I've asked this question before, some years ago but can't resist again! It's funny how when you look through some of the old posts from 7/8 years ago how it's evident that some members who used to post a lot have disappeared from the site. I find this curious as many of them were diagnosed in the 2011-13 period and I find it difficult to imagine that they've expired or anything equally catastrophic. The interesting thing is that many of them post quite intensely for 2/3 years then suddenly stop. There's not a gradual slowing down of the posts or decline which I find odd. Presumably PWP's will be aking the same of some of we current stallholders in several years time! Yikes.
Where do some members go?: I've asked this... - Cure Parkinson's
Where do some members go?
Written by
jeeves19
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98 Replies
•
I have wondered that myself.
I think in the first few years of diagnosis people try to find a solution with searching here and there including this forum but after some time they either find a solution or give up. That’s why we only see their activities for the first couple of years.
Thanks Kia. Hope this post finds you well?
If they found a solution I wish they'd come back and share !
Unless you are joking, Kerrington, please keep on dreaming😅
I think we joined at much the same time. I remember there was a Sharon who posted vociferously (and religiously) for about a year, then nothing. I often wonder if she’s still alive.
I dont think there's too much here for PD vets.
Jeeves, some members come back in a different incarnation. I mean, they might accidentally delete their accounts while doing s profile update and the only way to get back in is to open a new account. So, they pick up a different usename. That's one example.
PwP's don't just "expire", Reeves. It takes a lot to "kill" a Parkie😂. It's amazing, but true. One would die due to comorbidities before any direct Parkinson's related cause.
Have faith in your good fortune, Jeeves. BTW, how is your OJ supplementation going for you?
• in reply topdpatient
I think you severely underestimate advanced PD. In 2016, life expectancy at dx was 14.6years with an SD of 7.7. This means that people dying at 6.9 years post dx were within one standard deviation of the mean. In other words, not exactly a rarity.
It's almost certainly the case that some posters from 8 years ago have passed away. More still would have developed dementia.
jeeves19• in reply to
Blimey!
• in reply tojeeves19
Dont panic, the outlook is better for those with intact cognition, a category into which you clearly fit.
pdpatient• in reply to
I am not saying that Parkinson's patients don't die during the course of the disease. Rather, I am saying that the disease doesn't have a distinct causal effect on death like for example, a massive stroke, heart attack or cancer, where the patient is either facing imminent death or waiting to die. Maybe, I am not explaining it correctly, but my point to Jeeves was that having been just diagnosed with Parkinson's, he doesn't need to ruminate everyday about the possibility of imminently dying in short order.
Maybe, it's just a matter of semantics, but a Parkinson's diagnosis is less deadly than a diabetes diagnosis.
The irony is that I did little about diabetes until Parkinson's came along.
Here's an article that might be of interest:
parkinsonsdisease.net/answe...
• in reply topdpatient
I see. I agree that the risk of not waking up one morning is lower than with some other conditions.
Thanks for the link. I am skeptical that even without impaired cognition at onset, PD only lops a year off from the control life expectancy. But thank you for the link. It just doesnt "feel" right to me, though i appreciate that is not scientific.
Here's a uk study that concludes:
In patients with onset between 25 and 40 years, SMR estimated average LE was reduced from a mean of 49 to 38 years; in those with onset between 40 and 65 years, average LE was reduced from 31 to 21 years; and in those with an onset at or above 65 years, average LE was reduced from 9 to 5 years.
ncbi.nlm.nih.gov/pmc/articl...
MBAnderson• in reply to
I wish it separated out related causes like aspirational pneumonia, fall, or whatever from LE for people who don't die of something. In other words, how long after diagnosis will a PWP live if they die, essentially, of old age?
I wish that I HAD just been diagnosed!😂
A reference to a review on SUDPAR, sudden unexpected death in parkinsons.
not for the faint hearted
ncbi.nlm.nih.gov/pmc/articl...
I've always suspected as much. PWP may die suddenly and unexpectedly without a satisfactory cause of death at autopsy. If people with PD can die early without an identifiable disease condition, then isn't that to say PD can be a cause death?
Excellent article. As a PWP, I was having chest discomfort, and rapid heartbeat at times. A few years ago, a heart evaluation study on me, was great-everything A-OK. My neurologist had noticed my heartbeat going up, after several appointments, over a year ago, so he put me on a Beta Blocker, and I’m doing much better now! I haven’t had an episode of rapid heartbeat since ( one year later ). So this article on SUDPAR, makes me wonder, if I had been headed in the wrong direction. Something to think about, for sure!
