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.

Walking Support Required

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.

‍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.

Breathing

Important: If you are currently experiencing breathing difficulties, call 911 immediately.

Breathing is a critical aspect of ALS progression, impacting everyone living with the condition. When changes occur, they can feel overwhelming, but being prepared can make a significant difference.

Knowing which tools and support systems are needed at each stage of breathing progression is absolutely essential. Proactive preparation can make breathing changes more manageable, helping ensure your safety and comfort.

In Canada, if breathing becomes difficult, calling 911 is crucial, as it is often the only way to quickly access life-saving procedures and equipment, like a tracheostomy.

Breathing without assistance

At this stage, the muscles in your throat and diaphragm are functioning normally, allowing you to breathe without assistance. Breathing feels mostly natural, and it’s easy to overlook as a concern during this stage of ALS progression.

My Lived Experience

When Dad was still breathing normally, we didn’t think much about it as a part of ALS. Since his ALS started with limb onset, our focus was entirely on mobility. 

During initial neurologist appointments, breathing was never really discussed, and we had no idea how important it was to monitor. In hindsight, lack of awareness about the seriousness of breathing decline became the most dangerous part of ALS for us.

We wish we had known earlier how critical it is to stay vigilant about breathing, even in the early stages.

Things to Consider

Community: While medical professionals and agencies provide insights that are very important, connecting directly with others who are already navigating life with breathing assistance can be invaluable.

Hearing their firsthand experiences helps prepare you for the road ahead. If you don’t have someone to talk to, contact ALS Care and we can help you connect with someone. 

Know the Signs of Breathing Difficulty: It's important to recognize the signs of breathing issues early.

Be aware of symptoms like shortness of breath, difficulty breathing when lying down, morning headaches, poor sleep, fatigue, weakness, difficulty speaking, trouble coughing, shallow or rapid breathing, and increased anxiety. 

Respirologist: A respirologist is a specialist who focuses on breathing and lung function. Establishing care with one early on can help you stay ahead of any issues and receive expert guidance as your condition progresses.

In Canada, it may be difficult to get a respirologist, so try to get on a waitlist as early as possible.

Proactive Next Steps

Do not underestimate the importance of monitoring your breathing. Stay proactive by learning the signs of breathing difficulties and watching closely for any changes.

Early recognition and intervention are key. Staying ahead of any progression in your respiratory health is critical for your overall well-being.

Shortness of breath & fatigue

At this stage, you may begin to experience signs that your breathing muscles are starting to weaken. While movement may still be possible, you might find yourself spending more time in bed due to difficulty breathing and increased anxiety around the sensation of breathlessness.

My Lived Experience

During this stage, Dad struggled with a lot of anxiety, though we didn’t fully understand it at the time. Initially, we thought he wasn’t getting enough oxygen, but later doctors told us that he was able to inhale easily, but he was losing the ability to expel CO2 on the exhale. The excess of CO2 in his body also caused him significant fatigue and exhaustion. 

Symptoms we noticed included Dad spending more and more time in bed, even though he still had the strength to move around. We also started to notice gaps in his speech, as he needed longer breaks after speaking. One of the things we observed was that Dad wanted to lie flat most of the time, which was unusual for him. In hindsight, this was likely a way to try and ease his breathing.

Things to Consider

Have a plan for later stages: Be prepared for when breathing becomes more difficult. In Canada, many ALS patients eventually need to call 911 and be admitted to emergency for breathing support. It's important to make this call when breathing is still manageable but getting challenging. Unfortunately, some individuals pass away in their sleep because they aren’t aware of how critical it is to act early.

CPAP (Continuous Positive Airway Pressure): This device provides a steady stream of air pressure to keep airways open, especially while sleeping. It doesn’t assist with the effort of breathing but may be helpful in the early stages. However, many healthcare providers may not fully understand its limitations in ALS.

BiPAP (Bilevel Positive Airway Pressure): Delivers two levels of air pressure—higher when you inhale, and lower when you exhale. It’s more suited for ALS patients as it helps both inhale and exhale, improving oxygen and CO2 exchange, reducing fatigue, and making breathing more comfortable in early stages. 

Oxygen Tank: Having an oxygen tank and mask available at home can provide temporary relief when needed. It's helpful to have this on hand as breathing support before making decisions about more advanced interventions.

Proactive Next Steps

Signing up for the Provincial Respiratory Outreach Program (PROP) through Technology for Living is an important step to take early. This program can help you learn more about what is required for future respiratory support, including the potential decision to pursue a tracheostomy. Understanding your options in advance will allow you to make informed choices as breathing becomes more challenging.

