Home Safety for People With Huntington's Disease
If you are caring for a person with Huntington's disease, be alert to special safety concerns in the home. Certain manifestations of the disease can leave the person more at risk for falls and other accidents. For example, the person may be unsteady on his or her feet and fall down the stairs. Poor coordination may lead to tripping on a rug. Guns and other potential weapons in the house are also hazardous, especially when someone in the house is prone to emotional upsets, loss of judgment, or delusions.
Safety hazards in the home are not always apparent. For this reason, your first step should be to do an assessment of the whole house, keeping in mind the habits and routines of the Huntington's patient. Ask yourself what could be a potential hazard.
General Safety Precautions
Lamp, extension, and telephone cords should be away from the flow of traffic. Cords should not be beneath furniture, rugs or carpeting where they could cause a fire. They should be in good condition, not frayed or cracked.
Rugs, Mats, and Runners
Throw rugs are easy to trip over and should be avoided. All other rugs, mats, and runners should be slip-resistant. They can be purchased slip-resistant, or you can apply adhesive carpet tape or rubber matting to the backs of them. Check slip-resistant rugs periodically since they can lose their adhesiveness over time. Short pile carpets are easier than deep pile carpets for people who have walking problems.
Smoke Detectors and Fire Extinguishers
Each month, make sure all smoke detectors work and are near all bedrooms. Smoke detectors should be on the ceiling or 6-12 inches below the ceiling on the wall. Fire extinguishers should be placed in several locations, the most important being the kitchen. Make sure all outlets and switches have cover plates and that no wiring is exposed.
If the person with Huntington's disease smokes, remember that it may be one of his or her few remaining pleasures. Taking cigarettes away could cause agitation and extreme emotional upset. Instead, consider the following tips to keep smoking from becoming such a fire hazard in the home:
- Do not allow smoking in bed, which should be a rule for all members of the household.
- Look at the places where the person tends to smoke. Remove anything that could catch fire easily, such as newspapers, magazines, boxes, dried flowers, or leaves.
- Make sure that the floor and furniture is flame resistant.
- If they smoke outside, make sure it is in a low-risk area, away from dried wood, leaves, flowers, or flammable chemicals.
- Use ashtrays that are large, stable, and fireproof. Make sure the ashtrays are placed in an area where they cannot be easily knocked onto the floor. An ashtray attached to a floor stand might be a better alternative.
- Cigarette holders can help the person hold the cigarette without it burning down to their fingertips.
Arrangement of Furniture
Furniture can be an obstacle course for Huntington's patients who lack coordination. They may bump into furniture frequently, or try to grab onto it to prevent a fall when they lose balance. To prevent frequent bumps and difficulty getting around, you may need to remove some furniture and store it in another area. Or you may simply need to rearrange furniture so that there is more space for maneuvering. Furniture should be strong enough to provide support if the person with Huntington's disease grabs onto it to prevent a fall.
Firearms should not be in the house. A person with Huntington's disease may be depressed, rageful, hallucinating, displaying poor judgment, or may have a loss of coordination. If you choose to keep firearms, you should use trigger guards, and keep them unloaded and locked in a cabinet. Ammunition should be locked in a fireproof safe, and keys should be kept outside the home.
Knives and other sharp objects could similarly pose a problem. You may want to consider keeping sharp knives, scissors, and other potential weapons in a locked cabinet as well.
There are a number of potential hazards in most kitchens. Here are some tips for kitchen safety:
- If possible, patients with Huntington's disease should be supervised when in the kitchen.
- Keep hazardous chemicals in a locked cabinet.
- Towels, curtains, and other flammable objects should be kept away from the stove top.
- Knobs should be removed from the stove.
- Keep the tables, counter tops, and stove free from clutter.
- Consider getting a corral for the stove top to keep pots from being knocked over.
- Keep the person's kitchen items within reach.
- Consider using plastic plates, bowls, and cups.
- Get a stove that has safety features.
Medical supply houses sell and rent utilities that can make your bathroom safer. The following tips should be applied:
- Bathtubs and showers should be equipped with nonskid mats, abrasive strips, or surfaces that are not slippery.
- Grab bars need to be in the bathroom and the shower.
- Existing grab bars should be strong and stable.
- A stool with a nonskid surface can also help those with balance problems.
- A person who has difficulty standing on his own in the shower should be accompanied by someone else who can help.
- Spacer blocks and handles can be attached to toilet seats so that the person has something to grip.
- If the patient is showing signs of cognitive decline, medicines, cleaners, and potential toxins should be locked in a cabinet. Old medicines should be thrown out.
- Night-lights should be installed in the bathroom and on the way from the bedroom to the bathroom.
- A light switch should be near the door of the bathroom. A glow switch will help the person see it in the dark.
- The water heater should be set to "low" or 120°F.
- Light switches should be within reach of the bed.
- If the person falls out of bed because of chorea, consider buying a cotton flat weave hammock. Unlike the hammock people put in their back yards, these completely enclose the person.
- Consider installing padded rails around the bed, or getting a hospital bed.
- A floor bed may be helpful, as long as the person is able to get up safely.
- Install night-lights.
- Have handrails on both sides of the stairwell.
- Help the person up and down the stairs, if necessary.
- Try to keep walls free from heavy paintings and objects that could be knocked down.
- Install wooden railings or metal grab bars on the walls.
There are many things you can do to ensure the safety of a loved one with Huntington's disease. The person should have easy access to important phone numbers in case of emergencies. Preprogrammed phones, answering machines, cell phones, and beepers can assist you. Talk to neighbors about your loved one's condition. Be sure the individual carries some form of personal identification and a phone number, in case he or she wanders off and gets lost. Be prepared for changes in the person's condition, and to make safety adaptations as necessary.
Hereditary Disease Foundation
The Huntington Disease Society of America
International Huntington Association
National Institute of Neurological Disorders and Stroke
Huntington Society of Canada
BC Health Guide
Last reviewed July 2007 by J. Thomas Megerian, MD, PhD, FAAP
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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