ALS Mobility & Transportation
ALS is a progressive neurological disorder that affects nerve cells in the brain and spinal cord, leading to a loss of muscle control and mobility. As the disease progresses, individuals with ALS may experience difficulty walking, standing, and performing everyday activities. At ALS United Rocky Mountain, we offer a range of mobility solutions designed to support people with ALS, helping them maintain independence and quality of life.
ALS Home Safety
When living with ALS, remaining independent while trying to stay safe can be an ongoing challenge. As the disease progresses, it is important to reevaluate your home safety situation and make adjustments as needed so you can continue to stay safe in your home, enter and exit on your own, and call for help when needed.
The physical and occupational therapists at your ALS Clinic, outpatient physical or occupational therapy, or home health agency can help you find ways to be safe and maintain your independence.
Home Safety Evaluation
If you’re noticing changes in your mobility and are starting to feel unsafe in your home, schedule an appointment with your neurologist or primary care provider and ask about arranging a visit by a physical or occupational therapist from a home health agency. You can also request a home visit from your local ALS organization if it is a service they provide.
You can also share photos, videos, and measurements as needed with your physical and/or occupational therapist.
Once professionals are able to see and assess the safety and accessibility of your home, they can make recommendations such as using assistive devices, installing ramps, and making other home modifications. Their assessment can help you address current challenges and anticipate future needs.
Getting In and Out of Your Home
Whatever your current mobility status, you must have a way to safely enter and exit your home. Your physical therapist can help you determine the best solution for your home.
- If you need help navigating a small step or threshold, a relatively inexpensive portable ramp or threshold ramp may be all that you need.
- If you have multiple steps outside your home, you may need to install a longer custom ramp to help you enter and exit.
- If you have multiple steps and not enough room for a long ramp, a motorized vertical platform lift may be a good option for you.
Ramps and platform lifts are not covered by insurance, but you can ask your local ALS organization if you can borrow what you need from their equipment loan closet. If borrowing is not an option, ask if they have suggestions for getting financial or material assistance from charitable organizations in your community. Consult with a professional before purchasing, installing, or building ramps for your home. Depending on your state, you may not need to pay sales tax if your doctor provides a prescription for the ramp or lift.
Adaptive Housing Grants for Military Veterans
If you are a U.S. military veteran who qualifies for service-connected benefits, you will receive funding that you can use to modify and adapt your home to make it more accessible.
Developing a Safety Alert System
In the event of a fall or medical emergency, it is important to have a way to contact people who can help. Modern technology offers a variety of options.
Keeping your phone on you at all times is one way to have the ability to ask for help, whether by dialing or using a voice-activated assistant. Smart watches can offer similar capabilities and may even be able to detect a fall and automatically notify others.
Placing voice-activated smart speakers with digital assistants like the Google Assistant or Amazon’s Alexa in rooms where you spend your time is another option. If you use a speech-generating device, there are built-in features as well as apps that you can download that can help you alert others if you need assistance.
If you have a medical emergency, you will need a way to call 911. Not all voice-activated assistants on your smart devices can call 911. You may want to consider getting a medical alert system that can either dial 911 or an emergency response center.
Medical alert systems generally fall into two categories: monitored and unmonitored.
An unmonitored medical alert system is not connected to a central response center and will call numbers that are programmed into the system. It generally relies on landlines and does not require additional costs after your initial purchase. You can program your unmonitored system to automatically call 911 or dial your emergency contacts.
A monitored medical alert system will call an agent who can quickly assess your situation and call 911 or your emergency contacts if necessary. Monitored systems offer more features but do incur a monthly charge.
Methods for accessing medical alert systems include pressing a button on a necklace or bracelet and using voice activation. Your physical and occupational therapists can work with your speech language pathologist to determine the most appropriate device and access method for you.
Once you have your system in place, develop a list of family, friends, and neighbors who will be able to respond, and program their numbers as favorites into your devices.
Keep in mind that your local fire department can also be very helpful. If you fall, are not injured, and just need help getting up, you can call their non-emergency number to request a lift assist and they will come to your home without lights and sirens. Lift assists are a common part of a firefighter’s job, so do not hesitate to ask for help when you need it.
