Living with Amyotrophic lateral sclerosis (ALS) comes with a lot of challenges, especially as it starts to affect your ability to move. That’s where a power wheelchair can really help. It’s more than just a mobility device; it can give you more freedom and make everyday life a little easier.

Our California mobility providers explain what you need to know about power wheelchairs for ALS, including the different types, how they fit into each stage of the disease, and tips for choosing the one that’s right for you.

What Is ALS?

ALS, also known as Lou Gehrig’s disease, is a progressive condition that affects the neurons in the brain and spinal cord. Over time, the brain loses its ability to control voluntary muscle movement, which leads to weakness, loss of coordination, and eventually paralysis.

Stages of ALS

Early Stage

ALS progresses through several stages. In the earliest phases, individuals may notice muscle twitches, cramps, or weakness in one part of the body, typically the hands or feet.

Middle Stage

Those initial symptoms spread and intensify as the disease advances into the middle stages. At this point, many people begin to need assistance with mobility and may experience difficulty with speech and swallowing.

Late Stage

The late stages usually see a complete loss of muscle control, which means individuals may no longer be able to move, speak, swallow, or breathe without the help of medical devices. Despite these physical changes, many people with ALS retain full cognitive function throughout the course of the disease.

Types of ALS Wheelchairs

Because ALS is a progressive disease, the mobility equipment that works for you initially may not be the best fit down the road. Most people diagnosed with ALS will need to upgrade their chair over time as their needs change.

Manual Wheelchairs

In the early stages, many people start with a walker or manual wheelchair since they likely still have enough upper body strength to propel themselves short distances. These chairs are lightweight and easy to transport, which makes them a good starting point. However, as muscle weakness sets in, particularly in the arms and hands, they become harder to use without caregiver assistance.

Scooters

Mobility scooters are another option early on. They require less physical effort than manual wheelchairs, which makes them helpful for transitioning from the early to mid-stages of ALS. 

That said, scooters don’t offer much upper-body support and demand a certain amount of hand dexterity to operate. Most people tend to outgrow scooters fairly quickly as the disease progresses and their core strength and fine motor skills begin to decline. 

Power Wheelchairs

As ALS enters the mid-stages, a power wheelchair usually becomes the best option. These types of chairs are motorized, easier to control, and offer a lot more support than a standard scooter.

Group 2 vs. Group 3 Power Chairs

Group 2 power chairs are typically the first power chairs people try. They’re basic, mostly made for indoor use, and budget-friendly, but they eventually may not have all the features one might need as their ALS advances.

Group 3 power chairs are a better fit for mid-to-late-stage patients. They offer power tilt (tilting the seat back) and recline (reclining the backrest) features and customizable seating. In later stages, they can also be equipped with alternative controls like head arrays or sip-and-puff systems for hands-free driving.

Complex Power Wheelchairs

As mentioned above, once ALS reaches the later stages, the individual’s mobility needs become much more specific. Complex power chairs like the Quantum Edge 3 or those equipped with iLevel technology offer highly adjustable features like power tilt, recline, leg elevation, seat elevation, and customizable controls.

Comfort aside, these adjustments can help manage pressure sores, improve the patient’s respiratory health and digestion, and make daily interactions that much more attainable, like raising the seat to be eye-level with loved ones.

What Stage of ALS Requires a Wheelchair?

Everyone’s journey with ALS is unique, but most people start using a wheelchair when walking starts to become difficult or unsafe; this generally happens in the middle stages of the disease when muscle weakness and fatigue become more noticeable.

How Fast Does ALS Progress?

ALS progresses at different speeds for different people. Some may experience rapid changes, while others see a slower decline. On average, the life expectancy is between 2 and 5 years from diagnosis, but some live longer. Regular check-ins with your care team can help you manage symptoms and decide when it’s time to update your mobility equipment.

How Common Is ALS?

ALS is considered rare. It affects about 2 out of every 100,000 people in the United States each year. While anyone can be diagnosed, it’s most often seen in people between 40 and 70. That said, there are cases where younger or older individuals are affected, too.

What Causes ALS?

The exact cause of ALS is still unknown, but genetic and environmental factors are thought to play a role. For instance, around 5-10% of ALS cases are inherited. These are called familial ALS and are linked to specific gene mutations. On the other hand, some research suggests that exposure to certain chemicals, heavy metals, or toxins is also a risk factor.

In the beginning, ALS often appears as muscle weakness, twitching, or cramps. You might notice difficulty with fine motor tasks like buttoning a shirt, gripping objects, or even walking steadily.

Things to Know When Considering a Power Wheelchair

Start by talking to your doctor or a mobility specialist. Based on your symptoms and the progress of the disease, they can help you determine what features you may need.

Getting a Power Wheelchair Through Insurance

Getting a power wheelchair through insurance, Medicare, or Medi-Cal (California’s version of Medicare) can be a bit of a process, but it is doable. You can typically expect the following:

  • Medical Evaluation: Your doctor will need to examine you and provide detailed documentation explaining why a power wheelchair is medically necessary for your condition.
  • Insurance Approval: Once your doctor submits the paperwork, your provider will work with your insurance company,  Medicare, or Medi-Cal to get the approval; this can sometimes take a few weeks, depending on the insurer.
  • Trial Period: Many mobility equipment providers offer trial or demo periods, which will give you the chance to try out the wheelchair. If something doesn’t feel right, this is your chance to make adjustments or explore other models before making a final decision.

Have Questions About Your Options? Get in Touch!

Whether you’re looking for a specific chair, need help with paperwork, or just want to explore your options, our experienced team is happy to help. Call 800-980-5696 or reach out to Freedom Mobility today to get started!