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Topic Curious and lazy! Go to previous topic Go to next topic Go to higher level

By Pearly4 On 2009.08.24 18:23
I'm curious Jim -- is there a story behind this site and the forum? I guess I'm lazy too, because I didn't feel like going back to the beginning page by page!

By jsmitch On 2009.08.25 12:39
Glad you asked.

It all started back to 1999. The forum's roots go back to when I was working for a large Healthcare Marketing Company on a Parkinson's project with the Neurology Center at Harvard Medical Medical School. That year, coincidentally, one of our management team had an in-law diagnosed with PD. That event prompted us to look into Parkinsons even deeper than the project required. We explored, not only the clinical stuff we were working on, but the impact the disease has on life-style and family. We found very little information published that was specifically targeted at caregivers -- only the patient. So...

We used our connections at Harvard -- found a host/sponsor for a web site dedicated to Parkinsons disease Caregivers and convinced a Pharmaceutical Company to underwrite the costs through an educational grant. In 2000, the web site and discussion forum launched through an affiliation with the National Parkinsons Foundation.

Everything went well for the first couple of years. We had top level guest commentators, an "ask the doctor" feature, content that interacted with the National Parkinsons Foundation databases, and rich conversation on the forum. We figured we hit a home run -- finally, information for caregivers was readily available.

But we did not take into account politics. Soon the rivalry between the National Parkinsons Foundation and the American Parkinsons Foundation started to creep into our ability to publish content and get cooperation among support groups. The NPF Staff who we worked with became increasingly distant from our cause. And, in 2002 the educational grant expired. We searched for replacement funding without success. With the funding gone, the NPF decided the project was not in their best interest and just let it drop.

Of course we had had invested considerable time and energy into disseminating this valuable information but, what really struck us? The notion that all the caregivers who were participating in this project were to be kicked to the curb, so to speak.

We stepped up and assumed responsibility for the forum and moved it. Unfortunately, our problems were compounded by a couple of bad business years. The forum, already on shaky ground, was still in jeopardy of being eliminated.

When I left the company in 2004, I took the forum with me. I re-established it as an active Parkinsons Caregiver Web site -- what you see today -- MyParkinsons.org. Still no funding source and without any Parkinsons Association sanction or affiliation, but available for anyone who cares for someone with Parkinsons disease.

Jim

By annwood On 2009.08.25 12:43
Jim, Thank you for staying with us. I know this must be a great deal of work for you and you should know how much it is appreciated. During my husband's journey with PD I don't know that I could have made it without all of you on this forum.

By Pearly4 On 2009.08.25 16:56
Not to go all kissie face and gush-gush on you but you are to commended for your loyalties to the caregiver. Caregivers are the forgotten heroes in this stupid disease. I expected a more personal connection with the disease (as in you yourself or a loved one was diagnosed) but to have you dedicate yourself to this without that personal connection is amazing. I only wish I had named the site in memorials to my mother but will happily donate again when I can. I'm sure anything and everything helps and while I'm no longer caregiving, I don't think I could have managed as well as I have during as well as after my mother died without the TLC from the site.

Thanks again.

By dkleinert On 2009.08.26 00:25
Jim - Blessings upon blessings to you. I have only been on the site for about a year or so, but it has saved me. Days when I wanted to walk out and never come back, this site gave me respite, answers, information, a shoulder to cry on, incredible compassion and has become my safe place. Tonight as I write this to you, I am exhausted as others have spoken about. What you have given us is a true GIFT when we so need it. I know as I am only passing thru the 5th year of this disease with my husband (we know he had it long before his formal diagnosis and he is 68 now), I am comforted knowing there is this Forum and all who participate being truly, for me anyway, the only ones who understand and care......it means sooooo much what you have given to us. THANK YOU from the bottom of my heart. Donna in NC.

By Emma On 2009.08.26 04:47
Jim - Thank you is inadequate. This site is a lifesaver; just knowing that there is a place where we can be heard and understood is worth more than you will ever know. Before I found this forum I thought I was alone in this struggle, now I have a source of strength. You are truly a blessing.

By karolinakitty On 2009.08.26 07:55
Thanx Jim ... as i have been a part of many catfishing websites, due to our love of the sport, I know the time, money and heart that goes into a board like this. More over the HEART of this board. As i am fairly new to the board, the info given here has helped me see i am not alone. That there are many of us out there. Many who have been there and done that and can help us newbies cope and know what the future brings. While thank you doesn't say it all and doesn't pay the server bill, THANK YOU for the heart you have on keeping us as sane as we can be....

By WitsEnd On 2009.08.26 10:09
Ditto and amen.

By deedeesdaughter On 2009.08.26 21:55
Thank you so very much for this forum.
Parkinson's touches everyone that comes in contact with the patient.
You will never know how thankful my family is for finding this site....
For my family, the worst is yet to come, but knowing this site is here, gives us hope that we can get through this.
Thank you again.
Mary Ann

By Newcaregiver On 2009.08.27 08:24
It is so wonderful to have a safe place to ask questions and share information. You have made this possible. I just can't believe that there is not an organization that would help you with this cause. MJFox? I am sure you have explored every avenue by now. Thanks again.

By overwhelmedinFL On 2010.01.03 09:52
Thank you so much... I cannot even begin to express my gratitude. You have saved me from losing my mind this year.