It is also a good idea to inform your local fire department of your diagnosis and provide your number so they can respond if they receive a call from you. This is especially helpful if you are unable to speak. In many instances, you can let them know ahead of time that there is someone in the household who is unable to speak. This way, if they receive a call from your number, they will treat it as a real emergency.
Preventing Falls
It is important to make modifications that will minimize your risk of falling, as falls can lead to injuries. Most falls happen in the home, so identifying potential hazards, problematic areas, and risky activities can help reduce your chances of getting injured.
You can begin by just looking around your space or following the recommendations from your home safety evaluation, such as clearing clutter, removing trip hazards like throw rugs, and installing grab bars.
If you have stairs, it is important to have railings that extend from the top of your stairs to the bottom. You can add an extra grab bar at the top or bottom as needed, or perhaps a second rail to have one on both sides. If you have small steps or raised thresholds inside your home, consider installing grab bars and/or threshold ramps as needed.
If you find that you are tripping, or if you or your loved ones have any concerns that your walking is unsteady, meet with your physical therapist to discuss mobility support options like ankle foot orthoses (AFOs) or walking aids. Having the right mobility device for your current needs is an important part of fall prevention.
Making Safe Transfers
Falls can also occur when transferring between your bed, toilet, wheelchair, recliner, and other locations. Learn about safe transfer techniques and assistive devices on our Transferring page.
Here are some other general tips that can help minimize falls around the home:
- Wear supportive, non-slippery shoes or slippers.
- Avoid walking barefoot or in socks when possible.
- If you have an AFO, wear it inside as much as possible.
- Try to avoid rushing and multitasking when you’re standing or walking.
- Try to avoid carrying things while walking, especially on stairs.
- Instead of stepping up on a stool to reach for things, place frequently used objects at a more accessible height.
- Make sure you always have adequate lighting to see where you’re going.
- If you drop something on the floor, try to avoid bending over while standing to pick it up. Instead, either use a reacher, sit down to pick it up, or ask someone else to get it for you.
Transferring with ALS Informational PDF Guide
If you feel that your needs are changing and your current strategies and devices are no longer keeping you safe, reach back out to your physical and/or occupational therapist to restrategize. Safety must always be the number one priority.
Bathroom Safety
Bathrooms are often the trickiest room to navigate—and they are also where falls and injuries can and do happen. In addition to following recommendations from your home safety evaluation, work with your physical and/or occupational therapist to create a safe bathroom environment for you.
Common bathroom safety recommendations include:
- Removing trip hazards like loose bath mats
- Adding non-skid mats to your tub or shower
- Installing grab bars in and around your shower and near your toilet
- Sitting on a shower chair or transfer bench while bathing
- Using assistive devices to help you get safely on and off the toilet
For more information on safety strategies and assistive devices for the bathroom, visit our Bathing and Toileting pages.
Making Your Home Accessible
Creating a safe home environment is one part of making your home more accessible. There are a number of other devices, adjustments, and modifications that can help you remain more independent in your home. Learn more on our Home Accessibility page.
ALS Home Safety PDF Guide
© 2024-2025 Your ALS Guide
Energy Conservation & Stretching Exercises
Plan Your Activities:
- Set priorities. Decide which activities can be delayed or dropped. Delegate tasks to others or get assistance for some tasks so you have energy for others.
- Simplify - Break down large jobs into small steps. Eliminate unnecessary steps or activities. Combine details (For example: cook and serve in the same dish)
- Balance your day and week with light and heavy work.
- Do the activities which require the most exertion when you have the most energy.
- Pace yourself. Avoid rushing. Allow sufficient time for tasks.
- Take frequent breaks from activity throughout the day. Rest before you become fatigued.
- Plan ahead and preposition tools. Gather all supplies before starting a task.
- Consider having groceries delivered. Shop online.
Body Mechanics/Work Methods:
- Sit to work whenever possible.
- Use good posture, avoid slouching- this helps breathing and circulation and prevents fatigue and pain.
