[stevem53]

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

[indigogo]

Great post, Steve. I especially can relate to this:

"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"

I stopped taking Requip for the same reason. And the "coming back to work" issue is huge - it's a step that is almost impossible if you lose your job in the first place.

These are some of the unmet needs in our community that are often overlooked because they are difficult to deal with. I don't know if it is a PD problem or an American problem. Millions of people with chronic, incurable disease are living on the margins of our society.

Can we break it down into smaller, solvable pieces? I think about this a lot; housing is one area that always comes to mind. Drug prices are another piece of the puzzle. Helping people keep their jobs is a third.

[jeanb]

Steve -- PM me -- Arizona has a program to help residents get meds -- they may be able to help you.

Jean

[aftermathman]

I share so many of your views.

It never ceases to amaze me how the richest economy in the world can so fail its most vulnerable citizens. In the UK, you always get drugs, free if you are unable to pay, other European countries have much better social services (France, northern Scandinavia), so in that respect Carey that element of PD is an American problem in the context of the developed economies.

America is the richest economy and the world's only superpower and the powerhouse of scientific advance. My perception as an outsider is that as long as you are fit and working there is no better place to live. God help you if you are neither of these things though.

Neil.

[Debi Brooks]

http://www.gsk.com/responsibility/de...-countries.htm

This is out of my area of knowledge but I did a quick search on GSK's (maker of Requip) site and they seem to have some patient assistance programs in the US and other developed countries that might be worth checking out...they, like many companies often make access to medications their number one charitible activity. So, I think big dollars go into subsidies for those who qualify. Anyway, just wanted to throw this in the mix.

Separately, it's also not really my place to chime in on the role that a forum like this might play in the lives of PD patients but reading this thread, well, it feels like a big hug.

Debi Brooks

[girija]

Steve,
* Boehringer Ingelheim makes mirapex and I had talked to them about getting Mirapex while I was in India as Mirapex was not available there. They were going to ship it to me free of cost, three month supply at a time. I could not use their offer as I needed a lot of paperwork and permits from the Government to receive "foreign medication" in India.
Talk to the patient\Assistance Program people. They were very helpful.
Going off Mirapex is not easy. Hope you get your medication.

Girija

Boehringer Ingelheim
Corporation (USA)
Boehringer Ingelheim Pharmaceuticals, Inc.
Postal Address: P.O. Box 368
900 Ridgebury Road
Ridgefield, CT 06877-0368
USA

Information on
Patient Assistance Programs
Phone +1/800/556 8317 (toll free)

For general info
Phone +1/203/798 99 88
Fax +1/203/791 62 34
e-mail
Website
* Boehringer Ingelheim in Columbus, USA
Boehringer Ingelheim in Columbus, USA

R

[reverett123]

http://www.pparx.org/

That links to the Partnership for Prescription Assistance. They are a non-profit clearinghouse that matches patients up with the various programs available. They are big time and cover over 2500 different drugs. They will prequalify you with a few questions. They got me free Requip for the last six months. No program for sinemet at the time. It's a one stop shop and a great help.

[jeanb]

Steve, Please contact -
Renee Allen
Program Coordinator, Meds Connection
Neuroscience Clinics
1012 East Willetta Street
Phoenix, AZ 85006
Tel: 602.239.6733
Fax: 602.239.3593
Email: renee.allen@bannerhealth.com

She may be able to help you - altho the other posts on this board may be just as helpful. Mention me if you like - Jean Burns from azapda - has referred you for help. She & I have discussed the problem of out of state pwp who have trouble getting meds. She had said she might be able to provide some info on where / how you can get help.

Jean B

Originally Posted by stevem53

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

[stevem53]

Originally Posted by aftermathman

I share so many of your views.

It never ceases to amaze me how the richest economy in the world can so fail its most vulnerable citizens. In the UK, you always get drugs, free if you are unable to pay, other European countries have much better social services (France, northern Scandinavia), so in that respect Carey that element of PD is an American problem in the context of the developed economies.

America is the richest economy and the world's only superpower and the powerhouse of scientific advance. My perception as an outsider is that as long as you are fit and working there is no better place to live. God help you if you are neither of these things though.

Neil.

Thanks Neil..I could have went on and on with my contempt for the healthcare system in the U.S..After I saw Micheal Moore's movie "Sicko", it put healthcare in America in its proper prespective..Greed and power..Imagine getting a $120.00 inhaler in Cuba for 5 cents!!!!..Enough said

[stevem53]

Originally Posted by girija

Steve,
* Boehringer Ingelheim makes mirapex and I had talked to them about getting Mirapex while I was in India as Mirapex was not available there. They were going to ship it to me free of cost, three month supply at a time. I could not use their offer as I needed a lot of paperwork and permits from the Government to receive "foreign medication" in India.
Talk to the patient\Assistance Program people. They were very helpful.
Going off Mirapex is not easy. Hope you get your medication.

Girija

Boehringer Ingelheim
Corporation (USA)
Boehringer Ingelheim Pharmaceuticals, Inc.
Postal Address: P.O. Box 368
900 Ridgebury Road
Ridgefield, CT 06877-0368
USA

Information on
Patient Assistance Programs
Phone +1/800/556 8317 (toll free)

For general info
Phone +1/203/798 99 88
Fax +1/203/791 62 34
e-mail
Website
* Boehringer Ingelheim in Columbus, USA
Boehringer Ingelheim in Columbus, USA

R

Thanks Girija!..I was on the phone getting the run around from Boehringer Ingelheim last week, and after a number of phone calls of either getting faulty information, or getting disconnected, applying online, and being told that I didnt, they finally agreed to mail me an application for a years worth of free mirapex if I meet the criteria