Adaptive equipment and assistive technology can help people with ALS perform daily routines, maintain independence longer, and live more comfortably. Getting the tasks accomplished after being diagnosed with ALS can be physically and emotionally exhausting for the individual and their family or caregivers.
There are several tools and resources that are available to assist caregivers in ensuring the safety and well-being of their loved ones.
A to-do list may include the following items:
Obtain a disability parking permit from your local government.
Make an application for the CPP Disability Pension.
If you cannot communicate or if your speech is altered, obtain a Medic Alert bracelet or equivalent. This will alert others to your condition.
Have your caregivers take a first aid course.
It is recommended that you consult your physician regarding whether you need to contact your car insurance provider because your insurance coverage might not be valid. Driving sometimes requires fast footwork and hand movements.
Consider involving an occupational therapist in discussing future home adaptations such as wheelchair ramps, bathroom set-up for safety, and wider doorways. You may also need to consider moving. You may not need to do so immediately, but planning and thinking about these issues in advance will reduce stress later.
Someone with ALS may wish to maintain independence as long as possible while staying safe. As limbs weaken and stiffen, the risk of falls increases, and they may require mobility aids to reduce risk. Discussing with occupational or physiotherapists about mobility assistive devices can guide you to the correct equipment so they can remain active and safe.
Assistive Equipment to Aid Transfers
Weakened leg muscles can make it difficult to get out of regular chairs. Motorized lift chairs help gradually lift a person to a standing or sitting position without causing injuries.
A ceiling lift can transport a person between a bedroom, bathroom, and living room. A rail is attached to the lift. Ceiling lifts are installed in the ceiling to lift the person using an attached sling. They should be installed by a professional familiar with assistive mobility equipment.
Lifts that can be rolled around, such as Hoyer lifts, use slings to lift a person up. The person is placed in the sling, raised, moved, and then eased out of the sling.
Stair glides are a means of transferring from one level to another in the house. They use a track attached to the wall side of the stairs. An automated chair moves up and down the track. People being transferred using stair glides must be able to sit safely and transfer safely on and off the automated chair. Installing stair glides should be done by an expert familiar with assistive transfer equipment.
If a wheelchair ramp cannot be installed from the front door of your home to ground level, porch lifts may be used.
As a caregiver, your role is vital to the care and well-being of your loved one with ALS. Consider some safety tools to reduce your physical and mental stress.
Adaptive clothing: Clothing designed for people who have difficulty dressing. These make daily activities easier, such as dressing and using the bathroom.
Portable showers: Portable showers can be attached to any faucet, have waterproof sides, allow enough room for a wheelchair to roll in, and have a pump to allow water to flow into the sink. These can be used if a person has difficulty accessing the bathroom.
Bidets: If a person with ALS loses hand function, bidets offer independence and can be added to any existing toilet.
Emergency Signal Systems: Emergency response services are beneficial when you are alone. If you apply for this service, you are given a transmitter with an emergency button. When you press the button, a signal is sent to the service, informing them of the emergency. It is also advised that you wear a Medic Alert bracelet (in cases of medical emergencies) if you leave home without a caregiver.
Cameras: Beneficial for caregivers who work remotely, cameras can monitor a person with ALS throughout the day.
Home automation systems: Allows people with ALS with limited or no hand function to remotely open doors, adjust thermostats, or turn on a TV and other electrical devices.
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