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Daily Aids for People with ALS (Lou Gehrig’s Disease)

Daily Aids for People with ALS (Lou Gehrig’s Disease)

Daily Aids for People with ALS (Lou Gehrig’s Disease)

Every 90 minutes someone is diagnosed with ALS. In fact, the disease affects ~30,000 people in the U.S. with 5,000 new cases diagnosed every year. The incidence of ALS is 5x higher than Huntington’s disease and equal to multiple sclerosis.

Learn more about this disease and daily aids that can help as ALS progresses!

All About ALS

What is ALS?

ALS is a progressive neurodegenerative disease. It affects nerve cells in the spinal cord and brain. It was identified in 1869 by Jean-Martin Charcot, a French neurologist. In 1939, ALS ended the career of Lou Gerig, a professional baseball player, and was commonly referred to as Lou Gehrig’s disease.

ALS stands for amyotrophic lateral sclerosis. A + myo + trophic = No + muscle + nourishment. Lateral refers to the areas in the spinal cord where portions of the nerve cells that signal and control muscles are located. And sclerosis refers to the scarring or hardening that occurs in this region as the area degenerates.

How does ALS affect movement?

ALS nerve diagram

From the brain to the spinal cord to the muscles, motor neurons reach throughout the body and govern voluntary movement and muscle control. ALS causes progressive degeneration of these motor neurons leading to their deaths. As the motor neurons die, the brain can’t begin or control muscle movement. This leads to progressively effected muscles and may cause the person to lose the ability to speak, eat, move, and breathe.

What are the symptoms of ALS?

ALS symptoms

Initial symptoms of ALS can vary. The disease has a gradual onset and while one person may find it difficult to grasp a pen or lift a mug, another may trip more frequently, and another may find their vocal pitch changes when speaking.

Early symptoms include:

  • Progressive muscle weakness
  • Tripping
  • Slurred speech
  • Dropping things
  • Muscle cramps and/or twitches
  • Fatigue in the arms and/or legs
  • Uncontrollable periods of laughing or crying

As the disease progresses progressive muscle weakness and paralysis occur. When the breathing muscles are eventually affected, permanent ventilatory support will be needed to assist with breathing. Generally, muscles of the eyes and bladder are not affected. The rate at which ALS progresses varies from person to person. The mean survival time after diagnosis is 3-5 years, but some people live 5, 10, or even more years.

The sense of sight, hearing, touch, taste, and smell are not affected since ALS only causes the deterioration of motor neurons.

Who develops ALS?

als patient

Known as sporadic ALS, about 90% of ALS cases occur without a family history. The other 10% of ALS cases are inherited from a mutated gene and known as familial ALS.

The average age at diagnosis of ALS is 55 and most people who develop the disease are between 40-70 years old. People do develop ALS in their 20s and 30s, but this is less common.

ALS is 20% more common in men that in women. But the incidence is more equal between men and women with increasing age.

For unknown reasons, people who served in the United States Armed Forces are more likely to develop ALS than people who did not serve in the military.

Tips and Aids for People With ALS

Dining

Difficulty gripping your utensils?

  • Use foam tubing to help build up the handles of your existing utensils and make them easier to use
  • Or use utensils with built-up handles with a larger diameter that is easier to hold
  • A wrist support can help by holding the utensil for you, supporting your wrist, and strapping onto your hand and wrist

Difficulty bending wrist to use utensils?

  • Use bendable utensils to adjust the angle of the fork or spoon and help get food into your mouth

Difficulty cutting your food?

  • Use a rocker knife, it requires less strength and cuts with a simple rocking motion

Trouble stabilizing your bowl or place while scooping?

Difficulty scooping food from your plate?

Unable to move your arm and wrist sufficiently to feed yourself?

Difficulty bringing your arm to your mouth?

  • Prop your elbows on the table for support
  • Use a self-feeding support to stabilize your arm if you have upper extremity weakness

Difficulty bringing your cup to your mouth?

Difficulty sipping due to weak mouth muscles?

 

Bathing

Difficulty getting in and out of the bath or shower?

Difficulty standing during your shower?

Difficulty sitting/standing from the bathtub?

  • Use a bath lift to raise and lower you from the tub

Difficulty reaching your feet or back when bathing? Or problems holding onto your soap and washcloth?

Do your arms grow tired when washing your hair?

  • Prop your arms up on a grab bar or armrests of a bath/shower chair for support
  • Use a long-handled hair washer
  • Have someone wash your hair for you in the sink using a cape
  • Go to a beauty salon or barbershop

Is a weak trunk or neck making a standard shower chair uncomfortable?