By shirley On 2010.01.03 11:50
Many thanks to you! I discovered this web site by accident and have learned so much in just the past 2 months. I have discovered I am not alone and that is one of the greatest gifts ever.

By Mary On 2010.01.04 10:06
Ditto on all posts - Thanks so very, very much! Mary

By jsmitch On 2013.12.06 07:38
We quietly passed a major milestone recently -- surpassing 25,000 posts and 13 years of operation.

The forum's success is a tribute to the PWPs and Caregivers who routinely come here to hang out, blow off steam, share their knowledge and seek advice.

Jim

By mylove On 2013.12.06 09:10
Jim, I'm going to echo what others have said earlier in this post - thank you so much for quietly and tirelessly keeping us up and running. Congratulations on the milestone!

Reading back through this thread I see some familiar names from when I found this board in 2008. Seems like just yesterday. It makes me wonder who else may be still hanging in here. Al, how long have you been on the board? Is there anyone still here that's been here as long as you? Anyone care to share?

By jcoff012 On 2013.12.06 11:20
Jim, I sent you a small donation a few weeks ago and am on here today to encourage others to do so. I realize that it should have been much, much more, but perhaps if others would donate, it would start the ball rolling. A website is a great deal of work, but means so much to so many. Thank you from us all. Jane

By VioletV On 2013.12.06 13:40
Jim,
Well I'm embarrassed. I've been depending on this website for connection and information for more than a year now. And this is the first time that the DONATE button at the top has registered. I'll do what I can to rectify my inattention.

Do donations currently cover the cost of running/maintaining the site -- and any (well-deserved) "salary" to you for the work involved?

I can't say how important my visits here have been as I've made the transition from care-partner to care-giver. Thank you so very much.

Violet

By ResistanceFutil On 2013.12.06 15:34
Thanks to whoever resurrected this thread! Good to know the history here. This forum has already been very helpful; small donation sent!

By LOHENGR1N On 2013.12.06 15:44
ML, I found this site late fall (November/December?) in 2000, could have been begining of 2001, it was listed on the notice board in the back of a magazine at my Neurologists office. Then as Jim said the funding grant vanished and so did the site for awhile. Like Jim said it was and is a great site. I remember that like it was yesterday! I came online clicked to the forum and it was gone!?!?! I liken the feeling to going to the store and having your family move away while you are gone, not only move but take the house too! I'm not sure how long it was gone though it seemed like forever. I checked daily, then every few days for it and one day it was back! I reregistered January 31, 2003 and click...there were a couple of screen names asking the same question as I. When did it come back on? Then as days went by many happy reunions, familiar screen names showed up. I don't know Who has been here longer other than Jim and maybe some who labor with Him behind the scenes? I do know that over the years so many have come and gone, so many friends made and lost it is hard to keep track. And so many condolences written. Perhaps that is why I at times find it hard to keep my peace on some threads and topics. But I digress......If anyone else is here from long ago please step forward and say hey!

By Pearly4 On 2013.12.06 20:43
Popped in for a quick look and lo and behold I spot a post made many years ago! Can only once again say the forum is a blessing for Caregivers and you are to be blessed for keeping it going - thanks again Jim.

By carman96 On 2013.12.06 21:10
Jim, congratulations on so many years of helping us caregivers. Like Violet, I never really looked at the donate button. Hope my small donation helps in some way.
Thank you from the bottom of my heart for caring so much!

By umajane On 2013.12.06 22:13
Thank you for this site...it is a lifesaver...I am happy to donate and help out

By moonswife On 2013.12.06 22:38
Jim, I too have been clueless and missed the button "Donate". Please accept this donation today as thanks for all the questions you and other caregivers have answered for me, and for all the future support I will receive from the shared posts. Humbly, Justine

By mylove On 2013.12.06 23:31
We have been remiss as well. Donated, with our gratitude. Hope our small drop will help the bucket as so many have helped us.

By jsmitch On 2013.12.07 19:17
Thank you all for the kind words of encouragement and the donations. The funds will help defray the costs associated with maintaining the website and forum.

I'd rather there not be a need for a place like MyParkinsons.org but, until that day comes I'll do my best to provide a place for Caregiver support.

Jim

By parkinit On 2013.12.11 01:32
This is a great service to us. We so appreciate your kindness.

By makrivah On 2013.12.11 09:59
I've made a donation. If only I could do more to thank you for keeping this exceptional site flawlessly operational. Finding this resource and the wonderful people who post and care about each other has made this painful journey more tolerable. May God bless all of you.

By Mary556 On 2014.06.04 06:22
Thank You, Jim!

By moonswife On 2014.06.04 10:54
I notice my post from December, and thought about the fact I check the site twice a day, before and after work. (And then the work really begins....care giving). I have made it my goal to donate at least a dollar for every time I log on and read the supportive and informative messages. You are the best example of "pay it forward" I have come across in a long time. THANKS.

By JulieB On 2014.06.04 11:54
Wow. I'm so glad to learn this story. As a relative newcomer, I had no idea. Thank you, thank you. I so relate to the friend who said without this place to come she would have lost her mind. I have said that to myself many times this past week. No one really understands except those who are here. God bless everyone affiliated with this site...a real godsend! xoxo

By Daybyday On 2014.06.04 20:23
I so agree with Julie and all the others that this site is such a wonderful resource for us caregivers. Like many have said....it is a lifesaver and Jim, you deserve blessings galore. Thank you thank you thank you for all of your work; it is so appreciated. Donation coming.


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