Well, hello to all!!
Rebecca and I made a whirlwind trip to the “Windy City” (Chicago), but we had a blast!
We attended the Dystonia Medical Research Foundation’s 6th John H. Menkes Children and Family Dystonia Symposium in Chicago. We left my house on Friday morning at 4:30 and got back to my house at 1:00 Sunday morning. With my complaints about the quick trip, it was an absolutely spectacular experience.
We met some of the most courageous people young and old. We met people that have had Dystonia for about 40 years and some that have been diagnosed with Dystonia in the last 3 months. Some that have had deep brain stimulation (DBS), some that are considering DBS and some that will never consider DBS. There were some that got around as pretty as you please and then there are those that are forever dependent on a wheelchair and an assistant dog. I wish everyone could have heard and seen all of the reactions from those that were seeing friends they had not seen, you would think in a century.
The families of the Dystonia patients (young and old) were the most supportive families.
After the dinner on Friday night, there was a DJ that played music and we had some wonderful karaoke singers. It was so uplifting to see so many Dystonic patients (regardless of age), along with families or friends dance and sing. Some that are wheelchair bound, on the dance floor as if there were no wheelchairs in their way. Parents and/or friends taking some of the patients out of the wheelchairs and dancing with them. Everyone seemed to be free of whatever type of Dystonia they have been diagnosed. I know I watched in complete awe at how some of them were so oblivious of their situations and surroundings. Yet, there was so much respect for everyone’s space necessary for each person to get around.
Rebecca spoke at a meeting on Friday afternoon concerning her involvement with the Dystance4Dystonia 5k Run last year and the one coming up on September 24, 2011. DMRF’s support of this is great. They helped so much last year and have upheld that support this year.
Saturday, we listened to many physicians speak on what is going on in the Dystonia world. After they spoke, there was a question and answer time. Among the information from the physicians, the questions asked were just icing on the cake. So much area was covered.
Sadly, we had to leave a meeting at 4:30 Saturday afternoon to catch a flight to Atlanta. We said our goodbyes and our thank you’s to all involved. I am not going to try to name everyone, because I would leave someone out. However, it was all well organized and thought out. Everyone was treated with the utmost respect. Rebecca and I also participated in an interview with a film crew. They are working on a video that should be coming out soon, that will hopefully show everything I have described and more.
So, for now, mark your calendars for September 24, 2011 for the Dystance4Dystonia 5k Run in Dothan, Alabama. Our next meeting will be on September 10 in Dothan. Then we will meet on Friday, September 23, to get things set up for the race.