Difficulty breathing

At this stage, breathing becomes more difficult, often accompanied by noticeable fatigue and shortness of breath. It's a sign that the muscles responsible for breathing are weakening, and the body struggles to inhale, to expel CO2 effectively, or both. This stage can progress rapidly, so early recognition and preparation are key.

My Lived Experience

This stage snuck up on us and moved faster than we could have anticipated. About six months after Dad’s diagnosis, we began to notice he was getting more fatigued, but we didn’t understand how serious it was. His breathing was slowly deteriorating, and we weren't prepared with any equipment to support him. One day, Dad told me he couldn’t breathe well and needed to go to the hospital.

At the hospital, we learned Dad’s CO2 levels were high, and his oxygen was low—his body was no longer able to expel CO2 effectively. The doctors intubated him immediately to help him breathe. He was awake but unable to speak, which was terrifying. The hospital staff then asked us a difficult question: Did we want to give him a tracheostomy or unplug him and let him pass away?

The doctors and neurologists strongly suggested we should let him go. They warned us of the difficulties of caring for someone on a ventilator with a tracheostomy, mentioning the high costs, risk of infections, and what they called "locked-in syndrome." Locked-in syndrome is a neurological state where a person is fully conscious but unable to move or speak, communicating through eye movements only. 

When we told the hospital staff Dad wanted a tracheostomy so he could come home, the doctor scoffed at the idea, calling it unrealistic.

But Dad wanted to live so we talked to people who have had a tracheostomy and followed our hearts. Dad wasn’t a thrill-seeker; he enjoyed being with family, having visitors, and simply being present. It felt too soon to lose him, especially since we had just received his diagnosis 6 months earlier. So, we chose the tracheostomy, allowing him to continue living despite the challenges ahead.

Things to Consider

Call 911: There will be a point in breathing progression where you need to call 911. This can be an emotional moment, but it is essential to ensure you do this early, when symptoms are starting. The doctors at the hospital are trained to help you with next steps.

Portable Oximeter:  A small, cost-effective device that clips onto the finger to monitor oxygen levels. It’s great for spot-checking oxygen saturation, with 100 being fully saturated and anything below 90 being concerning. While it’s useful in the short term, it can be uncomfortable for long wear. Also, an oximeter does not measure CO2 levels.

BiPAP (Bilevel Positive Airway Pressure): Delivers two levels of air pressure—higher when you inhale, and lower when you exhale. It’s more suited for ALS patients as it helps both inhale and exhale, improving oxygen and CO2 exchange, reducing fatigue, and making breathing more comfortable in early stages. 

Ventilator: A life-sustaining device that takes over the full function of breathing. It requires a tracheostomy (a small surgery to insert a tube into the windpipe) and a recovery period of a couple of weeks for most patients.

Respiratory Support Training: Learn what care looks like after a tracheostomy so you can prepare. PROP offers a free 2-day course that is required before going home after a tracheostomy.

Proactive Next Steps

As your ability to breathe on your own declines, you will become more reliant on breathing support, eventually needing a tracheostomy and depending on a ventilator full-time should you choose to continue living. 

Seek stories within ALS communities and learn more about quality of life with a ventilator from people who already opted for it. When the time comes, ensure you can make an educated choice about getting a tracheostomy.

Require full-time breathing support

As the ability to breathe on your own declines, you will rely more and more on equipment for support. A respirologist will be able to assess your breathing and set up the ventilator to ensure it is supportive of your current status.

Eventually, you will become completely reliant on the ventilator. The ventilator will go with you on your wheelchair and it will be part of daily life. 

My Lived Experience‍

When Dad had his tracheostomy—a procedure where a hole is cut in the throat to insert a pipe to assist with breathing—those first six months were incredibly intense. The learning curve was steep, and we felt overwhelmed by the amount of care needed.

Two years after his diagnosis in 2022, we know it was the right decision for our family. Dad is now surrounded by love and care, and what once seemed impossible is now part of our everyday routine.

Once the tracheostomy was in place, we all got trained on how to manage Dad’s care, from handling the ventilator to stoma care. Eventually, we developed a strong rhythm and built a care team of 10-15 trained family members and caregivers. Dad is fully dependent on the ventilator, with no independent breathing time, but despite that, he has a good quality of life. He enjoys hanging out with us, watching TV, seeing family photos, and being in a loving environment as he bravely faces ALS.

