Things to Consider if you have Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic Lateral Sclerosis (ALS) is the most common form of Motor Neurone Disease (MND). Around nine out of ten people with MND have the ALS variant, so the two terms are often confused or used interchangeably.

ALS used to be known as Lou Gehrig’s Disease after the legendary baseball player who, in the 1930s, was the first person to be formally diagnosed with ALS. The condition received renewed publicity with the Ice Bucket Challenge phenomenon that took the world by storm in 2014.

ALS is a neurological disorder that affects motor neurons. These are nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. ALS causes the motor neurons to degenerate, meaning they stop transmitting messages to the muscles. In turn, the muscles weaken, and can start to waste away.

The condition is degenerative, meaning it gets progressively worse over time. In advanced stages of ALS, the brain loses the ability to control even basic movements associated with speaking, chewing or breathing.

ALS can affect anybody at any age, although symptoms most commonly develop between the ages of 55 and 75 and men are slightly more likely to develop ALS than women.

Common symptoms of ALS

The progressive nature of ALS means that symptoms change over time. Early symptoms of ALS include the following:

• Muscle twitches, cramps and stiffness, especially in the arm, leg or shoulder
• Weakness affecting an arm, leg or the neck
• Slurred and nasal speech
• Difficulty chewing or swallowing

As ALS progresses, muscle atrophy tends to spread, causing weakness in other parts of the body. Later symptoms of ALS also include the following:

• Weight loss
• Constipation
• Drooling
• Difficulty speaking or forming words
• Breathing trouble
• Sudden and unintended emotional outbursts, such as laughing or crying
• Difficulty standing or walking

People with advanced ALS are unable to move, eat or breathe unaided. Naturally, this loss of function can cause anxiety and depression, especially as cognitive function is usually unimpaired.

Mobility aids for ALS

About 5,000 people in the UK are living with ALS. Although there is no cure for the condition, there are medications and therapies that reduce the rate of decline and help to manage the symptoms. This means that a growing number of people are continuing to live meaningful and rewarding lives for a decade or more after being diagnosed.

Having the right mobility aids is essential to help people with ALS to live more easily, safely and independently. Different pieces of equipment may be important for improving mobility at different stages of their ALS journey, including the following:

Walking sticks and walkers – a walking stick provides extra stability and support for people with early stage ALS. Those with more severe symptoms will benefit from a walker or rollator, which provides extra support. Some rollators have an integrated seat, which is ideal for those with weakness in the legs who might need to sit and rest.

Wheelchairs – Sooner or later, almost everyone with ALS will need to use a wheelchair to get around. Even those who can still walk will find a wheelchair is invaluable for going longer distances or when feeling fatigued. There is a huge choice of different wheelchairs available to those with ALS and when choosing one, it is important to make sure it meets the needs of the individual and his or her symptoms. For example, features like a headrest, elevating leg rests or a high-reclining back might be important.

Grab rails – the common symptoms of ALS make slips and falls more likely. Grab bars or rails in high-risk locations like bathrooms and staircases make day-to-day living easier and safer.

Joint supports – people with weakness in specific joints often find that joint supports are useful to give extra support to limbs. Other examples of ALS support include resting hand splints, low-back braces, and cervical collars to support the neck.

Bathroom accessories – on the subject of slips and falls, the bathroom is one of the highest risk locations in the home. But it is also the place where we least want to ask for help. There are numerous bathroom aids, ranging from a simple raised toilet seat to more complex gadgets like bath lifts. All of these help people with ALS to take care of personal hygiene with dignity and in privacy.

Adjustable beds – when the symptoms of ALS become more advanced, getting into and out of bed can become a real challenge. A raised or adjustable bed makes it easier to get into and out of bed for those living independently, and also makes life easier for caregivers.

Choosing the right mobility aids on your ALS journey

The fact that symptoms change over time can make it a challenge to choose the right aids for mobility and living. It is important to work alongside your physical or occupational therapist, who will be able to advise on what equipment will be most helpful and which features you need to look out for.

For more advice on ALS, visit the The ALS Association website.