NOTES FROM THE July 21, 2012 MEETING
Pat Wyatt chaired the meeting and welcomed all. There was much to be discussed since Ken will no longer be doing the multiple duties that he has for so many dedicated years. We all acknowledged his contribution and expressed gratitude. It is now a new time for DSGA and we need everyone’s helps!
Dick brought current dystonia research information to share. He also recommended that all members make a practice of bringing copies of pertinent information to share at future meetings. An interesting discussion followed concerning a relatively new product, Xeomen by Merz Pharmaceuticals. It works similar to Botox but is of a different derivative. It may be a good alternative for those who are not having success with Botox. He also discussed psychiatric equipment used for treating depression that is now being considered to treat other troubled areas of the brain.
Mary Ann mentioned a new finding for spasmodic dysphonia that recommends talking immediately and often right after Botox treatments. Research shows that the Botox is more effective in this way. Interestingly, this is the opposite advice given prior to patients.
Other members shared information/ experience with exercise used therapeutically. Tips were given for better communication at the doctor’s office. Polly made the suggestion that brochures be reprinted and dispensed in “key” doctor’s lobbies and dystonia centers for advocacy/recruitment.
The website was discussed and it was decided that several volunteer members will be listed as contacts for dystonia specialties, such as cervical, general, spasmodic dysphonia ect. In this way, they can assist new website inquiries. Dick will comprise a list of names/numbers to be posted. Polly’s husband is a retired IT person. She will ask for his assistance in revitalizing the current website. We will also post the new schedule for upcoming meetings. It was decided that the organization will host a Dystonia Symposium similar to the one we had this year and in the past every three years for new and current members. Membership dues remain $35. The financial report shows a balance of over $4,000.
The new meeting times will be at 10:00 am on the 3rd Saturdays at Lakeshore Rehabilitation Hospital, second floor as usual. However, we will meet five times per year for the months of February, May, July, October and December 1. Other venues of interest for members will be announced throughout the year.
The July and December meetings will remain social events and support discussion. The others will include a program plus support. Possible topics to be investigated/scheduled: Cervical Dystonia and a new dental procedure being done for relief (Pat M), Meeting with the Birmingham Parkinson group to explore merging certain common efforts (Dick), Investigating the Santa Fe Torticollis Clinic as a resource (Dick) and Inviting the Merz Pharmaceutical Representative to discuss the drug Xiamen in lieu of Botox (Mary Ann). Once these have been firmed up we will post on the website and send an email to each member, as well as, reminders.
After the meeting was adjourned we enjoyed a fabulous barbeque meal and fellowship together. We all agreed that that our primary mission now is to be there for those that need us and to strengthen the organization through members so that we can provide ample care, information and advocacy. Please email firstname.lastname@example.org or any DSGA officer if you have further ideas and suggestions. DSGA needs active volunteers to give back to others. We have all experienced the pain and alienation that often comes with dystonia, but we remain hopeful people that a cure will be found even if it’s in the future.