Surprised

Beachdog · Posted: Tue Oct 27, 2009 3:24 pm Post subject: Surprised

Surprised a bit at how little activity there is in the NPF Forum. With 1,000,000 PWP and 60,000 newbies a year, I figured this place would be very active with questions, comments, complaints, or suggestions.

Just an observation.

Rich

Rogerstar1 · Joined: 14 Mar 2007 Posts: 541

and a good observation, Rich. Perhaps some watchers can drop a line or two explaining the reasons for their reticence.

Fr:
Roger

wheelersce · Joined: 02 Mar 2007 Posts: 821 Location: MI

Hi, Rich and Roger,
I haven't had a lot to say about PD recently. Haven't exactly been "under the porch" but I've been distracted and otherwise spending my emotional oomph.
Glad to see you both, newbie and oldbie.
Hang in there with us, Rich, conversation goes through cycles. Roger, I always learn something from your postings.
Sue W.

ritters · Joined: 24 Dec 2008 Posts: 151 Location: Minnesota

Hi everyone,
I've been very busy with work, almost too much! I'm trying to figure out if I am able to keep up with it. It definitly brings on more symptoms. Just liketo wish you all the best/

Steve

Silverfoxx · Joined: 05 Mar 2007 Posts: 68 Location: Pennsville, NJ USA

Hi Rich,

The primary reason, the blame, for "inactiity", subject matter that is not directly related to PD can be directed at the NPF. Several years ago the Open Forum format was changed by the NPF and most of the "regular" contributors, myself included, felt pushed aside by NPF, after years of much love, caring, and emotional support for one another. So, most of us departed the NPF enmasse. Why, they won't even allow access to the "old" Open Forum archives where some of the best PD information ever was shared!

Nowadays there is just a bunch of senseless gibberish from those few who think it is nothing more than a public writing forum, with a lot of nonsense that has nothing at all to do with Parkinson Disease and the support of those, like you and I, who live with PD from one minute to the next.

Occasionally, or should I say rarely. there is some really good information shared here, but like I said, rarely.

After 33 + years of living with this monster PD my words and temperament are often "short", but to the point! I'll get "flamed", I'm sure, I'm old and say what's on my mind and in my heart, but I truly miss the days when everyone associated with the NPF Open Forum were like brothers and sisters, mothers and fathers, and truly loved, respected each other, and shared the details of getting through each day with PD the bast and easiest way possible.

We were a bunch of characters on the "old" Open Forum, but we genuinely xared for, and loved, one another.

Jim Evridge "AKA:SILVERFOXX_FIGHTING_BACK"
Pennsville, NJ
_________________
"Sometimes our light goes out but is blown into a flame by another human being. Each of us owes our deepest thanks to those who have rekindled this light." Albert Schweitzer

inspector · Joined: 29 Jan 2009 Posts: 62 Location: Stockton, CA.

Deleted

sonna · Joined: 27 Feb 2007 Posts: 62 Location: Selinsgrove, PA

The nonsence that occures on this site is the reason that most folks are turned off. You are right, much love and respect was evident on this site and caregivers in the past. Most of us have migrated to other sites where respect is observed and help and support is offered. We all need a laugh now and then but most of this "stuff" is out of line. The old forums were great, but I don't think NPF can be held responsible for the recent content.

Sonna--a caregiver for 37 + years

Rogerstar1 · Joined: 14 Mar 2007 Posts: 541

Hi Sonna- Thank you for that post. I remember you for excellent, informative posts that were to the point and about technical things, often medication issues. I'm sorry that you departed. Do you include postings about religious, ethical, moral matters to be in bad taste, objectionable? And my penchant for non-PD-related youtube bits and lighter subject matter you think better posted elsewhere? Or is your reference to 'stuff' the incivility that pops up from time to time? I hope you will clarify. My apologies if I've offended.

Roger

sonna · Joined: 27 Feb 2007 Posts: 62 Location: Selinsgrove, PA

Hi Roger,
Thank you for the kind words. I have had 37 + years of experience with this demon, plus I am a nurse and do know some things about medications and their sometimes adverse effects. My mantra is and will always be, less is best when it comes to the toxic cocktail some consume.

The most offensive thing for me is the uncivil "crap". As to moral and ethical subjects, they may offer alternate perspectives to mull over, as long as they do not get into personal diatribes. I do strongly feel that this is not a proper place to express religious or political subjects. We all need a "funny" now and then, and may be just what one needs that day to uplift a spirit.

My husband has been in a nursing home for 4 years now and is holding his own, some days better than others. His falling has decreased, thanks to numerous alarms, but his food and fluid intake has become a pesky problem, although he seems to be holding steady at this point. They keep a close watch on his weight and hydration, and try to push calorie intake.

Best to all, Sonna