Glad it was helpful. Another article you may find of interestsciencedirect.com/science/a...
Not reading the SUDPAR review - I'm going to file this in shit I don't need to know.
I miss Danfitz who had introduced us to the ibogaine HCL microdosing.
I think some are still here but typing is difficult and also they tire of people asking how they are. Sometimes they will give you a like but when you try to communicate by mail there is no response. Others may have accidentally got a life and have no time. I had a life once and if I got another one I would not be here either.
Agree with you Jeeves.
I can think of so many people who posted often and with knowledge.
I, like you, wonder where they are now.
I don't like, it but I have to agree with you , Jeeves , Gymbag , and Chris WF.
I'm struggling now with the increase of my dosis Madopar and the digestion problems.
And partially conversion to Stalevo. I have very good periods and than bad ones, and more
suddenly, since +/- two months.
Also "to get on road" it's more difficult. Almost like you want to enter in a house but someone forms an obstacle.... 
So, now I have to prepare me (first doses pills). What that concerns I have one question
(sorry to be a bit off-topic but you can answer me on my account) >>> is it important to
have a first bowel movement before the first dosis or doesn't matter so much and is it
more important to take the first dosis on time (in a range of 1o Minutes for me still).
Thanks a lot in advance for your answers !!
If you can have one every day, it would be beneficial. I suggest that trying to time it to a certain part of the day seems like asking a lot.
Greetings Janvan.
I've just been reading about this the past couple weeks and have for several years erroneously believed that we could take L-dopa therapy as needed. However, most mainstream PD organizations and neurologists say that taking L-dopa at the same time every day, consistently will produce optimal results.
I suspect your BMs will, over time, migrate all over the map in terms of when they occur, so I think taking your meds at exactly the same time every day is the best way to go.
Marc
Thank you Marc >>> I have to check the translation : "migrate all over the map in terms of when they occur"...................................
I will write later more...........
Damit meinte ich, dass Sie vielleicht feststellen, dass Ihre b.m. tritt erst spät am Tag auf und Sie möchten nicht so lange warten, um Ihre Medikamente einzunehmen.
By that I meant you may find that your bm does not occur until late in the day and you don't want to wait that long to take your meds.
A problem that I have, is typing! As time goes by, and tremors get a bit worse, it gets difficult, along with muscle spasms, of stiffness etc. that I get in my fingers, doesn’t help. Also, because of neuropathy I have less sensation/feeling in my fingers, so it, sometimes, Is just too hard too type, and I don’t blog as much as I used to! I try not to make a big deal of it; however, it is what it is, and I think that’s enough of my complaining for one day!!
Windows 10 has pretty good in built speech recognition. It takes a bit of practice, but...
You might look into voice recognition software. It has saved me. I'd be a hermit without it.
Let's see-Apathy, slowness, I don't care attitude, covid19, not seeing family. And now acceptance since can't do anything about it. And now it is another winter.
And now realization no miracle cure or even help for getting worse is around the corner.
I could go on and on.
I wish everyone well.
I miss seeing posts from them.
Wish I knew.
After a few years of getting your hopes up seeing yet another "new breakthrough in Parkinson's Research" and then nothing more comes of it, one becomes skeptical of any immediate cure. My father just recently passed away from PD complications. Watching his decline is rather stressful for me as I am going down the same path. So to cope, I simply put it out of my mind and try to ignore anything having to do with PD.
Same here. I’m just about six years post dx and progression is mild except for fatigue that limits social activities. Now with Covid, who cares? I don’t expect to see posts seeking a magic cure although I’ve added supplements based on input from you wonderful folks. I love reading posts about how to nourish us emotionally and spiritually and how to push ourselves to exercise and maintain a positive attitude. You guys are my heroes no matter where you are on some scale of dysfunction. As for focusing on possible diminished life expectancy, IGNORE. Be here now.
I’ve noticed, with the COVID-19 Pandemic, also, that PWP takes a back seat! For us who have to deal with PD every day, the threat of getting COVID-19 just complicates, our ability to keep ourselves as healthy as we can be! It really is difficult to deal with an unseen enemy! This whole last year has been difficult for many around the world. Having to isolate, and take full PPE measures to protect against getting the 🦠 COVID-19, has not been easy for many, who are saddled with chronic diseases, such as neurodegenerative diseases, cancer, heart disease, diabetes, brain tumors, kidney disease, mental instability, or other serious ailments. I have followed through with getting both doses of Pfizer vaccine, which has given me some relief, in terms of worrying about COVID-19, as much. Many people, this year, have been reluctant to continue with blogging, communicating with others, with chronic conditions, because of the emotional stresses, and problems that have made daily life even more complicated. Many people have felt overwhelmed, this last year. Perhaps, more will return to blogging, and communicating, after the threat of the Pandemic, dies down, and people get vaccinated. Patience is a virtue, and we need to just hang in there, and get through these difficult days, together. For me, this forum is very helpful. I appreciate the supportive contributions, that so many give, in this Parkinson’s Movement forum! Thank you all!
