New ALS Caregiver's Guide Released this Month

by Christina Medvescek on Thu, 2008-05-01 16:04
The new Caregiver’s Guide includes myriad tips and techniques in numerous areas, including personal care.

MDA is proud to announce publication of the new MDA ALS Caregiver’s Guide. Free to those with ALS who are registered with MDA, the 210-page book replaces MDA’s 1997 ALS caregiver’s guide, When a Loved One Has ALS.

The book provides ALS caregivers with practical information on such topics as respiration, nutrition, communication, financial and legal affairs, sources of help, daily care and end-of-life issues. In addition, it’s liberally sprinkled with quotes imparting the wisdom and perspectives of experienced ALS caregivers and people with ALS.

The following excerpt from "Chapter 2: Daily Care of Your Loved One with ALS" offers a taste from the banquet of information available in the guide. Call (800) 572-1717 to contact your local MDA office and request a copy.

Topics in Chapter 2 include:

Accessibility at home
Accessibility outside the home
Alternative therapies
Blood clots
Crying, uncontrolled
Dry mouth
Emergency medical information
Emergency preparation
Exercises for person with ALS
Exercises for caregivers
Eye care
Hands & arms
Itchy scalp
Jaw clenching, tongue biting
Laughing, uncontrolled
Medical care
Pressure sores
Pseudobulbar affect
Range-of-motion exercises
Saliva management
Sleep deprivation (caregivers)
Swollen extremities
Urinary Urgency
General ALS Resources

Below are some selected topics from Chapter 2.


People with ALS sometimes report a feeling of the ears being plugged, as if they have water in them or need to “pop.” Check with a doctor to rule out infection, sinus problems, wax buildup or other medical causes.

In the "Finding Caregiving Help" chapter, a method of organizing helpers to share the load is discussed.

Itchy scalp

Some people with ALS seem to experience greater-than-normal scalp itchiness. There are a variety of possible causes, including dryness, yeast or fungus overgrowth, and stress. Check with a doctor and experiment to find the right remedy. Some things that have worked for others:

  • Use gentle hypoallergenic hair care products.
  • Shampoo hair in lukewarm water — hot water strips away protective scalp oils. Towel dry gently, not vigorously. Don’t wash too frequently or too infrequently.
  • Use a humidifier.
  • Over-the-counter remedies include Benadryl, Absorbine Jr. (applied liberally to the scalp), shampoos containing ketoconazole (such as Nizoral) or coal tar (such as T-Gel). Scalpicin Anti-Itch Scalp Treatment is a spray that can be used several times a day.
  • In some cases of chronic itching or skin sensitivity, a physician may prescribe an anti-epileptic drug such as carbamazepine (Tegretol) or gabapentin (Neurontin), or one of the tricyclic antidepressants.


Neck muscle weakness in ALS makes it hard to turn or hold up the head, leading to decreased mobility and — if untreated — pain, especially when turning the head, raising and lowering into bed, or rolling over. Poor neck posture also can impair breathing, swallowing and communication. Effective management of neck weakness can prevent or treat pain and injury. The key is to find the best methods of supporting the head.

Be aware that neck weakness makes the person more vulnerable to injury during transfers and when riding in a vehicle. If the head suddenly flops down, back or to the side, muscles and ligaments in the neck can tear, or the cervical spinal cord or neck vertebrae can be seriously injured. For some, even a slight jerk is all it takes to tear muscles.

Encourage and assist neck-stretching exercises (after consulting a physical therapist). Two simple exercises:

  1. Slowly turn the head to each side as far as possible without pain, hold and return to the center.
  2. Tilt the head sideways on each side, so the ear points down toward the shoulder; hold and return to center.

Use a lumbar roll or cushion behind the lower back to prevent slumping when sitting, and to prevent the head and shoulders from tipping forward. Pillows under each arm also promote upright head position when sitting.

Work with a physical therapist to investigate different types of soft collars, neck braces and head supports such as a band around the forehead that attaches to a headrest. Alternating the use of collars and head support systems helps reduce pressure points and skin breakdown. Thin-cushioned skin dressings (e.g., Duoderm) also protect the skin.

Sleep deprivation

ALS caregivers may get up numerous times a night to reposition or help their loved ones, leading to chronic sleep deprivation. Often the problem isn’t getting up, but the inability to fall back to sleep afterward.

“This life is light years from the promising future ALS destroyed, but these are the cards in my hand. I can play or fold. There is no adventure in folding.”

“The antidepressant doesn’t totally take the sadness away but it helps me cope with all that is on my plate now and to be able to keep going. Getting family and friends on board and keeping them updated helped a lot.”

“I lost my Dad to ALS after almost a year’s battle with it. Fear I lived with it every day, almost let it consume me. Please try to let go of the fear. The fear will only beat you down.”

Strategies to get more rest include:

  • Make it quick and quiet. When getting up, don’t turn on the lights (use a low-level nightlight if necessary), don’t have a conversation or do anything mentally stimulating, and stay up the minimum amount of time necessary.
  • Don't try too hard. If you can’t fall back to sleep within 10 or 15 minutes, get up and do something relaxing, then return to bed as you feel yourself getting drowsy. Performing a good all-over body stretch can add in relaxation.
  • Decrease caffeine, alcohol and nicotine. Especially avoid caffeine in the afternoon, as it can contribute to sleeplessness at night. Although some people find that an alcoholic drink before bed helps them fall asleep, alcohol increases the likelihood of waking later in the night.
  • Power nap. Aim for a short (15- to 30-minute) nap sometime during the “midday trough” between 1 p.m. and 3 p.m., when your body naturally wants to rest. A longer nap may leave you groggy and unable to sleep at night. If you can’t fall asleep, just rest quietly with eyes closed for a brief period.
  • Three on, three off. If possible, share nighttime caregiving duties. For optimum benefits, sleep experts recommend a three-nights-on, three-nights-off schedule, rather than switching with someone every other night.
  • Talk to your doctor. Not all caregiver sleep problems are caused by stress or getting up in the night. Schedule an appointment if nothing else is working.
Christina Medvescek
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