Saturday 26 August DDG Dystonia Dystonie Gesellschaft had a member meeting in Fulda at hotel Esperanto. This also marked 30 years of the organisation and in the evening there was a Anniversary Dinner. Dystonia Europe was invited and President Edwige Ponssel and Operations Manager Merete Avery attended.
The meeting started 9.15 in the morning with President Hedwig Hagg welcoming all, followed by the Mayor of Fulda Dag H. Wehner who said that the patient organisation play an important role, where patients can learn more about dystonia and meet other and share experiences and how to live with best possible quality of life.
Next Prof. Dr. Dr. Dirk Dressler held a very informative presentation on Cervical Dystonia. One of the points he made was that if one has their first symptoms when 40—65, often the course of the dystonia will stabilize afte 3-5 yrs. This is important for patients to know as compared to many other degenerative neurological illnesses, cervical dystonia mostly does not progress after it has stabilized.
Also when treated with botulinumtoxin it may take more than 1-3 treatments before the effect is at its best, and even then the effect may vary some from treatment to treatment.
After a break where people connected while enjoying good food, Lilli held a show for us, called «laugh with Lilli». We laughed a lot.
Then there were four more presentations. PD Dr Tacik held a presentation on «It is impossible to hide dystonia and information about new therapies». Many try to hide the symptoms when they first appear as there is unfortunately a lot of stigma when you do not have control over the movements that comes with the dystonia and the body does not function the way you want it to and there are involuntary movements.
Dr Zech spoke about research, this was a very high level presentation.
Susanne Mombers spoke about «Courage and follow your own heart». Last Jennifer Sixt held a presentation on «Alexander Technik as a Retraining Method for musicians Dystonia».