Sometimes we get lucky in the most unexpected circumstances. Our visit to Scotland offered the opportunity to meet both Americans we had never met but also a nunber of people with and without Parkinson's from all over the world. Personally, my expectations were not only met but exceeded to a point that I could hardly believe my good fortune. We met with like minded people who had goals that coincided with our own and who were as ready and eager as we were to join together, speak with one voice and get this business of a cure done!

It was my very great pleasure to hear Bryn's opening remarks that so eloquently and closely echoed the feelings of the group i had gone there with, that we felt we had a champion speaking for us all. Bravo.

There are so many talented and committed people among us willing to push forward regardless the cost that I know we will succeed. For us, failure is not an option, nor is delay. A collective voice is the key. When we put our egos aside and come together to speak with one voice we cannot help but be heard.

For the first time in a while, I look forward to the future.

I also had a wonderful experience - meeting people, talking, networking -- rejuvenated with new ideas for advocacy and making the patient voice heard.

I encourage all pwp to become advocates and help out however they can.

Jean

Hi

Sorry if i upset or offend anyone with my thoughts on the ''Big Bash'' in Scotland,.
I and many like me would of loved to have gone to this but unfortunately we were priced out the market,
like so many others i have to survive on benefits and i have a wife and family to feed,yes there were some discounted tickets available but the cost was still way to much ,hotels travel etc,
Parkinsons crosses all classes so why when a meeting as important as this is organised is there no thought to the lets say less well off pwp or do we have to just wait in the back ground and be like children ''seen but not heard''

sorry rant over

sooty.....sweeps poor relation......

Value your point,but,there are fundings available, in most regions and countries.Your opinion is as valuable as anyones and everyones.Dont be put off by finances,and dont go away your a voice and there in lies great value to the PWP community

Swept is right, so often we hold back thinking circumstances prevent us from participating but in that thinking we are our own worst emenies. Begin at your local level and involve yourself. Many of the people who went to Scotland have been working for the cause for years now. In doing so they have earned the help that was provided them, and it is available to you too. But better than that is the satisfaction you will receive from joining in the crusade for a cure. There is such support and community to be found here that once you have given it a chance you'll wonder why you wasted so much time. At least that is how I have always felt. I lived in the closet for all my best and most healthy years. WHAT A PITY. Not only for me, but for anyone I might have helped. Become an advocate and take your life back, you'll be glad you did.

sooty-

Like you I just couldn't swing the trip, but don't think for a minute that you are relegated to the shadows. NT is an unusual place and is home to some longtime warriors. As a result it attracts PWP who have put in tremendous work educating themselves in order to make their own place at the table - at times even when they were not welcome. As a result, doors are beginning to open.

This group stands near the center of some big changes just now coming about. As a result there are some powerful people lurking here and our thoughts influence them. Speak your mind, you never know who might be listening. h

One of the best ways for people to be able to attend PD events is to network with other PwP - here in the UK it is very understandable for people who have been surviving on long term disability benefits to have very real financial constraints, leaving them with difficult choices. And many people from further away would have had huge difficulties with the cost of flights...... For this congress there were many opportunities for patients to be funded for the cost of entry, but the practical barrier of food, bed and travel is likely to have deterred a lot of people who would have really benefitted from attending.

Something to think of for Montreal is to set up a network of PwP who can seek out opportunities for sharing, cheaper alternatives to the hotels offered, and apartment/house share possibilities, and even block booking travel arrangements.

As a PwP networking can bring some amazing rewards, for me it is the wonderful feeling of being useful again, after the knock back of having to give up work much earlier than planned. I have also found many friends who I don't have to explain myself to, and whom I am at ease with. I had not expected that this would be so important. The fact that they are also some of the most generous hearted and motivated people I have met is something else again. It is never too late to become active..............

But knowing this is too late for Glasgow, I have to say there will be some here who really do understand this problem, AND will help with planning for other events including Montreal. Doing the thinking now to enable more PwP to attend will help in the future. It is also something that needs to be impressed on organizers...... I know that some of us, even with help, only managed to get there by the skin of our teeth..........

Lindy

- here in the UK it is very understandable for people who have been surviving on long term disability benefits to have very real financial constraints, leaving them with difficult choices. And many people from further away would have had huge difficulties with the cost of flights...... For this congress there were many opportunities for patients to be funded for the cost of entry, but the practical barrier of food, bed and travel is likely to have deterred a lot of people who would have really benefitted from attending.




This is exactly my point,yes i know there were possible funding for the cost of entry ,but its the rest that is the expensive bit.

swept .......''Dont be put of by finances'' this was the reason ............
as for being a voice lets hope whispers grow into shouts,but i cant see it myself.

I guess to be invited as a guest one has to come from the right side of the street,lol,lol..........sorry thats in bad tatse........................


Yes i have a bee in my bonnet ,not just on this subject but the whole way that the small pwp is not heard,yes i know there are plans afoot,but i am very worried that the ''''all animals are equal,but some are more equal than others'' syndrome might kick in,

you say 'no this will not happen',but power does strange things to people,.

May i ask how the congress was funded?,donations from drug companies??the cost of the entry fee or from the various pd charities or elsewhere,

Sooty,
I am one of the small pwp you talk about, and have fought for better rights and more equality one way or another for most of my life, and in my personal choices too. My involvement in advocacy here on NT has brought many blessings, and believe me there a lot of us here who are looking out to try and help improve the lives of small pwp not just in the more affluent nations, but also in the faraway places where pwp are sometimes not treated for anything other than mental afflictions and do not have the advantage that we have of better life span, quality of life and improved ability to communicate that we have. Sometimes we feel very disadvantaged, but actually what we experience is a better quality of life than our predecessors.

It is good to discuss what was not possible this WPC, it is only the second event, and it is rare for medical conferences to have the scale of patient attendance and participation that happened in Glasgow. There are many people who will be working hard to make sure the right messages go to the right people for the next event in 3 years time, with also the hope that there will not be a need for too many more of these, as viable treatments start to make it to market.....

There is a lot to be done, but there is also a lot to be thankful.
Brynn's speech said it for many of us, and also sets out what we would like to acheive....

Lindy

For every speaker that is there on someone else's dime; another company or perhaps the same foundation has to match it sponsoring a patient. 1 on 1.

details later when given more thought and brainstorming
paula