I don’t think anyone here wants to be part of this group. When I was diagnosed I had PD and I made a internet search it brought me an article with the disease description. I was at the point to shoot myself in the head. I considered myself being a man with a strong mind but in that moment I suddenly became weak. I had nightmares, I was stressing myself and I was getting in panic when my hand was shaking. I was getting in a panic-tremor loop which was amplifying both. I refused to get C/L. The depression, anxiety, urinary urgency, insomnia, brain fog, balance, lack of energy were putting me down.
And one search brought me to this site. I started to read about people stories and realized it was a big difference between the real world PD and what I read in the first article about PD. Also I learned the disease is not like cancer and differs from person to person. And on this site I learned about dr. Constantini protocol which initially I was reluctant to try. But after a while I realized I had nothing to loose and gave it a try starting March 2018. After three month it was like a miracle for me. I lost all the symptoms except the tremor which after five years is no bad. To control it I started C/L 100/25x4 a day which does not do too much.
But I noticed something else, too. PD is not just a neurological disease but also a psychological one. After I took control over myself I realized the progression was slowed down a lot. If I remained in the initial state and let the PD control me now I would be in a very bad shape. I’m still working like a programmer. Even I try to avoid the stress as much as I can, still, sometimes, I get in stressful situations to exercise my mind. Why I should kill myself for a hand tremor!? On day dr. Jeanmonod is going to fix that, too.
We came on this site to help each other and not to stress each other. No matter what political options we have, what color or origin we have, we should respect each other and use the common sense. We all are adults and can use our brains and judge a situation and do not need the media, the politicians, the movie and sport stars (many of them being certified idiots) to tell us what is good or bad. Don’t let PD or other people to control you!
But on this site I also found “the so extra-sensitives persons” , I would call them “the system collaborators” or “the strict rules lovers” inspired by the current media propaganda which wired their brains. They are so sensitive so they like to report (snitch) everyone for everything. Fortunately they are a minority. Do not get stressed by their actions. Just ignore them! And if the site admins are using non-justified repressive methods then we can just leave the site like Roy did and leave the snitchers to report each other. I can myself make a site like this.
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the impulse towards freedom is part of the human being, it is innate and incompressible, even from illness. You can always count on it. This scares them a lot.
I’m still here just quietly, I find the discord and divided world troubling. I see it in my own extended family and it’s been taking a toll on me. Hopefully things will improve. It would be nice to discuss openly with friends here how events over the last 2 years have affected them. Some maybe see few changes. Unfortunately any discussion would be against the rules and yet being that PD is definitely affected by our mental state to me it’s a topic of utmost importance. I have no problem being told I’m wrong but name calling i don’t tolerate. Hope you are well !!🌷🪴🌺
I consider the PD is nothing compared with other diseases and I do not care if my hand shakes and some people see it. I stay away of any sensitivity and I'm living in a real world with my feet on the earth (not in the sky). And I vacuumed my mind of any negative taughts. I sleep very well but sometimes, if I have hard times to get asleep, I empty my brain and count to 99 and then just keep repeating "99 Let's go Brandon!" and zero taughts. In 5 - 10 minutes I'm gone. Sometime ago I used melatonin but it was making me groggy next day; I switched to rough onion for a while and I had only colored dreams. But now is only the "99 Let's go Brandon!" pill when needed.
You have my respect and admiration! I can connect with your profession as my husband was trained to be a programmer by the Air Force. Later he switched to Cyber Security.
Another matter to complicate this is that people with Parkinson's have a certain personality that goes with the disease. We are very set in our ways, we do take a n offense, want things our way, want to prove other people wrong and us right.We don't look through rose colored glasses. That's not even my own observation but Dr. Janice Walton - Hadlock's. However I do agree wholeheartedly. At the same time I think I have changed and embraced the other side of the equation- "I don't care!" I have become tolerant.
"people with Parkinson's have a certain personality that goes with the disease. We are very set in our ways, we do take a n offense, want things our way, want to prove other people wrong and us right.We don't look through rose colored glasses. That's not even my own observation but Dr. Janice Walton - Hadlock's."
