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New normal

Lurkers? Past posters? Where are you??

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Some of us newbies have been reading the archives and realize there is a huge resource out there that is lying dormant. We see also that there tends to be cycles...the same questions..the same discussions...the same attempt to bring humor to the table. The number who post is grossly disproportionate to those who read.

 

The only really new thing that can be discussed is the journey you all have taken....and not shared. You are all survivors...at whatever stage you are....you have the answers we most seek...what happens next? What is ahead for us? How long did it take you from diagnosis to where you are now? What keeps you going? How best can we prepare? What shd we avoid? What should we never forget? What has helped you most as the disease progresses?

 

Don't hesitate to bring reality to the table. If persons want to live in a bubble of denial...they do not need to read. But there are a lot of us who would REALLY appreciate hearing from you...as long as you neglect to share your story, the further away from the truth we may drift....it does not have to be a pretty picture in order to provide substance to this forum.....please help us. We are all researchers...and no where have I seen any definitive description of the disease pattern stated by those who have lived it.

 

I feel there is a "family" out there we need to meet.....anyone???

Edited by New normal
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The forum seems to be dominated by a select group of people who carry on conversations with each other no matter what the original topic may be. I am not by nature a joiner. However, I thought this site provided a valuable resource for people with PD. So,  despite my natural, reluctance, I made a few post when I thought I had something to add. I received almost no feedback. I felt like the new kid at school who tries to join the cool kids table and is ignored. The "Advanced Members" seemed to respond best when you approach as a supplicant asking for help or support. That is all well and good but does not make for a community.  I will continue to visit the sight for the useful information  and insights but I doubt I'll do much posting.

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What I've noticed is a lot of us newbies have become advanced members trying to keep the forum alive. While that happened we got close, and noticed we are going through the same things. I'm not dx, so I can not offer the kind of advice I would like to because it would seem disingenuous, even though this is what I used to do for a living. At least the late stages anyway.

 

Noworkky, I had no idea you felt like that. I'm sorry. Shame on us!

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Noworkky, I didn't realize you had hyperparathyroidism. New Normal and I both had it too. She had all or 3 of hers removed. I had 1 rdmoved last year.

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New Normal,

I understand exactly where you're coming from.  I still consider myself a newbie.  I think even many of those who've dealt with this disease for years will always feel like newbies since this is a designer disease and no two people have the same symptoms, progression rates, other underlying medical conditions or family issues that shape their PD experience.  Like many here, I turn to this site for assurance, answers regarding fears and sometimes to add a little humor.  Moods go up and down and sometimes just flat line.  Is it the PD or is just the normal life changes that everyone goes through?  I blame PD for lots of things, but I seem to recall that life was an unpredictable ride full of blind curves before the "official diagnosis".

I use the search function on the site a lot, and find discussions from several years ago that are very helpful.  Many of the names I don't see anymore, and I'm curious what happened to them.  Are they ok?  Did they switch to a different forum or find it easier to join a local support group for face to face discussions?  Are some in denial, depressed or too tired to participate.  Probably.  Many just peruse the forums and like to remain anonymous.  Some have their diagnoses changed as time progresses into one of the PD plus syndromes and choose  different forums to address this.  From those who make just one post to the everyday players, I'm grateful to everyone who has posted on this site. 

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NN,  i'm one of the "past posters" and still a "lurker" but  when I find a subject l can add to will jump in but not  everyday.  Yes wealth of knowledge here and help.

 

Patricia aka "the lurker"

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Noworkky,

 

I totally agree with you in how a lot of topics digress to this click like conversation amongst some of the members.  There are some topics for lighter conversations and I have no problem with them.  I find it rather rude when some people are constantly making jokes and diverting the topic from its original intent.  My suggestion to everyone is, leave the hehehe's, lol's, and school girl giggle's in the topics where they belong.

 

Dave

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I am a member of several "fun" forums, based on my various interests and hobbies. Lots of interaction and joking, lots of poking and needling other members, all in good fun.

Things are different here, for a good reason. This can be a harsh disease, and very scary when first diagnosed. I think that after a while, people come to grips with it and deal with their symptoms as they progress in the best way they know how. Many do it in private, and no longer need daily support from a forum.

I am a newbie here, but feel like I was welcomed (despite the many dumb things I've posted). I know that I was guilty at first of thinking this forum was "too negative", but now realize that was a stupid perception. PD is not good, whether you are struggling with horrible symptoms or are doing okay with it currently. I think there are some regulars here that try to make the best of it and post a LOT. Others are full of questions or problems and post a LOT.

