Heather P (willimantic, CT US)
Rachel, this testimonial is I sent a couple days ago, but I noticed that it did not show the state I live, and so I re-read it and realized that there were a couple things I should add that were missing too. So, It IS a re-write, with a little more information. (in case you thought that was weird.)—> Hi Rachel, I have been wanting to write you and thank you for a long time, but I just never knew where to do so. When I first saw you, it was your song Feelings, being played on Nick Jr. I saw this video, and said to myself, WOW… Who is this woman? I didn’t catch your name on the screen that time, so I kept watching for you to come on again. When I saw the song again, I saw your name, and I looked you up on the computer and found out you had all of these awesome videos. I had been wanting to learn sign language for a long time, (and around the age of 12 I had used books to teach myself a few signs, and the alphabet) for many reasons… but more recently, it had become more of a need as well. Not just a want… (whether I wanted to admit it or not) I have had seizures since at least the age of 2. (that is when I was diagnosed with Epilepsy) But I very well could have been having them before that. My father who was abusive to both my mother and myself, (different ways to each of us) was kicked out of the house when I was about 2 and a half years old, and it was then that the seizures were noticed. So… at that age, the Pediatric Neurologist diagnosed me with having Complex Partial (Temporal Lobe) Seizures/Epilepsy. The noticeable seizures were, I would put my right hand over my mouth and blow bubbles in my hand. I was conscious because I would answer peoples yes/no questions by shaking my head but I would not talk. At 6 years of age they removed me off the medication that I was taking for the seizures, and told my Mother that because children can grow out of seizures, that we would try leaving me off the medication, and she was to contact them if she saw anything that looked like I was having a seizure. Well, I continuously was telling my Mom that I was feeling sick, but at that age, I didn’t know what else to call it, and she had no idea what it could be… so, when this kept up for years, and people telling her that her daughter was probably just looking for attention… (if I didn’t have a fever, and she didn’t see any signs of illness, what else could it be, right?)… So, when I just started getting ignored and nobody would do anything… I would just hide when I got these horrible feelings!!! Then finally when I was 12, my Mom saw me actually have a seizure in front of her. This one was different. I spaced out, Started smacking my lips, and my arm curled up. So… she finally thought something might be wrong! And called the Neurologist and made an appointment. After almost 18 months of trying medications and different dosage, he gave up, and said I would be better off with an adult Neurologist. So, I was referred to an adult Neurologist, whom, now, I have been seeing since … I think like 1990!! These seizures have increasingly gotten worse over the years, to the point where I have even been having grand mal seizures sometimes. When I wake up on the floor in the middle of the night, I know I have had a pretty bad seizure, and if I bit my tounge or have had incontinence, then I know it REALLY was bad. Luckily those are pretty rare, but they do happen. I don’t have a medication that will wipe out my seizures 100%, because I have scar tissue in the part of the brain called the hippocampus (which technically is part of the temporal lobe) You can yell at me if you want for all this information… most people do… they tell me that I know way to much neurological information for the average patient… and then I tell them, that’s because I am not your average patient… and I have been studying this stuff and have been learning these things since around age 8. But anyways, As I was saying, my seizures have gotten much worse over the years, but that also, in the last 4-5 years has included me noticing a bunch of extra side effects that are getting much MUCH worse, and much more often. These include a bunch of different types of Anomic Aphasia, Auditory Hallucination, Musical Hallucination, and some other things that I do not even know the names of as of yet… when I have a bunch of seizures, and these side effects or after effects follow, sometimes, I find it very difficult to talk because everything that I am hearing echos over and over and over again, and so I can try to to but it will all come out wrong… There are other times that everything that I hear is wrong… I can talk just fine, but everything that I am hearing is dyslexic. It makes it difficult for me to talk, yes… and sometimes depending on how LOUD everything is, in my head, I may not be able to talk. THIS is why I am actually thinking I eventually NEED signing. Because, if I get pulled into a hospital when something like this is going on, and I can’t talk, I will not be able to tell them anything. Unless I have a paper and pencil with me, and my ability to write is okay at the time, I could do that. But otherwise, I would have to depend on them to assume they know what they are doing, and I have been in that situation before, and I DO NOT LIKE THE OUTCOME, unless my Neurologist is there!!! So, Rachel, I know I have sent you through a huge story here and a lot of information, but I want you to know, that your DVD’s are not just for kids. I love your music. I have wanted to write you for a long time. I hoped to be able to talk with you. (as I am sure many people do) You are incredible, for a lot of different reasons! Keep up the awesome work!! Thank you Rachel!!