I’m incredibly proud that Dad is one of the few ventilated ALS patients thriving at home. We are just happy to have him here so we can shower him with care, attention and love.

Things to Consider:

Ventilator & Tracheostomy Routines: Managing the ventilator and tracheostomy involves a lot of tasks—cleaning, switching circuits, changing the outer cannula, and caring for the stoma. A daily, weekly, and monthly schedule will help ensure nothing is missed.

Always-On Oximeter: We invested in an oximeter similar to the ones in hospitals. It has a soft finger cover and constantly reads Dad’s oxygen levels, helping us avoid desaturation events by alerting us to congestion. This is different from a portable oximeter, which is used for occasional spot checks, especially when mobile.‍

Cough Assist Device: This device helps produce a cough to expel mucus and phlegm, preventing it from staying in the lungs and throat.

Oxygen Concentrator: This device pulls oxygen from room air and connects to the ventilator via a tube to provide additional oxygen when needed. 

Oxygen Tank: Keep a backup oxygen tank in case the concentrator isn’t working, providing a reliable source of oxygen. Make sure you have the correct attachment and tube to connect to the back of the ventilator. 

Generator: Ventilators can run for 4-6 hours during a power outage, but having a backup ventilator and a generator is crucial to avoid any interruption in breathing support. 

Training Caregivers: Most people, including paramedics and hospital staff, may not have experience with ventilators. It’s vital to train yourself, your family, and caregivers on how to manage the ventilator. The more people who can assist, the easier it will be to manage the 24-hour care required.

Respiratory Therapist: Work with a respiratory therapist who can provide guidance, support, and training for managing the ventilator and ensuring everything runs smoothly. They will also assess if and when ventilator settings need to be adjusted.

Cleanliness:  Keeping hands clean, wearing masks, and sanitizing the room daily are essential when managing a ventilator. Since the airways are open, the risk of infection is higher, and it’s important to take these steps to avoid pneumonia.

Antibiotics: Since infections can happen more easily with a tracheostomy, it’s a good idea to keep antibiotics at home. We learned this the hard way when Dad developed an infection on a Friday and couldn’t get medicine until Monday, leading to an unnecessary hospital trip.

Proactive Next Steps

One of the most important steps is to continue to train as many people as possible to help manage your ventilator. Having a reliable, well-trained team will make the care process easier and allow everyone to share the workload. Being prepared will help ensure that your care is consistent, and you have the support you need when challenges arise.

Voice

For some, changes in voice may be among the first signs, as is often the case with Bulbar Onset. For others, like with Limb Onset, voice changes may come later. 

Voice is deeply personal, and thinking about changes can feel overwhelming. But know that many have been through this before you, and today’s technology offers incredible ways to stay connected. From voice tech to communication devices, you can express your needs, share love, and stay engaged–even when non-verbal.

Can use voice

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.

While he was often in his room during this time due to rapid progression of mobility loss, he would use his voice to help us understand how to set up his room, what he liked to listen to on the radio, and his dislike for having any liquids spilled on him. Spending time with Dad and learning about his needs while he could speak meant we could be mindful of these things as his ability to express them verbally faded.

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.  

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.. 

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.

Soft/slurred voice

In this stage, as your voice becomes softer or more slurred, having equipment to call for assistance when needed is crucial. Ensuring you have reliable ways to communicate as your voice weakens will help maintain independence and reduce anxiety.

My Lived Experience

At this point in Dad’s progression, his voice became softer and it caused a lot of anxiety for him. He struggled to call out for help, and because we didn’t have a bell or other system at first, he would bang on the wall to get our attention when we were out of earshot.

While Dad still had full control of his voice, we learned his likes, dislikes and preferences through our commitment to caregiving. Because we spent so much time with him during the early stages of progression, we developed a strong understanding of his needs. This foundation made it easier for us to maintain continuity of care, even as his abilities changed. 

Even after he lost his voice completely, we remained committed to learning and responding to his changing needs, ensuring he always felt heard and cared for.

Things to Consider

Voice Amplifier: A voice amplifier can help boost the volume of your voice if you’re still able to speak but need extra volume. It usually comes with a microphone that can sit near you to amplify your speech. 

Walkie Talkies: If you’re still able to press a button, walkie-talkies can be a great way to call for help at night or when others aren’t nearby.

Bell or Head-Activated Switch: Having a bell or similar device handy ensures you can easily get someone’s attention when needed, especially when movement becomes more difficult. A head-activated switch is a device that allows individuals with limited hand mobility to trigger a signal by moving their head. 

