Keeping it Simple: My 12-Step Plan to Reduce the Hazardous Extremes of HD

As Huntington’s disease progresses, hazards such as serious falls, choking, and mental health symptoms like impulsivity increase. Today, HD patient Sarah Foster shares her 12-step plan for minimizing everyday risks. 

Have I over-prepared for what Huntington’s disease (HD) will bring my way? Perhaps, but I don’t think so.

I have amassed loads of data in my long-term memory. I know things. I have hundreds of tangential facts about HD on file. And every once in a while, a minor detail comes in handy.

But getting lost in the minutia of HD is easy, so I'm accumulating and listing tools only for the basics. I consider "the basics" to be:

• Fall prevention
• Averting mental health crises
• Swallowing safety

6 ways of reducing the risks of falls with HD

As my HD progresses, I become more susceptible to slips, trips, or staggers and less able to correct myself. Alongside a waning ability to gauge where my body is in relation to other objects, involuntary movements concerning my arms, legs, feet, and trunk (called chorea) make walking anywhere safely harder by the day.

The worst-case scenario for me is to hit my head on something hard or otherwise fall with no way to contact help. That’s why preventing and dealing with falls is a crucial skill to develop now. How can I reduce the likelihood and severity of falls? Here are the basics:

1. Clear the way

My husband, Randy, has removed mats and area rugs from the house. Sharp corners and counters are getting a section of foam. We have no stone surfaces in our home.

We’re creating clear paths for my nighttime bathroom trips because I don't always lift my feet high enough to clear small obstacles where I walk. Every day, we move or remove tripping hazards.

2. Allow more room

If I’m thrown off balance when I stand or turn, sometimes I overcompensate, and that response can be more dangerous than what prompted it. Staying in often-cleared areas and avoiding cramped, cluttered spaces allows my body more room to respond.

3. Agree to stay safe

We agree there are some places I never go to when my family isn’t home.

For example, the stairs to the basement and backyard are off-limits. The walkway between the car and the house stays clear of low-lying obstacles. A ramp and handrail connect the parking area to our home's entry steps.

4. Use tools

I accept or invite assistance from people when walking over hard floors and pavement. A fancy walker that doubles as a wheelchair lives in the back of our car.

I know I’ll need it soon. We're already thinking of what equipment we'll need next once the walker is no longer sufficient.

5. Notice the terrain

Hikes with my boys no longer occur when it’s slippery or icy. Challenging terrain is a no-go, too, as roots, wet clay, and rocks can cause me to lose my footing and fall. If I want to access the creek nearby, I walk around for a safer route instead of taking the quicker but very slippery little path I used to take.

When I go for a walk, my legs lose coordination after a few strides. As my body looks for different ways to sustain an ongoing momentum, it twists my legs into awkward positions, and I’m left scrambling to correct myself before falling.

6. Change my habits

My HD safeguards only help if I implement them. If I’m not sure I can safely walk somewhere anymore, I don’t. Why risk it? The time for risking it has gone.

That goes for climbing around in the kitchen cabinets, too. If cookware, canned food, or that one little spice that would make the dish perfect is beyond easy reach, I will wait until someone can get it so I don't fall.

3 mental health anchors to keep going as HD progresses

My household sees depression as a medical problem instead of a weakness or a decision made by a mean person. My depression is caused by HD's effect on my brain, and it’s often compounded by situational depression because having HD is, to put it mildly, a bummer.

The very worst days are the riskiest because HD makes me prone to impulsivity, so suicide is a risk.

7. Listing a daily emotional inventory

We monitor me for depression each day. Am I lingering too long in bed? Having intrusive thoughts? Irritable? Something is wrong if I'm not mentally organized enough to ask myself how I'm doing.

8. Having an action plan

Early on, therapists and psychiatrists helped us create an action plan should I have suicidal thoughts. I feel safe in my home environment because it’s free of ways I could hurt myself.

9. Adjusting to the new ordinary

When my emotions build up like steam in a pressure cooker, I need someone to help me communicate and express them safely. Taking a nap or showering can help me reset if I’m home. My feelings are always validated at home. Randy said that I'm not doing it on purpose. It’s simply the new normal now.

If I’m in a public place, I get to the most private space possible, usually the car. As always, my husband lets me safely process my feelings. We work together to process my emotions simply and quickly to avoid getting to a crisis point.

When something does not let go of my attention, I usually need to check in with myself about it. History has proven that emotions, ideas, an image, a smell, or a memory can trigger the pain of an unmet desire or need. Suddenly, I become desperate to have or do something I can't — like the urge to go to a concert, for example.

A few years ago, when my family was plagued by my desire to buy things, Randy had to travel far, far away. I, being sad and lonely, went to a mattress store and ended up buying (financing) an adjustable bed that was not in our budget. During the aftermath of that purchase, I grieved about this mistake as if it were a person, and that, in turn, led to a mental health crisis.

When I return to a particular thought more than a few times in a row, I ask myself what feelings I'm getting out of this loop. Sometimes, the repetitive thoughts try to make me aware of a pain or discomfort I've not recognized.

When pain is the cause, a heating pad or massage may prevent an emotional catastrophe.

3 steps to prevent aspiration and choking

I'm transitioning to a soft diet because it's getting harder for my swallowing system to function.

A large blockage in my throat could end my life. When a small amount of food or liquid enters my respiratory opening, it’s called aspiration. Aspiration pneumonia is life-threatening.

Brushing my teeth before bed helps to reduce bacteria in my mouth that could lead to infected lungs.

10. Create a system

We've worked out a system where the only time I will clap my hands is if I’m choking. That attracts the attention of people who may not have noticed.

It’s never a good idea to ask me if I’m choking, even when I appear to be. The question pushes me to process these words, distracting me from helping myself to swallow safely.

When a minor swallowing mishap occurs, we look for signs of fever and shortness of breath - two possible signs of aspiration pneumonia.

11. Use tools to make drinking easier

I bring my own straw and use cups with screw-on lids that regulate each sip for me. After I take a bite of food, I have at least one sip of water.

12. Sort out sleeping environments

Elevating the head of the adjustable bed allows me to avoid acid reflux, which, in turn, could decrease my chances of choking during the night.

The takeaway: the value of undivided attention

I do nothing else while looking at a screen. I work on one task at a time, breaking down that task into smaller steps if necessary.

These days, I train myself to keep actions like walking, talking, and chewing from intermingling. Sometimes, I hand Randy my phone to answer when I’m eating. He can remind me to sit down if I try to talk and walk simultaneously.

Now that I've written down my list, these essential safety tips will make their way to my refrigerator door.

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 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-01237 MAY 2024