome. Two other complaints were recent in I complained about the guy with Gulf War Illness who was trying to scam members of the forum twice and I complained each time.
I do not have a problem with any talk about PD meds or alternatives, they have always been spoken about on this forum since I started posting here years ago, on pretty much a daily basis and I really like that about this forum, the high tolerance level to most ideas, but what I do have a problem with is when negativity and sarcasm is used as a tool against one or the other, by one poster to another poster. It pushes some posters away and then they just stop posting. Although this forum has over 18,000 members, the actual number of members who post regularly is very small (less than 100?) compared to that number and I don't like to see members leave because they don't like the negativity and sarcasm.
I do not spend time trying to talk badly about people who promote prescription drugs as I know they are needed in order for most PwP to have some semblance of a life. I do not speak about them much because I read very little about them, but if a member is asking about a drug, I will link to articles that discuss side effects if I think that that drug has some significant side effects such as Ciproflxacin and that family of antibiotics as an example. Perhaps that can be construed as negativity, but I think of it as more of a full disclosure about the drug that a patient deserves to be aware of.
I do speak about supplements almost exclusively for the simple reason that they are what I read about. I consider them as adjunctive treatment to the meds for the shear purpose of trying to improve the quality of life of PwP. There are plenty of prescription med discussions on this forum and I rarely if ever drop any negativity or sarcasm on those discussions or try to single out individual posters with negative comments or sarcasm.
I try to be polite in forum conversations with other members and I only minimally try to interject humor because there is always the chance that humor, in this cyber context can be misunderstood and taken the wrong way.
I care about the people on this forum and try to be respectful even in disagreement. I made a mistake one time in an extended discussion with Rescuema and I have always regretted how that conversation ended. After it was done, I could not undo it even though I felt bad. I have been on plenty of open forums such as this one and that experience has shown me how good this forum is by comparison and I would truly like to keep it that way because in a sense this conglomeration of active members doubles as a support group for all of us. I think of it as family of another type and I try to respect that quality in all that I say and do here. I am not here to promote supplements, but rather to try and find things that may offer quality of life improvement if possible. No entity is behind me trying to get me to promote anything. I am trying to do my best on this forum and am definitely not trying to hurt anyone, at least not with the intent to do so.
I do not have PD and I do not know what it is to live that life and I do not ever suggest that I do. I have explained multiple times why I am here and I do not have a hidden agenda. I write about what I hope might be helpful for the members and I try to put myself in the position of others to try and understand what they may be feeling. I'm not always successful in that endeavor, but it is not for lack of trying. Sometimes I cry when people talk about what they are going through and I just feel helpless to help them. I do what I feel I can for the betterment of this forum and its members.
I apologize Chris if I offended you with my complaint, I just didn't know what else to do other than a post like this which I am doing anyway. In hindsight, I should have just done it this way, directly to you and the forum and been straight up about it.
To all of the forum members, I apologize to you if you feel my complaining about Chris was out of line. I am not trying to alienate anyone on this forum, even those who I rarely talk to. This is a good place and a safe place where the members know they can come and gain knowledge and support from other members and the last thing I want or intend to do is detract from that in anyway and if I have, I apologize to anyone I have offended through my actions regarding this matter. This is all from my heart and as honest as I know how to be. This is who I am and I will roll with what the forum wants.
Sincerely ,
Art
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Very well said, Art! I hope more of us will follow your lead and be polite and respectful. I have always appreciated your kindness. At the same time, I also want to commend you, ChrisWF, for the substance of your posts. I just decided to follow you yesterday. Life is short. Let's educate one another, inspire one another, and encourage one another as the new year dawns.
Always a gentle soul, always sensitive to others' needs, always trying to help PwP. You have been my teacher and my inspiration in my fight to help my husband feel "normal" again.
I have written many times about my husband's reaction when he had his first B1 injection. He called me and told me: "Honey I feel normal again!" How can I ever forget that we owe it to you and God rest his soul Dr. C.?? No medication did that!
