Over time, Huntington's disease impacts a person's movements, thinking, and emotions. Although those with the disease don't intend, or indeed want, to change, new social difficulties can strain relationships with family and friends.

Having seen how Huntington's disease affected her mom's relationships, Sarah Foster aimed to "learn from her mom's mistakes" and handle HD better when it happened to her. However, she soon found that her fears of conflict and “being like Mom” created problems of their own.

Sally Gale was my mom's lifelong best friend and next-door neighbor. My parents built their house beside hers. Their yards were separated by hedgerows and a masonry pillared gate with a wrought iron door.

They snuck into Ava Gardner's funeral in hopes of seeing Frank Sinatra. Old Blue Eyes wasn't there, but the tabloids were, and the funeral crashers found themselves on the cover of a weekly gossip magazine. My embarrassed mom bought and destroyed all the ones she could find in town.

I'd already seen how Huntington's disease could affect relationships

Little by little, Huntington's disease (HD) changed my free-spirited, friendly mom to a harbor for paranoid suspicions. I noticed that she began to box herself in.

"We don't go to that pharmacy," she'd say. While she appeared to be holding grudges, she may have felt safer deteriorating in front of the chosen few. After she boxed out every dentist in town, she drove two hours to see another one.

She became mean and said hurtful things. Two of my college friends called her a word that rhymes with "witch" before they left my house forever. The only friend of mine she didn't box out was my best friend, Nina.

As for poor Sally Gale, Mama hurt her feelings so badly that she removed that wrought iron door and planted a tree there.

I went to visit Sally Gale after she planted the tree, hoping I could smooth things over between them.

She was firm when she said, "Some things can't be fixed."

HD's behavioral changes shattered my mom's (and later, my) social life

Soon after that, my mom began to call me more than twenty times an hour. It was "HD impulsivity," something that can damage the communication skills of the most rational person pre- the disease. But it was also exhausting. When it happened in my neurologist's office one day, he encouraged me to block her number. I did, right there, in the exam room.

I told my best friend, Nina, that if the time ever came, she should block my calls if needed. Neither of us thought she would ever need to because I would learn from my mother's mistakes.

Nina was my best friend for forty years. When I wanted to move, she offered to provide respite for Randy, as nowadays he is my primary caregiver as well as my spouse. So, Randy and I relocated to the mountains, and we (I) thought it would be an ideal situation. We moved next door to Nina on Halloween. By New Year's Day, we had fallen out.

I had written an entry about looking for happiness with HD and how I envisioned our lives would play out living in the mountains together. The bonfires and four-wheel rides.

But two months after moving next door, our families had an Armageddon of arguments. So bad that no tree planted between us would stave off the hurt.

I moved us twenty miles away as I knew our old town (population 400) wasn't big enough for both of us.

In the beginning, I thought she had become an evil person, and I grieved her loss like a death. I cried and mourned and felt sorry for myself, and I exhumed the weight of every other friendship lost. I had convinced myself hers was one of the few friendships I had been able to retain, and I ignored everyone who was my friend because one person wasn't.

Woe was me.

My social habits were driven by the terror that Huntington's disease would harm my relationships

In time, I have come to understand how my own character flaws merged with HD and, what's more, that my fears around HD, created an environment ripe for misunderstanding and drama. I was so determined to not endure the emotional minefield created by my mother's challenging behavior that I became hypersensitive to conflict. I did anything to avoid it.

Over the years, I aimed to love others with unconditional positive regard. But I didn't consider that other people weren't me, and I couldn't change how anyone else felt by hoping. That built a warped framework for the mess of trouble that ensued.

Nina and her husband communicated expectations from our family that didn't necessarily jibe with our own values.

Any opinions that would hurt my family, I sat on.

Information or opinions I disagreed with or knew were false, I disregarded. Assumptions formed, and I ignored them. I told myself I was maintaining unconditional positive regard for everyone. Being dedicated to peace, I was doing everyone a favor by serving as a filter. Least said soonest mended. 

Because I lacked insight, I played both sides against the middle to maintain our families' relationship.

The people who were Nina's neighbors before us moved away after a big kerfuffle. The woman told Nina, "All you and your husband do is sit on top of your mountain and judge."

I consoled Nina and told her anyone who knew her would realize how insane that sounded.