Toileting

Difficulty sitting down on the toilet or standing up from the toilet?

  • Mount grab bars near the toilet for support
  • Use a toilet safety frame or toilet surround for support when sitting or standing, this is a great solution when there isn’t enough room for grab bars
  • Use a commode with arm rails over the toilet for support
  • Add a raised toilet seat so there is less bending required and it’s easier to stand up

Difficulty transferring to the toilet?

Unable to get on and off the toilet independently?

Difficulty getting to the toilet on time at home or when out?

  • Use a commode when at home
  • Use an adult diaper (ex. Depends) when not at home

Difficulty wiping due to tiredness or range of motion?

  • Use tongs to hold toilet paper or use a Bottom Buddy which requires less dexterity
  • Install a bidet that provides warm water and cleans your bottom

Grooming

Difficulty standing at the sink?

  • Sit in a chair in front of the sink
  • Prop your arms on the countertop for extra support and to compensate for arm weakness
  • Mount a mirror at chair level so you can see

Difficulty reaching your sink?

  • You may need to hire a contractor to remodel your sink to offset the pipes and make it easier to pull your chair or wheelchair under the sink

Difficulty gripping your toothbrush?

  • Use foam tubing to help build up the handle of your toothbrush and make it easier to grip and hold

Difficulty squeezing out toothpaste?

Difficulty opening your toothpaste cap or shampoo or body wash bottle?

  • Leave the cap off your toothpaste between use
  • Open a flip cap shampoo, conditioner, or body wash, using the edge of your countertop

Is your arm too tired to hold toothbrush or move it to brush your teeth?

  • Prop your elbow on the countertop for support and use a lightweight electric toothbrush

Are you concerned with choking on toothpaste and water when brushing?

  • If you use a suction machine, attach a special toothbrush to remove the toothpaste and water simultaneously as you brush your teeth

Problems wrapping floss around your fingers, holding it taunt, and pushing it between your teeth?

  • Try using a flosser, a device that holds a piece of floss in a plastic holder
  • If you struggle with holding the flosser, add foam tubing to the handle to build it up

Struggling to hold a razor stable while shaving?

  • Try an electric razor, many have safeguards to reduce your risk of cutting your face, prop your elbows on the countertop for extra stability

Difficulty holding your hairbrush or comb?


Dressing

Difficulty fastening and unfastening buttons?

Difficulty pulling zippers up and down?

  • Use a 2-in-1 zipper and button hook aid to pull your zipper using a small hook
  • Increase the size of your zipper tab using zipper pulls that are easier to grab
  • Wear pants with elastic waists and pull over jackets without zippers

Trouble staying balanced when getting dressed?

  • Sit down while dressing instead of standing

Difficulty pulling shirts or pants on and off?

  • Choose clothing with a looser fit that’s easier to pull on and off
  • Wear several thin layers that are easier to put on compared to bulkier options
  • Choose fabric that is easier to put on like nylon or cotton instead of fleece
  • Use a dressing stick to pull up your pants or pull on your shirt

Difficulty bending down to pull on socks?

  • Use a sock aid to pull up your socks without needing to bend

Struggling to tie shoelaces?

  • Elastic shoelaces just need to be tied once, after that you can slip on your shoes
  • Choose slip-on shoes, sandals, or shoes with hook and loop closures instead of laces

Difficulty putting on shoes?

  • Use a shoehorn that helps guide your heel and protects the back of your shoe from being crushed

Sleeping

Difficulty getting in and out of bed?

  • Use a leg lifter to lift your legs in and out of bed when lying sideways
  • Add an assist handle that you can grip to provide stability when getting in and out of bed
  • Add bed rails that can be used to pull yourself when in bed
  • Use a transfer board to move from your wheelchair to your bed and back
  • A caregiver can use a Hoyer lift or a ceiling lift to lift you in and out of bed

Difficulty moving in bed causing soreness, pressure sores, or stiffness?

  • Use a bed wedge to help with positioning to elevate the upper body or legs
  • Use a bed rail to help position yourself
  • Use a leg lifter to reposition your legs
  • Use a hospital bed that allows you to raise and lower the head and feet of the bed
  • Use a Podus Boot to keep pressure off your heels and keep your feet positioned comfortably while you sleep
  • Use an alternating air mattress to equalize pressure and increase your comfort

Medical Disclaimer: The information provided on this site, including text, graphics, images and other material, are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other healthcare professional with any questions or concerns you may have regarding your condition.