What It's Like To Be In A Family Cursed With Huntington's Disease

by Emily Rekstis
“It has been called the cruelest disease known to man.”

This is how Lisa Genova, author of “Still Alice,” introduces the newest neurological disorder she tackles in her new book, “Inside the O’Briens.”

This “cruel” disease is also known as Huntington’s, or HD.

“Still Alice” has affected so many people due to the sheer volume of Americans affected by Alzheimer's, which is near 5 million.

Huntington's, a much lesser-known illness, affects only approximately 30,000 Americans.

My dad is one of them.

Huntington’s is a neurodegenerative genetic disorder.

Symptoms include personality changes, like mood swings and depression, impaired judgment, involuntary movements called chorea, inability to walk, slurred speech and difficulty swallowing.

These symptoms typically don’t surface until between the ages of 30 to 50 and worsen throughout 10 to 15 years.

While the disease itself does not kill those infected, complications, like choking, heart failure or pneumonia are typically the cause of death for those who suffer from HD. To this day, there is still no cure.

It wasn’t until 1993 that researchers were able to identify the gene that causes HD, which is a dominant mutation of one of an individual’s two copies of the Huntington gene.

In layman’s terms, this means if a parent carries the mutation, each of his or her offspring has a 50/50 chance of carrying this same gene.

So yes, that means me and my two sisters each have 50/50 chance of inheriting our dad’s fate.

The launch of Genova’s book allows me to tell the honest truth of what it’s like to be in a family affected by Huntington’s to a curious audience.

My Unique Circumstances

When I was 12, my parents got a divorce. My two sisters and I moved to Maryland with my mom while my dad moved to Cleveland, near his family.

This meant I didn’t watch him grow gradually sicker. There were multiple year gaps between his digression, and each hit was harder that the last.

I’m not saying it’s easier or harder than if I had watched him digress little by little, but I feel like if I had been around through the whole mess of it, I may have been able to ease into it before each different stage of his illness, rather than take it like a blinding punch in the stomach.

It was large jumps to each newly developed symptom: first weight loss and some jerking movements, then major chorea and slurring, then inability to speak, eat, swallow, walk and more symptoms I’m sure I’m forgetting.

So while I did see the major physical side effects, I can’t attest to many of the behavioral changes families see and go through when it comes to living with a person who suffers from Huntington’s.

And, thank goodness because I don’t know if I could see my kind, happy father become depressed or angry.

I’m still not even that aware of any negative behavioral changes. I was never around him long enough to find out.

Punch 1

The second time I saw my dad after the divorce was my first time seeing him sick.

My mom warned us beforehand that he was incredibly sick. I honestly don’t even remember if she told us exactly what it was, not that I would’ve known or understood anyway.

The one thing I remember was her stressing how thin he would be.

My dad has always been a slim 6' 2" — how much thinner could that tall of a man get? Well, slim was not the word for his physique anymore; a more accurate word would be "sickly."

You could start to see his collarbone popping up, while his shorts displayed every bone in his leg.

How was this possible, though? He was eating burgers and fries just like the rest of us.

I quickly learned, it was just one of those side effects of HD. It's something you just have to accept.

While his scary thin stature was hard to see, the constant movements were also hard to get used to.

As a dog lover, and one whom dogs always love, our little Bichon jumped right up on his lap.

He could just barely get in a full head-to-belly pet before another jerk would kick in. How frustrating that has to be, I thought.

To know exactly where you were putting your hand and have it not cooperate was unimaginable for me. I don’t have the patience to sit in traffic, let alone wait for my hand to go where my brain clearly is placing it.

But, in his amazing grace, he just carried on as if he had meant to move his left shoulder up and left hand to the right.

Punch 2

It was the third time we saw him that it hit me the hardest, and is still the hardest visit I’ve had.

He was in the hospital because of kidney failure, so we went to go see him. This was before he moved to his full-time care and wasn’t eating properly.

“He didn’t like the food” was his excuse, apparently missing my mom's cooking. (Don’t we all!)

We were in Cleveland for a long weekend and went to see him on a Saturday in the hospital. We moved him to the full-time care Sunday.

That Saturday was when I saw what no 17-year-old girl should have to see. I watched as the nurse came in, put a bib on my young, 51-year old dad, and spoon-fed him his lunch.

I lost it. He looked so helpless and somewhat ashamed. We didn’t want to leave him and think we were embarrassed, but we didn’t want to hurt his pride by watching, either.

This is a hard balance I still have today when I can’t understand what he’s trying to say.

