01-01-2010 — Huntington’s Disease is a whole family affair. 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.
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09-19-2009 — Learning how to use your words can take a lifetime to learn. It is an art that takes a lot of practice, and it all begins with the realization that the people around us are NOT mind readers.
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07-19-2009 — We have all heard the saying that life is what you make it but many people do not realize that the way they perceive things plays a major role.
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05-30-2009 — There comes a time for many of us when we have to leave our homes and neighborhoods in order to seek out better medical care as our HD progresses.
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02-22-2009 — When I was a child I was told HD was something I would never have to worry about. My real father did not have it so I could not get it. Reality hit in the fall of 1996 when my father tested positive on his first neurological exam.
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12-15-2008 — One of the lessons that I have learned in this life time is that a little bit of faith can go a long way.
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11-07-2008 — This tribute to my best friend Lorna is way overdue.
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09-12-2008 — Huntington's families carry their own unique brand of stress.
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05-21-2008 — If we are going to live, we may as well live large.
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04-23-2008 — Talking to children about Huntington's Disease is a very difficult thing to do. Trying to put Huntington's into words that adults can understand is hard enough but when you have to explain it to children it is heartbreaking because the stakes are so much higher.
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03-03-2008 — Life is a struggle for many people. That is the tie that binds all of us together because we are all up against something. If you are feeling down or isolated then reach out to someone in your corner of the world. The support and understanding you need is there for the asking.
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12-17-2007 — It seems only fitting with Christmas only a couple of weeks away that I write this piece on miracles. Miracles come in all shapes and sizes, from the smaller ones that happen unnoticed all around us every day to the most profound ones that have a ripple-effect in our lives.
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09-08-2007 — Fear of the future is of huge concern to people who have HD and their caregivers and family members and friends. There is no crystal ball to see what the future holds for any of us whose lives are affected by Huntington's Disease.
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06-13-2007 — There are so many different challenges involved in living with Huntington's Disease. The trick is to try to look at our journey as a quest rather than a curse.
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03-28-2007 — You can not lose big unless you have loved big. And while losing so many of my family members has been difficult at best, I feel so blessed to have had that time to spend with them.
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01-16-2007 — Although Huntington's disease progresses slowly, sadly it does progress over time. We must make a concious effort to slow down what we can.
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11-28-2006 — There are so many different HD symptoms that a lot of people are not really aware of. This adds a lot of stress to relationships.
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08-29-2006 — I have recently learned that there are two types of denial with HD.
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07-13-2006 — There is no time to waste when it comes to living life and letting people know how much you care about them.
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03-26-2006 — Life can be such a strange thing sometimes. You are cruising along and everything is going great, and then out of nowhere life nails you.
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02-14-2006 — Testing positive for Huntington's Disease is one of the most difficult life challenges that one can face.
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12-04-2005 — It is such a shame that people living with the early stages of Huntingtons are so often mistaken for people who have been drinking.
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10-15-2005 — Finding support for HD can sometimes be a daunting task, especially if you are new to the HD world
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07-15-2005 — There are many different promises made around Huntington's Disease.
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06-19-2005 — The emotions involved in HD are overwhelming at times. It is like our sensitivity meter is doing overtime. Everything seems much bigger than it actually is. Having HD means living with a roller coaster ride of emotions every day.
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05-22-2005 — One of the many challenges of Huntingtons Disease, is the loss of body memories.
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04-09-2005 — Feelings of hopelessness, helplessness, and extreme depression are common in most people/families effected by HD.
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03-12-2005 — Being prone to anxiety and panic attacks is kind of like carrying around a loaded gun; you just never know when it is going to go off on its own. I find it controls my life more than any of my other symptoms, and yet it is invisible to those around me.
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02-06-2005 — I am always torn between forcing myself to venture out into the real world, or staying within the safety of my comfort zone.
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01-02-2005 — No one's life is still the same after Huntingtons enters their world, but depending on how they chose to perceive things, they could be even better.
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11-24-2004 — Some people say that denial is the minds way of putting off until tomorrow what it hurts too much to admit today.
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10-05-2004 — After years of wondering just what my "problem" was, I do admit that I am relieved that my problem finally has a name. I have always been very different from others and had a really hard time fitting in with those people around me. And I knew many years ago that there was something wrong with me because of my very odd feelings and behaviors. My "quirks" if you will.
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09-04-2004 — It is a toss up to say which is worse, growing up knowing you could inherit the disease that has ravaged family members all around you. Or finding out right out of the blue and getting the shock of your life, like I did.
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07-24-2004 — I am in the early stages and you would have to look hard to see the Huntington’s Disease. My HD is on the inside working its way out. I have often wondered which is worse. Having chorea and an obvious disability or looking "normal" but having many invisible symptoms?
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06-10-2004 — My journey to camp started with a road trip from New Westminister to Squamish. Staffer Linda picked up me Johann and Leslie and drove us out to camp.
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