Blogs

Finding Support

Finding support for HD can sometimes be a daunting task, especially if you are new to the HD world and do not know the different things available. Everyone involved in the HD family needs that support, not just the Phd. Family and friends are our best bet for support. These are the people who know all your faults but love you anyways. Opening those lines of communication is vital to everyone involved. Talk about what is going on and how everyone feels about it. Some HD families will not di

Promises

There are many different promises made around Huntington's Disease. The need to make sure all your bases are covered can be a driving force. There are so many things to deal with and it is impossible to predict in advance all the possible scenarios of the future. I have my living will signed and ready, a power of attorney picked but not legalized, yet. At 37 years old I should not have to be thinking about these things, but the paper work is a necessary evil, unfortunately. For when the day

Emotions

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. It starts with irritation, irritation becomes anger, and then anger becomes rage on rare occasions. So nipping irritation in the the bud is sometimes a way to steer clear of both the anger and extreme anger (rage). In one of the HD videos I was lent by the HSC, it

Body Memories

One of the many challenges of Huntingtons Disease, is the loss of body memories. Its like our bodies have forgotten how to do the hundred different things that it used to do automatically. Now even the simplest things require a great amount of thought and concentration. Someone once did an experiment between a person with HD and another person with Alzheimer's. They had both of them spin a record manually with their fingers. The next day they asked the person with Alzheimers if they remember

Depression

Feelings of hopelessness, helplessness, and extreme depression are common in most people/families effected by HD. When your world seems to be out of control and you are overwhelmed with sadness it is easy to fall into that deep dark hole and just stay there. However, the longer you stay down, the harder the climb out will be. When you are depressed for too long you lose the ability to make the happy chemicals you need to balance your brain. I was offered antidepressants by Doctors for years

Anxiety and Panic Attacks, Part Two

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. I try to avoid the things that I know can set me off, but that is not always possible or practical. Sometimes you have no choice but to force yourself to step outside your comfort zone. And that's where the fear lies. I am not afraid of othe

Anxiety and Panic Attacks

I am always torn between forcing myself to venture out into the real world, or staying within the safety of my comfort zone. I seem to only be able to take so much mental stimulation, and then I need to escape so I can shut down for awhile. The more noise and commotion I have taken in, the more quiet time I need to replenish myself mentally. When I am overstimulated and in a situation where I need to escape and can not, then I zone out for awhile. It is really my only means of escape. I am ne

Still the Same

Finding out you have Huntingtons Disease is one of the hardest things many people will deal with in their lifetime. I know I felt like a totally different person after I found out I had HD, back in 1997. The more I learned about it, the scarier the future looked. I read the list of symptoms and at first thought I was automatically destined to get all of them. (I did not realize then that every one with HD has their own mix of symptoms.) The feeling I felt the most right after testing was wort

Denial

Some people say that denial is the minds way of putting off until tomorrow what it hurts too much to admit today. I believe that. It is like a built in self-defence mechanism that kicks in when you can not deal with something emotionally. Everyone deals with things in their own way and at a different rate of speed. There is no guidebook to tell us how long it will take us to come to terms with something, or what is an appropriate form of grieveing. But the official five stages of grief are--

Insights into Huntington's

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. Imagine my surprise to see each one of my unexplained quirks listed under the emotional and cognitive symptoms of Huntington's w

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