All I knew was that I was not going to cry in front of him while he was trying to enjoy a normal lunch, so I excused myself.

My sisters were very strong and carried on the conversation with him to keep things light and happy.

No dad wants to see his daughter cry, let alone be the reason for it — even when it’s something he has no control over.

Punch 3

The other breakdown I had was when I got a call from my mom sophomore year of college. I was on a stereotypical week of Spring Break in Myrtle Beach.

The second-to-last day there, I got a call from my mom that I needed to come home because we were going up to see my dad the following week.

He could no longer swallow. I was at the edge of the water and just dropped to the ground.

(Dramatic, I know. But for some reason my go-to)

No longer swallow? How is one meant to live like that? Is it even possible? I knew then my dad didn’t have much longer. This visit could be the last time I see him.

That was almost four years ago.

He is in hospice now — you know, it's that place where you’re meant to spend your last few months, but my dad’s going on a year.

I know every girl says it, but I have the strongest, greatest dad in the world.

The Odds Are Not In Our Favor

The 50/50 thing is typically the real kicker when I explain my situation to people (and you think you have baggage). Yes, people’s parents get sick, especially when you get older.

And yes, people who have parents with fatal illnesses have a higher chance of getting sick.

But knowing exactly the sh*tty odds of having a neurological degenerative disease is a very descriptive, definite thing to hear.

Yes, it sucks. I hate knowing I could work my whole adult life to build a successful career, only to watch it quickly crumble out of my control.

If I want to start my own family, I don’t want to put them through this, but I don’t want to go through it alone either.

Those are sad thoughts you don’t want to feel at 22. But I don’t feel those often — right now, it just doesn't get to me.

More so, it’s the idea of there being no end in sight. I can’t just survive this one hit with my dad.

Until any of my sisters or I know what out genetic results are, there is no end. And, if one of us is positive, there’s another generation we have to get through.

Not knowing our results, for now, is as much of a resolution as we can get. And with no family/marriage responsibilities, we’ll take the small amount of ignorant happiness for the time being.

So, my solution? Just don’t think about the future too hard or cynically, and it’s really not so bad.

It's just like any other reality.

Don’t think of the worst that can happen; just think about the things you can control.

I can’t control my HD results, but I can work hard and climb the ladder to get myself to the position I want.

And anyone with siblings — especially younger — can attest to the fact that it’s not me getting the disease that’s the scariest part of the 50/50 thing.

It’s watching either of my younger sisters go through what I’ve already seen my dad go through, that I don’t know if I could get through.

I feel sad

Watching your 50-year old dad deteriorate is a hard reality. I’ve watched my dad become almost unrecognizable throughout my teen and young adult life.

Sure, that’s sad, but what really gets to me is knowing how aware he is how this disease affects him and everyone else. It makes me undeniably, incomprehensibly sad.

It's an honest, raw sadness I’ve never felt, not even during the passing of friends or family.

It’s knowing how frustrated he is that he can’t have a conversation with his daughter on his 56th birthday that’s hard for me to accept; it’s watching him try to maintain his dignity as someone feeds him his dinner that’s painful; it’s knowing how badly he wants to say “I love you” and can only get out a few slurred L’s and U’s that’s heartbreaking to hear.

I don’t feel bad for him or pity him. He’s held the most gracefully existence, although his clumsy nature pre-HD could be an argument against that. It’s just sad. I just feel sad.

I know it sounds simple, but I feel that simply about it. It’s just an overwhelming feeling of sadness in the pit of my stomach.

My favorite thing I look forward to now is seeing little pieces of the old him trickle out through the symptoms, which typically take a front seat.

It's the weird snorting-in type of laugh he does when someone tells a good joke; his look of admiration and pride when he looks at my sisters, mom and me; his friendly, selfless nature when he says hello to everyone who, naturally, loves him.

I am grateful

Of course I’m not grateful that my family has to go through this. It’s an awful thing to watch and endure.

What I am grateful for is that if Huntington’s is my fate, I will know how to handle it with grace and dignity thanks to the standard my dad has set.

I don’t know how someone who was dealt such a sh*tty hand of cards handles it so beautifully.

I can only hope that if I’m cursed with the same fate, I can handle it with half the elegance my amazing father does.

I'm not going to help find a cure for Huntington’s, treat ailing patients or, unfortunately, be there for my dad in his final years.

But, what I can do for him, my family and the other 30,000 families is simply bring a greater awareness to this overlooked disease.

And, although he cannot read this himself, this one’s for you, Dad.