I’m scared.

I’m not going to lie. I am really scared. You can call me a “scaredy-pants” if you want to, I don’t mind.

I’ve got a number of fears. Perhaps, as a fellow in-betweener, you have some too.

Or, maybe you don’t, that can be a normal mindset as well. As I’ve said before, everyone manages, and is in control, of their own in-between years and there’s no right or wrong way to feel.

Me, I’m scared.

I have a number of fears that mingle around in the back of my head, occasionally coming to the forefront when least expected. Usually when I’m at work and my mind wanders away from the task at hand, or in the evening when I’m playing with my kids.

The amount of different fears is probably equal to the number of in-betweeners out there. Everyone’s life experience is different.

maybe you have kids, maybe you don’t

maybe you’re young, maybe you’re older

maybe you’re new to HD, maybe you’ve cared for numerous family members

This is going to be a very personal article, full of my fears and worries. It’s not my wish to be so gloomy and negative, but I want you to know that you are not alone if you share similar concerns.

Fear of being a burden

I’m married with two young kids. My extended family lives hours away by car, so there’s no doubt that my wife will be handling my care, mostly on her own.

I worry about how that will affect her. The way this disease usually strikes people in their prime is so tragic.

And remember, the caregiver is in their prime too.

It’s so tragic.

I know that if you were to ask my wife, she would immediately tell you that she is not concerned about her potential caregiver role. She would say something along the lines of:

I married him in sickness and health.

But still, I hate that she might have to go through that in her young future.

Fear of not being there for my kids

This is probably my biggest fear and it’s definitely the one that upsets me the most and keeps me up at night.

Now that I’m a father, I’ve realized the joy of watching my kids experience and learn new things. Even seemingly small achievements, like becoming competent at zipping a coat, turns me into a mushy mess of proud-daddiness.

I don’t want to lose that.

I don’t want them to lose that father figure in their life.

I want to be around to talk to my boy about baseball and girls. I want to be a good male role model for my daughter, so she can learn what a good man is.

Even as I write this, I’m tearing up, it affects me so much.

Fear that my kids may have inherited the HD gene mutation from me

I think all parents with kids at risk for inheriting the Huntington’s Disease gene likely have this fear. Maybe mixed with a serving of guilt.

It wasn’t until about a year after my youngest child was born that I began to think I may be at risk for HD. Prior to that, in my mind, I was in the clear.

In retrospect, I should have thought about it, but it never entered my mind.

Now that I know I’m positive, I’ve spent a lot of time thinking about our family planning and wondering why it never came up with our healthcare practitioners.

I remember sitting in the exam room with my wife as we went through the initial appointment with the midwife. I remember her asking both my wife and myself about our medical histories.

Did I mention Huntington’s Disease?

I know I mentioned the Spina Bifida on my mom’s side of the family, but did I mention the HD?

I don’t remember. If I did, I would think the midwife would dig a bit deeper into the possibility of me undergoing genetic testing, just to be safe. But, maybe I felt so safe about my risk that it never even occurred to me to bring it up. Maybe Huntington’s Disease is so rare, that she never thought to ask more about it.

That’s where my feelings of guilt stem from.

If I had thought I was at risk, I would have undergone the predictive testing and done things a bit differently, but I can’t change the past. I have two kids whom I love more than anything in the world and there’s no way around the fact that Huntington’s Disease is going to be a big part of their lives moving forward.

Fear of the unknown

One of the nasty things about Huntington’s Disease, and these in-between years in particular, is just not knowing what is in store for us.

Sure, our CAG score can give us an idea of when symptoms might begin for us, but we don’t know what those symptoms may look like.

Everyone with Huntington’s Disease presents a little bit differently and I’ve seen HD symptomatic folks continue to work and keep hold of their cognition well into the disease progression.

On the other hand, I’ve seen people lose their personality and lose their grip on reality so early on.

This terrifies me.

How will my mind keep it together?

I feel that I can handle the chorea and even the mood swings; I mean, there are medications that can help control or minimize those symptoms, right?

But losing my grip on reality, and not knowing when it may happen, is a huge fear of mine.

Fear that there won’t be an effective treatment for my kids if they need it

When my mom and dad were having kids back in the early seventies, it was already understood that my grandmother likely had Huntington’s Disease, although there was no testing process in those days.

The doctors told my parents that they should not have children in order to reduce the risk of spreading the mutation further.

They made the complicated decision of moving ahead with building a family and decided to keep it to two children, rather than have the larger family that my mother definitely wanted back in those days.

My mom has told me that she was convinced, back in the seventies, that scientists would develop some kind of treatment or cure by the time either my sister or I may need it as adults.

Thirty or forty years in the future sounds like a long time, and it is really.

Here we are, forty years on, and still no effective treatment or cure.

I mention this story because I think of it every time I have the same thought about my kids:

Ah, they’re so close to a treatment now. I have no doubt there will be something for my kids when they grow up if they need it.

I’ve said that many times.

My mom said the same thing forty years ago. What if there isn’t something?

Fear that there won’t be an effective treatment for me before I’m lost

I mentioned in the article I wrote about some of the different healthcare professionals you may meet during your in-between years, that the Geneticist told me something following my predictive testing that I really needed to hear.

He said to me that an effective treatment for Huntington’s Disease may be only five or ten years away. He described all the positive and exciting research that is in the pipeline, including some that may be ready in time for me to benefit from.

I was blown away by that.

As I mentioned before, initially following my positive test, I was convinced that my life was close to being done and over with, so this was very good to hear.

But what if it’s not ready for me? What if I’m well into my symptomatic phase of the disease long before something comes along and it’s too late?

This crosses my mind every time I open an article or read a study related to Huntington’s Disease.

Oh, please let this be good news!

I say with my fingers crossed as I begin to read.