40 things that can happen when caring for someone with ALS

40 things als

Caring for someone with ALS is like a box of chocolates; you never know what you’re going to get. The following is a brief list of things you may have to grow accustomed to as well as others that may surprise you.

  1. Accessibility.  At home. Modifications include removing rugs, toys, furniture and any object that can cause tripping; installing handrails and ramps, electric door openers, and overhead tracks for an electric lift; increasing the size of existing bathrooms/bedrooms or building new ones, etc.

Outside the home. Not all public spaces comply with the Americans with Disabilities Act. If possible, check for accessibility to beforehand.

  1. Alternative medicine. Nutrition, vitamins, supplements, acupuncture, electrical stimulation, heavy metal chelation and stem cells have all been suggested to treat ALS. Results may vary from beneficial to damaging. Consult a doctor before going alternative.
  1. Bathing. Handrails, shower chairs and handheld showerheads can help patients bathe themselves. Eventually the person caring for someone with ALS will be fully in charge, though, and may require assistance from mechanical lifts or shower chairs.
  1. Blood clots. Symptoms of a blood clot in the legs include redness, heat or discomfort in one leg, one leg more swollen than the other, swelling that does not recede overnight, and pain when standing or stretching calf muscles. Signs of a blood clot that has traveled to the lungs are sudden-onset chest pain and shortness of breath.
  1. Cognitive and behavioral changes. Half of ALS patients display changes such as acting inappropriately in public or toward relatives and caregivers, apathy, decreased recognition and response to other’s feelings and needs, repetitive or ritualistic activities or habits, or a change in diet that including new favorite foods or eating too much at one sitting.
  1. Constipation. Consider increasing the patient’s intake of fiber and fluid. Ask a doctor about medications like stool softeners or laxatives.
  1. Contractures. Physical therapy and range-of-motion exercises help prevent contractures. Massage, splints, braces and proper positioning in a bed or chair may relieve discomfort.
  1. Dressing. At first, a key chain attached to zippers and hooks and loops sewn onto skirts and pants are enough to enable an ALS patient to dress themselves. When caregiver assistance is required, loose, larger, warm clothing is preferable.
  1. Driving. An occupational therapist or the Association for Driver Rehabilitation Specialists can assess the driving skills and limitations of an ALS patient. A doctor can intervene if the patient is unwilling to give up the car keys.
  1. Drooling. Inability to swallow saliva can lead to choking, skin irritation, and embarrassment. Occupational therapy and medications can help manage this problem.
  1. Dry mouth. Saliva management drugs can dry the mouth and cause nose bleeding. Increase fluid intake and attach a humidifier or ventilator in the room. Consider an OTC dry mouth spray or moisturizing mouthwash.
  1. Plugged ears. Nasal strips may stop snoring and ‘open the nose,’ at the same time ‘popping the ears.’
  1. Fatigue. Patients should do any activity that they are able to perform and rest as soon as they feel fatigued. Severe fatigue may be a sign of breathing issues requiring assisted ventilation.
  1. Equipment. Canes, braces, walkers, wheelchairs, communication devices, coughing and suction machines, feeding tubes, lift chairs, hospital beds, alternating pressure mattresses, mechanical lifts and assisted ventilation.
  1. Exercise. Ask a healthcare provider about how often, for how long, and how much exercise the patient should practice. Mild physical activity can help mobility, improve endurance and reduce pain. If exercise is not possible, physical therapy and range-of-motion are good replacements.
  1. Eyes. Burning and dry eyes and watery eyes are both possibilities. Saline eye drops, or a warm wet washcloth or cold washcloth compresses are helpful. Persisting irritation may warrant antibiotic treatment.
  1. Falling. Walkers, wheelchairs, and other assistive devices can help prevent falling without depriving the user completely of independence.
  1. Feet. Lower extremities need protection in bed to prevent pressure ulcers and foot drop. The feet may also require exercises and leg braces.
