I won’t be ambushed

“I had the test in 1994, after my elderly mother was diagnosed with HD.

I wanted to have genetic testing and learn the results, mainly because of a general curiosity and a desire to learn whatever I can about myself and my life. I fear ignorance, not knowledge. I wanted to be able to inform my children whether they might also be at risk, so that they could decide whether or not to have their own tests, or plan families.

I wanted to be able to plan as far ahead as possible in order to be able to do what I could to provide for my wife, and to make appropriate financial plans and make certain decisions about existing life insurance.

I will not have any sort of “assassin” sneaking up on me, if I can help it. In the end, I may lose the battle, but at least I won’t be ambushed by my own ignorance.

When my test came back positive, I had the benefit of excellent counselling, and the battery of neurological tests done at that time have provided a benchmark that will help me and my doctors to monitor the progress of my condition. What I have learned has generated a curiosity about the disease, and a corresponding interest in the remarkable efforts being made by HD researchers. Encouraging developments I would probably have been unaware of if I had been unwilling to take genetic testing and learn the results. I have found all of this very reassuring. I would urge all those who are vacillating to have the test. Even if the results are not favourable, I believe you can recover your equilibrium and make some positive use of the information about yourself to aid in your own future plans or treatment, or to plan for loved ones. The courage to face the truth, whatever it is, will give you strength to deal with the rest of your life more fully and effectively.”