Will Brown, Tue, 04/16/2013
This past Saturday I ran my annual 50 mile race at the Umstead 100 Mile Endurance Run in my hometown of Raleigh, NC. I have finished the 100 five times and the optional 50 miler 9 times, including this year. I’m also on the Race Committee and handle registration and awards.
Will Brown, Mon, 02/18/2013
I know when we fell in love. She was dating my roommate in prep school. Yes, I went to a snotty boy’s boarding school in New England. I wasn’t from a wealthy family, but had a working scholarship. I worked in the kitchen every day to earn my way through. She was from an old family and went to a snotty private girl’s school. I’m not sure how it happened – it just did. I was kind of a jock – co-captain of the hockey team and a starting attackman on the lacrosse team. Maybe that attracted her. She was smart and physically attractive.
Will Brown, Wed, 01/16/2013
We all know that exercise is beneficial for everyone. It’s particularly important for people with, or at-risk for HD. A New Year’s resolution made and kept will make you look and feel better. Do you have to go to a gym 6 days a week and sweat bullets to get in shape? NO!!! Do you have to run marathons? NO!!! Do you have to spend a fortune on fancy equipment? NO!!!
Kelly B, Sat, 11/17/2012
Delusions can be a big part of Huntingtons with some people. I have a sister who is completely delusional. It really keeps us on our toes to try to keep up with all the different ideas she comes up with. Trying to reason all the time with someone who has an altered grasp of reality and a 5 second memory span is a full time dance/job. She keeps coming up with these brilliant ideas but because she does not see her disability at all she feels she is capable of everything and everything.
Kelly B, Fri, 01/27/2012
The time will come for each and everyone of us when we will need someone else to do our talking for us. A few months ago there was something that happened that made it clear I had gone from needing a part time advocate to a full time advocate. I relocated again last winter and had to go through the process of getting a new dentist and family doctor. I have run into problems in the past with dentists as they do not understand that I have to be medicated for them to be able to work on me.
Howard, Thu, 04/14/2011
Back in 1982 after my daughter Allison was born, we knew that something was wrong with my wife Toni, we just didn't know what. She just didn't have the glow of a new mother and her apprehension was concerning. After four years of mystery and misdiagnoses, we were finally given an answer: Huntington's Disease. Since my wife was adopted as an infant, she had no family medical history. Thankfully, my mother-in-law was willing to help keep us going in those early years. Toni died in 1993 at the age of 33. Allison was 10 years old.
Kelly B, Tue, 02/01/2011
Having HD can and does make my life extremely complicated. Everyday things that can come easily to other people can become a huge struggle for us. Sometimes I feel like I am somewhat of a ticking time bomb because I have done incredibly well to make it as many years as I have with this disease. I know without a doubt that I am on borrowed time right now. The need to make every single day count before I progress too far is ever present. The fact that I am very easily confused add a lot
Kelly B, Wed, 05/05/2010
The question of when “onset” occurs has always been a hard one to answer. People in HD families have known for many years that their loved ones' deterioration with HD occurred years before the doctors would or could diagnose it. Our HD does not become real to the medical world until the day we are diagnosed as symptomatic. In the meanwhile we can feel like we are going crazy because we know something is seriously wrong inside of us deep inside but it can be invisible to others. I
Kelly B, Tue, 12/22/2009
Huntington’s Disease is a whole family affair. There is not a single member of any HD family out there who is not affected in some way by their HD family member(s). There are many sad stories, but there are just as many people out there who are fighting their own HD dragon with a bravery that makes their family and friends proud. %TR% My oldest sister is one of those HD heroes I speak of. Each time I see her she has declined further into her own HD journey. She is a window into my futu
Kelly B., Sat, 09/19/2009
