opinion

Living With Huntington Disease

    My name is Beatrice Langille and this is my perspective on huntington disease and testing. Everyone has their own way of coping. I am a mother of 5 children that are at risk for H D.My first husband, and the children�s father, has already passed away as a result of this deadly disease.
      When we had our family,we were unaware of the presence of H D. If we had known,we would have re-considered the consequences of child bearing. Just knowing that I brought children into this world that might have this horrible disease scares me to death. Although I am not the carrier, I feel very guilty.These are my children and I would not give up even one day of the joy these children have given me.
           After the death of my husband's father,we became aware that HD was a possibility that we would have to face. Eventually, this possibility turned to a grim reality, and for the next twenty years we dealt with this reality at a ground roots level. Since then, I have done whatever I can in my own small way to help find a cure or at least a way to slow down the progression of this monster or if its just to let someone else know that I was once where they are now.
      The other day I was talking to a grandparent of an �at-risk� grand daughter. He felt that all the days of enjoyment and pleasure she has given him are worth more than anything else. He was against testing because then he would spend too much time watching for signs and too little time enoying the moment.
     Myself, as for testing, I just don�t know. In our day,there was no test except for a very simple and quite inaccurate examination. Today we have a very accurate means of determining the presence of Huntingtons. Unfortunately, if it was me having the choice of being tested , I do not know if I could have the test or not. This is a very personal decision that has to be made by that person and their spouse, if there is one. I would never advise them to have the test or not to have it. It�s a great burden to carry around, but then on the other hand it�s a burden not knowing, if you are making plans for your future.
     I feel that my role is to support my children in their decision, regardless of what they decide and to be there for both - the one tested and the spouse. Just answering any questions,or listening while they let off steam over this damn disease or maybe just providing a shoulder to cry on. These supportive actions provide a great deal of the frame work of my role in my now grown up family.
     We, as a family, were very open about H D, as we ourselves learned about this disease, day by day. The ones that marry into my family have to learn about HD too, and make these decisions for themselves. I feel that the best thing that I can do is to let them know that I�m here for them in any way that they need me. My biggest fear is that if my children do test ` positive, it will cause them to turn away from me or do harm to themselves, knowing what the future may hold for them and their family. I don�t have the energy to feel sorry for myself. I have to focus on a way to stop all of my children from letting this disease take life from them.
      Recently, my biggest fear has also turned into a grim reality. Two of my children took it upon themselves and made the decision to be tested. When the first one made the decision to be tested ,with the support of their spouse, I was informed about their decision afterward. My only thought was - I didn�t want to know the results. But eventually I got the call that the test was positive. What do you say!!
     Last summer another one of my children wanted to know what was in their future. As I sat on my back deck one Friday afternoon I got the dreaded call that another had tested positive. The scariest part of all is that I knew even before they told me .
       What does the future hold? I still have five children , nine grand children and one great grand child. That's thirteen more times that I�ll be waiting for the dreaded call, if they make the decision to be tested.
       Their future is in the hands of everyone associated with this disease and I for one, will never give up the fight until total victory has been achieved.

This is my opinion only and is put here to give you some ideas. Everyone and every family is different and the decision is not an easy one. There is no right or wrong answer.