First in a series.
I wanted to write a positive column this week about the strength and courage my wife has displayed over the last few months. She has, and I will — but not this week. In fact, welcome to the first of two parts about a topic that has been a source of frustration for us. It deals with the obstacles that families go through when they are related to someone who has Huntington’s disease.
Before I get into the meat of what I mean by all that, I have to preface part one with some background information to frame what I will share in part two, so that you understand the big picture behind our frustration and how emotional this is to us.
Huntington’s is a rare disease, which has led to the formation of tight-knit communities of families across the country and the world, all of whom are bonded with a grave understanding about how devastating this illness is. This means these families often have an amazing support structure in place. When I first met Jill, her extended family was, and still is, very involved with research, and many of them participate in studies, including the ones who don’t have it. Every ounce of knowledge that the medical establishment gains helps with treatments and eventually a cure.
Because Jill was a caregiver to her father, she and our daughter experienced firsthand what Huntington’s can do to the mind and the body. When I met them, Jill had decided not to be genetically tested. She wanted to wait to see if any symptoms appeared one day. When I asked why, she responded by making an analogy that, though grim, made total sense.
She wondered if I would want to know one day when I was older if I would go through several agonizing stages of loss involving the cutting off of my limbs. It would start with losing my fingertips. That, of course, is inconvenient, but you can live a pretty normal life with that loss.
Then, a year or two later, your toes are cut off. Again, that is something that is uncomfortable, but you can still go to work and live a normal life. However, there would be some pain, and you would end up getting depressed, and your balance would be off.
Then, a year later, your hands are amputated, and then your arms. Each time this occurs, you are left to bleed for a while, which leaves you weak and disoriented, with possible phantom limb pain. Now, think about knowing all this was going to happen to you, but there was no way to prevent it. No amount of extra effort at exercising. No amount of radical dietary changes. No shifting to a less stressful job. You just know it’s going to happen.
Would you want to know?
After my wife described this horrible scenario, I was speechless, which doesn’t often happen to me. I never thought about the fact that there’s no way to prevent Huntington’s. With things like heart disease and cancer, there are some health changes you can make. However, with Huntington’s, it didn’t matter what she ate or how much she exercised. If she had the “right” kind of genes, her fate was sealed.
As I indicated earlier, I needed to share all this with you as an emotional backdrop so that you would have a greater understanding of what I will address next week, in part two. In order to understand next week’s column, I had to set it up by elaborating on why taking the genetic test can be so frustrating and tinged with more unwanted and unneeded emotions than usual. This is based on some of the protocols set in place by the medical community that should take into account the human element. By not doing so, these protocols can lead to more anguish due to a lack of flexibility and empathy.
Stay tuned and come back in a week so that you understand what I mean.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.