I did complain to the administrator about Chris's caustic, sarcastic comments, not for me, but because he involved my husband in his comments to me, and that broke my heart. Everyone here knows how hard I try to help him. Before Chris joined our forum, we had no incidents and no forum members ever used such harsh language about anyone. We had our arguments and disagreements, but nothing like the one I personally experienced with Chris.
Perhaps, in the spirit of progress and posting in good faith, you could refrain from calling me a liar about my PD?
You have consistently called me liar about my PD (and often when not the least bit provoked), when according to you, the reasoning is that i dont share all of my personal details all of the time.
If you don't want to be insulted, dont insult others. Sounds fair, yes?
I feel sorry for all fellow PWP Despe. I know what its like to wake up every morning feeling rooted. I also feel for caregivers. I know it is a tough job.
You shouldn't feel sorry, they don't need that! They need encouragement, optimism, and HOPE for a cure. And I must agree with you: it is a tough job for care providers. It takes a lot of physical and mental strength to fill your loved one's needs although my husband is still self-dependent.
Art, we have never doubted your good intentions and thank you very much for your contributions and tons of information for anyone who needed it. Glad everything is resolved. Everyone here is on a difficult journey. Any shared experience and knowledge that may lighten each other’s load and improve situations embraced with open arms. We must always regard each other with compassion, sympathy and empathy. No one is here for the fun of it
Thanks for the wonderful effort chartist but this person is incapable of change. You watch.
I offered him an olive branch today and it was squashed with several anti-alternative members here joining in the attack, and unfortunately still at it. Like you, I have never gone against the use of drugs and know people need them to function. Many of the dear friends I've met here that I came to respect and care deeply about are depending on it daily. As you, I have shed tears for many members and it breaks my heart that I can't help even more - this has been my driving obsession at my personal opportunity cost. Since some of us are quite aware of the long-term repercussion of using any drug or supplements with relevant nutritional/methylation deficiencies, we try to share what we could to help when people ask for ideas when their Drs aren't able to offer solutions. What I see here is that some are extremely intolerant of that idea, and we've noticed that many members have been drifting away lately after being ridiculed and the remaining members are constantly exposed to stress to devastating consequences. I'm considering joining them to save my own health.
My hope is that those who are refraining from posting will come back and keep the community together and highly active. The group as whole can offer more support and knowledge, but if it just dwindles away bit by bit the bond of the forum will be broken.
Art, I didn't mean to seem negative but I posted that because his behavior didn't change a bit on another thread tonight. I went on an offense from the very start (the below thread) since I have always had a very low tolerance for bullies and I was standing up for bepo as I have while he was Horace99. Many members have repeatedly politely requested for adjusting his behavior but nothing changed over time, so I have very little faith it will. I certainly hope he proves me wrong one day for the sake of this community that deserves better.
Edit: The thread is now remarkably sanitized 4 months later with many of his volatile comments deleted now, just as in most of the discussions of disappearing insults and modified responses (hostile sentence transforms to many paragraphs later) after the real-time debate with the jarring aggressor.
Oh yes, the only real member he ever followed was Hikoi who I have ghosted along with other members here a while back - you see them in pairs almost always making harsh criticisms on the members sharing alternative therapies, which apparently don't work despite myriad success stories.
I don't have the answers, but I know it is worth making the extra effort to keep this forum intact and a good place for any of us to come to when needed. The good things in life sometimes require extra effort to maintain and I consider this forum to be one of those good things in life and I will try and do my best to help keep it that way to the extent that I am able.
