“Do you attend MS support groups? You may find this interesting.”
In this study 65% of participants had attended a MS support group meeting at least once.
Individuals who had never attended a support group were more likely to reside in urban or suburban areas, reported lower interference from MS symptoms and fewer limitations in activities of daily living.
Women without a helper and people with greater interference from MS symptoms were more likely to perceive a need for a support group.
- “Some of you have criticised research of this nature in the comments you have posted in the past. However, it is important that this type of soft research is done.”
- “We need to continually ask ourselves if the services we provide MS’ers are effective or not and how can we improve them.”
- “At the moment we are in the middle of a study looking into our own outpatient services with the specific brief of trying to improve the experience of MS’ers attending our hospital.”
- “Our research is not all about trying to find the cause of the disease so we can prevent it, but a lot of other things as well.”
Prof G,Just my viewpoint / experience:Attended such a local group when had been recently diagnosed (MS nurse suggested that it might not be a good idea).Some in group much more disabled (whch was scary) and some of the discussion was about different medication / equipment. Also, a tendency to think that just because you've got the same disease as other people, you'll all get on. For soem it was there onlytime out of the house each week, while I and some others worked. I didn't find it particuallry helpful. We all agreed that the disease sucks and life was unfair etc. Some moans about MS nurses and lack of treatments. Would have been more useful if tailored to age / type of MS / stage of MS etc.
Re "Would have been more useful if tailored to age / type of MS / stage of MS etc." I agree. One of the problems we have in clinic is mixing recently diagnosed MS'ers, who are well and fully functional, mixing in the waiting area with people with advanced MS; they find this very upsetting. We are trying to develop a system to separate these groups or at least handle the interaction in a more sensitive way. Any thoughts on how?
I don't think it is necessarily a good idea to think these groups benefit from being kept apart. As someone who attends a physio class at a therapy centre, and has attended several other group meetings I think the most helpful aspect is to have a purpose or focus for the meeting that is not not necessarily MS. This enables people to focus on things other than MS and discover what they have in common, despite different levels of ability/disability.I find that often there is an assumption of one size fits all in many things related to MS. There are many subtle differences between people, depending on physical issues but also their personality, level of determination, optimistic/pessimistic outlook, help available, income etc to name but a few.
Why do all complain:(I suffer with MS R/R.I do go to groups 2 a month a meet people with Beging to advance MS we eat and drink together, mixer in age from 20 to 70. We have laugh we drops(WE SUPPORT each others)Reading everybody message is DREPPRESSING:(.Be Optimistic, is good to you mind and body, even when is difficult:-).
Keeping MS sufferers separate as not to scare them because of the outcomes of the disease? What is this? Apartheid?
Some of the most useful information about MS for me has come out of conversations I've had with other people in my local support group. I'm lucky because in my area there is support specifically for MS'ers who are "young" – we range from about 20yrs old to late-40s, generally, and meet in a bar. Yes, much of the conversation revolves around MS and I think that's mainly because it's a once-a-month opportunity to discuss how people are getting on and swap experiences and advice. I've found their support and advice both valuable and relevant, mainly because we're all in similar stages of the disease and have similar lifestyles e.g. many of us still work, are relatively physically able etc. Therefore we tend to face similar issues and can address them accordingly.