- Use the muscles and joints best suited for the job.
- For light work: Do not use more parts of your body than necessary
- For heavy work: Use the largest and strongest muscles and joints
- Lift with your legs, not with your back. Avoid heavy lifting.
- Take deep breaths using your diaphragm.
- Exhale during the strenuous part of an activity.
- Inhale during the less strenuous part of an activity.
- Use proper work heights. Sit with your arms supported while you work.
- Limit reaching and bending. Avoid performing activities with your arms over your head for a sustained period of time.
- Push items instead of pulling them. Slide objects rather than lifting. Carry items using both hands. Use a rolling cart to transport items.
Environmental Modifications:
- Store items close to where you can use them. Store most used items in easiest to reach shelves and drawers. Put little used items in back or up high.
- Pull-out shelves and turntables can eliminate reaching.
- Move a bed to the main level to minimize need to go up/down the stairs.
- Use adapted equipment as needed.
- Wheelchair, raised toilet seat or bath bench
- Electric tools - toothbrush, razor, can opener, etc.
- Use a handicapped parking sticker.
- Avoid extremes of temperature and high humidity. On hot days, do outdoor work in the morning or evening.
Stretching Exercises:
- Lie on your back with your knees bent. Roll your knees to the right. Hold 30 secs. Roll your knees to the left. Hold 30 secs. Do 3x to each side. Lie on your back with your knees bent. Keep your feet together and drop your knees apart. Hold 30 secs. Do 3x.
- Lie completely on your right side with your hips and knees bent and pulled up. Roll your left shoulder back and reach back with your arm. Hold 30 secs. Do 3x. Repeat, lying on your left side and reaching back with your right arm and shoulder.
- Sit on the edge of your bed or a chair. Put your right leg out straight with your heel on the floor. Sit tall with your chest up and then lean forward from your hips until you feel a stretch in the back of your right leg. Hold 30 secs. Do 3x each leg.
- Stand with your hands on a counter or wall for support. Step back with your right foot and keep your heel on the floor. Keeping your chest up, bend your left knee and bring your hips forward until you feel a stretch in your right calf. Hold 30 secs. Do 3x each leg.
Range of Motion Exercises (ROM)
Range of motion (ROM) exercises are done to preserve flexibility and mobility of the joints on which they are performed. These exercises reduce stiffness and will prevent or at least slow down the freezing of your joints as the disease progresses and you move less often. Range of motion is the term that is used to describe the amount of movement you have at each joint. Every joint in the body has a "normal" range of motion. Joints maintain their normal range of motion by being moved. It is therefore very important to move all your joints every day. Stiff joints can cause pain and can make it hard for you to do your normal daily activities.
Each person with ALS needs a program of exercise tailored to his or her individual needs and abilities. With a prescription your doctor can either send you to an outpatient clinic to see a Physical Therapist or have one come to your home to help you design a personalized exercise program. The therapist will see you until you or your caregiver are independent with a home exercise program that you can follow through with daily. It is important to remember that as the disease progresses, the type of ROM exercises you will need will change. It is important to be proactive when this occurs and ask your doctor to write you another prescription to see a therapist so your home exercise program can be modified.
There are different kinds of ROM exercises. There are stretching exercises you can do yourself when you still have the muscle strength to move your joints through their complete ranges. These are called Active ROM exercises. There are Self-ROM exercises which involve using a stronger arm to assist a weaker arm to perform the exercises, eliminating the need for caregiver assistance. Then there are Passive ROM exercises which are done for a weaker PALS by a caregiver. Often a combination of the types of ROM exercises above will be used. For instance if a PALS has strong arms but very weak legs, he would use an active ROM program for the arms independently and a passive ROM program for the legs. Even within a limb the type of exercise used can vary depending on the strength of the different muscle groups. PALS with increased muscle tone (spasticity) will also need to learn techniques to decrease the tone before exercising. What type of ROM exercises are most effective for an individual is best determined by a therapist who can evaluate your own muscle strength and tone.
