The ALS Diagnosis: What Now?
To help you cope with ALS and look to the future with hope, the ALS League is here for you and your loved ones. We are happy to share our knowledge and expertise with you.
Common Reactions
It’s completely normal to experience a range of emotions after hearing that you—or someone close to you—has been diagnosed with a serious illness like ALS. You may feel:
- Shock
- Fear of the future
- Disbelief about the diagnosis
- Worry for your loved ones and friends
- Sadness about losing the future you expected
- Anger at the medical system, or even at friends and family
- A sense of isolation, feeling different from those around you
- Deep sadness
- Relief that you finally know what’s been going on
Some people prefer to first process the reality privately before reaching out for help. Others find it easier to involve family and friends right away. Over time, most people begin to “rethink” their life and plans. One of the hardest things is finding a balance between staying positive and accepting that you are seriously ill.
It’s important to talk with your family and close friends about your diagnosis and how you’re feeling. ALS doesn’t only affect you—it affects the people around you, too. Sharing the ups and downs helps everyone support one another.
Sharing the Diagnosis with Others
Before the diagnosis, you likely went through a series of medical tests. Those close to you were probably worried, and they deserve to understand what’s going on.
Open, honest communication can prevent tension and misunderstandings. Try not to assume how others are feeling. How much you share is entirely up to you. No one automatically has the right to know everything about your private life, and you might not feel like repeating your story over and over. That’s perfectly okay. On the other hand, you may want people to understand that while your body is weakening, your mind and spirit are still very much alive.
The more people know how you’re feeling, the more easily they can offer help and support. Don’t be afraid to ask for help—sometimes people are unsure of what to do and wait until they’re invited to step in.
Keep in mind that not everyone will know how to handle the news. Some may find it hard to accept your illness or feel uncomfortable facing it. They may seem distant—not because they don’t care, but because they’re afraid or unsure how to engage.
Telling Children
What and how you tell children depends on their age. Still, an ALS diagnosis affects the whole family, and feeling left out can be worse than being gently informed. Explain what’s happening in language they can understand. Don’t overwhelm them with information—go at their pace, and reassure them that they can always come to you with questions.
Talking and Listening
One of the most important things you can do is talk and listen:
- To professionals who can provide accurate information and emotional support
- To your family and friends so they understand how you feel and can support you—and so you know how they’re feeling too
- To the ALS League, who truly understand what you’re going through
Remember: your emotions—and those of the people around you—will change over time. There will be highs and lows.
Coping with Emotions
You might find yourself laughing or crying at what seem like the “wrong” times, or feel like you can’t control your emotions. This may be due to how you’re feeling emotionally, but it’s often the result of ALS affecting certain parts of the brain.
This can be distressing—for you and those around you—but it’s a normal part of the illness. Sometimes medication can help manage it.
Living with ALS
Social workers, psychologists, counselors, and support groups can be incredibly helpful. You can learn from professionals familiar with ALS, share your experiences with others facing similar challenges, and find inspiration from those who are further along in their journey.
The ALS League, nursing homes, and other organizations offer social and emotional support.
Living with ALS often means facing a series of physical losses. But it can also be seen as a unique opportunity for personal growth. The choice is yours.
You can choose to deepen your relationships with family and friends, meet new people who understand your experience, or connect with others involved in the ALS community.
You can learn to use computers and new ways to communicate online.
You may find renewed appreciation for things you once took for granted—making time to read, listen to music, or explore spiritual awareness.
This list could go on. It may not include everything you’ve ever dreamed of doing, but it can still lead to a full and meaningful life. It all depends on your attitude and imagination. Hope, faith, love, and a strong will to live don’t guarantee immortality—but they can help you grow, even in difficult times.
Rising to the Challenge
Accepting ALS does not mean giving up. It’s the first step in making the most of your life with ALS. Stay positive—but don’t minimize your condition. ALS is serious. At the same time, don’t dwell too long on the negative aspects.
You may be one of the people who lives more than five years with ALS. No one knows when a medical breakthrough might occur—maybe even sooner than expected. That alone is reason for hope.
How You May Feel
Living with ALS often means confronting grief, loss, guilt, frustration—and sometimes fear and resentment. These feelings may mix with hope, optimism, or a strong determination to keep fighting.
It’s not helpful to keep these feelings bottled up. Doing so can create distance between you and those around you. Try to share what you’re going through with someone. Talking helps bring clarity and relief.
Many professionals are trained in emotional and psychological support. They can point you to a listening ear. Research shows that being open about your feelings helps you make the most of life with ALS—and that guilt or resentment don’t have to define your experience.
How Others May Feel
We know ALS affects the whole family. Routines and lifestyles are turned upside down, creating emotional challenges for everyone. Some loved ones may take over responsibilities that used to be yours. Careers may be put on hold, and financial stress can increase. Many people try to hide their own feelings of loss and helplessness in an attempt to protect you.
As ALS progresses, your relationships may change. Whether you’re part of a family, a couple, or a circle of close friends—hold onto what made those connections special before the diagnosis. Try not to let everyone become just a “caregiver.” Accept outside help for your physical needs, and most importantly, recognize and encourage your loved ones when they want to talk about their feelings too.
Intimacy and Sexuality
Physical closeness is at the heart of every loving relationship. We all need to feel connected to others. While ALS doesn’t affect sexual desire, it may make physical intimacy more challenging as movement becomes more limited. That’s why it’s important to talk openly about these changes and explore alternatives together. Consider speaking with a professional, such as a sex therapist, if needed.
