[Jaye]

Peg, you probably know more about the national scene than most of us. Isn't there someone who has a website with pictures of living PWPs? Is there a page for those who have died?

Couldn't those in favor of a memorial put some pressure on APDA, NPA, PDA, PAN, PA, and the like, to provide some way to remember those who died waiting for results? It seems to me that something taking up space on one of those websites would get a whole lot more attention from the "general public" than this one little forum.

How about the caregivers, too, many of whom lay down their lives for us? I would like to see googy and bella on the cover of a slick magazine having the time of their lives at some exotic resort!

It would give the nationals something to do instead of some of the other things they do.

Jaye

[pegleg]

And I didn't mean that we should not memorialize those who have passed; I just think this particular forum is not the place. I am sure DocJohn would consent to another forum page with pictures (and permission from someone in the family or whatever).

Jay, there is also a couple of periodicals that are patient and caregiver-focused and put into doctors offices or hospitals. One is Neurology Now - the other is Caring Today.

Neurology Now encompasses Alzheimers, MS, PD, Epilepsy, etc. Anyone can submit an article. (see online copy at www.neurologynow.com ) Caring Today, of course, is the caregiver version of this. ( see www.caringtoday.com )

Maybe some of you (us) would like to work on an article or project together.

Peg

[Thelma]

So many good ideas have come from this forum and have been taken off site never to be heard from again. The big organizations are not looking here for ideas or are they.

They certainly were in the case of the Als forum and the credit is due to Bobby B that a site is set up for an Als Registry forum to operate out of with due credit to him given. I has been set up by ALSTDF and Jaime Heywood and his late brother Stephen.

Remember how excited we all were when he signed the Stem Cell Petition.

I guess I see this forum as a jump off place for many things. It has in the past been far more active than it is now and I wonder why it is not now. The same issues remain and the cure is not here as yet.

Many members have taken ideas off of this forum and none save the one of Paula's Grasroots Connection remains a force to reckon with.

In order to see what I am talking about you have to go far beyond this forum and this membership to see if the potential for good is there. Either we are one with all who have this disease or we stand alone. There are many people who like the idea but feel they will be snowed under [as one person has said] by dissent if they vote for it. So they are not voting at all.

Shoot................everyone vote for it or for against it but let it be known if you don't vote then you don't care one way or the either and if it goes that way then I have been wrong about it .

I can handle it I was wrong once before lol lol lol

[Jaye]

Don't touch that edit button! We have it in writing at last lol lol

[indigogo]

I have no idea just exactly how this fits into this conversation, but ....

soon after I was dx'd with PD (over 8 years ago - wonder if I'd get the same results today), I did a search in the New York Times to see if there were any articles on research, etc.

my search resulted in 20 pages of obituaries!

I chose to laugh at the absurdity.

People come here for support; I hope that support is grounded in reality. Lately there has been much posting of the positive things we can do to improve and control this disease - I have participated in much of it, because I believe in the power of positive thinking, exercise, good nutrition, and the benefits of stress reduction.

But I also think this forum has to be a comfortable for people who are truly suffering, mentally and physically, a place where they will be validated in the truth of their current existence - sometimes a "fix" is not necessary; people just need somebody to listen and empathize.

Depression is a constant battle for me; the truth of my life situation is one that can exhilarate or defeat. I try for more days of exhilaration, but the days of despair are no less real.

We have to be careful that we do not scare away the person who reads the threads about positive living and who cannot in any way at all relate because depression or anxiety has not allowed them to leave the house for a month, let alone even contemplate going for a walk.

I think the answer lies in telling the truth, all of the truth, of living with PD - the good stuff and the bad.

The reality of Parkinson's is that it is ultimately fatal. That should not be whitewashed. Maybe a special thread is not needed; but we do need to remain aware of those who disappear, and if their disappearance is due to death, then they need to be mourned and remembered.

[Thelma]

I

think the Internet is a *big* big place and if someone wants to setup a website to record all of the deaths due to any specific disease or condition, I'd definitely encourage them to do so. I'm just not sure this is the ideal place for such...

If you are a prominent multimillionaire or a movie star or a sports star then you are assured that you will be remembered as there are several places on this wide net where your name will appear.

In the post prominent people who have died of Parkinsons for one.

Name the number of people who will see that. Maybe a lot and maybe none but I am sure some will.

But where will the general public see the number of lives that are lost while the people still live. Here........because we tell them.

This country and mine are losing a lot of extremely talented humans to Parkinsons and while the large sites are the ones constantly asking for monies they are not supplying the information that the general public needs to help out.