Art, you will be here and I feel good knowing that you'll continue to help the members here amongst unselfish others who contribute vs criticize. I told other members who PMed me last night that I've already been thinking about leaving the forum for a while for my own sake. I just couldn't whenever I saw someone seeking help with no answers even as time went on - you know exactly what I mean. 😉
As PD condition progresses to more advanced/late stages, the shared viewpoints and experiences by the caregivers become instrumental with continued degradation in mental capacity - anxiety/hallucinations/delusion/dementia...and the most heart-breaking personality change. These caregivers should never be undermined nor devalued while they deserve all the accolades for sticking by their loved ones through brutally tough times. Although we clashed on the megadose melatonin topic while my philosophy has always been to inch towards finding a gap/balance, I've always known that you're truly a good person. I apologize that it affected you deeply.
My lifestyle afforded me the ability to contribute here obsessively, but the time has come where I should take the precedence to living vs mourning.
It doesn't have to be either or. It can still be both! Take a break if you must, take care of what you need to and yourself, and then comeback when you can and do what you do. Diversity on the forum can be a very good thing, but contributions and knowledge take the forum to new heights and that is important.
I am not you and am not a replacement for you. There is only one you!
So as Captain Picard (now known as MarcBAnderson)would say, ' make it so'! Take as much time as you need to make things good for you and then come back. When people leave, it takes away from all that this forum is! When those same people comeback with renewed energy and insight, it makes what we have here even better!
Now, 'make it so' and hurry back or just take mini breaks and be more comfortable in your own skin, but definitely do that here!!!
1. No one here believes for second that you are considering leaving. You are far too wrapped up in your self-appointed role as the reresentative of the supposedly victimised alternative treatment proponents. Please stop with all the drama.
2. Much of the recent drama was in a thread that i started about levodopa phobia and living for today. No one was being judged or ridiculed. In fact, i offered a hat-tip to supplementary treatments, even those i dont use. I also went out of my way to make it clear that i thought that the couple i had read about was well-meaning.
You showed up to start an argument, deliberatelt misinterpreting my post. Maybe some of my syntax or language was imperfect. PD has chipped away at my thought construction a little bit. I know you dont know quite know what that is like, so just take my word for it.
Before you showed up, we were getting along famously. But you just had to get involved, didnt you? Becuase what you really crave is the attention and the plaudits. I remember when some people though this shouldnt be the COVID19 forum, and you said hey, you can skip threads you dont like. What happened to all of that?
If my conduct, and that of the others in that thread, is just so damaging to you, why didnt you just skip it and advise your group of followers to do the same? I even made a point of not tagging the lady i was referring to. But you took care of that, didnt you? Becuase you love the drama.
3. Theres far more complaining about the persecution of alternative proponents than there is actual persecution of alternative proponents. Yes, some alternative proponents have left. Discussion forums are not for everyone. Just as many people have left because of long term denigration of the use of PD meds. But you dont have a problem with that, do you?
4. If there is systemic oppression of alternative treatment proponents, why is Art, the most prominent and long term proponent of them, seemingly immune to it? Did you notice that i was the first to offer Art a cheers here? If am such an anti alternative crusader, why would i act that way towards him?
Seriously, just stop it with all the martyrdom. I highly doubt that anyone has requested that you operate whatever it is you are operating at "personal opportunity cost", so just participate in the threads that interest you, upvote content you like, report posts that you think contravene the rules and stop being such a fiend for drama.
Art, I appreciate all of your research and knowledge. I don’t post that often for that simple reason of a few people in the past being negative to me . We all have a story and what works and doesn’t work and I enjoy exchanging experiences and debating but not ridiculed . Thank you for all you do. Karen
I remember when we first met on this forum and in my exuberance about B1, I was overwhelming you with all of the reasons why you should try again! I've learned and grown from that experience and though it wasn't the greatest start, I feel that we are better today than we were that day! This is a good place to be able to come to when needed and hopefully it can remain as such!
Thank you Art for all you do. I trust your words and many others but i have noticed regular contributors now who seem to judge and ridicule fellow posters. I was also judged once, life can be hard enough without being judged by someone who doesn't know you or guve a damn how they hurt you.
