Whether receiving a first-time diagnosis or having lived with the disease for decades, it can be very helpful to share experiences through a multiple sclerosis (MS) support group. Medical professionals often can provide area network information for MS patients, and the National MS Society in the US has a list of local chapters as well as an online community. Phone and Internet directories also may provide information on local meetings at hospitals, clinics, or informal sites such as restaurants and homes. Finding the best multiple sclerosis support group from these sources can then be a matter of visiting groups and finding connections and a comfort level suited to the individual. In places where only one or no groups are present, connections may need to be made online, through word-of-mouth socially, or with the help of doctors and nurses.
Multiple sclerosis generally is debilitating on so many levels that those who do not suffer from the condition cannot fully know how to counsel and comfort as the disease progresses, brings exacerbations, or even when it is in remission. An individual with MS will likely suffer some form of brain, spine, or eye difficulty brought on by the nervous system attacks common to the disease as well as tremendous fatigue. Degree of severity and rate of degeneration, however, can vary greatly from person to person. Treatment success also can range based on trial and error per individual. Finding the best multiple sclerosis support group may require the same trial and error method.
Often an MS sufferer does not show signs of the degenerative nature of the disease — either in the early stages or even after many years. Individuals who do not have obvious signs of suffering can nonetheless be in a great deal of daily chronic pain, which is difficult for those without the disease to understand. With this form of MS, choosing the best multiple sclerosis support group may involve looking for peers with the same, less apparent form of the condition who can share experiences of looking “normal” but typically feeling unwell day-to-day or having periods of severe attack followed by periods of remission with an unknown length of time before the next exacerbation.
A number of MS patients may find themselves degenerating rapidly and losing motor abilities, control of bodily functions, or vision in a short period of time. Seeking the best multiple sclerosis support group for this course of the disease may include a desire to find others who are experiencing such great loss at such a fast rate and can share ways of coping emotionally and mentally; members of these support groups may also be more likely to be able to discuss what treatments are working or being put forth in trials as well. Because there is no cure for MS, word of mouth regarding treatments and experimental or holistic therapies that are working with one person may be a source of great hope for another in a similar stage of the disease.
Choosing the best multiple sclerosis support group may involve visiting a number of groups and just finding one that feels right for the individual. Early in a diagnosis, it generally can be difficult to see the disease in late-stage sufferers who may be in wheelchairs or sharing the end stage developments and life experiences; for others, however, it may be important to face all of the possibilities to come and to find support through those who have gone through it. Spouses, parents, and other caregivers of those with MS also may benefit a great deal by sharing experiences. Some may find the best MS support and therapy in groups who come together at one or many of the MS Society events scheduled to raise monies to fight the disease itself. Men and women with and without MS often come together to walk, bike, run, and wheel across the finish line to help raise funds for a cure.