My sister will even tell you we give ourselves Dystonic storms if we knock a cup off the table or accidentally drop something so that is our fault. I do not know how many times I have given myself a storm by doing these very things. One thing I do not want and I know my family does not want is everyone walking on egg shells while they are around us. Yes, be courteous, be mindful, but if we have a storm as a result of something you have done we will not get upset it happens regularly and as a patient you have to learn to laugh at yourself or you will find yourself crying all the time.
One big difference I would like to point out is the ability to prepare for a noise. Our church is very near the train tracks, and if i hear the train coming down the tracks I can prepare myself for the whistle and it will not trigger a storm. My sister cannot it will not matter if she knows it is coming she will have a storm as a result of the whistle.
Another trigger I have found is that if someone is talking to fast or giving information at a rate that my mind cannot follow this can also trigger a storm. there are sometimes I cannot follow my pastor at church. It has been that way for awhile I get lost and I have no idea how he is connecting the pieces of the sermon together, in other words I do not get the point so if I continue to listen it will trigger a storm because my mind is trying to follow but can't, and believe me this can be very frustrating. It is the same way with big crowds all of the noise echos through my head. Most people think it is my ears, and while I do have problems with my ears, that is not the cause it is in my head, and even if I find someplace quiet it can take hours for the noises to go away. I can still hear them. So yes I may walk outside to get some silence, but it is not because I do not enjoy being social, I do, It is because my mind cannot handle all of the different conversations going on.
Speaking for me because I do not know about Rachel ,My sister, is I can keep track of every conversation that is going on in a room. I know who is talking to whom and what they are talking about. I do not do this on purpose it is just how my mind works, and when that happens my mind gets inundated with so many things at once that it cannot handle it. So I go somewhere where it is silent.
So please do not think that I am anti-social or do not want to visit but there are sometimes that I cannot. That is why I think this blog is important because most of the time Dystonia patients are misunderstood, and people get upset with us and we have no Idea why.
There have even been times when my wife was talking to me about something that was important and I have told her we will have to talk about it later. It is not because I do not want to talk to my wife it is because at that moment I cannot handle the conversation, and we will have to pick it up at a different time, yes this is frustrating for her, but she does not get upset because she understands, However it would be nice if on occasion someone would call and see how she is doing. That rarely happens she feels alone most of the time, and I cannot help it, but for those of you who know her a phone call just to talk she would appreciate. Just so she knows someone cares. She does not get to go to church very often anymore, and she doesn't get out because she can't leave me. For some reason people forget about the care taker, and focus on the patient, but you can ask my family. This is a family disease, and though I may have it my wife has it as well because she is the one who takes care of me.
I want people to understand this disease so please take the time to read it. If you do I thank you, and maybe you will understand a bit more about what my family goes through with this disease, and maybe you will understand the disease better! God bless and yes please pray for us we need it!