Again thanks for all you do. We need to protect this forum n its wonderful friendly contributors.
I wholeheartedly agree! This forum is a very good place and just knowing you have the option to come here whenever you want or need to is almost like a form of self security, I think. It gives peace of mind to a certain extent and I think that is a good thing!
Hay Man so your a complainer. That does not mean your a bad fellow. Complaining is good for your glans, blood pressure release, most genius are always complaining. Look at the movie Ted. Ted is free and happy. He says what ever he feels , wants, needs, or hates. I wish I could be that honest.
since my husband's death, I rarely post anymore unless I have something significant to add or see something so wrong I cannot scroll past.The major problem with any written forum, is the inability to "hear" the tone of the post. As caregivers or the PWP, we take this disease very seriously. So when we read some comments it is too easy to become offended and respond back negatively. We all want the same thing- A CURE. We have come a long way since 2012 when Ken died. There are many new drugs and much more collaboration among researchers. My husband dealt with hallucinations and pain that he was unable to describe to others and there were few available treatments for him. I was constantly teaching others about PD because the average person thinks it is a tremor issue. They have no idea about all the non-motor issues that occur.
I cannot help my husband anymore but I try to help others. I facilitate a Caregivers Support Group. We meet rarely now due to the pandemic but they know they can call me if they need advice, a suggestion or just to vent.
I stay here and read a lot of posts. I try to stay up on the latest research and trials to give my members hope that there is a light at the end of the tunnel.
God bless you all. May 2021 brings us Peace, Joy, Health and Hope for the future.
I second the motion! You have always been an invaluable member of this forum, and applaud your efforts teaching others about PD non-motor symptoms. You are right, that's what needs to be addressed in every group and forum.
I suspect that the severity of the problems most later stage Parkys find them selves in is not understood or appreciated by many and I think that may be our own fault . We purposely put on a good face because no one new to the disease wants to hear it and we dont want to discourage anyone . You know the truth and yet you stay and are involved ,determined to help someone . What you do matters. May God bless you and help you deal with your loss.
I wish I could help more but it is what it is and I have run out of strength . I will watch the birds at the feeder and wait.
Art, the people with PD are very sensitive. I know how I was before the disease and I know how I'm now. There is a big difference between me in those two circumstances but still I try to stay away of drama. ChrisWF sounds a little sarcastic for some people. That's the way he is and I have no problem with that. He is free to express his ideas as John Pepper does, as you do , as I do and as every one else does as long as they do not turn in ugly insults. Happy Holidays, Merry Christmas and let's have more peace and less drama!
Your contributions to this forum have been and I hope will continue to be....invaluable. I am sure that most if not all of us have great affection and admiration for you and your thoughtful, caring support. No one is perfect, certainly when there is an occasional kerfuffle, it can be bothersome if it becomes negative but personally I let it pass and move on. Generally the tome of the forum is friendly and thoughtful. I really love all of you and am glad to be part of this "family".
I recently sent away for collagen supplements after reading your posts.
In regard to pwp who no longer post here. There have been pwp who have been insulted, ridiculed and made fun of because of their opinion.
I remember a lady called Colleen. Her posts were sheer joy. She would lift our spirits with her poignant writings.
She was bullied away.
Im still here. There is nowhere else to get the support, empathy and knowledge i need to keep fighting.
Those of you on this site that have hung around for years and years and still encourage, support and seek to give hope to us with your knowledge and advice
You are very welcome! I understand exactly what you are saying and it is sad to know that people have been ridiculed or insulted right off of the forum. I wish I knew how to resolve the problem, but I do not. The disease itself can put a person in a bad frame of mind at times and to come to your favorite forum during those tough times as a place of refuge and support only to be ridiculed , can be devastating!
It seems that on every forum I have ever been on, these issues crop up regularly, but it has been my experience that out of all those forums I have been on, this one is still very good by comparison and the information posted by the members here is also very good and generally up to date or even breaking news in some cases. There are many knowledgeable people on this forum in multiple areas that can be very useful for PwP.
