My Everest…

HOPE made me live through my life with the knowledge that our family had a genetic history of MS and Huntington Disease.  When I was younger I got tested for MS and thankfully was negative. When my father was diagnosed with HD both my brother and myself decided to go on with our lives untested and we were fine with it.  Hope made me think that I could beat the 50/50 HD odds!  Through the years we all watched as my father suffered through the many stages of his combined illnesses.  All of his grandchildren never really knowing their grandfather without him being ill.  He passed away peacefully in a nursing home.  Loved to pieces and missed dearly always. Never a day goes by that he is not thought of. 

When my daughter got engaged I started rethinking the HD testing and upon discussions with her, my son, and my husband I called my dr.  She got me in touch with a genetic counselor, she was of the mindset to just let things be time will tell whether you have it or not.   I told her that My daughter would have the test whether I did or not.  So I said that I would do it and if I am negative then she wouldn’t need to.  My daughter’s logic was sound if my test was positive then she would have further testing done so as when the time came to have children they didn’t want to pass along this horrible disease to them.  I went and got my blood work done I had an appointment to have the results opened but decided that it was not the time to do it as it was too close to the wedding and I didn’t want to spoil it as I didn’t know what my reaction would be if if it turned out that I had HD. So I waited ….i didn’t tell anyone when postponed ‘reveal’ date was.  The wedding was over,  the married coupled happily moved out west to romp in the forest.  

My husband and I now empty nesters.  I sat on the porch with him drinking our coffee on the weekend and I told him that I find out my HD test result on Wednesday.  He said Ok, I don’t think you have anything to worry about.  To be honest I didn’t either. I flash-backed to visions of my dad at this time and I didn’t see any symptoms.  On Tuesday my anxiety, stress kicked in and on the pain train I went I didn’t flare up but I was barely holding it all together.  Sleep that night … well there wasn’t any!  I kept my husband up with all my tossing and turning, walking around the house and having fits of tears.   He grabbed my hand, took me to bed and just held me and told me whatever it is, we will handle it like we have done in the past and we will do it together like always!  Morning came I went for my walk and somehow finally the afternoon zoom call came and the genetic counselor came on screen and asked me how I was.   I told her I was very anxious and I didn’t want any delays just to please tell me.  She took a breath and said “ You are gene positive”. ( My brain was like Whhhhhaaaattt?) I am gene positive, but from what she has seen I don’t have it.  (My Brain …how would you know all you have seen is my head in this stupid monitor, you haven’t seen my body, my hands etc.  How do you know? more anxiety! )  She goes on to tell me I have 41 alleiles out of god know how many and the fact that I am not showing signs at this time is good because it means that I may not present with HD until later on in life.   However that being said  I could turn around tomorrow and show signs.