Meeting on Saturday, February 21st at 10:00 a.m.!

There will be a Lakeshore Hospital meeting for the Dystonia Support Group in Room 200 at 10AM Saturday, February 21st. Please let us know if you can attend. We do have refreshments. There is no speaker scheduled. We do have some educational material and we need to discuss recent and future events.

RSVP @ 205-879-0902 or dystonia@firstsunbelt.com

 

 

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May 18, 2013 Meeting

MINUTES MAY 18, 2013

In Attendance:  Dick Darden, Polly and Bill LeVert, Mary Ann Culotta

Dick shared a new book out “LIVING WITH DYSTONIA” that he had brought with him.  Mary Ann also shared current newsletter research. She also shared websites Pat Wyatt had emailed her for the meeting.  Polly and Bill reported on problems incurred in doing the website and plan to update dates and add links etc.  The website is basically limited by design.  Mary Ann also updated everyone on the great progress of the worm shack that Ken Williams has solicited support for over the years. The drug is now in the clinical stage for study!  She also mentioned Tim Hornsby of our satellite group that is having a difficult time.  We are keeping him, Virginia and family in our prayers.  Their daughter, Rebecca’s blog has been a true inspiration and so informative.

Dick announced the National Spasmodic Torticollis Association will have their annual symposium this year in Atlanta, Georgia.  It will take place the weekend of October 19 -20, 2013.  We decided that since this is the same weekend that we are scheduled to have a DSGA meeting that we will try and get a group to go that weekend instead of meeting in Birmingham.  May of our members have this type of Dystonia?  If you are interested in going please let us know.  We will send more info later, as well as, when it gets closer to time.

Dick reported that we have $1,500.00 in the treasury and that 20 people have sent in their dues of $35.00.  Please send your dues in if you have not yet done so to Dick Darden.  He also plans to get the current list we are using for our emails to Ken and Pat to see if they can assist in making it more accurate.  We know there are those that have moved etc.

Our next meeting will be the July social/barbeque and it will be at 11:00 am on Saturday, July 20.  As usual the meat will be provided and we need everyone else to fill in the menu with sides and desserts.  Please join us for this time together to share and enjoy!  A notice will be sent in the first part of July to RSVP and sign up for what you would like to bring.  It’s always great fun.

The meeting was adjourned at 11:10 am.

February 16, 2013 Meeting

February 16, 2013 Minutes

In Attendance:  Pat Wyatt, Mary Ann Culotta, Polly and Bill LeVert, Virginia Hurst, Carroll Nason, Brenda Northrup, Bill and Helen Mazur

President Pat Wyatt welcomed everyone and because of the three new members we each introduced ourselves and shared/discussed our individual types of dystonia providing information and support.

A DVD was shown entitled “The Fifth Nerve”.  It introduces dentist Dr. Brendan Stack and neurologist Dr. Sims discussing a procedure that affects several neurological disorders including dystonia.  Before and after scenes were shown of various patients with cervical, general dystonia and other disorders.  An orthotic dental appliance is inserted in the mouth and almost instantly the body responses positively relieving the symptoms of the disorder.  It was quite amazing to see the transformation.  It is believed that the brain stem that signals the nerves to the brain are stimulated causing the effect.  You can learn more on www.thefifthnerve.com.

This discovery is in the early stages and the appliance does somewhat impede clear speech.  In the end of the video it says and we all agree that the new discovery has implications for further research for dystonia.  The National organization does not recognize this procedure as proven treatment at this time.  A good discussion followed the video.

The meeting was adjourned at 11:45 am and all were reminded that the next meeting will be in May on our usual third Saturday at 10:00 am – Lakeshore Foundation second floor meeting room.  The topic will be sent out later.

October 20, 2012 Meeting

OCTOBER 20, 2012 – MINUTES

In attendance:  Pat, Dick, Mary Ann, Josephine, Alice, Terri, Catherine and Jeannie.

The minutes from the August meeting were read and approved.  Pat and Mary Ann gave updates on people who had called for assistance/ information concerning dystonia and were helped.  It was reported that Polly and Bill Levert are working on updating the website and they hope to have it completed by the next meeting.  They are still gathering information.  If anyone has anything they can email Polly at pollylevert@bellsouth.net.  Virginia will continue to update the Dothan events.  (President, Pat Wyatt’s computer is down for now.)

Brock Herron of Merz Pharmaceuticals did a 45 minute conference call with the group.  He has been with Merz since the conception of the drug Xeomin.  He reported that they are continuing research on the product, but that it has been found to be very effective.  He discussed that not all drugs work the same for individuals and there are always some side effects.  He sent materials prior to the meeting and they were dispensed in order for everyone to follow along. He went over the guide for diagnosis and treatment, as well as, the patient co-pay program available through Merz.

We learned that there were three basic differences between Botox and Xeomin.  The Xeomin product that emerged about 2005 has the accessory proteins from botulism toxin removed so that it is a purer form.  It costs less than Botox and does not have to be refrigerated and thus compromised.  It also comes in a 50 unit size as opposed to the usual 100 units Botox.  This helps with the waste factor, et.

There was an excellent Q & A session after his presentation, as well as, a group discussion after the call had ended.  We all felt we had gained a greater knowledge after the presentation.  The left over materials are available for those who were not at the meeting. Email Mary Ann with your mailing address at maculott@samford.edu for a copy. The materials will also be made available at out next meeting which is Dec. 1, 2012.  This will be our Christmas Social.

If you would like to get in touch with Brock Herron from Merz for questions et his numbers are 662 703-9120 or 601 707-5366 and his email is bherron@merzusa.com.

Pat ended the meeting by introducing the magazine NEUROLOGY NOW for those not aware of it.  You can receive a free subscription.  Go to www.neurologynow.com.

We hope to see you all at the Xmas Social, Saturday, Dec 1 at 11:00 am, Lakeshore Hospital, second floor.  Mary Ann will provide the ham and a notice will go out a couple of week before so that everyone can contribute a dish. RSVP:  maculott@samford.edu.

NOTE:  We appreciate your patience while we work out the kinks of everyone receiving emails in a timely matter and as the website is being updated.

July 21, 2012 Meeting

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 maculott@samford.edu 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.