I'm not sure if the administrator alone can monitor every post on the forum 24/7, but that is almost what is needed if you want to keep the conversation civil at almost all times. So on our own I can only suggest that we be respectful of other members and try and understand their point of view before responding to them. I think that small step could help, but there appears to be no easy answer.
I wish I could to that. But I'm still not sure I have PD although 2 or 3 doctors say I do. I take sinemet 25--100 three times a day. But I don't see it doing anything for me because I don't see any signs. I've had a hand tremor nearly 4 years, unchanged by the meds. Tomorrow I go for an MRI because one doctor said I have MS and maybe PD as well. I've asked about a DAT scan. The doctor said sure but even if it wasn't positive for PD the medication wouldn't change.
I don't recall someone who helped me, or whom I helped, ever mattering whether they had parkinson's.
Now I survived my mothers, aunts, sisters, cousins, and my own daughters terminal cancer, which left my grandchildren, as my mother's did me, an orphan at 12 and 9...no group I was ever apart of about it ever told me "well, YOU don't have cancer so you are not welcome, YOU cant help or provide sympathy, empathy, support, knowledge, and then have it returned in kind, there is no welcome for you, because you don't have the cancer yourself. Nobody with AIDS I helped ever said "sorry, you aren't HIV positive so you can, and should, go jump off a cliff, get a life, get lost..."
Is that who you are, ryzlot?
Anyway, kaypeeoh clearly does not have PD, because unless you have seen at least 10 neurologists and 9.5 of them agree that you have it, you don't. Also you might have it but then lose it if you don't get a "booster" diagnosis every 3 years to confirm it, and you must get 5 neurologists to say so to meet that requirement.
I know all this because I am the king of PD and made up the diagnostic qualification criterion after conducting a scientific survey of two guys I know.
Telling someone to leave something that is not yours to control or police is pretty pointless. They don't have to because you say to, you know.
For anyone who gradually forgets that this is just a typed forum, not real space or "territory" of value and entitlement for you try to capture and to fight over, has that not occurred to you that you don't run things and don't have the right to tell others what to do? You are taking over the website and defining who is legitimate? "Go away" from you for having an opinion?
For this site you like to hang around on, like a streetcorner you can use to bully or sell something, what do you pay? How do you like the price? Is this some sort of "territory" and is it something you are invited to compete for and control?
You are a "renter" just like the rest here. When you buy the website or pay to run it, then you can decide who can be here. This should be obvious to all, and includes this: if you really owned this place or control it, you could just act instead of mouthing. We wouldn't be talking, whoever the boss didn't like would just be gone.
If you don't like someone, don't read them, or tell them off, but I have the same right to tell you to "go away" that you have...which is zero.
I don't recall someone who helped me, or whom I helped, ever mattering whether they had parkinson's.
Now I survived my mothers, aunts, sisters, cousins, and my own daughters terminal cancer, which left my grandchildren, as my mother's did me, an orphan at 12 and 9...no group I was ever apart of about it ever told me "well, YOU don't have cancer so you are not welcome, YOU cant help or provide sympathy, empathy, support, knowledge, and then have it returned in kind, there is no welcome for you, because you don't have the cancer yourself. Nobody with AIDS I helped ever said "sorry, you aren't HIV positive so you can, and should, go jump off a cliff, get a life, get lost..."
Anyway, kaypeeoh clearly does not have PD, because unless you have seen at least 10 neurologists and 9.5 of them agree that you have it, you don't. Also you might have it but then lose it if you don't get a "booster" diagnosis every 3 years to confirm it, and you must get 5 neurologists to say so to meet that requirement.
I know all this because I am the king of PD and made up the diagnostic qualification criterion after conducting a scientific survey of two guys I know.
