I am the 5th generation with HD. My Grandma had "huntingtons chorea" which is what they called it then and she passed before 60 after years of being in a nursing home. My dad had Hd and died in 2013 at 55 from slow brain bleeds after he was attacked and robbed in him home where he lived alone. He of course had severe movement and extreme anger issues. I finally got him to go talk to his dr and get a diagnosis but he refused to take any of the medication. In October of 2013 ( after years of debating if I wanted to live with not knowing or find out and hit it head on) was diagnosed with HD My CAGS a are 43. Basically he told me that if I wanted to do anything that I needed to do it now he was definitely doom and gloom about it. I have known for many years that I had it. I have suffered from depression, anxiety, extreme fatigue, some anger, not being able to cook, and clean the way I used to. I was a stay at home mom who did volunteering at the kids school room mother, working in the library, being in charge of book fairs and I drove kids to all of events in town. Then I started not remembering how to work the cash register, unable to find the right words, my mind would go blank when I was looking up books on the computer, forgetting passwords, my spelling was way off, and math was something that wasn't able to figure out its like my brain just froze. I quit going to anywhere in public alone as I was so afraid sometimes I would hurry up and leave so I could go to the car and just cry. Terrified to look strangers in the face. I went to a neurologist in 2006 I was told I was to young to show any symptoms and basically shoved me out of the door. I sleep up to 12-15 hours a day however when I get up I can have quality time with my family. I now after seeing an amazing family dr and a wonderful neurologist who works a large amount of us. He was the first one who made me feel that I wasn't crazy, as I talked to him he seemed to really understand what hell I was living. So he works with my doctor on my medicines and I am finally starting to feel better, not perfect of course but so much better.



Edited 1 time(s). Last edit at 05/14/2015 09:06AM by Atchisonboy.

Welcome back. That was good news at the end of your post. The right doctors and the right medicines can make all the difference.

Best,

Will

I was speaking to a friend this weekend. He was diagnosed with throat/neck cancer a few years ago and I guess he was around 50. Took us all by surprise. When we run into each other we talk about how bad we could be doing in relation to how we are doing. I think that helps, especially from someone in similar shoes. He was left disfigured from his surgery and struggles with his nerve damage but he trudges forward. We both agree that we can laugh or cry about our situation. Neither will change it. However we feel much better when we can laugh instead of crying. Nothing is going to change, right? That is what I try to remember. Good luck to you.

Mike