My 2 cents worth..This forum has become more of a news/science/advocacy/informational/etc centered community..These are all good things, but we seem to lack the elements of the intimate, personal, support, type venue that I found here in the beginning..When I was initially dx, I read posts here about people participating in, and enjoying life, that life does go on after pd..That hopes and dreams can still be fulfilled..I came here thinking my life was over, atleast the part that counted anyway..I went through many, many changes in my life in a short time, and I needed to know how other parkies dealt with, and got through these adversities..The actual everyday living of life with pd is still alot more important than news/science/advocacy/information/etc ever will be in my eyes..As a matter of fact, when I visit here, I very seldom read any of that stuff..People frequently call me, and tell me the MJF is going to be on Oprah, or ask me if I had seen the segment on pd about hitting a punching bag, or mention about Obama getting the stem cell research in gear..And my answer is, no I didnt watch MJF on Oprah, and no I didnt see the segment on the 6:00 news about boxing an pd, or doing the tango and pd, and no I have not paid attention to Obama's policy on stem cell research..I dont pay any attention to any buzz about cures either..People with good intentions bring the subject up in passing, and I change the subject..I get e-mails from pd organizations, like the Northwest Parkinsons newsletter..I delete most of them without even looking at them

The reality for me is, I have pd, and there is no cure..They still dont know what it is, nor how to stop it from progressing..So I have to accept that, and direct my focus towards living the most fulfilling existance with it as possible, one day at a time..My life has to go on, and it cannot not go on contingent on the possibility that some cure is just around the corner, and it is going to make me whole again..Too many people have passed on waiting for a cure that was "going to happen in their time"..I have to become whole with or without pd, and there are going to be times when this is going to be hard to acheive

Tons of money has gone into research, and that is good..We need research, but what about pd patients that are not having their needs met now?..What are we doing for people who have no healthcare, cant afford meds, and/or are financially challenged?...I think of people like Fred..(Hey Taxi)..who was living in that trailor, all alone with his cat, with advanced pd..How do you deal with problems like that?..What do you do?..Where does the $$$$ come from?..Fred was only one is a sea of God only knows how many who's lives have met, or who are meeting, or are going to meet the same fate..What are all these pd organizations doing for people that need help now?..What is the system doing for them?..I barely scrape by on my SSDI check, and I stopped Mirapex cold turkey last week cuz my neuro ran out of samples..I now have to depend on the generousity of a fellow parkie to send me some, cuz I cant afford $240 a month for the Rx..I have a few assets, and I have to hold on to them for dear life, because if I lose them, they are gone forever..Its not like I can up and go back to work full time and make a come back..We all have our personal challeneges because of this disease, and this is why I believe that the personal intimacy, the sharings of our struggles as well as our victories, is so significant and necessary

It was also good to see that John posted a "how's everyone doing thread", and that Carolyn posted a weekly check in thread this week..I came to the crossroads with it a few months ago, because I simply had number one, did it too long, and number two, there were too many painful personal issues going on in my life at the time, that my principals wouldnt allow me to vent on this forum..I still continued to post it up untill a few weeks ago because I thought it was more important for the community, than were my personal woes..I just got to a place where I had to call it quits, because I felt that the encore had outlasted its effectiveness

Being a part of this community has brought me to places I never dreamed of..I have met 15 of you..I became a PAN Rep..I am a board member of my local chapter of the APDA..I attended the WPC..I went to the Unity Walk in Central Park last month..I had never been on an airplane, and flew across the country to meet someone who I was instrumental in getting to the Cleveland Clinic to get to the bottom of her health problems..and she got help, and was able to walk again..What happened between us personally, and the aftermath of that trip is another story, that I am not going to get into, because it is irrelevant to the topic of this tread..What is relevant about it is, that because of the personal nature of the support, and because of the humanity that was shared by so many of you through the years in this community, I was able to put my life on hold, and make a sacrifice to help a fellow parkie out through thick and thin

My life is a better place because of those who have reached out to me, and because of those Ive reached out to