People with ALS need extra care to keep their skin healthy and comfortable.
First, there are the changes wrought by the disease. Skin becomes extremely fragile whenever there are nutrition or breathing problems. ALS also seems to change the biochemical properties of collagen and elastin, which run in thin fibers through the middle layer of skin called the dermis. As ALS progresses, these fibers become irregular in size and shape. Blood vessels in the dermis also display irregularities and protein deposits.
Then, there are the common itchy or painful ailments brought on by weather and immobility. Caregivers can take several steps to ease skin woes for loved ones with ALS.
Dry, itchy skin
Winter air sucks moisture from the skin. To put it back, try these tips:
Put moisture into the air. Use a humidifier or place a bowl of water on the heating vents.
Avoid hot baths or showers. Hot water strips the skin of moisture; use lukewarm instead. A 15-minute lukewarm soak saturates the skin, giving it that “prune” look. If a hot soak is a must, use bath oil. It’s not necessary to take a full bath every day; a “parts” cleanup with a sponge usually is sufficient.
Pat dry, don’t rub. Skin specialists compare rubbing with a towel to rubbing with sandpaper. Patting the skin leaves more moisture behind.
Use heavy, greasy lotions. Immediately after patting, seal in moisture with the greasiest lotion tolerated.
Shave with lotion. It’s much gentler than foam. When washing, use mild or soap-free cleansers. Avoid deodorant soap.
Wash itchy scalps. This complaint comes up regularly among ALS patients. Try using cooler water in shampooing, changing hair products, moisturizing the scalp, using anti-itch or antifungal shampoos, and consulting a dermatologist.
At the opposite end of the spectrum are skin problems caused by too much moisture.
“It’s ironic that you would develop ‘jock itch’ as a result of being confined to a wheelchair,” says Diane Huberty of Fort Wayne, Ind., a retired neuroscience nurse who has ALS.
Being seated all day in a wheelchair or a recliner creates warm, damp pockets in underarms, groin and skin folds that are ideal for fungal growth.
To combat infections:
Dry off completely. After gently washing and drying, dry the area further with a hair dryer on the cool setting.
Wear absorbent clothing. Look for materials that draw moisture away from the surface of the skin.
Use medicated remedies. Avoid cornstarch, talcum or other nonmedicated powders that can encourage fungus when they get damp.
Try herbal remedies. Some tried-and-true remedies include applying apple cider vinegar or vitamin E; eating six cloves of fresh garlic or six to nine garlic capsules a day; eating yogurt with live cultures; and taking more B-complex vitamins.
Whenever skin is under prolonged pressure, tiny blood vessels are compressed, the supply of oxygen and water is interrupted, and skin starts to die. People who are immobile should have their skin checked thoroughly at least once a day. An area that stays red longer than 15 minutes after pressure is removed is the beginning of a pressure sore. (For dark-colored skin, look for areas that are darker or purplish-blue in color.)
To prevent sores:
Keep pressure off bony areas. Use padding to protect the most common pressure points (see graphic, above). When making a foam pad, don’t cut out the center (as is done for bunions or corns), as this can further decrease circulation. In bed, real or synthetic sheepskin pads are effective, as are “egg crate” foam mattress pads.
Avoid giving massages over bony areas, or positioning a person directly on the hipbone.
Beware of recliners. In sitting, the coccyx (tailbone area) takes the brunt of pressure. “As soon as mobility is affected, a pressure relief cushion, like a ROHO or Jay cushion, is a basic necessity,” Huberty says. Ordinary foam or air cushions “just won’t do the job.”
Huberty warns that recliners aren’t meant for people with limited movement and can cause bad pressure sores, especially when people sleep in them at night. Outfit the chair with a proper pressure cushion and keep a close eye out for problems.
Ideally, immobile people need to be turned every two hours. At a bare minimum “one or two position changes a night will greatly reduce the risk of pressure sores,” Huberty says. A programmable automatic turning mattress can regularly shift an occupant’s weight, helping caregivers get some sleep.
Don’t drag the skin. “Shearing force” is created when one layer of skin moves but the other doesn’t. This happens when a person is dragged or sits up in a hospital bed raised to greater than 30 degrees.
Be as active as possible. Nancy Schuman, neuromuscular nurse practitioner at the MDA/ALS Center at the University of Washington in Seattle, says the center doesn’t see many pressure sores among ALS patients. She credits education and a philosophy that “encourages patients to be active and not to be in bed, which is probably the worst thing a person can do.”