I believe you can get as much out of this forum as you want, or the minimum.

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TJ - Thanks for your response. I know you are a caring person.  I have one enlarged parathyroid currently under observation. I am such a poor candidate for surgery that the Docs hope it won't get any worse. I wonder if has anything to do with PD.

 

Dave - I Appreciate your response.  Take what you can from this forum and disregard  the rest. Harsh maybe but oh well, there it is.

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Daven and noworky...

 

Yay! I am so happy you guys pull no punches and tell it like it is! You may have noticed I had a temper tantrum when I started a thread that was very important to me...and entitled it "serious "....yet the topic got bounced around....it is frustrating to have to sift thru personal conversations that are off topic to find answers when all you can do is focus on getting thru the day....I get it. I don't have the discipline to jump over them, and find myself engaging in the banter...and spending time I don't have . Good for you to bring it to our attention.

 

To everyone...

My sincere apology for my own self centered ness to take forum space to banter personal conversations....it is rude, inconsiderate, and sophomoric. I imagine it is like being sober in a room full of drunks...actually I do that a lot...

 

I agree with Teresa that we banter because we are trying to engage others and bring a lighter tone...a welcoming tone to a very serious subject......but, that shd be kept on the light hearted sites in respect to others. I happen to have a humor gene that injects humor into nearly everything since it is my coping mechanism ....and I am grateful to those who bring me back into control..

 

Apologies, also, if I am included in "those who post a lot"....I don't do internet social media much.....but I found I enjoyed posting cuz I figure someone had a choice to skip over my posts or scan them (since I am verbose) . My feelings are not hurt if people just don't read what I say....so I feel safe to ramble. I understand now that I shd TRY to be more succinct....and comments hv bn made about words I use...I don't use a thesaurus to post....I type with two fingers as fast as I can and the words come out faster than I can type...that is me.

 

AND look what I have done...I stole my OWN thread and made it all about ME!! Thanks for the candor, everyone!!! I meant no harm.

 

Wow...back on TOPIC!! Lurkers, past posters (PP).....we miss you!!!! Please start new threads..tell us abt you...like a good old family reunion...us newbies NEED you!!

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Humor me with seriousness.  I found out last night my dad is In the first stage of Alzheimer's.  Personally I think that it is the second.  I could tell it last year.  Now this is the really awesome part you want to know about as well.  My mother is in the first stages of dementia from the same illness.  They have been divorced twenty years.  My sister died of cardiomyopathy.  The brains in this group know that is a neurological  illness too.  If you want to argue about that, I suggest you bring it up in group therapy and share your feelings with the group.  My PD and how my story goes?  You do not have enough time to hear the story.  I was offered a full academic scholarship in college but had to drop out that year because I got aphasia and serious short term memory loss.  Nobody on this planet took it seriously.

 

If you know what the Barre syndrome is you are getting warm, except pretend it is something that already went into remission --  came back, and is indistinguishable from idiopathic PD.  Because, well it is that.  If you are the smartest doctor on the planet and have a book with rules and have swiped circles on blackboards in your lifetime, I am really respecting the h%$l out of that.  Maybe you read a book, picked up a pamphlet in the allergy clinic or looked at Wikipedia and the superficial accomplishments of doing that lead you to be serious about things.  Take your seriousness to the graveyard and bury it.  My brain chemistry has been monkeyed with for fifteen years by losers who did not bother reading the journal articles to find out what are facts and what is fiction.  I cannot go back in time and tell them how stupid they are, no matter how wonderful that dream would be.  You see, I am a victim of dementia as well, but mine is in a more predictable steady course that follows the guidelines of what a PD doctor expects and others will accept without getting upset about the slight and insignificant differences.  I am forty seven years old and the infection began who knows when and went in remission.  I was early onset and cannot tolerate many a medicine out there.  It is assumed to be an infection, but if fungal, bacterial or viral is not known.  It could be toxins, it could be well water, it could be genetic and probably is some type of unmasked PD brought about by PTSD and whatever the heck else.  I worked in a chemical plant and have had my hands burned up with solvents all over the place.  My illness could be just a very compelling case of psychosomatic illness I have seen some of our members suggest to others whose symptoms seem to be slighter than what we want to hear about.  Mine are not that way though.  I am ready for the wheelchair that was bought recently and is in my apartment because the weakness in my legs is getting out of hand.  But I can sit here in my dark low income housing room and look at the wall of my intellectual vanities, the honor's diploma and each year's honor certificate and the various societies I joined to prove what chumps do who take themselves and the whole planet seriously.  Yeah.   That is really doing a whole lot of good.  In fact, I have two books published and will soon be in print with Amazon.  I wrote two more to release next year.  I like to brag and be serious and feel so tidy in my ways of being just like everyone else is.  I am working like a dog to get these books into the hands of my parents with my signature inside them before they do not know who I am.  One of the books is a humor book.  Imagine that.  I find the subject of humor to be such an escape from what I do not lurk around trying to find, but when it finds me, it usually either respects and gets out of the way of, or assumes to be carrying too much baggage and the damaged goods is not serious enough to take serious.  Be that way.  Don't let me stop you.  No words on earth could ever pretend to do that.

