Thursday, January 27, 2005

Overcoming HD's tyranny of time

It’s been more than two weeks since I’ve written here. The reason I’ve taken so long to return is, quite simply, time.

After death, time is the thought that most frequently comes to my mind when I’m worrying about HD.

How much time do I have before HD strikes?

Will I have enough time to accomplish all that I had planned for my life?

How can I manage my time more efficiently to get all that I want out of life? And how do I prevent the striving for efficiency from tyrannizing my life?

How do I balance the many commitments that demand my time – commitments compounded by volunteering in the campaign against Huntington’s and writing here?

Last Saturday night my family and I went to a dinner party. It was supposed to be a relaxing evening, but all I could think about was leaving early so that I could get to my HD volunteer activity.

This hyper-awareness of time often saps the joy out of my life.

What terrible decisions I often have to make! Should I play with my daughter or do something to save my life, like volunteer work or extra exercise or writing about HD?

I occasionally used to ask myself: what do I want to look back on when I’m on my deathbed? It’s a question that I now ask myself more often to help me put things in perspective and use my time more wisely.

Wisdom, I’m discovering, does not necessarily mean greater efficiency. In the process I’m starting to learn to give up things that I’ve held dearly for so long. For years I’ve strived to be at the top of my profession. But as I become more deeply involved with the fight against HD, I see that work is no longer so important. (Read more on HD and career in another entry to be posted here soon.)

I’m also struggling to learn how to enjoy the moment.

I must learn that time is not my master.

As a Vietnamese Buddhist put it so well, all time is our time if we choose to see it that way. Whatever we are doing at any particular moment is our own experience, whether it be some great and courageous action in the fight against disease or something as simple as helping my daughter learn to brush her teeth.

I look forward to a time when HD will be conquered. I hope it comes in my lifetime. I would love to experience once again the freedom of not thinking so much about time.

Tuesday, January 11, 2005

Learning about HD

This blog is mainly to be a chronicle about my experiences in living at risk for HD, and a place for people to share their thoughts about their own at-risk status.

In the coming months you will come to read in great detail about the ways in which HD affects the lives of individuals and their families.

If you are interested in learning about other aspects of HD, such as basic and medical research, advocacy issues, self-help guidance, and ways to donate towards finding the cure, you can visit the following sites:

An excellent source of daily news about HD is Dave's blog at This was the first HD blog to appear on the internet. (A special thanks goes to Dave for being the first site to mention my blog.)

One of the most comprehensive sites about HD is at

A good listing of resources for dealing with all aspects of HD is available at the website run by Jean Miller,

To learn more about advocacy issues, personal testimonies, and research, visit

There are four organizations in the U.S. dedicated to finding treatments and a cure for HD. You can visit them at:,,, and

Another very helpful site is at

This list is by no means comprehensive. There are many local organizations and individuals with sites dealing with HD. You can find them by searching I hope to list more sites in the near future.

Monday, January 10, 2005

Huntington's disease: an early date with mortality

My name is Gene Veritas and I am at risk for Huntington’s disease.

I have been thinking of starting this blog for some time. Something happened last Friday evening, January 7, 2005, that helped me put things in perspective and finally pushed me into sharing my story with the world.

I was having a beer with an old friend who happened to be attending the same professional convention as I. We go back twenty-five years and hadn’t seen each other in more than a year. We talked about writing and publishing, our passions. We had only thirty minutes to talk, because I had to catch a plane back home so that I could get in some volunteer work in the campaign to stop Huntington’s disease.

Our conversation quickly turned to HD. My friend wanted to know how my health was. I explained that I had just started taking a dietary supplement that is part of a new “treatment now” HD program that aims to cut through the bureaucracy and lethargy of other HD organizations. I told my friend that I would be taking additional supplements, all over-the-counter or FDA-approved, in the coming months, including creatine, for which I will have to get blood tests to make sure it doesn’t damage my liver or kidneys. Just thinking about this scares me, but I feel I have no choice.

My friend wanted to know what my psychological reactions to living at risk for HD. He especially wanted to know if I was angry.

No, I am not angry, I told him. It’s been nine years this December 26 that I learned of my mother’s diagnosis with HD. I have come to accept HD as part of my life.

I think a lot about death, I continued. I don’t know exactly when HD will strike. It could be as early as in the next five years, or it could take twenty years. I’m trying to squeeze as much life into my days as possible before I starting living life as a “vegetable,” I said.

“I envy you,” my friend said. “I feel immortal. I don’t believe I’m going to die. But you know you’re going to die, and so you can live your life more fully.”

The conversation shifted to God. My friend is a non-believer. Recently my wife, my daughter, and I resumed attending church. It is one of the supports we feel we need to get through our daily struggle with the impending onset of HD in our lives.

I rarely have the kind of conversation that I had with my friend, not even at HD support group. It hit me how fast the nine years living at risk for HD have gone by and how profoundly it has affected my life and the life of my family. I’ve thought a lot about death in the last nine years – so much, in fact, that I am now almost calm about it.

My finger twitched the other day and I showed my wife. Was it HD? We don’t know. I was only happy that it was not painful. If this is HD, I can take it, I told myself.

But will I be able to take the cognitive loss that afflicts all HD people? I have an accepting attitude now, while I’m healthy, but how will it feel when I can’t write or publish or stand at the bar with a friend and have a beer anymore?