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5 Ways to Find Hope with Huntington’s Disease

Woman with Huntington's disease reaching out to her friends for support via text
Getty Images/ Tara Moore

When Huntington's disease leaves her feeling hopeless, Sarah looks within herself to find hope instead. Read her 5 tips here.

Huntington’s disease (HD) has obscured my outlook. My spirit suffocates while my mind grapples with scenarios that could only worsen bad situations. At times I feel hopelessly boxed in by my disease.

I’ve had to conjure up some hope, so I sat down, made a list, and...

Here are five ways I plan on doing just that.

1. I will empower myself

I was paralyzed by the fear of what Huntington’s disease would do to me. Now, I realize this fear put me right where HD wanted me: feeling weak and vulnerable. That crossed the line.

Ready, willing, fearful, and able, I can serve as my own best advocate. Fear and the ability to collect information are not mutually exclusive.

I still remain powerless to stop HD’s relentless deterioration of my brain. Yet, I realized that I was preventing myself from handling any problems that came my way. That attitude came to a screeching halt.

I'm uniquely qualified to take a look inside myself and identify what scares the hell out of me. Based on the severity of what comes, I can either ease the damage or brace for its impact. Sometimes, you know there’s nothing you can do but get ready for change.

I remember Christmas Eve 2009, waiting to hear from my doctor’s office. My husband was with me as I was about to pick up the phone and hear my results straight from the testing center.

I instinctively knew the results. I’ve never won a lottery, a raffle, or a prize. My luck is notoriously bad. Why shouldn’t my genes be? I picked up the phone and bitterly spat “Hello,” into the receiver.

“Ms. Foster,” a somber voice answered. “The results aren’t as we’d hoped.”

The years since flood back to me now. I have a real sense of satisfaction with how I’ve navigated the time since my diagnosis.

I survived.

Therefore, I am not helpless. I have me.

2. I will treat the symptoms as they come

As I wrote this entry, I realized that I was needlessly going down with the ship. I realized I was in a major depression, and I’m working with my health team and family to come out of it.

It’s all baby steps, every day. But at least I’m doing something about it.

3. I will end the isolation I’ve put myself in

The more I eschew the world outside my house, the more daunting everything becomes.

That’s my pattern.

I’m now trying to get to grips with it all and stop banishing myself to solitude. I’ve started reaching out to friends in all sorts of ways.

I've started calling my best friend every day. I text my sons and brother daily because they don't like voice calls. Another group of friends don't text at all, so I email them once a week.

I’m using social media to reach out to others. The great news is that they’re all reaching back. That’s quite a comfort.

4. I will take it easy with the routines

A central feature of Huntington’s disease is apathy.

As a result, trying to do anything is like riding a mechanical bull. Even simple things, like washing or brushing my teeth, can be challenging.

Imagine you're trying to organize your belongings and tidy up. Now imagine doing that on a mechanical bull, with a setting that gets higher and higher the more tired you are.

Pictured it? That's how I feel with just one aspect of my daily frustration.

That's why I need to celebrate small victories when I manage to somehow make my life easier. I carry everything I need for the day in a massive bag: keys, eyeglasses, technology, and a bit of dark chocolate.

It sounds so simple, but just having everything I need with me at all times makes daily living so much less stressful right now. That's a start.

5. I will remind myself I’m not my diagnosis

It’s a cruel diagnosis, but I won’t let it crush my spirit. I will view Huntington’s disease as a prism from which painful distortion comes with a colorful range of emotions.

I'm not my disease. I have hopes and dreams like everybody else.

I look at myself as a symbol of hope.

And I am reaching for it.

The information presented is solely for educational purposes, not as specific advice on managing symptoms of Huntington’s disease. Please consult with a professional who can apply best practices and applicable resources to your particular situation.

The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals 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 related 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-00611 JUNE 2022

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