October 2011 Update

Just want to be sure everyone is aware of the change in the date of the Holiday Social in Birmingham for DSGA.  Due to an unavoidable conflict, the date is December 10, 2011 at 11:30 at Lakeshore Hospital in Birmingham, Alabama.  You can go to the “Upcoming Events” and get the particulars.  I do ask you to please email Ken Williams at Klwmgw216@aol.com  with your RSVP as soon as you can.

Also, just to let everyone know that we have a final dollar amount raised on September 24, 2011 in Dothan, Alabama.  It was Alabama’s 2nd Annual Dystance4Dystonia 5k Run/1 mile Walk.  We successfully raised $14,523.00 that will go towards Dystonia Research through the Dystonia Medical Research Foundation.  Thanks to everyone for all of their support in this endeavor!!  It is a hard job, especially the week before the run and it could not have been done alone!!!  So pat yourself on the back for a super money raiser and more than that, an awareness raiser!!!!

There will be no meeting in November for the Dystonia Support Group of Alabama/Birmingham in November.  Our regular DSGA/Birmingham schedule calls for November-December meeting to be combined in the Annual Holiday Social the 1st Saturday in December, so mark your calendar for 11:00 a.m. on Saturday, December 3, 2011 for the Holiday Social in Birmingham.  This avoids interference with Thanksgiving and Christmas each year.

One of the directors will provide the ham & turkey.  Everyone is asked to provide various side-dishes, desert and beverages.   When we begin filling in the menu, we’ll send a newsletter asking for your attendance to let us know what side-dish, desert and/or beverages you want to bring.

We have several new members since the August 2011 meeting.  They are looking forward to attending their first DSGA meeting, meeting everyone and sharing information about Dystonia, dystonia treatments, research news and plans for 2011.  Also, the October 15, 2011 meeting concerning meeting plans and duty assignments for awareness, outreach, support, speakers and agendas will be informally discussed.

***  DSGA member, Richard, underwent Part 1 of Selective Denervation Surgery for his Cervical Dystonia.  His    wife, Janice, reports the surgery went well and Richard is anxious to get Part 2 of the Surgery completed.  Their doctor is Dr. Carlos Arce, Neurosurgeon at University of Florida/Jacksonville. Dr. Arce was trained on this procedure by Dr. Claude Bertrand of Montreal who developed the technique in the late 1980’s.  Since then, Dr. Arce has completed thousands of the procedures.  I was one of his early surgical patients when I had my 2 Selective Denervation procedures in Nov 1989 and January 2001.

Richard’s doing extremely well.  According to Janice, his head is straighter.  He has less pulling and pain, but anxious to get part 2 scheduled.  Richard?s job requires him to do a lot of driving on a weekly basis, so this was very important for him to be able to maintain good posture and no neck spasms.

***  James of Northwest Florida who attends the Birmingham and Dothan Support Group meetings opted for Deep Brain Stimulation Surgery. He had his initial bilateral DBS surgery in October and part 2 is scheduled for mid-November when the surgeons will implant the leads and battery.  They will be set on “low” and then gradually increased to optimum results.

He reports Part 1 (the most invasive) went well and he has not had any significant side-effects.  He is, obviously, anxiously awaiting Part 2.
***  Clay, son of Becky, from Texarkana, Texas, a long-time loyal DSGA member, who had Deep Brain Stimulation surgery at UAB about 3 years ago, reentered UAB at 5 a.m., 10/24/11.  At that time, the doctors had to replace a dead battery.  If you want to keep current with Clay’s “DBS journey” go to a dedicated web-site:

If you choose, you can leave a personal message for Clay on this linked site.  This journal was setup by his sister, a former college student who spoke to our group many years ago while she was living in Birmingham attending college.  Several DSGA members have posted “notes” in Clay’s journal during his journey thru the initial surgery.

***  Side-note on Deep Brain Stimulation:  I can count 8 present & past DSGA members who initially learned about DBS at DSGA meetings.  It’s my understanding UAB now does 2 DBS surgeries a week on average.  Most of you remember Dr. Harrison Walker, one of the neurosurgeons at UAB who performs DBS procedures and also Mike Tapley, the local Medtronic representative.  Medtronic is the manufacturer of the DBS implant.  Among those patients that have undergone DBS at UAB is former member Brad from Tuscaloosa and active member Ramona of Huntsville.  Ramona has been kind enough to demonstrate her DBS implant by using the remote to turn the system off.  At this point her dystonia kicks-in which at that point, she then turned the unit on.  The “difference” is in a single word – DRAMATIC.  ***

***  Pat’s 92 year old Mother is in very poor condition.  Pat’s Mother lives next door and Pat is her primary care-giver.  Pat is also the care-giver for her husband Bill, who has had multiple cancer surgeries.  Pat should be awarded DSGA’s CAREGIVER OF THE YEAR award (if we had one).  Everyone please keep Pat in your thoughts and prayers.

***  Dothan’s (Birmingham’s Satellite Group) fund raising event, Alabama’s 2nd Annual Dystance4Dyatonis 5k Run & 1 mile Fun Walk, was a huge success according to preliminary reports by Rebecca, daughter of Tim and Virginia.  Rebecca was the organizer of the event.  The run was on September 24, 2011 in Dothan, Alabama.  The funds raised go towards DMRF’s Medical Research.  The first count shows more than last year?s amount (which was over $10,000) was raised in the September, 2011 event.  Also, any ‘new’ money raised in August until December, 2011, will be matched by a donor with interest in DMRF. So, the majority of the monies raised were matched, which could mean the event was responsible for more monies to go toward Dystonia Medical Research. We are can’t wait to hear just how much more!!!

HOPE TO SEE EVERYONE IN BIG NUMBERS AT THE HOLIDAY SOCIAL . . . . 11:00 AM, SATURDAY, DECEMBER 3, 2011 —-2ND FLOOR CLASSROOM IN MAIN BUILDING OF LAKESHORE REHAB HOSPITAL.  If you are bringing a covered dish, dessert or beverages, please arrive 15 minutes before the official starting time so the serving table can be completed before guests begin to arrive.

Looking for a charity to support with a tax-free donation to cut your taxes???? Look no further than: DYSTONIA MEDICAL RESEARCH FOUNDATION

any new monies donated now until December 2011, will be matched, so your donation could be doubled for the benefit of Dystonia Medical Research!!!


Contact Ken Williams at Klwmgw216@aol.com for information as to the tax ID numbers, to whom and what address to send your donation.

Until next time,
Ken Williams, Volunteer Director
Dystonia Support Group of Alabama
Chapter of Dystonia Medical Research Foundation


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