I have a problem with this. It's patient blaming. PD is organic brain disease caused by an environmental injury. The prodromal stage of dementia is hardly a personality defect. Some are further along than others and may or may not have insight into their mental decline.
When people act out it's for attention and these socially isolating conditions can bring out the worst in people - especially those with brain injury. Attention seeking behavior shouldn't be rewarded with attention - don't take the bait, just scroll on by.
Environmental exposure to neurotoxins damages the limbic system. These are the parts of our brain involved with cognition, memory and emotions and they are damaged in organic neurodegenerative diseases. To describe a brain injured person as having a personality "type" is medical gaslighting. Don't buy into it, you are injured and your symptoms are proof.
How many of us on this forum have been subjected to neuropsychological testing? I've done this twice. I'm within normal limits - just not my normal.
How about DaTScans? I've had 1, it was unnecessary. I also had a brain SPECT scan that showed a diffuse, patchy, toxic/hypoxic encephalopathy. The DaTscan is not diagnostic for PD and neither is the psych eval, they validate other organic brain disorders. PD, like ALS, is a diagnosis of elimination. I've said this before, 25% of people dxed with PD will receive a changed diagnosis.
I was evaluated by the world renowned smell and taste researcher, Richard Doty, PhD at UPENN. My sense of smell is diminished and my taste is altered. I don't taste food, I sense sweet, sour, salty and bitter in a hypersensitive way, and I became chemically sensitive after my poisoning. One of the tests I had was the Odor Discrimination/Memory Test. I scored in the chance category 3/12. This demonstrates central limbic dysfunction. It's a harbinger for dementia along with my loss of proprioception (sensory ataxia). I don't know who I am without my intellect and I have insight into what is happening to my brain. I've had some dark times coming to terms with this reality. Whereas, my mother seemed unbothered by her Lewy Body dementia.
I believe we can heal our brain injury. Will we be better than before our injury or just slow down or halt progression? I don't know. What I do know is that past trauma, be it from childhood abuse and neglect (cPTSD) or adult trauma keeps our nervous system on high alert and in a constant state of inflammation. We can never heal our body if we don't heal our mind.
Sadly, there are people too entrenched in their paradigm or too advanced in their illness to change course. Some people had personality disorders long before they had PD and were narcissistic, manipulative and charming, now they're just jerks. You should be able to recognize them by now - refuse to engage.
What an intelligent and poignant response!! I think certain arrogant jerks who thrive in stress and drama may be predisposed to developing neurological diseases. It’s too bad they can’t help themselves and lack the ability for introspection.
No people do not have a certain personality. That is an improper, also incorrect, generalization that just creates more stereotype prejudice, like when you do so with race or religion, exactly the same thing. Wrong, inaccurate, incorrect. Speak for yourself.
I've seen more than one published research paper promoting the theory of a "Parkinson's" personality and it only serves to promote the stereotyping and prejudice you describe.
As a group of people who live with neurodegeneration, we are in the best position to change the language around neurodegerative illness and shut down this abusive, patient blaming, gaslighting narrative.
Well said, I think currently HU admin seem oversensitive (or maybe like GioCas said, it their algorithm that is oversensitive)Whichever it is needs to be fixed 🙂
purtroppo qualcuno risponde all'"effetto Dunning/Kruger", ma sembra più simile all'effetto di neurotrasmettitori mal bilanciati perché varia a seconda dell'ora del giorno.😆
When i use google translate, this is what I get.. it makes no sense
unfortunately some respond to the "Dunning / Kruger effect", but it seems more similar to the effect of poorly balanced neurotransmitters because it varies according to the time of day.
“unfortunately some of us respond to the "Dunning / Kruger effect", but it seems more The effect of neurotransmitters is badly balanced because it varies according to the time of day. PS. I can be wrong 😂😂😂😂
There is no algorithm. Having been involved with a hifi forum it's loads of work. And the forum is potentially legally liable for content posted on it. I think they try to keep their workload manageable.
I would prefer a less restrictive approach. And I would prefer they didn't just delete whole threads.