It is important to realize that these exercises will not strengthen muscles that have been weakened by ALS. Once the supply of motor neurons that control a particular muscle has degenerated, it cannot be regenerated by exercise. It is important that all exercise be performed in moderation. Fatigue will only increase your weakness and rob you of energy that you need for your daily routines and the activities you enjoy. If you find that your prescribed set of exercises tires you, talk to your therapist. Changes can be made that will eliminate the risk of fatigue. Similarly, none of your exercises should cause you pain. If you do experience pain when exercising, stop that exercise and talk to your therapist. It may be that you are not doing the exercise correctly, or perhaps some modification to your exercise program must be made.
If your joints are very painful and swollen, move them gently through their range of motion. These exercises should be done slowly and steadily. It is important with ROM exercises not to force movements and to stop a movement if it causes you pain. Damage to the joint space can occur if too much force is applied. Joint range of motion is done on one joint at a time. Stabilize with one hand just above the joint and place your other hand below the joint to move the part through its full range of motion. Your physical therapist will tell you how many times to do each one.
Range of Motion for ALS PDF Guide
Guidelines and information for those considering power wheelchair transportation options.
WHEELCHAIR-ACCESSIBLE VEHICLE INFORMATION
This is a list of general information for families interested in obtaining a wheelchair-accessible vehicle. This is by no means an exhaustive or perfect list. It is based on information from patients and families, as well as the research of some of our team members here at the center. If you come across any information that you feel may be helpful for other families looking for vans, please sent it to us! The more information, the better. We will discuss not only vans, but other carrying and transport options.
The term “wheelchair-accessible” or “handicapped” means a vehicle, either a full-sized or mini-van, that can accommodate a passenger in a wheelchair. For most of our patients, the person in the wheelchair is not the driver, so I will exclude this type of van from the list. The van needs to have adequate opening height and width for a wheelchair with a person in it. Any van that meets these needs should accommodate a power or manual chair with equal ease. The advantage of having a van is being able to transport someone in a wheelchair, even a very heavy power chair, without transfers or lifting. The person in the wheelchair drives onto the van and is locked in place with some sort of docking mechanism, sort of a safety belt for the chair and its passenger. This allows more freedom and the ability to go more places without the difficulty of transfers or lifting a chair into the trunk.
TYPES OF VANS: There are many different types of vans, both minivans and full-sized “conversion” vans. There are advantages and disadvantages to each. Minivans are smaller and drive more like a car. Unfortunately, the fact that they are smaller also means that the doorways are also smaller, and it can be more difficult to get a person in a wheelchair in the door, and there is less room for them when they get inside. Sometimes, this means that the person in the wheelchair must travel in a tilted position all the time, which can be uncomfortable on long trips. A lowered floor or raised roof on a minivan is a must, and you can take out some of the seats for more room. The larger vans have more room and taller doors, but may take a little more getting used to if you are currently driving a car. Either type of van will have either an electric lift at the opening that the person in the wheelchair will drive onto or a system that lowers a short ramp. Many have a remote control for the lift that can be used.
RAISED ROOF VS. LOWERED FLOOR: In order to accommodate the passenger in the wheelchair, the van needs to have either a raised roof or a lowered floor. Either will allow the headroom required for entry and for riding in the van as a passenger. From talking with many of our patients, it seems that most of them prefer the lowered floor. It not only allows for a wider opening, so there is no ducking or tilting required to get in and out, but it also keeps the person in the chair at a closer height level to the other passengers. This is really most important if the person in the chair is sitting in the passenger spot – it allows them to see out the windshield instead of having their head way up in the roof. Some minivans actually “kneel”, meaning they lower for entry, then raise to drive.
REAR-ENTRY vs. SIDE ENTRY: The opening that accommodates the wheelchair is either the side door or the rear door of the van. The door in the rear allows parking in more narrow areas, but makes the removal of the back seat necessary. The side door requires a little more room for entry, but allows for more seating to remain in the back of the van. From opinion polls, most of our patients seem to prefer the side-entry vans for the ability to keep as much seating as possible for other passengers.
