Huntington's families carry their own unique brand of stress. The inner relationships are complex and often heartbreaking on a scale that no one can truly imagine unless that have personally lived with it. There are a lot of sad family histories out there in the HD community. Within an HD family you also have an extra stress factor in worrying about your kids, parents, siblings and extended family members getting the disease. You tend to watch your family members very closely.

There was a lot of stress in my life already before I even found out that I was at risk for HD when I was 28. First I found out I was at-risk for a brain disease because my biological father tested positive on his first neurological exam. Then I had the counseling, questionnaires and finally the blood test. I went from being oblivious to the Huntington's, to being at-risk, to gene positive and already displaying "soft signs" of HD all in a 6 month period. Major stress there.

One of my sisters went through the HD whirlwind journey with me.

She was truly instrumental in my surviving this whole stressful process. She knew my every thought and as usual always said the right thing. She fortunately tested gene negative. Having someone to talk to who totally got it was a huge advantage.

She is still one of my best friends of all time. We are so much alike and yet so different. She is my hero for MANY different reasons but most of all for putting up with me all of these years. Not to mention the fact that she is stuck with me for life, that will teach her for testing negative!

We agree it's ironic that the phrase tested negative implies that my sister has somehow triumphed over HD, but in reality nothing could be further from the truth as she will have a front row seat for the rest of us. She still has two sisters with HD and we had a father, two uncles and a Grandmother who all died with HD. There are also two first cousins living with HD, and 8 more first cousins at-risk, plus their kids. Coming from an HD family equals losing alot of your blood relatives at way too early an age.

One very stressful part of finding out you are at-risk for HD is the choice as to whether or not to have children. Bottom line is that people in HD families need to be left alone in order to make their own informed choice. It is a very touchy subject and is a difficult enough thing to decide without anyone trying to pressure you to see things their way. It goes without saying that HD families are already well aware of the risks of passing HD on because we are the ones with our own front row seats.

We both felt major stress when we had a couple of non-HD doctors trying to talk us out of having children by trying repeatedly to convince us it would be completely irresponsible and criminal of us to even think about it. According to them all we had to do to stop HD forever was for each HD family not to have kids for one generation. Can you imagine anyone taking it upon themselves to tell you that you have no right to reproduce? I felt like a monster for still wanting a family.

I am not saying that I do not understand the logic in what they are suggesting about the whole skipping a generation theory. But by that same logic I would not be here at all. My two sisters never would have been either and what a tragic loss that would have been because they are both such beautiful people who have added so much joy not only to my life but all the lives around them. We are not bad seeds and our existing at all does not make our parents bad people either.

Then there are those HD individuals who went along with that theory and chose not to have kids years ago, and now many years later half of those people did not even carry the HD gene to pass it on. So they missed out on the joy of having children and grandchildren because of a maybe. All that life not lived because of a single "responsible" life choice. And of the other half who did inherit the HD gene they just as easily could have produced all gene negative kids.

Many of us out there lead incredibly stressful lives. There are so many outside stressors that effect us that are beyond our control.

There is work stress, financial stress, child rearing stress, extended family stress and emotional stress. Plus there is the additional stress that comes as a result of living within a Huntington's family.

The soundest advice I ever got was from one of the HD doctors from the HD clinic back in 1997 who told me that if I could seriously cut the stress in my life now, that I could literally add years onto my emotional life later. Giving up my job as a certified home support worker was very difficult. It did cut a great deal of stress out of my life but it also cost me a big piece of my identity. I was very good at my job and loved helping other people for a living.

Trying to lower the stress in our lives is important to each of us for different reasons. But that is especially true for those of us living with HD. I have seen for myself what a devastating effect a lot of stress can have on people with HD; they seem to be the ones who have progressed very quickly. I know for a fact that the absence of any real kind of stress in my life is helping to slow my progression.

I don't think I will ever be able to accurately describe the shock value of abruptly finding out HD is in your future. I was walking along minding my own business and out of nowhere the gene fairy waved her magic wand and TAG - I was it, just like that, and I did not even know I was playing. Coming to terms with HD is incredibly stressful because there are so many different complex pieces that make up the entire picture. The domino effect takes some time to fully unfold.

Not until we are truly lost do we begin to find ourselves...