  1. Hands. wraparound lap desks to support the arms; mobile arm supports to enable horizontal and vertical motion; lightweight wrist splints; eating utensil holders or specially designed eating utensils; key holders, doorknob extenders, light switch extension levers; lightweight reachers; card holders; button and zipper hooks; long-handled sponges; Velcro fasteners on pants and shirts; pencil grips; book holders; speaker phones and other products can improve dexterity when hands, arms, and shoulders start weakening.
  1. Scalp itchiness. Dryness, yeast or fungus overgrowth, and stress can cause the scalp to itch more than usual. Hypoallergenic hair care products, shampooing hair in lukewarm water, humidifiers, and OTC and prescription medications can help.
  1. Jaw clenching. A relaxing medication like Valium can help relieve jaw tightening or chattering due to cold, anxiety, or pain.
  1. Mechanical lifts. Motorized lifts can transfer a patient safely from bed to wheelchair or to the bathroom while sparing the caregiver’s back.
  1. Massage. Regular massaging is good for the body and the mind.
  1. Healthcare. Including regular checkups, flu shots and pneumonia vaccinations to prevent respiratory complications. Keep both a primary healthcare practitioner and a doctor who specializes in ALS.
  1. Medications. Rilutek is the only drug specifically developed for ALS. Other drugs are prescribed for the symptoms of ALS. These drugs are often covered by insurance.
  1. Neck. Soft collars, neck braces and head supports can provide support for the head and reduce neck problems.
  1. Pain management. An estimated two-thirds of ALS patients suffer from chronic pain from cramps, pressure sores, joint stiffness, and spasticity. Rest, relieving coughing, exercise, and medicines can be used to address pain.
  1. Positioning. Customized pillows and wheelchairs can keep the body properly aligned while lying and sitting down. The person caring for someone with ALS should also help with repositioning when the patient is not able to change positions.
  1. Pregnancy. Women with ALS who wish to be mothers should know that it is possible but also consider that ALS may be hereditary, and that they may not live to see their child grow – sad but true.
  1. Pressure ulcers. These sores are caused by sitting or lying down too long in the same position, and can lead to infection and even death.
  1. Uncontrollable laughter or crying. Not related to the patient’s actual emotions. Breathing in can help with laughing and breathing out for crying. Medication is also available; ask your doctor.
  1. Range-of-motion. Stretching and moving muscles and joints can enhance movement, reduce pain, and help prevent blood clots, pressure ulcers, discomfort, insomnia, and contractures.
  1. Frozen shoulder. A movable yet stiff and painful shoulder. Use armrests or pillows to make sure arms are well supported and positioned.
  1. Skin nutrition. Including 8-10 glasses of water per day, daily multivitamin supplements, linoleic-rich foods, and fatty acids like safflower oil, nuts, avocado, seeds, soybeans, salmon, tuna, shrimp and corn oils, as well as additional protein, zinc and vitamins A, C and K for skin damaged by pressure ulcers and vitamin C to build up collagen.
  1. Sleep. Comfortable mattresses and pillows and overall making sure the patient is comfortable at night saves the caregiver trips back to reposition the care receiver. Both OTC and prescription drugs are available as sleep aids.
  1. Edema. Fluid retention that can swell up the fingers, hands, arms, ankles, feet or legs may appear swollen. It can also be a sign of congestive heart condition, cirrhosis or kidney problems. Compression hose, shoes that lace instead of slippers, lower salt intake, and diuretics can help manage edema.
  1. Oral care. A child’s toothbrush or Toothette Plus Swabs with alcohol-free mouthwash can make it easier to maintain proper oral hygiene. A strong mouthwash can help to heal sores in ALS patients who bite their cheeks, lips, and tongues.
  1. Temperature. Extra socks and gloves, room heaters, massage, range-of-motion, hot water bottles or hot packs can warm cold feet and hands.
  1. Urinary urgency. Unlike incontinence, increased urgency to urinate in ALS patients may be temporary and can be managed with Ditropan to relax the bladder.
  1. Yawning. Up to half of ALS patients experience excessive yawning even if they are not tired. Sucking on a hard candy or taking Effexor, Ativan or Klonopin can help stop yawning.