Have you ever noticed?

[jeeves19]

Looking back when researching via old posts it struck me how many people contribute quite intensively to the site and then after several years go quiet and presumably leave the community. I wonder why? Do they get too sick? Resign themselves that litlle can be done? Get slighted by another poster? What? There are of course many veterans who I feel that I’ve got to know pretty well over the last couple of years but also struck by the sudden disappearance of others🤔

[Astra7]

I have noticed. I'm afraid they've all given up fighting the good fight and are just taking the meds and laughing at our magnesium or NAC.

[Enidah]

I've noticed that too and I have misksed some of those people. I've also seen that in my local once a month PD group I go to. People just disappear and I always wonder if they're okay.

Your question got me to look back at my old posts to see how long I've been posting on this site and it was interesting to read the questions and answers because I have forgotten what they were. It's a little like a diary, a record of how I was doing and what I was worried about.

[faridaro]

If I remember correctly, in one of his posts Gymbag mentioned that some of the people he used to see on the site are no longer here, which in my mind raised the same questions.

[jeeves19 in reply to faridaro]

I’ve actually messaged a couple of them to ask their situation but have heard nothing back. One of these was Norton who had a picture of a black Labrador as his icon. He was always posting then went silent.

[faridaro]

That is very sad....

[Farooqji]

Norten was running his website too. May be heligible is traced from there

[Serenity_finaly-1]

Parkies change. One min. they are crying all the time and at other times they are totally indifferent. I wanted to keep a running log ( diary ) of my mental changes as I treated my anxiety. I am the most clear headed I have been in years.

[jeeves19 in reply to Serenity_finaly-1]

Why?

[Serenity_finaly-1 in reply to jeeves19]

It can be quite embarrassing but there is a part of the male brain that tells us crying is weakness, we need to be strong for our families and that part of the brain can be affected so that even police officers who are trained not to have emotion will cry at their daughters wedding.

[Serenity_finaly-1]

Also communication is a major effort for some of us and when we have a lot of family around we get talked out.

[jeeves19 in reply to Serenity_finaly-1]

Unsure on this one. The suddenness of the removals are quite striking at times and I think I’d agree if a PWP had s young family but surely children take up less time as they get older? Maybe caring for elderly parents could be a factor .

[Serenity_finaly-1 in reply to jeeves19]

Just having family in for Thanksgiving is enough stimulus that you need days to recoup.This sometimes makes it sound that I do not want to be around family. This happens on both sides, my family and my wife's. I come off as judgemental although it is the farthest from the truth.

[Serenity_finaly-1 in reply to jeeves19]

I know that some of my friends who where on this site asked a question or two, got bored and left.

[ddmagee1]

Jeeves19- I must say, that is an excellent question! One problem with having PD is when it progresses, many things become more difficult, for some people. Depression, anxiety, and apathy, in particular, can set in, and a person can get to the point where they lose hope, and they find it difficult to read about so many other people having so many problems with PD symptoms. This is true with people who have other incurable ailments, too. I’ve heard people discuss this in a hospital setting and read studies about apathy and it’s affects on one’s thinking. So that could be one of many reasons why people drop out and no longer post. Also, when one has an insidious ailment, like PD, with variable symptoms daily, I can see where a person could get to the point where they don’t want to hear about it, or read anything about it anymore, or at least for a while. I find this forum to be helpful, and I benefit from hearing about other people’s experiences. Sometimes, good advice is given that helps me and I know that I’m not alone in this journey of having to deal with a disease, that, really, it seems, most people, including doctors, don’t seem to really understand what PD patients have to deal with. Some people may come to this forum looking for hope for a cure, and may have been misled. I always say that only a trained movement disorders specialist/neurologist can diagnose and give medicinal advice. I will state what my regimen is, but that is not for everybody. I don’t ever give out advice, medically, that I’m unqualified to give out. All I can state is my experience as a PD victim. I have found that most people who post, only want to help others, by sharing their experiences, or they are in need of support, because, really, the people that understand PD the best are those who suffer from it.

[beauxreflets in reply to ddmagee1]

Spot on.

As PD progresses the mental negativity can deepen. I find it difficult to read about some issues I may perhaps likely face in the future years as I need to concentrate on only today's issues.

[jeeves19]

Thanks DD. An excelllent and we’ll condidered response to my ‘excellent ‘ question! Take care and have a nice day.

[beauxreflets]

As PD progresses the mental negativity can deepen. I find it difficult to read about some issues I may perhaps likely face in the future years as I need to concentrate on only today's issues.

[lhart6387]

Some, like my husband, may be having difficulty typing or getting the mouse on the computer to go where they want it to go. His finger tends to click on things he didn’t mean too.

[Enidah in reply to lhart6387]

I can certainly understand the point about typing using the computer. I am just awful at that now and it is so difficult and frustrating. I always use my phone and then I can just talk into it and correct it's goofy mistakes that I catch. Much much easier.

[ddmagee1 in reply to Enidah]

I use a mesh tipped stylus, to type, because of the PD “shakes”. It makes all the difference!

[ddmagee1 in reply to lhart6387]

I use a mesh type stylus to type, on my I-Pad and I-phone. That helps!

[DianeF]

Thanks for asking this question. I’ve often wondered about it but have been afraid of the answer.

[NanCyclist]

The computer ate my comment. I've said my piece many times. Not much new to add. Exercise. Above comments are excellent.