Proactive Next Steps

Try using an eye gaze device and start making notes about your preferences and needs now. These notes can be programmed into an eye-gaze device when verbal communication becomes challenging. 

It might even be fun to create a list of your pet peeves or specific care requests so that you don’t need to repeat yourself and your caregivers can make you as comfortable as possible down the road.

Non-verbal

During the non-verbal stage of ALS, you will no longer be able to speak and yet you can still communicate effectively using technology and other tools. While this change may seem daunting, many people live full and meaningful lives without voice, thanks to advances in communication devices.

My Lived Experience‍

When Dad became non-verbal, it was the last major change in his progression. By that point, he already had a tracheostomy, a feeding tube, and was immobile. We felt fortunate that we had been participating in his voice progression until this point and made sure he had all the tools he needed to communicate once this stage arrived.

As we noticed his needs changed, we updated his communication tools, like his comms board and eye gaze device. For example, early on, he often felt itchy, but as time went on, that was less of an issue. Instead, he struggled to regulate his body temperature, so we added "too hot" and "too cold" options to his communication board.

We also realized that Dad couldn’t close his eyes fully at this stage, so we incorporated eye drops and an eye pillow into his routine to help him rest more comfortably.

Things to Consider

Eye Drops: High-quality, preservative-free, natural eye drops are essential as your eyes will be your primary mode of communication, and blinking might decrease, making it harder to keep your eyes moist.

Yes/No Board: This simple board allows family and caregivers to ask direct questions and quickly determine your needs based on whether you look at the Yes or No on the board. As the board became second nature, we simplified further—first using thumbs up/thumbs down hand gestures, and eventually, Dad would just look left for "no" and right for "yes." This kind of flexibility helped us stay connected and ensured we could always understand his needs.

Comms Board: A communication board with rows and columns of categorized options is helpful. Each row contains several options related to a single category, allowing you to point to or select the things you need.

Eye Gaze Device with Stand: An eye gaze device gives you control over your communication and allows you to ask for what you need independently. It can also be used for activities like writing or even playing games. An adjustable stand is key for positioning the device while in bed or in a wheelchair.

Proactive Next Steps

Fine-tuning and adjusting your eye gaze device and communication board regularly will be essential to ensure that the programmed items reflect your current needs. In your spare time, consider using the eye gaze to write longer messages, blog, or even to play games. Stay engaged in activities you enjoy, keeping your mind active and expressing yourself in new ways.

Eating

Entry eating paragraph

Can chew and swallow

At this stage, you are still able to chew and swallow food normally, which allows you to enjoy meals and maintain your family traditions around eating. While these abilities remain, it’s important to savor this time, knowing that progression may affect these functions later on.

My Lived Experience‍

Dad always loved a good meal, and sharing meals together was such a meaningful part of our family’s routine. Even though eating might seem like a small part of life, it truly brought us closer.

Just the thought of him losing that ability was heartbreaking for me, and w didn't have a roadmap of what to expect. About a month after his diagnosis, I found myself overwhelmed by the idea that he might no longer be able to eat, and I stopped eating properly myself for two weeks, which led to severe hunger pains.

When I was able to make peace with Dad’s eating progression, I started eating again to gain weight, and now go to the gym twice a week to stay strong and look after my Dad as best as I can.

Eventually, I found an uplifting community that gave me hope. Knowing others had been through the same challenges helped me start looking after myself again. It made me believe that, despite the difficulties, we could face it together as a family. This is one of the reasons I decided to create this guide, so others wouldn’t have to face what we did. 

Things to Consider

Eat & Enjoy: Right now, it's important to fully enjoy the foods you love. We recommend a balance of healthy meals with occasional indulgences. While ALS affects voluntary muscles, your body still needs nutrients to stay healthy. Give your body the best chance to thrive by eating well, but don’t forget to enjoy your favorite foods along the way.

Dentist Appointment: Make sure to keep up with regular dental cleanings. If visiting the dentist becomes difficult, look into mobile dental clinics that can provide care at home. These professionals are experienced in handling patients with complex needs.

Naturopath: Consider consulting a naturopath for advice on supplements or dietary choices that may support overall health during ALS progression.

Proactive Next Steps 

Begin learning about dysphagia (difficulty swallowing) and how it can impact the types of foods you can safely eat as ALS progresses. Thinking ahead about meal preparation—such as blending or modifying foods—will help you be better prepared when swallowing becomes more challenging, while still enjoying meals via your mouth for as long as possible.

