For people with ALS, finding innovative ways to ensure better sleep comfort benefits everyone in the household. Proper bed positioning is vital because it helps improve circulation, minimizes the swelling associated with severe weakness and muscle inactivity, and helps prevent skin breakdown (pressure sores). Adequate gentle support and stability also contribute to sleep comfort.
While there isn’t one perfect solution to sleep difficulties, trial and error can produce useful measures that promote effective rest.
Here are some examples of people with ALS who have found low-to-medium tech solutions to the challenges to their sleep that have made a world of difference in their lives.
Thank you, Mattress Genie
Marcie Gibson of Arlington, Texas, is determined to stay in her standard twin bed. Gibson, 36, who uses a 4-inch thick memory foam mattress overlay on top of her regular mattress, has also been using the Mattress Genie for two years and says, “It’s wonderful because it allows me to continue using my bed instead of replacing it with a hospital bed.”
Available through Contour Living (www.contourliving.com), the device is used to lift the head of a mattress up to 40 degrees. It’s available in four sizes ($90-$150), works on most standard mattresses and can lift up to 500 pounds. You can raise or lower the device with the push of a button.
Linda Gibson, Marcie’s mother and caregiver, explained that the bed lift is the best way to elevate Marcie’s head without using several pillows and wedges that may shift during the night. Linda repositions Marcie every two hours during the night, and when Marcie needs to lie on her side, she uses a wedge to support her back, a squishy pillow under her right shoulder and a pillow between her knees.
While the motor on the Mattress Genie sounds like a vacuum cleaner, Linda said you get used to it, especially since it’s enabled Marcie to maintain some control over her environment.
Mattress overlay saves the day
Ron Harrison of Lake St. Louis, Mo., used an alternating pressure mattress and a Tempur-Pedic mattress before finding relief with a gel mattress overlay. The overlay sits on Harrison’s hospital bed; he has the head of the bed raised at a 45-degree angle to help with his breathing and saliva control.
“My sitting up while sleeping creates a depression (a bowl with a firm rim) in the mattress, which after a while can become very uncomfortable,” Harrison, 71, said. “The gel mattress has worked best to reduce the problem, and I’m able to experience quality sleep time.”
For enhanced head and neck support, Harrison also uses a dual-valve Sleepmatterzzz Cair pillow with Roho shape-fitting technology (www.shapefitting.com) that allows you to adjust the flow of air in the aircells of the pillow. He uses a neck roll on the left side of the pillow to cradle his head, preventing it from falling sideways.
Harrison also uses a Cair pillow to support his feet and a knee-support memory foam pad under the lower leg above the ankles to lift his heels off the bed. He uses a board in front of the pillow for sheet tenting.
|Glen Houston has arrived at do-it-yourself solutions to sleep problems, such as a foam-lined box to prevent his feet from falling to the side (top) and supports to raise the foot of his mattress (bottom).
Memory foam is a ‘Godsend’
Glen Houston of St. Charles, Mo., has been using a memory foam pad in addition to his adjustable, electric hospital bed for more than two years, and “it’s been a godsend.”
“So far, it’s been perfect,” Houston, 66, said. “There’s no pain, and it conforms to your body and supports your whole body.”
In addition to his hospital bed and memory foam pad, Houston’s used several do-it-yourself strategies to find comfort. For example, he and a friend constructed a board with wooden legs that sits under the foot of the mattress. Fully adjustable, the legs are connected to the mattress frame and can raise the mattress an additional six to eight inches.
To keep Houston’s feet from falling to the side, a friend constructed a three-sided box lined with two inches of foam. Houston rests his feet inside the box. The U-shaped box is connected to the bed frame and is adjustable. His wife tents the blankets and sheets over the box.
“An ALS patient really needs to have his feet tented,” Houston said. “If the sheet’s too heavy, it can push your feet around, and the weight of the blanket can give you a feeling of claustrophobia because you can’t move your feet.”
Houston’s wife places a pillow under each leg, from his knee to ankle, and she puts rolled towels alongside each pillow to keep his knees from turning outward. Houston uses a pillow under each arm and an old feather pillow under his head. It’s not high-tech, he says, but it does the trick and keeps his head from turning to the side.
Houston prefers knit sheets because they’re thin, lighter and softer than cotton sheets, and he recommends using a cotton-quilted pad on top of the bedsheet for easier positioning.
For information about high-tech sleep aids and a list of sleep aids resources, read “One Good Turn,” Quest, September-October 2006.