But then I noticed that we, too, were getting a steady diet of unsolicited advice. Some of it was understandable, I thought. Randy and I were new mountain dwellers, and there's a learning curve when making sure you know which country store sells butter or when the self-service dump is open.

But statements like, "Your son needs to get a job," and all sorts of advice on raising a teenager from a childless couple began to ring hollow. I didn't stand up for my son and husband because I never had. Basically, I lied to everyone about everyone for years to paper over the ever-widening cracks in the relationship. If they just hung in there and kept trying for my sake, we would live in perfect harmony.

Instead, I blew up our lives.

I hurt Mark and Randy very much.

I manipulated their behavior in any way I knew would shield them from conflict, and it became glaringly disingenuous. I asked my family to issue fake apologies for things none of my family felt worthy of being an offense, just to keep a prophylaxis of peace.

Apologies were just words, after all.

It turns out that trying to avoid the past mistakes of others won't shield me from making my own  

I’d seen how Huntington's disease had soured my mom’s relationships. Ironically, because I'd endured her and seen her mistakes, had therapy, developed coping skills, and sworn to never be hateful, I somehow thought I would "do" HD better than my mom had.

But I can't.

After a lifetime of avoiding being a prisoner of anger, I caused us to be refugees from peace.

I don't understand why, but before I can have any sort of introspection about the way my life affects others, I must hurt them first.

I sing like a carnival barker, encouraging everyone onto a ride representing how I think life should unfold. I only realize my way is untenable when we're careening toward a dead-end on the track. I can't stop myself from ramming into it and splattering over everything I thought made sense.

Nurturing the relationships I have vs. pining for the one I lost

It has taken me until now to wrap my head around what's happened and tease out any lessons.

The biggest lesson is I am the one with the problem, so to keep peace, I need to worry about myself and not others. Like my mom, I am starting to get all worked up about dumb stuff, like where to keep the olive oil. When I try to figure out why things bug me, I get lost in the minutia. To get unstuck, I identify the problem behavior, call it to Randy's attention, and tell him I am aware of it, and we troubleshoot how I can deal with it behaviorally.

Nina and I haven't spoken in three years. Since then, I have done a lot of personal work to see my role in how things fell apart.

As for Nina, she was and is a fellow human. I no longer fault her for changing a lot since high school. I did. She deserves not to bear resentment from me and to live her best life.

Randy and Mark have forgiven me, but I will still spend what's left of my life trying to make it up to them.

Mark has left the nest, and now it's time for Randy and me to enjoy each other's company the way we did when we met more than twenty years ago. It's the perfect time to be a better wife.

There's a selfishness inherent to presenting oneself as a collection of symptoms. Trying to avoid the hazards that HD throws in as it progresses, like figuring out what to eat due to dysphagia, or trying to avoid nasty falls with chorea, means that every day is a desperate focus on me.

So, I am refocusing on Randy's needs. Every time I hurt, I ask him how he's doing. What he wants. What he needs.

I use whatever's left to communicate with our children honestly, my only agenda being to apologize for my shortcomings.

I won't let HD isolate me from family, friends, or new opportunities

I am done with skidding through life, trying to avoid conflict, and assuming I am the only one qualified to save everyone else. What a mess that created. That's not living in the real world. The real world, I have learned, doesn't have to be complicated and rife with allegiances to anyone or anything but us.

Emotionally, I was impaled by losing Nina. Now, three years later, the emotional pain only smarts like snatching a band-aid.

Huntington's disease, it turns out, is an equal opportunity destroyer. I "do" HD no better than my mom did. But I am increasingly grateful for all my remaining relationships, including wonderful friends who make it a point to stay in touch with me, help me figure things out, and offer support to Randy.

I had been ruminating about all of this and looking for some symbolic path toward redemption when we got a new neighbor.

Her name is Nina.

New Nina.

It turns out she is a retired nurse.

A Behavioral Health nurse.

She is also an artist.

A small forest of tall trees separates our houses. I like to think those trees symbolize healthy boundaries, and along those lines, I am determined to expect nothing from her.

When I shared this with New Nina, she told me she believed synchronicity made us neighbors and invited me for coffee.

I am looking forward to it.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content and whose images appear in this article have been paid by Teva Phar-maceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence, or endorse any content relat-ed to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.

NPS-ALL-NP-01482 FEBRUARY 2025