[Serenity_finaly-1]

I have also stated that I do not have thoughts but thoughts have me. " prove all things, hold fast to that which is good ".

[Lionore]

I would love to read more posts like that of GynBag who have been around ten years or more. It’s great to hear about successes with exercise and supplements which are critical to us, but the more spiritual side of things such as how to accept that physical decline with grace, and maintaining an attitude of gratitude; we don’t see many posts of this sort.

[Balderdash]

Thanks Jeeves19 for raising the question, Were have all the old timers gone?Perhaps were all doing quite well,medicines havn't changed much ,but I think we generally manage our illness better than ever before.Information exchanges from forums like this are invaluable in helping us along that road whilst a cure remains elusive.

Me Ive been involved in a clinical trial that required a hefty commitment,was it a success it doesn't matter,I learned more about my PD in those 2yrs than in the previous 10.Im not despairing about the cure and how long it will be coming,because I can live a long life without it.I made it to New Zealand this year and had a lovely time visiting my PD friends made in places like this.

[Cbgs]

I feel my apathy is getting worse ....Which stops me from participating

[Hikoi]

Jeeves

I think all of the above thoughts are relevant. Also people may leave because they have been offended by another member and I think some people grow out of the need to connect as they get more comfortable with their condition or understand it better. For those who have been around a while they begin noticing the same queries getting recycled - and they can feel, been there done that, time to move on.

Then of course there is the huge number of groups on line for PwP which are competing for our time

I’m sure you have ideas too?

[etterus]

I have been on this site since 2010. I agree that it’s been very beneficial and at the same time it has been a drag. I have visited it daily for almost all the time but only respond when I think I have some thing to contribute. Does anyone remember Colleen? How about the booze “parties on the weekends?”

[jeeves19 in reply to etterus]

Well Colleen got upset by somebody if I remember correctly

[Beckey in reply to jeeves19]

The (chronic) offender was bumped from the site, but after a few more posts, she fell silent.

[jeeves19 in reply to Beckey]

I think the offender still lurks but under a different name now.

[hopedope in reply to etterus]

I remember Colleen and often wonder about her. I hope she is okay.

[Hikoi in reply to hopedope]

Colleen writes frequently on fb sites. She is still very positive. I think she is doing ok.

[Beckey in reply to etterus]

I remember Colleen well. I miss her posts.

[TheresaCurley]

I think you can count me as one of those -- suddenly disappearing. I don't know the reason for most, but for me I just lost interest. I guess that's a really cold thing to say, but it's honest. I think it takes awhile, for me about a year, to get on the right combination of meds and exercise to where I felt OK most of the time. When I'm feeling OK I don't much want to talk about this disease. So I think that the phenomenon in most cases is actually a positive thing. I take a lot of meds, but it works for me. May not always, but for now it does.

[jeeves19 in reply to TheresaCurley]

Well, nice to hear from you again. Maybe it’s the right attitude not to be constantly checking posts on HU! Problem is they come to my inbox at Hotmail which always prompts me to visit. What’s a lot of meds out of interest?

[TheresaCurley in reply to jeeves19]

Thank you jeeves, I do pop in now and then, like this. All things are relative so for what I call 'a lot of meds' may not be for others. You can decide for yourself. Here you go.....

L-thyroxin 88mg 1 per day; Victoza 1.8mg 1 per day; Bystolic - 10 mg 1 per day; Trazodone 150mg 1 per day; Sertraline 150mg 1 per day; Carb/Levo 25/100 5 times a day; cyclobenzaprine 5 mg 3 times a day; Vit D2 50,000 unit weekly, Vit E 400Iu Daily. Magnesium 500 mg daily, Cyanocobalamin (B12 Shot) 1 ml monthly.

[jeeves19 in reply to TheresaCurley]

Wow! I’ve never even heard of some of those. I guess some are supplements as oppose to meds eh?

[TheresaCurley in reply to jeeves19]

Yes, the Vit D2, Vit E, Magnesium, and B12 shots are supplements. However they have been prescribed by my neurologist and not something I decided to take on my own.

[Michele11]

The same thing happens with the PD people I follow on You Tube. They make 1 or 2 videos then vanish ,and you wonder how they are because even though you have never met them, they have made a difference to your life.

However, now I make videos on PD I realize how much energy it takes to make videos, maintain a blog, or be a regular person that participates on this forum and deal with all the "PD Stuff".

It probably is best to appreciate the people who do post all the time before they stop posting for whatever the reason. Even those people who participate that we don't agree with.

[ronn]

I've been in the movement since 20/11. I have observed that the atmosphere in the group changes over time, one way, then the other. On entry I found that the group included poets, humorists, chroniclers of personal events, such as the man who, each monday, submitted a travelog of the time spent on weekends when he enjoyed custody of his children. Then, gradually, the wind changed. Verse and jocularity were at least mildly criticized and censured. They eventually stopped submitting and, I suppose, went elsewhere.

My own recent lack of participation, I'm sure, caused no concern among readers, but my excuse is, I think, worthy of consideration. A simple 1 day lumbar operation, under GENERAL ANESTHESIA, became a 6 day sleep recently and the fight against dementia continues 3 months later. Will supply details if requested.

[Farooqji]

you are right Jeeves

most of pwp give up after 3 to 5 years

[Erniediaz1018]

Great post jeeves. Thanks for keeping this community alive by continuing to encourage conversation through the years. As a new comer I truly appreciate someone who has hung in for so long to help others.