Neuropathy Group in Indianapolis

    • Anonymous
      August 11, 2008 at 7:38 pm

      I would like to let you all know about a Neuropathy Group–part of the Neuropathy Association that meets monthly on the north side of Indianapolis, if you were to be interested. It is officially the Support Group of Central Indiana, but since these diseases are so rare, people may consider coming from further away as I went to the GBS meeting/support group in Dayton, OH. It meets almost every third Monday of the month from 6:30 to 8 pm. There is a neurologist that runs it–Dr Margaret Frazer. It is really more of an educational session and discussion than what most people think of as a support group. (No one has really talked about emotions, which may make the guys glad! and there have been no tears when I was there.) Anyway, it is really informative. People have all kinds of reasons for neuropathy–including diabetes, after chemotherapy, sarcoid, small fiber, after Agent Orange, associated with rheumatologic illnesses, etc. I am the only GBS/CIDPer so far, but we all have a lot of the same issues. It is a new group; we have only met three times. It is open to anyone interested and adult family members/support people are welcome to come as well. The next meetings are August 18 and Sept 15. So far we have talked about the differences and commonalities in the various kinds of neuropathy, spent a lot of time on discussion of different medications that might help (and how to titrate them or manage to figure out how best to take them and on vitamins/supplements. Since we all share the problem of pain, this has been talked about most as well as balance issues, fatigue, etc. We have talked about a number of the “unusual” symptoms that people get such as hyper-sensitivity to having anything touch you. Most of the time, people start off with questions and it just rolls from there. I think there were about 12 people with neuropathy and maybe 7-8 family members present at the last meeting (spouses, daughter, friend). In the fall, a physical therapist is coming. The proposed topic is core strengthening. I have learned a lot from going. My guess is that there will be more discussion on life-impact and more sharing, but so far, sharing of stories has been brief as people go around the room to introduce themselves to each other. I am very quiet and have not felt uncomfortable to need to talk.

      It meets at St Luke’s United Methodist Church, which has donated the space for the meeting. It is the church Dr Frazer attends (and, incidentally, me), but most members are not associated with the church as the word has spread. Anyone sensitive, there is no prayer or “church activity” other than caring about each other. The address is 100 West 86th Street and it is one block west of Meridian which is also highway 31 on the north side of Indianapolis in the “Loop”. Since we are the “crossroads of America” there are lots of highways coming into Indy so it is pretty easy to get to from any direction.

      I hope if people live close enough by and can come, they will. It really makes a difference to help to understand if people talk about a topic for an hour and Dr Frazer is good at answering questions and explaining.

      WithHope for a cure of these diseases and a better life until then.

    • August 11, 2008 at 7:48 pm

      If it was a little closer, I would come just to meet you and hug you to thank you for all the help you have given me!
      Dawn Kevies mom

    • Anonymous
      August 11, 2008 at 7:57 pm

      Thanks. I hope I can meet you at the Symposium in Chicago. WithHope

    • Anonymous
      August 12, 2008 at 3:42 am

      Hmmm! Wonder if they have one in my local area. I would certainly love to go to one. And become a member! Might check into this!

    • Anonymous
      August 12, 2008 at 8:59 pm

      There is a support group listed on [url][/url] in Raleigh, NC as well as in Pittsboro and Greensboro. You could contact them about meeting times and places and what they do. Look on the website under resources, then supportgroups and then North Carolina.
      The GBS/CIDP site lists several liasons in North Carolina; one from Raleigh and another from Roxboro (near Durham). From Googling Nashville, these might be the closest, but check it out. If you contact the liasons, they might be able to tell you when the meetings are in that region.
      WithHope for a cure of these diseases.