|Posted by Don Peaslee ® , Mar 20,2001,20:46||Archive|
We are always concerned about the light levels in our meeting rooms. Each time we work with a hotel staff we stress that our patients are extremely sensitive to light and that we want the light levels to be kept low. They nod wisely, agreeing that they understand and will certainly abide by our wishes. Time and again, however, some low-level janitor comes along, sees what he thinks is a too dim room and turns up the lights. To make matters worse, the light controls are often in a remote place so we cannot find them to turn the lights back down. Then we send someone (me, for instance) to find a hotel official to correct the situation. It is not uncommon for this to happen several times during a conference weekend. Teaching the hotel staff to do it our way is a never ending task since we meet each year in a different hotel. All I can say is, we try and we do our best. Anyway, as someone noted, a lot of us wear dark glasses in the meeting rooms. You also see a lot of caps and visors in use to protect people from the overhead lights.
As is frequently observed on the BB, those of us with blepharospasm have
widely varying symptoms, though some of them are pretty common. Most of us have photophobia (light sensitivity), though for some it is much worse than for others. A good number of patients (perhaps half of us) are more bothered by fluorescent lights than incandescent ones. I’ve never seen a study about why this might be, but perhaps it has to do with the blue-white light color of the fluorescents that is similar to sunlight (which also bothers us). Anyway, when we are in public meeting rooms we are frequently subjected to fluorescent lights
since they are the most economical way to light a large area. Again, we can’t change the world but we can put on dark glasses.
Finally, we arrive at the subject of the use of projectors for the medical presentations. The first thing to understand is that the Scientific Day (all day Saturday) is by the doctors and for the doctors. These presentations are for CME (Continuing Medical Education) credit. All doctors must accumulate a certain number of CME credits each year to maintain their active medical licenses. By special arrangement we are allowed to audit those presentations. We are fortunate that most of the doctors recognize that laymen (laypersons?)
are present and soften their vocabularies so we can understand some of what they are saying. The morning and afternoon doctor panels are also done for us in our own language out of their generosity. The doctors are not going to stop using projectors because some of our patients find it painful. Again, wear dark glasses or close your eyes like I do. As someone pointed out, there is usually a book of abstracts of the the medical presentations that is distributed to us all. Much of what is in their slide presentations is often also printed in the
The coming conference in Scottsdale in mid-August will be a new experience for most of us. A few years ago we had one in Dallas when the temperature was 108 so this isn’t likely to be much worse. I visited the hotel to observe the facilities. It is a beautiful place and the meeting rooms seem to be conveniently close to each other but you must go out into a patio area to move from one meeting room to another. I visited the patio in January when the temperature was about 70, but they assured me that they use “misters” in the summer and
that those keep it quite cool and comfortable without making the guests soggy. There is a bright side to meeting at this hotel in Scottsdale in August - we get to stay in a luxury hotel we couldn’t afford if the weather was good.
Finally, one important page in the conference packet you are issued when you register, is the conference evaluation form. Please use it and explain in detail what you like and what you don’t like. We go over those evaluations in detail and make alterations, where we can, to try to make the next conference a better experience for the greatest number of people.
A trip to a conference is a major financial investment. Many people feel it is such a valuable experience that they attend every year, or as often as they are able. If you are a new patient and attendance is a possibility, I would recommend that you do everything possible to make it a reality. I think most people who have been to a conference have not regretted their choice. Watch for the registration announcement in the coming newsletters. WARNING: if you have not been getting the BEBRF newsletter it means you are not on the mailing list. You can correct that immediately by going to the main BEBRF site
and either phoning or e-mailing the Beaumont office.
I apologize that this has turned into something between a short story and a novel. Since I am a daily “lurker” on this site perhaps I am trying to make up all at once for my failure to inject my “two cents” more regularly. Actually, the reason I don’t sound off more frequently is that other patients generally say what I am thinking, and state it more eloquently than I could.