Art, thank you for being upfront and honest. To remain silent is to be complicit. I was tempted myself to go to the administration with my concerns over bullying here the last few months. I now regret that I did not follow through. The bullying that has taken place recently on this forum is disappointing. It is not how members EVER related to each other as long as I have been a member. I was going to leave the forum, but I respect and listen to (and benefit from) all that everyone has to offer that supports us. There is no fight about drugs vs supplements except in people's heads. There is good and bad with both. They can BOTH help PwP. It is beneficial to learn ALL (positive AND negative) we can about BOTH. I thank everyone who has posted here, sharing knowledge and support, despite the potential to be bullied. My relationship to this forum has changed, I no longer feel safe posting, so I do so minimally and often only trying to support someone who is being bullied. I don't want to contribute to the negative energy that has taken this forum over. I now skip over any of the bully's posts/responses so I don't have to read such negative words. It's the only way I can prevent be sucked into what is now pushing members apart. Stress is terrible for PwP and 2020 has been plenty stressful enough without a bully active in a place of support. I know there are so many fabulous people in this forum, I hope we can all get back to a place of community and support. Let us ignore the bullies and stop fighting amongst ourselves. I wish everyone a peaceful and safe holiday season.
I hear what you are saying and understand it. Somebody on this forum had mentioned the possibility of having an "ignore button" that would block you from seeing posts from posters that you would rather not hear from and maybe that is doable as an option to minimize negative member interactions. I don't know how difficult it would be to add that feature, but perhaps it would help and is worth considering for the overall good of the forum. I have seen it on other forums, so it is definitely possible. It seems like such a feature could easily reduce negative interactions by at least 50% and allow members to return and feel relatively comfortable posting here again.
It is a well established fact that Cipro and other drugs from this large group of antibiotics can cause tendon and joint damage that can be very debilitating and I have written on this forum about a friend of mine who this happened to after an extended course of Ciprofloxacin. It caused severe enough tendon and ligament damage that he pretty much lost greater than 50% use of his left arm. After doing months on a supplement course, he has regained about 95% use of his left arm even though the surgeon that reviewed the MRI said that my friend was not a candidate for physical therapy and the only remedy was surgery. When my friend asked if the surgery would bring him back to 100% use of his left arm, the surgeon told him that there were no guarantees with the surgery and he may actually be worse after the surgery. So I suggested a specific supplement for him to try and if it didn't help, he could always consider the surgery. Here is a link to that post :
Here are links discussing how Cipro is well known for this serious side effect and sometimes it is the Achilles tendon that ruptures which could be extremely bad for PwP.
There are alternatives to statins that do not cause these problems, but rather offer other potential health effects as opposed to unwanted side effects.
Thank u for ur prompt reply. I will read thru the links. I am very interested, too, in the info regarding muscle damage from statins as I believe that was the first clue in my husband's decline, although he only took them a very short time and then tried supplements. We will never know and it will haunt me forever. I am totally exhausted going over and over it all in my head. Thanks again.
I use the recommended dose on my tub of lecithin, 2 tablespoons daily, but some companies suggest 1 1/2 tablespoons or 1 tablespoon. Some people mix it in their smoothies, but I just dump the granules in a small glass of water and drink it right down without any type of mixing. Some people will reduce their dose to 1 1/2 tablespoons or one tablespoon once they get their cholesterol and triglycerides down to the level that they want. People generally opt for a non-GMO soy lecithin product. Soy lecithin is what was used in the study I linked to and I have not seen a study for other types of lecithin, such as sunflower lecithin, so I do not know if sunflower lecithin works the same to lower cholesterol.
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EIGHTY REAL REASONS TO CONSIDER Dr. COSTANTINI'S Thiamine / HDT / B-1 PROTOCOL BASED ON HU FORUM MEMBER'S EXPERIENCES
Apologies to the "family".....
We have a new look, but the same urgent goal – to cure Parkinson’s
Rytary off to a shaky start
