Mobility

As ALS progresses, it can impact the ability to move and perform daily activities. Mobility changes can vary significantly from person to person, depending on which muscles are affected first and how quickly the disease progresses. Maintaining mobility, even as it becomes more challenging, is critical for preserving independence and quality of life.

This guide can help you understand the different stages of mobility loss, anticipate their impact and adapt to these changes, ensuring that you continue to stay active and involved in daily routines as much as possible.

At each stage, it's essential to work closely with healthcare professionals, including physical and occupational therapists, to find the best adaptive devices and techniques to suit your changing needs.

Fully mobile

You may start to notice a gradual decline in strength and endurance. These changes can happen over months or years, and they’re often subtle at first. It’s easy to overlook early mobility symptoms or assume they’re due to aging or other conditions. This is one of the reasons ALS is often not diagnosed until symptoms become more pronounced. However, being aware of these early signs means you can start taking proactive steps to maintain your mobility and prepare for future changes.

My Lived Experience

When my dad was fully mobile, he could still go about his day and handle most activities, even as a highly active person who was a farmer for many decades. What we did notice was that tasks requiring more strength were becoming harder for him. He wasn’t able to "muscle through" his work anymore and got tired more quickly.

These changes were gradual, and because he was 70, he thought it was part of the natural aging process. One of the first clear signs that something else was happening was muscle twitching (known as fasciculations), which is often one of the first physical symptoms of Limb Onset ALS.

Dad was used to pushing his body to its limits, and as he started to lose strength, he had to adjust. While he reduced the intensity of his physical activities, he stayed active by finding new ways to work within his limits. He focused on what he could still do, rather than what he couldn’t.

Things to Consider

Neurological Physiotherapy: Working with a neurological physiotherapist can help you maintain mobility in early stages. While a lot of their work involves people with rehabilitation from neurological conditions, they can be supportive for fully mobile persons with ALS. They can design a program tailored to your needs, focusing on strength, balance, and flexibility while being mindful of not over-exerting your muscles. 

Moderate Exercise: Activities like swimming, walking, or biking are great ways to stay active while protecting your muscles from strain. It's important to keep moving, but be careful not to overdo it. Listen to your body and pace yourself.

Travel and Life Experiences: Now is a great time to prioritize experiences that are important to you. Whether it’s traveling, visiting family, or simply engaging in hobbies you love, you can still enjoy these things. Many people find joy in doing these activities while they're still fully mobile. Stay in the present moment and continue to live life fully.

Massage Therapist: Massage is beneficial at every stage of mobility progression, helping with muscle tightness and circulation. Consider a masseuse that offers home visits, so you will have access to services when mobility decreases.

Mental Health Support: Find supportive people and groups to ensure you have a place to process the emotions and fears that come along with progression. 

Proactive Next Steps

Coming to terms with the impact ALS will have on your mobility is one of the most important steps in this journey. While it’s crucial to continue living fully and enjoying the things you love, it’s also important to acknowledge any feelings of grief or loss that may arise. Seek out uplifting support—whether through loved ones, counselors, or support groups—to help you process these emotions. 

You can reach out to ALS Care if you are struggling to balance living in the present and accepting the changes ahead. We want to empower you to face each stage with strength and resilience.

Drop foot / hand

As ALS progresses, you might experience what’s called “drop foot: or “drop hand,” where certain areas of your body become harder to move. You could also experience localized muscle weakness in any part of the body. There’s no fixed timeline for how ALS affects mobility–it progresses differently for everyone. Some parts of your body will become more difficult to move than others, and adjusting to these changes will become part of your routine. 

My Lived Experience

Once progression started, it moved quickly for our unique case. We struggled to juggle everything all at once: still coping with the diagnosis, trying to get our house renovated so it would be more accessible, and ensuring Dad had the equipment he needed to support mobility. It was all new and overwhelming to us.

Dad had Limb Onset ALS, and the first noticeable sign was drop foot in his left leg. Emotionally, this stage was tough, especially for Dad. He had always been so active, and as he started needing support just to move short distances, it was a big adjustment. I remember hearing the sound of his cane clicking as he headed to the garage to do some stationary biking–it was a strange, new part of his routine.

This phase of progression can be hard mentally, but we found ways to stay positive and even had some of our best family times during this period. We played cards, worked on puzzles, and spent time reminiscing and sharing stories. Dad even started a gratitude journal! Even though it was challenging, it was also a time of deep connection for us as a family.

Things to Consider:

Stay in the Present: With ALS, change is constant, and focusing on today can keep you grounded. While mobility will be affected, your thoughts, memories and personality remain yours. Take time to appreciate the good moments you have today, and to accept the hard days when they come. A daily gratitude journal or personal mantra might be helpful.

Ankle-Foot Orthosis (AFO): If you experience drop foot, wearing a brace can help keep your foot stable and prevent  tripping. It’s a small adjustment that can make walking much easier. 

