Huntington's disease and diet issues

Huntington’s Disease and Diet Issues in Grand Rapids, Michigan

Living with Huntington’s disease in Grand Rapids, MI brings unique challenges, especially around eating and nutrition. Cold West Michigan winters, higher calorie needs, and changes in movement and thinking can all affect how well someone with Huntington’s disease is able to eat and maintain a healthy weight.

This guide explains common eating and swallowing problems, practical meal-time strategies, and where to find help in the Grand Rapids area, including Spectrum Health, Trinity Health Grand Rapids, Metro Health, Mercy Health, and local public health resources.

Eating and Swallowing Problems in Huntington’s Disease

As Huntington’s disease progresses, many people develop dysphagia (difficulty swallowing). Changes in muscle control, coordination, and thinking can make eating slow, tiring, and sometimes unsafe.

Common eating and swallowing issues include:

Loss of fine motor control in the face and neck, making chewing and swallowing difficult
Inability to close the lips fully, causing food or liquids to spill from the mouth
Jerky, involuntary movements (chorea) that worsen when trying to eat
Irregular diaphragm spasms, increasing the risk of inhaling food instead of swallowing it
Swallowing too soon or before food is properly chewed, increasing choking risk
Trying to eat very quickly to satisfy a strong or urgent hunger
Choosing foods that are hard to chew or swallow because of changes in thinking and judgment
Fear of embarrassment or choking in front of others

Because of these issues, people with Huntington’s disease are at higher risk of choking and weight loss, even when they seem to be eating often or have a large appetite.

Weight Loss and Huntington’s Disease

Many people with Huntington’s disease lose weight over time. This is not always caused by poor diet alone. Research suggests that:

The body may burn more calories because of constant movement and biochemical changes related to Huntington’s disease.
Eating can take a long time and be exhausting, so less food is eaten overall.
Swallowing problems can limit the textures and types of food that feel safe.

In a city like Grand Rapids, where winters are cold and long, the body may also use more energy to stay warm, adding to overall calorie needs.

Because of this, high-calorie, nutrient-dense foods and drinks are often recommended to help maintain weight and strength.

Professional Support in Grand Rapids, MI

For anyone in West Michigan living with Huntington’s disease, professional support is essential.

Consider asking for referrals to:

Speech-language pathologist (SLP) – for swallowing assessments, safer swallowing strategies, and recommendations on food textures and liquids.
Registered dietitian – for a nutrition plan that is high in calories and nutrients, but still safe and manageable to eat.

You can access these services through major Grand Rapids health systems, such as:

Corewell Health (formerly Spectrum Health) – neurology, speech therapy, and nutrition services
Trinity Health Grand Rapids – rehabilitation, dietitian services, and outpatient therapy
Metro Health – University of Michigan Health – neurology and rehabilitation services
Mercy Health – multidisciplinary care including speech and nutrition support

Local public health resources:

Kent County Health Department – information on nutrition, community programs, and referrals
Grand Rapids Public Health and local community clinics – may offer support groups, education, and care coordination

Ask your neurologist or primary care provider in Grand Rapids for referrals to Huntington’s disease–experienced clinicians when possible.

In Grand Rapids, food is a big part of family gatherings, church events, and community life. For people with Huntington’s disease, mealtimes are not just about calories—they are also about connection and dignity.

Whenever possible, support the person to:

Choose their own foods and participate in menu planning
Help with meal prep in ways that are still safe (for example, washing vegetables if peeling is too difficult)
Eat with family or friends in a way that feels comfortable and respectful

Even small roles in the kitchen or at the table can help maintain independence and self-esteem.

General Nutrition Strategies for Huntington’s Disease

A dietitian familiar with Huntington’s disease can create a personalized plan, but these general tips are often helpful:

Meal Pattern

Choose frequent small meals and snacks instead of three large meals.
Always have second servings or extra snacks available, especially during long winter evenings when appetite may increase.

Food Texture and Ease of Eating

Aim for foods that are soft, moist, and easy to chew and swallow, similar in consistency to porridge or thick yogurt:

Mashed potatoes with gravy
Soft casseroles
Scrambled eggs
Oatmeal, cream of wheat, or other hot cereals (especially comforting in cold Michigan winters)
Soft fruits (bananas, canned peaches, applesauce)
Tender, slow-cooked meats that fall apart easily

Avoid:

Hard foods such as nuts, hard candies, and popcorn
Foods that form strings or separate into sections while chewing, such as bacon, some cuts of steak, stringy cheese, or tomato skins

Increase Calories and Nutrition

Because calorie needs are often higher in Huntington’s disease:

Use plenty of sauces and gravies to soften foods and add calories.
Add butter, cream, cheese, nut butters (if safe), and healthy oils to meals.
Enrich desserts with custard, ice cream, cream, or full-fat yogurt.
Choose full-fat dairy rather than low-fat or non-fat products, unless otherwise advised by a healthcare provider.
Replace low-calorie drinks (like black tea or plain coffee) with protein-fortified milkshakes or nutritional supplement drinks.
Choose calorie-dense snacks like iced cakes, soft muffins, pudding, or smoothies instead of low-calorie options like plain crackers.

A dietitian in Grand Rapids can recommend specific nutrition supplements available locally or through Michigan-based pharmacies.