Difficulty swallowing

Dysphagia, or difficulty swallowing, is the medical term for this stage of ALS progression. It becomes harder to swallow solid foods, and softer, more manageable foods are often necessary.

My Lived Experience

Dad’s swallowing difficulties began while he was mostly in the hospital. We noticed he needed more help with eating, as he couldn’t lift utensils or cups on his own.

As swallowing became harder, he transitioned to softer foods like pasta, avocados, hearty soups, daals, and steamed veggies. Eventually, we moved to thicker, pureed meals like applesauce, mashed legumes, potatoes, and pudding. 

We weren’t thrilled with the food options available at the hospital, and in hindsight, it would have been helpful to prepare healthier options in advance. However, at the time, we were just trying to keep up with all the changes. This was before he became fully reliant on a liquid diet and tube feeding.

One thing Dad held on to for as long as possible was his daily coffee—it was a small comfort amidst all the transitions.

Things to Consider

Blended Meals: As swallowing becomes more difficult, blending meals into a smooth consistency can make eating safer and easier. Be sure to have a good quality blender on hand, and experiment with different ingredients to ensure the meals are nutritious and appetizing.

Tongue & Teeth: Dad often clenched his teeth during this stage, likely due to mobility progression. It’s important to be mindful of this to prevent accidental biting of the tongue and to make sure there is regular suctioning to keep his mouth clear.

Weight & Nutrition: Weight loss can occur throughout ALS progression, making it crucial to ensure your diet meets your daily needs for health and wellness.

Dietician: A dietician can assess your nutritional needs, help maintain weight, and guide you through dietary changes as swallowing becomes more difficult. Preparing in advance with their support can ensure a smoother transition.

Proactive Next Steps

Before transitioning to a liquid diet, it's a good idea to learn more about the PEG tube (a feeding tube inserted into the stomach). Some patients choose to schedule their PEG tube surgery in advance, which allows the procedure to be handled in a more controlled, non-emergency situation.

Unable to chew or swallow

At this stage, swallowing is no longer possible, and nutrition is provided entirely through a PEG (percutaneous endoscopic gastrostomy) tube. Adjusting to this new method of feeding can take time, but there are ways to make it more comfortable and tailored to individual needs.

My Lived Experience‍

When Dad became unable to swallow, we were still in the hospital, where he had his PEG tube surgery. Initially, the tube was too tight against his stomach, causing discomfort, but the hospital was able to fix it. 

Another issue was the quality of the hospital-provided feed, which included ingredients like high fructose corn syrup that we didn’t feel good about. We decided to invest in our own liquid feed with better ingredients.

At the hospital, our food choices were a real challenge as the on-site dietician was extremely skeptical of using a different feed bag from what they were used to. They made us feel scared about the fiber content, but Dad has been on his natural feed bag since the beginning and he is thriving. 

The feeding pump used to administer feeds was always running because each of his 3 meals took 2.5 hours to complete. It didn’t feel natural to us and we noticed some bloating.

So we switched to manual syringe feeds. This gave us more control over meal times and allowed us to feed Dad more comfortably. In 2024 we reintroduced blender meals made with real food, and he’s doing well.

Things to Consider

Oral Care: Daily brushing, cleaning, and flossing are still essential. We used small flossing picks to keep Dad’s mouth clean, along with a suction device to help clear saliva. We also have a mobile dentist appointment every 6 months to maintain good oral health. 

Nutrition: Whether you’re blending your own meals or using a pre-made liquid feed, consult with a dietician to ensure the nutritional content is adequate. It’s important to get enough calories and nutrients to maintain health.

Feeding Syringes: Syringe feeding allows for faster delivery of meals. The syringe is filled multiple times and manually pushed through the PEG tube until the feed is complete.

Feeding Pump: The feeding pump can be set to deliver meals at a controlled rate. It automatically runs the feed through a bag into the PEG tube at a pace that suits your needs.

Weighing yourself: Once you're wheelchair-bound, weighing yourself becomes more difficult. Partner with community health services to help you track your weight. They may have access to specialized equipment like wheelchair scales, making it easier to monitor your weight and ensure you're maintaining proper nutrition.

Gentian Drops: Even though swallowing isn’t possible, we used gentian drops in Dad’s mouth to stimulate his digestive system. This helped signal to his body that a meal was being consumed.

Proactive Next Steps

Regularly checking your nutritional intake through reports and adjusting meals, medications, and supplements as needed will be an ongoing process. Staying on top of nutrition is key to maintaining good health while managing this stage of ALS.

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