I suspect Facebook? I don't exactly fit the description you provide as I was not a prolific poster nor was I active in the timeframe you mention. But I did post here for a while. Then I discovered Facebook and I like it better in many ways.
Thanks
I could go on and on, too!
I think at least in my case the first two years I thought - I can beat this I just need to find the right combos of supplements, PT, meditation, etc. I wanted to learn and share! After two years when I developed horrible dyskinesia on low dose Sinemet, I realized all I had done was not working, so no longer felt like I had things to share. And yes I got tired of hearing about another "breakthrough treatment or supplement" or someone who claimed that if I just ate enough garlic or believed in myself enough I could be cured. I have now found the closest I feel I will get to my cure (FUS PTT) but because it is not available to most try not to overshare and only bring it up when it is relevant. I have also been seriously attacked by one member here when I do talk about it so quietly step away when she enters any thread I'm on.
The cure will not be available before 2050 at the current pace of research. I have estimated this from my project management experience by extrapolating the previous 10 years progress
I feel better already.... I'll only be 99!
I'll be 104. My goal is making it to 85, so I'll miss the cure. I will have aggravated my children long enough by then.
Well, that puts a pretty clear lens on things.
• in reply toMBAnderson
When we havent got a good grasp of all the subtypes or causes, 30 years seems a minimum.
Personally my hope is that there is something for my daughter, should she be affected.
Rhyothemis• in reply to
I worry for my daughter also. She was showing me a weird trick she can do with her index finger (she has some signs of connective tissue disorder but not enough for a diagnosis) and noticed tremor in her hand. I had her hold out each arm and she has postural tremor in both hands, but one side is worse than the other. She also told me she sometimes has involuntary muscle contractions; I asked if it happens when she is tired and she said yes but that it has only happened a few times. She had an episode of neuroleptic malignant syndrome (an adverse reaction to Reglan) last year and is on prozac. Do you think she should see a neurologist?
~
I think 30 years is a bit far out - maybe just 10; but then, I thought we would have fully self-driving cars by now.
I'm trying to remain realistic, but slightly optimistic. I don't think the rate of progress is constant or linear. I think it's exponential. The rate of progress is much greater in 2020 than in 2000. I hope. 😊
The only way we can advance a possible treatment or cure is to enlist in a clinical trial!! At the clinical trial site i go to there are at least 5 very important trials taking place. Granted the chance of a trialed medication becoming a bonified treatment or cure is small we have to press on as that “cure” may be in one of these current trials. If not for me then maybe for my kids in 20 or 30 years
I agree that many of us have "false expectations" fatigue. For example, I don't read Parkinson's News Today anymore, nor do I read anything that implies "breakthrough. Nor do I pay attention to basic science in petri dishes.
And yes typing can sometimes be a bugger.
I come & goLately I’m just too depressed to care really about anything
I’m sick & tired of complaining to any one I talk to so, I don’t bother any more
Sry to be a downer ...
c!
I have to admit ...After reading many of the replies ....
I don’t feel so alone..
Thnks for the post jeeves19!
Positive vibes to all!!!!
I don't agree with the statement that Parkinson's doesn't cause death. It's analogous to saying that death is not caused by the bullet rather resulting wound cause it.
I have been taking a break from HU because of the toxic behavior of one individual. Skepticism is healthy. Ridicule is not.
I greatly value this community, but I also value my peace of mind.
Please go ahead and make my day, Elliot. Name and shame that individual please! If she comes after you, I guarantee you'll have my support and I am going to fight for you.
Well, it's not a she.
LoL, "He" then. You still have my support.
Yep, I understand.
You should complain to the moderator if another member is deterring you from visiting here. As you infer, it ought to be a sanctuary.
I don't understand why there is not better moderation here. Many attacks here would never be tolerated in the two facebook groups I moderate.
I also wonder why the moderators dont interfere, especially knowing there is a code of conduct they coud enforce:
parkinsonsmovement.com/foru...