Preparing for Mealtimes

Planning ahead can make eating safer and more comfortable:

Before the meal:

Encourage the person to rest for 1–2 hours before eating to reduce fatigue.
Make sure any prescribed medications that help with chorea or anxiety are taken as directed.
Have all eating aids and utensils within easy reach.

Create a calm environment:

Turn off the television, radio, and other distractions.
Keep the mood light and relaxed—anxiety can make chorea and swallowing problems worse.
Seat the person in an accessible spot at the table so a caregiver can assist quickly if choking occurs.

Safe Eating Position and Techniques

Proper body and head positioning can significantly reduce choking risk:

The person should be sitting fully upright, never reclining, while eating and drinking.
To reduce choking risk, they should slightly angle their head downward toward the plate when swallowing.
After meals, they should remain sitting upright for at least 30 minutes to reduce reflux and the chance of food coming back up and causing choking.

Helpful Eating Aids and Utensils

Simple equipment can make a big difference:

Non-slip table mats to keep plates and bowls from sliding
Lightweight utensils such as plastic knives and forks
Utensils with thick handles that are easier to grip; regular cutlery can be slipped into foam rubber tubing
Straps or adaptive grips to help keep utensils in the hand if needed
Plate guards to prevent food from being pushed off the plate
Double-handled drinking cups with spouts or lidded cups
Drinking straws secured into a plastic cup (if safe and recommended by a speech therapist)

Occupational therapists in Grand Rapids health systems can recommend and fit appropriate adaptive equipment.

During the Meal

Because people with Huntington’s disease often need more time to eat:

Never rush the person. Allow up to one hour per meal if needed.
Reheat food gently during the meal if it becomes cold, especially in winter.
A plastic apron can protect clothing from spills and reduce embarrassment.
The person should not drink while they have food in their mouth, as mixed textures can be confusing and increase choking risk.
Encourage small bites and sips, and allow time to fully chew and swallow before the next mouthful.

When Someone With Huntington’s Disease Is Being Fed by Others

As the disease progresses, a person may not be able to feed themselves safely and may need hands-on help. This can be emotionally difficult.

For caregivers in Grand Rapids (family or professional):

Be sensitive to feelings of loss, embarrassment, stress, or despair about needing help.
Sit opposite the person you are feeding so you can see their face and watch for signs of difficulty.
Appear unrushed—act as though you have all the time in the world.
Encourage them to breathe out before taking a bite, then pause breathing while swallowing if this has been recommended by their speech therapist.
A gentle massage of the face and throat (if comfortable for the person) may help relax muscles and support swallowing.
Give as much control as possible—for example, they may still hold their own cup while you guide it to their mouth.

Caregiver support groups in the Grand Rapids area, often hosted by hospital systems or community organizations, can provide emotional support and practical tips.

Tube Feeding (PEG Feeding) in Huntington’s Disease

In the later stages of Huntington’s disease, chewing and swallowing may become too unsafe or ineffective to maintain nutrition and hydration. At this point, tube feeding may be discussed.

The most common method is a percutaneous endoscopic gastrostomy (PEG) tube, often called PEG feeding:

A small tube is placed directly into the stomach through the abdominal wall.
Placement is usually done as a day procedure in a hospital, such as Corewell Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health.
Liquid nutrition, fluids, and medications can be given through the tube.

Important considerations:

PEG feeding does not solve all problems and does not stop disease progression.
The decision is emotional and complex, involving quality of life, comfort, and personal values.
It should be discussed sensitively with the person (if possible), family members, neurologist, primary care provider, dietitian, and speech-language pathologist.

Palliative care teams in Grand Rapids can help families navigate these decisions and focus on comfort and dignity.

Local Help and Resources in Grand Rapids, MI

If you or a loved one in Grand Rapids is living with Huntington’s disease and experiencing eating or swallowing problems, consider contacting:

Your GP (primary care doctor) – for referrals to neurology, speech therapy, and dietetics
Neurology clinics at:
- Corewell Health (Spectrum Health)
- Trinity Health Grand Rapids
- Metro Health – University of Michigan Health
- Mercy Health
Speech-language pathology and nutrition services at local hospital outpatient rehab centers
Kent County Health Department – for public health information, nutrition programs, and community resources
Local or regional Huntington’s disease associations and support groups – for education, support, and referrals

Ask specifically for professionals with experience in Huntington’s disease, dysphagia, and high-calorie nutrition support.

Key Points for Huntington’s Disease and Diet in Grand Rapids

Eating and swallowing problems (dysphagia) are common and increase as Huntington’s disease progresses.
Weight loss is frequent and may be related to higher energy needs and disease-related biochemical changes, not just poor intake.
Soft, moist, high-calorie foods and frequent small meals can improve safety and nutrition.
Use sauces, gravies, full-fat products, and nutritional supplements to increase calories and make swallowing easier.
To reduce choking risk, the person should sit upright and angle their head slightly down toward the plate while eating.
Eating aids such as plate guards, thick-handled utensils, and special cups can increase independence and safety.
Calm, unhurried mealtimes and emotional support are essential for both the person with Huntington’s disease and their caregivers.
Local Grand Rapids healthcare providers and public health resources can offer specialized support, assessments, and treatment plans.

Always consult your Grand Rapids healthcare team—especially your doctor, speech-language pathologist, and dietitian—for personalized advice on managing Huntington’s disease and diet issues.