Wrist-Hand Orthosis (WHO): If you notice weakness in your wrist, WHO provides support to your wrist, helping you maintain movement and grip in early stages of progression.

Anticipate Equipment Needs: There’s lots of great technology out there to help with mobility. Staying ahead of progression means researching and acquiring equipment before you actually need it. Some items to consider for the future include a cane, walker, wheelchair, and adjustable bed.

Home Accessibility Modifications: Now is a good time to start thinking about how to adapt your home to stay accessible. This might include widening doorways for a wheelchair, installing a roll-in shower in the bathroom, and adding ramps or lifts to make getting in and out of the house easier. Making modifications in advance makes a big difference for later progression stages. 

Occupational Therapist (OT): Can teach techniques to move around in a safe way. It is beneficial to involve an OT as early as possible, and to reach out to them as your mobility requirements evolve. 

Proactive Next Steps: 

It’s a good time to start establishing a support network of friends, family, and/or caregivers who can assist with tasks that become harder to manage, like lifting items or moving around the home. See if they can commit a few hours a week to hang out and start getting familiar with a day in your life.

Walker

As walking becomes more difficult, transitioning to using a walker can help maintain mobility and independence for a time. This stage is an important marker of ALS progression, as it typically signals the need for additional support both at home and in daily life. Each person's journey through this stage will differ, but staying proactive in terms of mobility and comfort will make all the difference.

My Lived Experience

For Dad, the walker stage was incredibly brief as his progression started in his feet and moved rapidly. However, this phase highlighted some important changes. He wasn't able to go up stairs, drive the car, or get in and out of the house, to name a few.

We quickly realized that using a walker required more strength than he had in his legs. During a visit to our relatives' home, he collapsed at the end of a long driveway and needed to be carried to the car by two men. At home, transferring him without the right equipment was a massive challenge. Moving Dad manually from bed to couch to the toilet and vice versa, became a daily struggle. We didn’t have lifts or specialized tools at the ready, nor the training to understand their benefits.

It would have been a huge relief to have a wheelchair ready and fitted, but no one prepared us for the rapid progression or how slow the systems in Canada are to respond. We barely had time to process the diagnosis before facing the next stage. By the time we received the equipment, Dad’s needs had already progressed, making it unusable.

To anyone reading this, I can’t emphasize enough—you can never be too prepared for ALS. The more you have in place ahead of time, the greater peace of mind you’ll have throughout progression. And if it feels overwhelming, ask your family and friends to step in and help figure it out.

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‍Things to Consider:

Fully Electric, Adjustable Bed: Transitioning to a medical-grade bed that allows you to move the head, knees, and adjust the height is essential. Look for features such as tilting and vibration functions, which can provide extra comfort.

Alternating Air Mattress: In addition to a bed, the right mattress is helpful for preventing bed sores, especially as sitting or lying down for extended periods becomes more common.

Mobility Equipment: Walkers, wheelchairs and lifts can be a huge learning curve for families who have never faced mobility loss before. You can work with local agencies, or purchase your own equipment. There is nothing more valuable than hands-on experience, so trying out mobility devices before they are needed is extremely helpful in reducing the burden when they are in fact needed.

Vibration Therapy: Consider using a vibration plate for subtle, low-impact exercise. This can be placed under your feet or sat on to help with circulation and gentle muscle stimulation.

Accessible Transport: Look into discounted or accessible transport options in your city. Be sure to research your options early to ensure you have support in place for when you need it.

Commode Chair: Consider a commode chair to make toileting easier and more accessible.

Caregiver Support & Training: As mobility decreases, caregivers play a larger role in daily life. Make sure you have a care team, whether it’s family members or hired help. If you need help in getting government resources, hiring or training caregivers, please reach out to our team at <ALS Care>. 

Proactive Next Steps: 

As walking and hand mobility become more challenging, it’s a good idea to research and acquiring a wheelchair. While agencies may help, not all wheelchairs are the same, so it’s important to find one that meets specific needs. 

Advocate for a wheelchair that:

• Is narrow enough to fit through doors.
• Sits at a height where you can still interact comfortably with others.
• Has high-quality cushioning, such as a ROHO seat pad, and avoids hard materials like metal.
• Includes padded foot and arm supports for comfort.
• Is powered, with the option to add eye-gaze technology for future use.
• Can support a ventilator, often with a backpack-style attachment.

A well-chosen wheelchair will make a big difference in maintaining independence, so don’t wait until the last minute. As your needs change, the features of your wheelchair can evolve too, ensuring you remain as comfortable and mobile as possible.

