Jooly's Joint: people with MS supporting each other

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Smiling sun Your comments

Thanks to everyone who sends me comments about Jooly's Joint!

Here's a selection of the messages I've received:

"I still remember dropping into JJ's five years ago when I first suspected MS and to this day I still recommend JJ's to people with MS for the fantastic support, the fun and the info. I've made some great friends from JJ's. There have been some great nights in chat at all hours. I've cried laughing with the fun we have. JJ's has brought so many of us MSers together from all over the world to share these good times and bad and without it some of us wouldn't know what to do."

"Despite the world wide spread of Jooly's Joint members, I think you establish a very inclusive environment. I checked out lots of places when I was diagnosd and it's where I felt an immediate sense of belonging. I understand the sense of isolation that MSers can feel, and your site is an important tool in helping people cope."

"I just wanted to let you know what a lifesaver Jooly's Joint truly is. When I was first diagnosed with MS, I had nowhere to turn. No-one knew what it was, there were only two books in the library about it and they were older than dirt! However, someone turned me on to Jooly's Joint and I thank God every day that they did. I can whine, vent, cry and talk to almost anyone here and they will know exactly what I'm feeling and why. I no longer hold the anger I once felt. I'm still angry, but not to the extent as when I first joined JJ. These people are the best in the world! We've been through some bad times and some worse times, but we did it together and we're still here! I met the most beautiful, wonderful, understanding people from all over the world when I first joined JJ's and we are still best friends to this day!

"This is one of the best MS sites I've ever seen. There's so much here that I needed. I'm glad my friend directed me here."

"I've made webpals from all over the world. We share all the good and bad times. We make each other laugh with jokes/funny stories. Thanks for the amazing way you bring us together!"

"Very helpful emotionally knowing you are not alone".

"The best. I needed help and you were there."

"This is a great place to talk to other people with MS. We all have this common bond that holds us together so we don't feel so alone."

"As I flipped through the profiles I fould a few people that had the same kind of problems as I did. I received a few emails from people reading my profile, who I've become pretty good freinds with. It's a great pick-me-up... kind of like a help group from home!"

"Great web site! I'm working with a 17-year-old with MS who really has no-one to talk to about his condition of his own age locally - I can't wait to show him this. He's hoping to get online for Christmas so this site will be a great start I hope. Keep up the fantastic work."

"Thank you for being here, you are all great. At the end of a long, tiring day I look forward to seeing you. Hope that you are well. Be happy."

"I liked the colourful pages, big logo and large writing. Will visit again soon."

"Very interesting site. At least I know I'm not alone, having read about other people's fears and problems. Not only that, I had a good laugh at various other bits too. Absolutely brilliant. Not what I expected."

"I found your site informative, accessible and fun. I'm passing your details on to all my other friends who have MS as I feel I got so much out of it. Thank you. Chatting to people all over the world was fantastic. I'll be back (very often). Well done."

"I try to stay informed about MS because my daughter has it. I'm very impressed, it is informative and fun. I will return here often."

Smiling sun People with MS who use the Webpals service say...

"I have two webpals, one in the USA and one in England. It is lovely to be able to contact different people and exchange views and experiences. I do not feel so lonely now. Our own MS group is great, but having the freedom of knowing I can email at any time is wonderful."

"I have several webpals, I've had to make a chart to keep up with who I've written and when!"

"Through email contacts made through JJ I learned how to get different backgrounds and colored text to my mail as well as making web friends from all over the world with similar medical problems as mine. To be able to compare problems is great."

"I'm going to meet up with one of my webpals next week when we go up north. It just so happens this person is just a few miles from where my husband grew up."

"I enjoy talking to all my webpals and also enjoy the chat room when I have the time to get in and talk."

"Soon it will have been 3 years(!) that I've been corresponding with my Jooly's Joint webpal. We met through the web site soon after my diagnosis, and have maintained a rewarding friendship since then."

"I've found this a most rewarding experience as I can't get to the once-a-month support group here in our area."

"We've exchanged interesting news and information about differing customs in the different continents (e.g. May Day festivities in England). At times we have also sent encouraging verses and postcards. Lots of the time we just pass on day-to-day ordinary news about families and occasions."

"Even if my diagnosis turns out negative, it would be hard to leave this site. What a bunch of loving, supporting individuals.2

"Sometimes the conversations include MS – like I’ve told them about the yoga week I went on recently. We've also compared the differing facilities and equipment available in the countries."

"My webpal is currently visiting Europe and, whilst in London, telephoned me for an actual voice chat! It was really good to speak to her in person. I’m so glad she phoned."

"I'm enjoying knowing my new friends and hope the links will continue."

"I've enjoyed the webpals site because I have met several people with similar interests and problems."

"It was quite an eye-opening experience to realize that there are so many people with at least one of the same problems I have. We are from different countries and are all different ages and backgrounds, yet we are able to understand and communicate with each other about our problems."

"Sometimes it's just comforting to know that someone understands what's going on in our lives."

"We talk about things other than our health so it also gives us friends to share our thoughts with and we also learn from them."

"I'm writing to 5 people and it brightens my day to hear from them. We may only write every so often, but we all understand that sometimes it takes time for us to get the energy to do even simple things."

Smiling sun This letter appeared in the 'New York Times' way back on 2 September 1999:

After reading your most engaging story about people finding love on line, it got me thinking about my experience of meeting friends on line. In particular, I thought about how I've formed cyberfriendships with other persons with disabilities. When my condition was first diagnosed as multiple sclerosis in 1988, fears surfaced of ending up isolated and alone. I suspect that this is a fear common to differently abled individuals. Since going online last October, that fear has been put to rest. How could I ever feel disconnected with my laptop nearby?

Last May, a California friend who also has MS (I live most of the year in Detroit) sent me e-mail about Jooly's Joint, a site where people with multiple sclerosis support one another. Jooly is a British woman of 28 whose condition was diagnosed when she was 20. In 1995, this cyberwiz put up what has become a very popular site. It has numerous resources, the most popular of which is her MS Webpals program. Individuals put up a brief description of themselves and their personal experiences with MS It is posted on a message board, along with a privacy-protected link for sending e-mail to the person posting the message. Sort of a "meeting" service for potential pen pals. What an amazing World Wide Web.
Patricia Lay-Dorsey
Detroit, Aug. 30, 1999

Smiling sun This letter appeared in the October 1999 issue of 'Internet Advisor' magazine:

I have MS and have joined an Internet support group: Jooly's Joint. Now I find myself with sisters all over the world, in places I have never even heard of before now. We see each other through the good times and the bad, share our problems and be there for one another. For some the Internet is the only chance they get to talk to someone all day.
Jilly Hitchcock, UK

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