Hello community members – My name is Nicole Schulte and I am the new Manager of MSconnection.org. I have been living with MS for 11 years, and I know how important it is to find and maintain a supportive community of people who understand what you’re going through. I am very excited to be a part of this GREAT community, working to make it a helpful resource for learning about the many aspects of life with MS, while providing a safe environment for you to connect with one another.
In order to do this I need your input.
- What do you appreciate most about the community? What part of the community inspires you to live your best life?
- What area of MSconnection.org is most important to you – Discussion, Groups, Support, Blogs? Why?
- What topics would you like to see more of?
- What changes or improvements would you like to see in the future?
Welcome Nicole and best wishes for a successful tenure in charge of this place.
I appreciate the candid communication, even though sometimes I misinterpret . I am very selfish so for me the best revenge is to'live well', and hearing about how the community is having as many difficulties as I have had moves me to more revenge.(lol)
The discussions do not segregate the people and is a mix of everything.
I would like to see the search box repaired, try searching for: Take Charge of My MS. You will not find it though it is under treating ms.
I would like to see the Topics under the browse by topic with sub categories sorted. Every day or nearly every day there are the same questions posted, over and over. Nearly every question has been discussed here but no one can find them. Making it more concise will get people to the info they are looking for as well as a larger variety of opinions about how to deal with it. There is nearly five years of data here, on everything that we care about, but there is no way to segregate that data into one page so we do not have to scroll page after page looking for the answers we want, especially newbies who need immediate assistance with info.
I would also like to see the number of persons who are on the site right now. Many of the visitors are quiet participants and out be counted right now.
Finally, I would like to see a chat page on the discussion page, to the left of the discussions, so anyone can drop in without having to set a topic, just to say hi and to be able to see what is currently being discussed.
Thank you for the great suggestions, keep them coming! :)
I like the fact that I can read about other people's experiences that are similar to my own. Discussion is most important to me. I would like to see the discussion of the month be more geared towards types of treatment so we can see other opinions on how well a certain therapy or treatment worked for them. Such as HSCT, Paleo diet, etc.
Thank you! You have some great suggestions, please feel free to post some more. :)
You know Nicole, it would be nice to get some progress reports. I have made these suggestions before, and then never heard anything more. So, it would be nice to hear, the programmers havent figured that out yet, they are working on it, there is no room, or anything to let us know that these suggestions have been considered.
I would like to see more results of research, just in general more information that we can use to potentially fight this disease, Information on transitioning to secondary progressive and what secondary progressive is exactly in minute detail. Just anything that will give us knowledge.
You have some great suggestions and I will certainly make a note of them for future Discussions. We do have a page on our Society website that explains Secondary Progressive MS and a section called When the Transition to SPMS Occurs. Here’s the direct link for you. As always if you need more specific information don’t hesitate to call a Navigator 800-344-4867, they can help you get the specific information you need.
Secondary Progressive MS