Wheelchair only

At this stage, walking is no longer possible and mobility is primarily managed through the use of a wheelchair. Each person’s tolerance for sitting in a wheelchair can vary widely—some can sit comfortably for hours, while others may only tolerate it for short periods. Transfers, such as moving from the wheelchair to a bed or car, also become a critical part of daily life and require thoughtful planning and equipment.

My Lived Experience

As Dad’s ALS progressed, we needed two people to help transfer him from his wheelchair to the bed or sofa. In the beginning, we did this manually, but as he became unable to support himself, a lift was necessary. At first, using the lift felt intimidating, and Dad was particularly nervous about his trach during transfers. Over time, though, we all learned how to use the lift properly, and we developed a daily routine to ensure he spent time sitting in the wheelchair.

One challenge we faced was taking Dad out with his ventilator. Unfortunately, the design of his wheelchair made this difficult, and his past experiences with hospital staff mishandling his ventilator made him anxious about going places. We did our best to manage these concerns, but I wish we could have found a better solution.

Despite the challenges, I constantly reminded myself that Dad was still healthy in many ways. While ALS stopped his muscles from working, his mind and spirit remained strong. This mindset helped me focus on the positives, even during difficult moments. For many with ALS, there’s still time and opportunities to enjoy life, unlike other diagnoses that come with extreme pain or short life expectancy.

Thing to Consider

Bed Transfer/Lift: Installing a ceiling lift or using a freestanding lift around the bed can make transfers from bed to wheelchair much safer and easier.

Consider Additional Support: At this point, based on your needs, you may need more support from caregivers to ensure your daily care routine is possible.

Create A Daily Care Routine: As mobility progresses to later stages, establish a daily care schedule for the care team. It should include personal hygiene, eating, repositioning, exercise, and time in the wheelchair. It’s best to have caregivers check off tasks throughout the day. If you need assistance in creating a daily care plan, <contact ALS Care>.

Exercise & Movement: Gentle exercises and movement, even in the bed, are essential for circulation and overall health.

Massage: Regular massages can help with muscle tightness and improve comfort, making it a soothing part of your care routine. 

TENS/EMS Therapy: Electrical stimulation can help soothe muscles and create a sensation of movement, providing comfort and relief.

Proactive Next Steps

As progression continues, focus on maintaining overall health through proper nutrition, gentle movement, and regular connection with loved ones. Building a strong care routine that incorporates these elements will help keep the body as healthy and comfortable as possible. Be proactive in researching the right equipment, advocating for the best care, and staying ahead of changes, so you can navigate each stage smoothly.

Voice

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Can use voice

About this Stage of Progression

At this stage, you have full use of your voice. While it may feel difficult to imagine losing voice, there are many proactive steps you can take to prepare for future changes in communication. Rest assured that there are methods to help people who become non-verbal to maintain meaningful interactions through alternative modes of communication. 

My Lived Experience

When my dad still had his voice, it was easy to worry about how hard it would be to communicate once he lost it. It felt overwhelming if I dwelled on it too much. What I should have been focusing on is the fact that there are so many people who have been born without a voice, and over the years, incredibly smart people have developed tools to help non-speaking and non-verbal people communicate. Knowing these tools were available gave me a lot of comfort, and I worked with agencies to ensure I was always one step ahead of dad’s progression. This meant that when he needed something, like a voice amplifier or an eye gaze device, it was already set up and ready to go. I never wanted him to feel like he was lacking anything or waiting on something he needed. 

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Things to Consider:

Voice Banking: Voice banking lets you record samples of your speech now to create a digital voice that sounds like you. Later, when you become non-verbal, you can use an eye-gaze device to communicate using your own voice. While this is optional, it can be a great way to maintain a personal touch in communication.

Recording Memories or Stories:If there are stories or memories you love sharing, consider recording them now. These recordings can be a special way for you and your loved ones to revisit your voice and experiences in the future.

Eye Exam: Your eyes will become an important part of communication as ALS progresses, especially when using devices like eye-gaze systems. It’s a good idea to get an eye exam now to ensure your eyes are in good health. If you have any eye conditions, take steps to manage them to keep your eyes healthy. For instance, addressing issues like dry eyes early on can make a big difference later.

Speech Therapist: Involving a speech therapist early can be very beneficial. They can help you prepare and adapt to present and future changes.  

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Proactive Next Steps: 

While there are many proactive steps you can take, it's equally important to pace yourself. ALS is a demanding experience, and for those choosing to face progression, anchoring in the present is key. Enjoy today's moments while preparing for tomorrow. Give yourself the space to rest, relax, unwind, and savour the life you have right now. Balancing preparation with living fully in the present will help you maintain both your well-being and peace of mind as you move forward.

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Soft/slurred

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Non-verbal

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Breathing

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Breath without assistance

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Some shortness of breath

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Difficult breathing

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Require breathing support

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Eating

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Can chew and swallow

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Minor challenges swallowing

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Difficult to chew or swallow

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Unable to chew or swallow

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