We ask that all members:
•Are respectful of others
•Communicate with empathy - other people have feelings too
I am in the same boat, was ridiculed so I left, barely here anymore and I know of others
Very sorry to hear that and I understand why many would be dissuaded especially when stressful confrontation is hazardous to health. I’ve definitely noticed the trend with members going quiet but we miss your contributions so don’t let those with uncivil loud voices cast you out.
Thank you, I have appreciated your input as well, but will keep my own council rather than be subjected to being ridiculed again. I do post on FB on the Parkinson's Alternative Healing board, not as high of a level of discussion but it keeps me engaged.
I sure hope people keep posting. I really appreciate the information, encouragement and the community this forum provides. No one else can truly understand the disease besides a person with the disease. The forum does provide me with hope and new things to try. All the best!
I dont think its necessarily like this now (though a long termer like Hikoi could probably speak to it better) but some posters have left because the vibe of the place was completely closed off to allopathy and only really welcoming of alternatives. Here is an example. There are others.
healthunlocked.com/parkinso...
Even now, id say every day in here you can find someone spreading unwarranted Fear, Uncertainty and Doubt about PD medication whilst alternative ideas (frequently meritless) thrive.
We are all going to need traditional treatment eventually, so its not hard to see why people leave here if its seen as being unwelcoming of traditional approaches.
Once you start on CL, or agonists or whatever, why would you come here when every day you see someone telling people how awful they are?
GymBag• in reply to
In that string brought back, I was the member called hidden because I had decided to quit and had cashed in my name. John was being very aggressive and when we tried to get him to stop it went right over his head . John had just come back from being banned and was making up for lost time,turning every post into a fast walking string. Very sad time. She told me that John was her problem and his comments in that string nailed the coffin.
• in reply toGymBag
I thought as much.
While I rarely post (I'm very quiet in "real life") I was diagnosed at age 45, 9.5 years later still going strong (Don't get me wrong, I still have my fair share of bad days, but I have learned to deal with them and move on. ) I have followed a number of online bulletin boards over the last 10 years or so as my interests/hobbies have changed (Flying, wood working, photography. home improvement) They are all the same. Interests vary, health conditions change, knowledge is increased where they no longer gain anything from the site and the last: unfortunately people are chased away/ get sick of the negative attacks/overall attitude of sites. My 2 cents, your mileage may vary.
I have rediscovered wood working . Just a birds roost to provide a shelter during cold and storms. The last two days zipped past and I feel better than I have in a long time.
you are absolutely correct
Interesting topic. It’s probably mixed — some people have degraded and some have just moved on. I bet “they” don’t know that we’re thinking about them — too bad. Might cheer them up a bit.
For me, I come here when I’m not feeling good but I’m feeling hopeful. Middle of the spectrum. Too happy and I’m living life. Too down and I don’t give a hoot.
IMO People leave because they disagree with someone and can't heal that disagreement because, unlike life, we don't share a real experience, but we live in a world told in words that can also hurt. It happens on all socials and also here on HU in a small measure. This is used a lot by the so-called "trolls" who exploit anonymity and other tricks to attack those who are not useful to promote their ideas. Often they open dozens of fake accounts to do these things and they are always anonymous, but this happens elsewhere... or not?
These unfortunate souls are extremely intolerant of other views and resort to ridiculing and mocking tirelessly on the topic they disagree on, creating a toxic and stressful environment for the people who need it the least. I hope they'll mature one day and take on a more live and let live approach..but I doubt that will happen since they're painfully oblivious. I know ElliotGreen feels the same, and many here choose to either not participate or leave the forum for peace of mind/health.
Jeeves, I miss Ian's weekly video presentations on You Tube. Any idea if he is OK?
I agree peace of mind is more important but I do hope you will continue to check in Elliot. You are a valued member of this community. Over a year ago I direct messaged a member of our community who had been silent for quite some time I wanted to be sure she was doing ok. She was ok but told me that another member had been quite verbally hostile towards her and she was unsure if she’d return, sadly she never did. Maybe we can all do a better job myself included of reporting these individuals when we notice inappropriate behavior. There are at least 2 of them that I’ve noticed lately.
1. We need to respect each other's journey and be careful not to try to impose our belief system on others. I see this happening too often with certain members.
2. Frankly I'm worn out by the political discussions that permeate this forum and that includes discussions about vaccines face masks. Make your own choices, I don't want to know about it.
3. Please stop hijacking others posts to to create a platform to disrupt the peace for your entertainment.
4. Moderators please keep ppl from straying so far over the line.
SE
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