Part of the problem is there are no subforums. Or rather Cure Parkinson's is itself a subforum of health unlocked
One of the hifi forums I belong to has "the wam arms" - a "pub" where you can pop in for a virtual drink and any topic is allowed. Within reason and with polite behaviour
If you want a scrap there's a sub sub forum called "the pub car park". There - anything goes.
But this forum is a great resource and we should be grateful for the work the moderators do and comply with their requirements.
No legal liability, if you read the disclaimers. You can always apply your reasoning to yourself however, take care of your own business and the rest does likewise. Their "requirements" are subject to their particular biases and moving target "of the moment personal impulses" and are getting paid for it. Any time you are paid and do not look to yourself for possible error you are hurting your employer. Has nothing to do with gratitude for somewhat effort or for something some other part of the website does, or for just showing up. Some people seem to never understand that if you do something for money, your time does not belong to you, it belongs to the employer and its best interest, not your own preference and prejudice?
It's not an algorithm, someone has to commit a decision and act to follow through with the action. The most an alogrithm can do (this is not a large scale operation using AI, after all) is place it before the administrator's eyes.
"And if the site admins are using non-justified repressive methods then we can just leave the site like Roy did and leave the snitchers to report each other. I can myself make a site like this."
No need to make your own. Roy already has one. Go join that if you desperately need to talk to him or you are as dissatisfied with this place as you appear to be. See ya!
Why not? Exactly who are you again? Somebody I should listen to? To quote you back on yourself, "Why?" What exactly have you contributed that is worth reading, I genuinely would like to know since you seem interested in asking people why they stay, seems a fair question to put back to you then.
How about doing me a favor before you move on to another site to be a net negative. Tell Park Bear, a mainstay on this site giving a lot of his time, high quality info and pd experiences, why you constantly bash him as if he's pushing personal products on pd people. Don't be afraid to apologize for being a jackass before you go, take the high road.
Not sure why I would do you a favor after this provocate mischarerisation, but in any event I'm not planning a departure as I'm not amongst the cohort of tantrum throwers who are displeased with occasional light touch moderation. Surely it is only rational for them to leave and find a forum more aligned with their priorities?
When I disagree with PB I mention why. When I agree, I hit 'like'. Mostly I do neither as I've no strong view, or view at all about that particular comment.
If you genuinely think I am 'bashing' him, report the post and it will be deleted. Simple.
Lol! Not all people here are snitchers. Actually you are pinching everyone like an annoying fly and have multiple clones to give yourself likes. My rule is : "respect everyone's opinion" and I would not snitch people for expressing their opinions as long as they do not contain vulgarities. Is Mr. Poo your twin brother?
Haven't you left yet? I guess that was just an empty, attention seeking threat. Much like this entire thread, really. Dissatisfied with the attention you received in the two existing threads relating to Roy's departure, you needed to make your own.
Bottom line... I am now shaking uncontrollably from all the negative emotions due to all these type posts and others like it.... let's get back to why we're here on this great site with great people try to help each other with PD and similar issues.
That's terrible mate and I mean that. But I didn't start the thread, nor am I one of the people relentlessly complaining about how this place is moderated and needlessly furthering the forum drama. It's pretty easy to identify those people if you want to, though. And I agree with you.
(I am a bit surprised though, that you would engage me, call me a jackass, and then when I politely respond, say that the exchange is making you feel unwell.)
My advise: use the logic and avoid emotions. You'll feel better. In fact it is just a conversation between people with different ideas, it is not a war.
"And if the site admins are using non-justified repressive methods then we can just leave the site like Roy did and leave the snitchers to report each other. I can myself make a site like this."
Then the bad guys win and the good people lose. Uh-uh. That's just a recipe for deteriorating the good the website actually does. Wrong answer.
