Hi

In order to include the views of all members who would like be part of this decision to have a Remembrance Thread sticky, but who may not want to post a response at this time, we are going to need to set up a poll for this.

When DocJohn has reviewed this, we will try to get a poll up asap and will leave it up for a fair amount of time so that everyone who wants to paricipate, can do so.

thanks
Cheri

ps just clarifying that DocJohn has been notified of this request

Do we get a choice of questions in this poll you are setting up. Can you give an idea of what it is that you are proposing to ask an do.

Bobby started as a post and when it got started John L changed it to the way it is set up now.

Thanks

DocJohn has been notified of the request for a poll on having a Remembrance Thread sticky here.

Today is his birthday and so he may not respond immediately.

thanks
Cheri

No one requested a poll it was a suggestion from administration, Curious, and I said we would ask John when we knew what we were asking for. That is why I asked what exactly were you planning on asking about in the poll you say you are setting up.

No and yes answers don't tell much about ones desires re the subject matter.

I guess maybe I should just but out and let it evolve if it can. i hope it does.

Thanks anyway Thelma

Thelma

again, I am requesting that you *please* wait for DocJohn to respond here.


thank you
Cheri

I think that thread is a great tribute and rememberance..Well done!

The concern is that such a thread may be disturbing to some of our members here, especially those who don't want to be reminded of this eventual outcome for many with Parkinson's.

I know some members like to have things done "this minute" and don't understand why we need to take our time with issues like this, but I'd rather err on the side of taking our time and ensuring we've heard everyone here, even those who would rather remain anonymous on their opinion.

For this reason, a poll was suggested and will be started. The poll will help us gauge interest in such a thread. Please vote your opinion here:

http://neurotalk.psychcentral.com/sh...ad.php?t=27810


Thank you for your patience and understanding.

John

Hi all
I think its' a lovely idea.
For the record Chuck you were right, Fabs death certificate stated cause of death Parkinsons Disease and Asphixiation, because like me, the Medical Coroner agrees, that because of the myriad of complications that Advanced PD throws at us all, too few medicos put the disease as the actual cause of death when it patently is or was the main contributory factor. It is time that is redressed, so that records can reflect much more accurately what a nasty disease this actually is.
The format of the Rememberance Thread will need to be somewhat stadard and short, but it also gives a lovely sense of history, and continuity, for the past the present and the future.
Hugs to all, keep up the good fight, and it's good to see the beat goes on in wide wide world of PD and those that love to share, banter, argue and debate, still have a place to do so.
Bella
Virginia Fay
Queensland Australia

Great to hear that you're still concerned with "us" PWP. Your response is proof that people whiose lives were altered in any way by PD, don't want to "just forget about it". PD is tough on all invoved with it, and in many ways it brings us together as a "community".
I can understand where the poll seems to be at now, with just about twice as many people voting "no" to an obituary page or thread. I think the reason for this is that one truly doesn't accept PD until one is in a later stage and ready to accept the inevitable. It's mostly the younger ones who have the energy to post here, and they want advice on how to live with PD, not prepare themselves to die with PD.
IT's a natural fear, but imho, things like how a person died from PD related conditions is important. An example being Fabs. If we knew choking was the PD induced symptom that Fabs passed from, don't you think that it could heighten awareness of choking and possibly save someone from this often ignored aspect of PD? Whence upon their finding out that they have problems swallowing, they would be more aware to prepare their food with an extra measure of safety, and not just "go out for a hamburger" and be at risk?
Similarly, suicide from depression. I know that i have a particular bent for this, but I am aware that taking my antidepression medication properly, and learning better coping skills will prevent me from going this route.
And falling. I'm not sure whether anyone in this group has died from complications from a fall, but certainly, many PWP have died from such a reason. WE should be aware of the conditions that could be very hazardous to us as PWP, so we know what to avoid doing and what to do (be prepared) in the event that such things happen.
I think that such an "obituary" thread should conatain aspects of the PWP's life, so we can get a glimpse of possible risk factors, such as "XX was a pilot during the Vietnam war, who accomplished over 50 agent orange sorties into the jungle", or "ZZ was raised on a farm near love canal in upstate New York, then moved to syracuse where she was employed with the Corning company for many years doing (whatever). You guys and gals get the point.
IT would be nice to have epidemiological data on the entire life history of every PWP, so that "clusters" could be seen, say with over three quarters of people involved in certain indusrial jobs, or lifestyles (such as farm living) evenyually coming down with PD like symptoms, early or late in life.
THis is the kind of work that our research dollars given to PD should be used for, not just in search of a cure. which might be an expensive , invasive "fix". Learning how to prevent PD, by getting hints to the vectors that cause PD, is as good as a cure for PD in the future.

Good to hear from you..I hope you are doing great!