Managing Your Own neuropathy TreatmenT

The following article is part of on-going series on how to be a better champion of your own care and treatment for neuropathy as featured in Neuropathy News. Over the next several months, we will explore how to navigate medical discussions, insurance claims, and other issues impacting your day-to-day management of your illness.

Part VI:   BENEFITING FROM SUPPORT GROUPS for neuropathy

An earlier article in this “Managing Your Own Treatment” series mentioned getting involved with a support group.  A support group is a valuable asset in learning about your peripheral neuropathy (PN).  We have well over 100 established groups across the U.S. that provide you with monthly meetings where you can meet and speak with others with PN, hear medical professionals discuss various aspects of PN, find knowledgeable doctors in the area, and ask questions that you might be unable to ask of people who do not have PN.  The support group gives you an opportunity to participate on committees that help the group function.  The support group is an excellent opportunity for the person who becomes the group’s leader to inform group members of the best way to get a good diagnosis by suggesting people write their medical history.

If there is no support group in your area you might think of becoming a support group leader.  We are very supportive of new support group leaders, and we provide a full packet of information on setting up the group.  Many groups have neurologists who will speak to the group and help the group find a local hospital which will offer a room for the meeting.  Once a group has established a location in a local hospital, there are other hospital personnel who you might find to speak to the group, such as pain specialists, physical therapists and occupational therapists.

Groups usually meet for two hours once a month.  Part of the time is used for support group business, part for a speaker with a Q & A session, and then the remainder for breaking into small groups to discuss problems of interest to the members.  For example, a subgroup to discuss pain, a subgroup with motor problems, or a subgroup of people who want more information.

The Neuropathy Association’s Support Group Coordinator is Paul Guidos.  For more information on starting or running a support group, Paul can be reached at 212-692-0664 or at supportgroups@neuropathy.org. 

For general support group information, contact the Association at 212-692-0662.

And, as always, be sure to visit The Neuropathy Association’s website, www.neuropathy.org.

    Part I:     Becoming Your Own Best Neuropathy Advocate

    Part II:    Improving Your “Deficits” to Make Life a Little Easier

    Part III:   Navigating the Seas of Social Security Disability

    Part IV:   Understanding Your Medications

    Part V:    The Value of Occupational Therapy and Assistive Devices

More Living with Neuropathy:

• Managing Your Own Treatment ( A Six Part Series )