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Part of the problem right now is we are coming off of summer too. People are outside more. I guarantee it will pic up soon.

However, I do want to try to be more inclusive. I think we are all trying to learn and be helpful the best way we know how. I do that a lot with joking in person too. I don't plan on changing that here. Not everyone will love me, but that's ok too.

 

MusicMan, I agree with you. For the most part we are all just trying to get by, and trying to do the best we can. We all do and say dumb stuff we wish we hadn't. If you hadn't I would have thought you were not being real. So don't sweat the small stuff.

 

Noworkky, New Normal and I thought maybe our surgeries could have brought on our PD sooner. But now I wonder if it is the high levels of PTH in our systems. We could be on to something.

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WarrenScott, I'm sorry about your parents. You have a lot on your plate right now. I wish there was something I could say or do, but my heart goes out to you and your family.

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I tend to be a lurker too and glean what I can from the posts.  Not a joiner by nature; have been shot down too many times since grade school on through my life to want to jump in any old time unless I am sure of myself (sad, but true). 

 

Anyway, in response to what New Normal was initially saying, is everyone aware of the MJFF Partners in Parkinson's events going on?  They are free 1-day events covering a wide range of topics including research, topics of interest, break out sessions and a chance for many PWP to meet others and just talk.  Breakfast and I think lunch included. They also have advocates, resources and experts there ready to talk individually and help you find the help you need in your area.  Anyone who is interested can go to partnersinparkinsons.org to find out more.

 

Also, is everyone aware of the MJFF Third Thursday Webinars?  They are always held at 12 EST and the next one on the 18th is on depression in Parkinson's.  They always have an expert in the subject and a PWP living with that particular aspect.  You can send questions in ahead of time to be addressed, or if you think of something as the webinar is in session you can submit your question.  they always hold them to 1 hour.  You can go to the MJFF, click on the tab at the top "Understanding Parkinson's" and on the far right part way down there will be a section called Learn More Feel Better and there. you will find the Third Thursday Webinar information and be able to sign up.  Then you receive invitations to each month's presentation with the subject, who will be speaking, etc, and be able to sign up at that time or save it to do it later. 

 

Hope this is of interest and helps someone....

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I do know from being a member of several other forums (non health related) that MOST threads routinely morph off topic fairly quickly. Usually the poster asks a question, which is usually answered within 2 or 3 replies, then the thread will go off on a variety of tangents and directions. Often these tangents are more interesting than the original question asked. Other times they might be ridiculous.

I don't think the original poster should take it as a slight or an insult. Sure, sometimes people will crack a joke. I doubt it's meant as any sort of insult to the original poster. I am somewhat amazed (and grateful) that many have maintained their sense of humor despite having this disease. THAT should be celebrated, not be repressed

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Noworkky, I don't think anyone has asked the good Dr. about the parathyroid. Mayge you could ask him and tell him there are several of us here.

However, I had one of the best surgeons in the country take mine out and he said they ALWAYS get worse. I'm sorry you are in such bad health that you can't get that tumor out.

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The forum seems to be dominated by a select group of people who carry on conversations with each other no matter what the original topic may be. I am not by nature a joiner. However, I thought this site provided a valuable resource for people with PD. So,  despite my natural, reluctance, I made a few post when I thought I had something to add. I received almost no feedback. I felt like the new kid at school who tries to join the cool kids table and is ignored. The "Advanced Members" seemed to respond best when you approach as a supplicant asking for help or support. That is all well and good but does not make for a community.  I will continue to visit the sight for the useful information  and insights but I doubt I'll do much posting.

 

Nowokky, when I was a newbie myself in this forum, about 3 years ago, I felt the same way...Like the new kid at school....So, I openly expressed my "complaint". And some of the "advanced" members replied. They made me feel welcome and adviced me to just "jumb in". That's all I needed.

 

So, why don't you just "jumb in" too...This is a great classroom, with no "cool" kids tables. Where no one is ignored, and everybody is welcome.

