I’d rather wait

“Mom had HD. She passed away in 1985, at age 69. I knew something was wrong with her in her 40s. Her mother passed away earlier from HD. I didn’t become aware it could be passed on to me until the late 1960s. My wife and I decided to have children in spite of being at risk myself. I reasoned that my mother had a reasonably good life until her late 40’s, so I should have similar such chances, as well as my children. Also, research may have found a ‘cure’ before my children became affected.

My parents had five children. The oldest was diagnosed in the early 1990’s with HD. The youngest was diagnosed in the late 1980’s. I have taken all of the predictive testing, except I have not asked for the results. The reason is because my wife does not want to know the results as she feels it would adversely affect our future. I would like to find out the results prior to my children having children, for their benefit as well as my own piece of mind.

The medical staff advised the testing could be terminated at my/our request at any time. I’m more at ease not knowing the results for myself as each year passes by, but I’d still like to know before I pass on, for my children’s sake. The medical staff were very considerate of my feelings.

I can’t see any good in telling my employer that I’m at risk at this time. If I knew that I was not at risk, I would be more open at work about Huntington, but for now I keep a low key approach at the office (This hurts Amaryllis sales).

My wife and I had a will made up 21 years ago before our children were born. We are making changes to the will to reflect the fact that our children are now young adults and it requires some alterations. Our financial planner has agreed to act as executor in the event that both my wife and I suddenly perish together. At this time we both have signed our driver’s license to donate useful organs upon our death. We will ask a lawyer about power of attorney requirements. We are considering the purchase of a new house in the next couple of years, a bungalow with a walkout basement. I have thought about wheelchair access somewhat but have not seriously discussed it with my wife at this time.

As I’m three years away from being eligible for early retirement, my main goal or objective is to keep working for my employer until that time — to protect my wife and family for our later years. Work beyond age 55 depends, obviously, on my health (which is pretty good right now), my enjoyment of working in this pressure packed work environment, and our financial needs for the future (assuming the company still wants/requires my services).”

“If I knew that I was not at risk, I would be more open at work about Huntington, but for now I keep a low key approach at the office.”