A group of us with all forms of Progressive MS ( progressive relapsing; secondary progressive, primary progressive multiple sclerosis)from all over the world gathered together to form this, our own Progressive MS community in 1998. All of the staff in our forum are volunteers who all have progressive MS or who care for someone with progressive MS.
The members of our group are quick to comfort, to laugh, to share and care. We all have varying degrees of disability, but whether we use crutches or wheelchairs we all share the same spirit of joy for living.We are the only website on the entire internet that is exclusively for people with progressive MS or are caring for someone with Progressive MS.
The reason we formed this community is because we had become disillusioned with the majority of websites who seemed to cater for people with relapsing remitting form of the disease, but little understanding of progressive MS.
We found that most of the "educational material" or "information" on other sites is primarily for people with RRMS. Therefore, here and in our forum all of the current research; information articles; advice and support is exclusively about progressive MS - it is gathered from all over the internet and located in our community - saving you hours of "hunting and pecking" looking for more than the standard one paragraph you will usually find.
Also on the many forums and bulletin boards in other internet MS support groups you will generally see that folks with progressive MS are either ignored, get very little support OR worse still get "well meaning" but erroneous and sometimes hurtful advice - but not here - we all have progressive MS or care for someone who does - so we KNOW what you are saying - we UNDERSTAND what you are going through - without the need of lengthy explanation and debate - and we SHARE your struggles. Our community as a variety of different folders, including up to date research, medications, symptoms etc. We are also very fortunate to have Dr. Ben Thrower - one of the leading specialists in Multiple Sclerosis of all types and Dr Richard Shields - our resident pharmacist specialist- answer questions from our group. We have social workers and a psychologist consultant as well! We also have some folders just for fun - jokes, poetry etc. We also have our own chatroom with regularly scheduled chats. It is a private community and not open to the general public, membership is by application and exclusive to people with progressive MS, or people who care for a loved one with progressive ms...this is to protect your privacy and confidentiality. However, we do welcome questions in our membership folder from the general public and folk with RRMS.We are a group of people who do our best to live well, encourage each other through sharing our struggles with compassion and dignity.
We do not advocate for any particular treatment regime, drug company or treatment. We do our best to help support you to find treatments best suited for you as advised by your doctor.
Alternatively if you have no desires to pursue any treatment at all or just in symptom management your decisions there are also respected and supported 100%.
We believe that each person needs to find their own way on this journey, we are just here to keep each other company to live with dignity, to laugh, to cry, to vent - whatever expression is needed to help each other to get through the day - to live as well as we can. If you feel that this community of loving, caring, giving people is one which you would like to join, please complete the "application form for membership" - the post is found in the membership folder - just click on this link http://forums.delphiforums.com/PMSSG