 

Flashback, 3 years ago...

 

CHRISTIE: Just feel like saying this : The "good morning" thread is truly great, fantastic actually, but also the most "difficult" for "newbies"...much like breaking into a close group of old friends. Never easy.

JB: “Hi Christie, I hear you about Breaking in to the good morning thread”.

 

“It is not a closed club. I will say that rings of friendship develop within it. But everyones voice is welcomed there, and also required. It becomes pretty dry on those pages when no one posts anything. So Christie, you are more than welcome, you are needed to keep this thread going.

 

sincerely jb”

 

RANDY  wrote: “Christie, we've all been in your position - just jump in. All are kindred spirits here”.

 

EILEEN  wrote: “Christie,

 

I know the feeling you're talking about but please don't hesitate to join in. you are most welcome. before you know it you'll be part of the gang.

 

All the best to you

 

eileen”

Edited by christie
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Hi all just wanted to chime in. I'm new, very new to posting. Have been a lurker about 2 months. And I wanted everyone to know this forum has been a lifesaver for me. I haven't spoken to many people at all about PD, but I feel very comfortable posting here.

 

I have gotten a lot of valuable information, primarily the levodopa/carbs dopa test, which ultimately convinced me I do have PD. So many thanks to all who posted that info.

 

Also - the humor - thank goodness for that. It shows me that life goes on - it keeps me from getting my head stuck in my PD bottom and obsessing about it. It shows that life goes on and the PD will not take over my life. Things are still funny - I can still laugh - I can still sing along with my songs - I can fall on my butt and joke instead of sitting down and crying.

 

I am also impressed with the variety of information on this forum. I can ask the doctor, the pharmacist, speech therapist, newbies, oldsters, see what caregivers are going through and do this all in one place. I just have to pick and choose what I can handle on a given day.

 

Anyway - not meaning to criticize anyone for their posts or thoughts - but I just want to thank everyone who is t,bought full enough to post their thoughts and experiences. It helps to know people are going through the same things I am, and feeling the same way.

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vickic44

 

Very well said and I couldn't have said it better. I felt the same way when I first joined, but it didn't take long before I had made many new and very good friends. Most of which opened up to me both here on the forum and in private to let me know I was not alone with everything going through my head. We compare notes and question each other daily about everything from symptoms to what kind of day your having today, as well as everything in between.

 

Like many here, I suffer from depression and severe anxiety. I find that by coming on here and talking with people who totally understand  what I'm feeling and going through, just makes me feel better. I've come to realize that only another person with PD can know how we feel, and what challenges we face each and every day. I also try to face this with some humor and I like to think I keep an open mind about my future . It is what it is and I can sit and cry feeling sorry for myself every day, or I can move forward with my life and make the best of a bad situation.

 

As you said.... there is a wealth of info and support here all wrapped up in one package. Not to mention some of the nicest people I have come to know. So don't be shy or afraid to jump in on any threads that interest you, or to ask for help with any questions you may have.

 

Vic

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Just to add that I've been to many health forums related to pd or other problems and by far this is the best site... There was one I won't mention but was is a big known site and I was banned, they ran it like some nozzies

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I go through phases of posting and lurking, and sometimes I go for several weeks without even checking the boards.  It just depends on what's going on in my life at the time and how much time I have.  Sometimes I don't post a response because I feel that the question has been adequately answered.  Sometimes I steer away because I view the post as being too controversial - I'm really not interested in arguing over non-PD related issues. I also go through phases where I don't post anything because I feel like I'm doing nothing but complaining about the same old issues, "like a broken record" as my parents used to say.  I have to say, however, that the most important function that this forum has provided for me was/is to serve as validation for what I'm going through even though no one else - including the experts - seem to know or understand it (or will admit it).

 

A forum is just like a room full of people with multiple conversations going on at once.  If you walk up and listen for a few minutes and you don't like the topic or the tone of the conversation, you can quietly move along to another group conversation until you find one that you do.  I generally only read the posts that have a topic of interest to me and skip the rest.

 

Kevin

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What one person might think is humorous can easily be interpreted as a snide remark and an insult.

 

Dave

Dave, you couldn't be more right. Some of my past posts have been misinterpreted and I have done the same. So much communication is non-verbal, and a forum like this doesn't allow the reader to pick up those clues. I now try to read my posts from every angle before I hit send, just to see if it might rub someone wrong. Yet it STILL happens...

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MM,

 

That's why emoticons can be very helpful.  A simple smiley-face at the end of sentence can change the entire meaning. :-P

 

Kevin

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