Hello,

I am Stella. I love to travel, read, cook, play games on my. IPAD, garden and see my son. I work in early childhood for a large school district. We have kids who are regular education and kids with special needs. At the beginning of my career in special education I attended a meeting with a parent who had adopted a child with Down syndrome (she eventually adopts two sons with Down syndrome). The teacher of her child who was at the meeting said "well Down syndrome kids.........." And the mom corrected her and said my child is a child first. He is a child with Down syndrome not a Down syndrome child. So I am a person who likes to travel and read. I am a person who has tested positive for HD. I am a person with 41 repeats. Just a thought for all of us to consider we are people first and the HD part is an add on. Thanks for thinking.

Stela, that was a very good and thoughtful post. And also, when we have "something", that also doesn't mean any illness we get is necessarily a part of that "something". One night a few years ago, I was having a stroke, slurred speech, one sided numbness, unable to walk, etc. And then I started having seizures. So my husband rushed me to the er. BUT, before we left, we got some aspirin and tranquilizers into me, and good thing we did. Because when the er doc heard I was early stage hd, he insisted I was just having my first bout of chorea. Meanwhile, he was galavanting around the er, telling every nurse, look, I have my first hd patient over there, and look, she's having her first bout of chorea, and is having a panic attack from it. Yeah. The seizures only stopped when my blood pressure finally went down, and the ONLY reason my blood pressure went down was because of the meds I took on our way out the door. They did nothing for me, just watched me for hours while my husband was freaking out. Yup, went to my own doc the next day, and she was furious. She said it was a mini stroke for sure, and that the seizures, even though I have no seizure disorder, were from the stroke. She said thank god for the meds I took first, or it would have been a full stroke. Now when I go to the er, I don't say I have hd right away, so that I don't "cloud their vision" of what could really be going on

Good idea Barb!