REAR SEAT OR PASSENGER’S SEAT: When the person in the wheelchair is inside the van, there are different places that their chair can “fit” for transport. Most people prefer to be sitting where the passenger’s seat would be, in the front with the driver. This allows them to see out the windows and travel facing forward as they would if they were not in a wheelchair. It is a more “normal” seat for them as a passenger. If the driver and the wheelchair passenger are the two most frequent occupants in the car, most people MUCH prefer this arrangement. It does do away with the passenger’s seat, however, so other passengers (not in wheelchairs) have to sit in the back. The other option is that the person in the wheelchair sits in the back, either sideways (facing the door) or facing forward. This, according to our patients, is a less comfortable place to ride as a passenger, especially for long drives. If, however, the passenger in the wheelchair is only an occasional occupant of the van, it does allow the sparing of the passenger’s seat for another passenger.
DOCKING VS. TIE DOWNS: In any wheelchair-accessible vehicle, there is some sort of system to lock or tie down the wheelchair. That way, the chair is secured in the van and is not going to roll around or cause injury. It is VERY IMPORTANT that there is a safe and secure system for the chair, as well as for the person in the chair. Not only are these chairs very expensive and not covered by insurance if they are damaged as the result of negligence, they are heavy and can be very dangerous, both to the person in the wheelchair and the other passengers, if they move around in the vehicle. The person in the chair must also be secured with some sort of seat belt, preferably one with a chest or shoulder harness, to ensure that they do not fall out of the chair during transport.
The traditional method of securing a chair inside a van is TIE-DOWN. With this method, there are belts or straps attached to the floor of the van that fit around handles on the bottom of the chair. Each time the chair is brought in and out of the van, the tie downs must be manually tightened by the able passenger. These are safe and reliable, but are much more difficult to operate and more time-consuming than some of the other options. There are a variety of new systems that consist of a LOCKING MECHANISM, half on the chair and half in the van, that allow the person to drive the chair in and lock it into the system without any manual effort. There is a switch to unlock for getting out of the car. Most of our patients HIGHLY recommend these – they are faster and more reliable, and they make getting in and out of the vehicle much faster and easier. They are usually, but not always, available for the van and chair models needed. If you are purchasing a new wheelchair and will be getting a van, ask about them when you order the chair – some companies will send the chair ready-fit for these systems. Brands include EZ-LOCK and the Permobil brand lock that fits their chairs. You can also ask the van dealer about these systems.
LIFT VS. RAMP: On most vans, there is an electric lift that comes out the door, the person drives the chair onto the lift, and the lift picks them up into the van. When the person and the wheelchair are safely in the vehicle, the lift stores itself either inside or outside the van body. On other vans, minivans specifically, there is a mechanism where the whole van “kneels” and the person drives in via a short, retractable ramp. Either system works well, the best thing to do is to try out a few systems and see what works best for you.
NEW VS. USED: There are benefits to both new and used vans. New vans enable you to get exactly what you want, and can have more modern options that may include remote controls and new locking mechanisms. Getting a new van will also allow you to try a number of brands and makes and get the one that you like the best. Unfortunately, they can be very expensive, in the neighborhood of $30,000-60,000. One van should last for MANY years, so replacement cost should not be an issue, but the initial purchase price can be steep. Used vans can be significantly less expensive (as there is not too much of a market for them, they are less expensive than you would expect compared to a new van). The down side to a used van is that you may have to compromise some options for price, and the repairs may be more frequent. Most dealerships that sell new vans have used ones as well, most of he classifieds or website listings are for used vans. Pay as much attention to how well the lift operates as you do the van.
Overall, There are a few things to consider when deciding what you want in a van:
- Minivan vs. Full-Sized Van
- Raised Roof vs. Lowered Floor
- Point of Entry (Side v. Rear)
- Position of Person in Wheelchair (Passenger Front or In-Back)
- Method of Securing a Chair (Tie Down vs. Locking System)
- Type of Mechanism of Lift System
- New vs. Used
The best way to find a van that works for you is to look around. Test drive some vans, rent a van for a day, try out some lifts, and talk to people who own them. Some of our patients who own vans are available for advice, and there are often a number of vans here on clinic day. Call the clinic to get in touch with us, and we can get you in touch with a family to talk with regarding this process.