Some members here take the time to tell about Parkinsons to groups in their private lives and in as many avenues of the web as they can reach.

But that is not enough. I can see by the numbers here that there is a big difference in the numbers of those who read and those who post. This site and this forum is being seen and that is terrific so why not take all and any avenues to get the true stry out as these people who read here also talk to others and on and on.

But if we don't care here in a neurological forum then where else will anyone care.

I am not talking about the ending of life.

I am talking about the ending of someone who had the influence of Parkinsons on their body and how it influenced their life first and death later.

We can't ask them if they would have wanted to help out in this matter but do you really think they would have said no.

Would Fred have said No, maybe who really knows as we didn't ask him.

A simple post up above all of the others where you can see that this world is losing some great people is not going to influence the caring and compassion of those who post under it.

There has to be someone out there who will take on this if you all say no to it. There just has to be a place for those who have suffered and given their lives to this dread disease.

Given.................helz no ..............it was taken from them

A site as I propose may just linger but it may flourish and give the world the true picture of who these people were and the impact they had and the work they didn't have time for.

Do it John and be the first.

There are 570 viewings at this time and only 37 people have voted.

What if those 37 spred the news about Parkinsons to one person then there will be 64 who know. Not a good average when 570 have read what was said already.

I will shut up now [ can it Jaye lol ] and wait for the gavel to fall. If there is justice then there will be a yea.

If not then it will still be status quo and that is not good enough for me.

So take it from there folks and good luck as I am off for another and final fling with my own personal problem. After this there will only be, and with my sense of humour I find the last resort funny,

Stem Cell Therapy.

Bye for now

Thelma

ps
Kids will check in and keep me up to date so don't do anything till I come back. Get a rest now John lol

[Curious]

thelma,

the number of views has nothing to do with the number of votes.

each time this thread is read it counts as a number. each time YOU read the replies it counts as a number. i am sure the people who have voted have read this thread many times and checked the new replies or to see where the vote stands.

yes many read and don't vote. like mrsd and others whom this is not their home forum.

Originally Posted by Thelma

I


If you are a prominent multimillionaire or a movie star or a sports star then you are assured that you will be remembered as there are several places on this wide net where your name will appear.

In the post prominent people who have died of Parkinsons for one.

Name the number of people who will see that. Maybe a lot and maybe none but I am sure some will.

But where will the general public see the number of lives that are lost while the people still live. Here........because we tell them.

This country and mine are losing a lot of extremely talented humans to Parkinsons and while the large sites are the ones constantly asking for monies they are not supplying the information that the general public needs to help out.

Some members here take the time to tell about Parkinsons to groups in their private lives and in as many avenues of the web as they can reach.

But that is not enough. I can see by the numbers here that there is a big difference in the numbers of those who read and those who post. This site and this forum is being seen and that is terrific so why not take all and any avenues to get the true stry out as these people who read here also talk to others and on and on.

But if we don't care here in a neurological forum then where else will anyone care.

I am not talking about the ending of life.

I am talking about the ending of someone who had the influence of Parkinsons on their body and how it influenced their life first and death later.

We can't ask them if they would have wanted to help out in this matter but do you really think they would have said no.

Would Fred have said No, maybe who really knows as we didn't ask him.

A simple post up above all of the others where you can see that this world is losing some great people is not going to influence the caring and compassion of those who post under it.

There has to be someone out there who will take on this if you all say no to it. There just has to be a place for those who have suffered and given their lives to this dread disease.

Given.................helz no ..............it was taken from them

A site as I propose may just linger but it may flourish and give the world the true picture of who these people were and the impact they had and the work they didn't have time for.

Do it John and be the first.

There are 570 viewings at this time and only 37 people have voted.

What if those 37 spred the news about Parkinsons to one person then there will be 64 who know. Not a good average when 570 have read what was said already.

I will shut up now [ can it Jaye lol ] and wait for the gavel to fall. If there is justice then there will be a yea.

If not then it will still be status quo and that is not good enough for me.

So take it from there folks and good luck as I am off for another and final fling with my own personal problem. After this there will only be, and with my sense of humour I find the last resort funny,

Stem Cell Therapy.

Bye for now

Thelma

ps
Kids will check in and keep me up to date so don't do anything till I come back. Get a rest now John lol

[DocJohn]

Just so people know, the poll clearly shows that people would prefer not to have such a thread on this forum. So we will not have such a thread here.

Thank you for your feedback and voting in this poll.

John

[Thelma]

Well what did I expect? Worked as planned. Well done.