You'd be well served by reading what has been written before rushing to reply. That was a quote of the original post, so take it up with the person who I was quoting.
so often on almost any blog or site there is so much contention born of political views and the dismissal of certain people and certain groups in a cruel way so when are people going to wake up and see that it is better to work together and make comments on what has been helpful for them or share information that has been found about possible helps - (Thumper what did your father say? If you can't say somethin' nice don't say nuthin at all.) It does not seem to me that a site like Health Unlocked was designed to be a political forum but it seems that these days any site can become a very divisive political forum and it certainly does not improve the experience of a person who is just here to glean helpful information.
You wrote, "... I was at the point to shoot myself in the head... " That resonates with me. My job has a higher incidence of suicide that dentists or doctors. I knew of one colleague who had marital problems, another who had intractable pain from an on-the-job injury. So maybe we simply have an easier access to euthanasia solutions.
But both cases shot themselves. I've had occasions where a gun was used to kill an animal patient.
So after the diagnosis I had "suicidal ideation". I'd read that most dreams last a couple minutes or less. I had a dream that lasted an hour. In the dream I was discussing methods with myself. I remembered in vet med school we had problems getting euthanasia solutions and tried euthanizing a horse with electricity. Then realized that I lived on a narrow road atop a curve, Getting the morning mail put me inches away from trucks going 50MPH. Then considered letting my truck idle in my closed-up garage. Then considered a combo of narcotics and alcohol. Then thought about injecting air into a vein to give myself an embolism. A doctor once told me that feeding an entire bottle of Vitamin D to an animal could stop its heart.
The dream ended as I was considering tying a rope to the garage rafters; "Do I have a tall-enough ladder?"
Then I decided suicide could be my "Plan-B" Lets give legal drugs a try. Two years later I'm still taking Rytary. I'm still pissed-off every time I have to see the nuero. I think my anger is motivational.
All what you just described applies to me during the 1st year after being diagnosed because the PD took control over me because of the shock.
But I fought back and it helped. I cleaned my mind of all negative ideas, including suicide. I'm certain the psychological part is very important to keep the PD under control. My goal is to help my son as much as I can. Without him I would find another goal. If do not have a goal then the suicide taught is coming back in your mind.
Thank you for your candor. Dark times come with this for sure. When doctors ask if I'm depressed I tell them I am grieving - there is a difference. Don't let anyone label you without cause.
Don't know if you have kids, but I do. Offing yourself is the surest way to create a legacy of suicide. A close friend of my 19 year old son has/had a twin sister who hung herself at her dad's house (parents were divorcing) with her brothers present. It will be one year in February. My sons struggled emotionally with the shutdown and social isolation. We talk about how suicide is a permanent solution to a temporary problem. I check in with them frequently. Their dad and I have their back and the boys know they can trust us with any problem.
Neurodegeneration is as fugly as cancer, I try not to traumatize my kids. Those we love best hurt the most.
That being said, if anyone here is contemplating suicide, please reach out for help.
I’m for avoiding bickering and snide comments as they do cause I’d more stress and we don’t need that! Content is fine as long as there’s respect. This group is precious for me, let’s keep it going on it’s intended track.
Thanks for the note. We have a 27yr old daughter. She survived chemo for Non-hodgkins lymphoma and is doing well. My wife had heart valve problems and takes meds to increase her ejection fraction. Doing well. All concidered my PD is trivial.
PWP are certainly a tough breed! I know Marion P will beat me senseless with her opinion drivel. Everyone has other problems they are dealing with. Kaypeeo you have a full plate, I wish you nothing but the best! Our membership comes here to share information and find out what's working. Why dump on someone who's just trying to get through the day? These are mothers, fathers, sons, daughters etc to someone! Would you like seeing ridicule directed at them?
Occasionally someone wants to share their views. If you don't care, skip their remarks and go on. No one is holding a gun on you. This site SUPPORTS people. When you don't know the full story why add to ANYONE'S bad news day. Instead of slamming the door on them give them five minutes.
There are certain well respected people on this site who are very knowledgeable. They have been here awhile. When they have advice to give they will tell you its their opinion. Only your Dr can give you advice.
PWP you are much stronger than you know. Every day you do battle with a disease that is undefeated. Do not let anyone get inside your head. I know how difficult that can be, especially when the barbs are coming your way.
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