OTHER VEHICLES: Other vehicles can be modified instead of vans, including a new one where a Honda Element has been modified. Some families have transported the power chair in a truck or van, and simply loaded the chair with ramps, and secured it. This method can work, but involves a transfer of the patient to the vehicle seat, managing the weight of the ramps, and potentially protecting the chair from the weather. If you want to try to get the chair into a vehicle that is not adapted, be sure to mention this at the wheelchair evaluation. The chair type may affect whether it gets into the vehicle or not because of size differences. Converting a vehicle is usually the most expensive option, and not recommended.
BACK OF VEHICLE LIFTS: These can be a more cost effective option, but there are some considerations. Using one involves a patient transfer to a standard seat, and someone to load and unload the power chair. It attaches to a Class 2 trailer hitch for a scooter or basic power wheelchair and a Class 3 trailer hitch for a complex PWC, and some vehicles cannot use that type. Also, to be considered is how much weight the frame of the car can take- the lift weight, and the chair weight (200-450#) can be substantial. Weather is definitely a concern, and a covering is a must. It makes the chair somewhat more vulnerable to being hit/stolen/etc as well.
List of sources for accessibility options and rentals:
Dealers:
- United Access - Colorado
https://www.braunability.com/unitedaccess/us/en.html - Mobility Works - Colorado
https://www.mobilityworks.com/about/freedom-mobility/ - Mobility of Denver - Colorado
https://www.mobilityofdenver.com/ - Frontier Access & Mobility- Wyoming
https://www.frontieraccess.com/index.htm - ParaQuad - Utah
http://www.paraquad.com/ - United Access - Utah
https://www.unitedaccess.com/ - AMS Vans - Nationwide
https://www.amsvans.com/
Many local car dealers have a department that sells handicapped vans. If you are going to go this route, MAKE SURE you use a dealer that has a lot of experience with this type of vehicle. Be a good consumer and do your research! Many companies will say that they can do a conversion, but you need to make sure they really do know how to do it WELL, and that they have experience. It’s a big investment, do your homework!
These are websites with listings of websites for buying and selling of used equipment including vans:
- Classified Ads – usually used vans. May have to look under the “specialty vehicles,” “handicapped” or “other vehicles” section rather than general automotive.
- Craig’s List or EBay- www.craigslist.com, www.ebay.com
- Cars.com - WWW.CARS.COM – website with listings for used vans. You need to do an Advanced Search for vans by TYPE (not make). Put “handicapped” and “wheelchair” in the keywords box, and you can search by distance from your zip code. This allows you to pull up listings locally or all over the country
- Disable Dealer Magazine - www.disableddealer.com
- Blvd.com - www.blvd.com - where you can buy, rent, or sale wheelchair vans
- You can also do a search online for “used handicapped vans” and come up with thousands.
Adaptive Vehicle Accessories:
- Discount Ramps - www.discountramps.com
- SpinLife - https://www.spinlife.com/
What can you do if buying/affording a van is out of reach??
- Consider a wheelchair lift for the back of the vehicle. Many are fully powered; many fold up out of the way when not in use. Pay attention to the weight that your particular vehicle can handle on the frame/hitch and add the lift weight and the chair weight to make sure a particular type will work.
- Consider checking into a portable ramp which could load the chair into the vehicle. Make sure of the height of the chair and the size of the opening it has to go through. Some very large vehicles have a relatively small opening. Portable ramps usually sell from about $400 on up.
- Consider a lift that picks up the chair and places it into the vehicle. This is a swing arm, which comes out, attaches to the chair, lifts it up, and is usually swung into the vehicle.
- Consider finding someone through a support group or another source who has an accessible van, and would consider letting you occasionally use it.
- Consider renting an accessible van. They cost more than a standard car, but very useful for traveling.
- Consider a transportation company; many communities have various companies which provide this service. Some can be found through the regular bus system, some are via taxi companies, and some are private companies which all perform non-emergency transport for a fee.