Getting Organized Practically
1. Contact Your General Practitioner (GP)
Your GP can refer you to the nearest ALS reference center. They can also assist with applying for disability benefits or getting approval for in-home assistance. Encourage your doctor to consult with ALS specialists and therapists for expert advice. It’s also important to discuss whether your doctor is available for home visits as the disease progresses.
2. Register with the ALS League
The ALS League offers various services to people living with ALS. Let them know that you are an ALS patient, that you wish to register, and that you would like to receive any useful information. You can do this by sending an email to info@als.be.
3. Apply for a Disability Parking Card through the Federal Public Service (FOD)3. Vraag een parkeerkaart voor gehandicapten aan bij de FOD (federale overheid).
As an ALS patient, you are entitled to this card. Let the ALS League know about your application and ask for assistance if needed.
4. Request a Medical Alert System
A medical alert can be helpful for informing others of your condition—especially in situations where you may no longer be able to speak.
5. Contact Your Car Insurance Provider
If you don’t disclose your disability, your insurance coverage may become invalid. Make sure your insurer is informed.
Tools to Stay on Track
Keep the following documents and information in a folder at home, in a location that’s easily accessible to you and your caregivers:
1. Personal Information
Include your contact details, date of birth, living arrangements, details of your caregivers, and the specific form of ALS you’ve been diagnosed with.
2. “About Me”
Use this section to describe how ALS affects your life and what your current personal needs are. This is especially helpful during hospital stays or for caregivers visiting your home.
3. Communication Log
A communication log helps track what was discussed during interactions with professional caregivers. This keeps everyone informed and provides a clear overview of visits and care history.
4. Contact List of Healthcare Professionals
Maintain a list of names and contact information for all professionals involved in your care—at home, in the hospital, or elsewhere.
5. Equipment Log
Over time, you may begin using various assistive devices. Use this form to keep a record of all the equipment you’ve received, when you received it, and who to contact for support or service.
6. Medication List
Record your medications, instructions for how and when to take them, any side effects, and possible alternatives.
7. Appointment Log
Keep track of all appointments related to your ALS care to ensure you don’t miss anything important.
How to Stay Mobile
Stay Active
As a person living with ALS, doing exercises helps keep unaffected muscles strong and affected muscles flexible. However, exercises cannot restore strength to muscles that have already weakened due to ALS. Once the motor neurons that control a muscle are lost, they cannot be restored—no matter the type or intensity of exercise. What you can do is maintain joint and muscle flexibility through a personalized exercise program.
Daily movement exercises for each affected joint help maintain flexibility and mobility for as long as possible.
Exercises are typically done in a structured order—working through one limb’s joints before moving to the next.
Exercise with Moderation
Perform all exercises in moderation. Avoid fatigue and pain. If you experience either, inform your therapist so your routine can be adjusted.
Recreational Movement
As long as you enjoy walking, riding a stationary bike, or swimming—and it can be done safely—keep doing it.
Types of Exercises
- Active Exercises: You perform these on your own, using muscles that are still able to move the joint completely. Not everyone with ALS can manage a full routine of active exercises.
- Assisted Active Exercises: These involve support. A caregiver may help move the joint or show you how to use your own body to assist the motion.
- Passive Exercises: When muscles are no longer able to move a joint, a caregiver or therapist performs the movements for you. These exercises maintain joint mobility even though the muscles themselves are not activated.
Exercise Tips
- Make your exercises a daily routine. You can split them up to avoid fatigue.
- Do as many active exercises as you can. Later, you may switch to assisted or passive exercises.
- If you have a busy day ahead, ask your therapist to prioritize the most important exercises.
- Some exercises can be done while sitting or lying down—especially passive exercises.
- Stop any exercise immediately if it causes pain or fatigue.
Posture and ALS
As postural muscles weaken, discomfort in the lower back, neck, or shoulders may arise. Special cushions, back supports, and lumbar (lower back) or cervical (neck) rolls can help maintain good posture. Sometimes leaning back or using a neck brace may be necessary. Your therapist can help choose the right supports.
Aids for Difficult Movements
Adaptive Tools
Many people with ALS find it difficult to grip or manipulate objects. Replace everyday tools with specially designed versions that compensate for hand and wrist weakness:
- Utensils with thick handles make eating easier and more comfortable.
- Long-handled utensils can help compensate for limited shoulder movement.
- Cups with large handles reduce the chance of spilling.
- Plate guards help guide food onto your fork or spoon.
- Doorknob turners allow you to press or pull instead of twist.
- Key turners provide a thick grip to turn keys more easily.
- Thick pens or writing aids improve grip.
- Velcro fasteners can replace buttons or zippers, while elastic waistbands eliminate the need for closures altogether.
Electronic Aids
ALS patients can also benefit from adapted radio, light, and TV controls that work with a hand, head movement, or even a puff of air. Hands-free phones are useful as well.
Always discuss new aids with your occupational therapist before purchasing to avoid disappointment or unnecessary expense.
Orthotic Devices
Orthotics are wearable supports that help maintain joint position when muscles can’t.
- Universal cuffs attach with Velcro to the hand and can hold utensils, brushes, and other small objects.
- Thumb splints help spread fingers apart to improve grip.
- Wrist-hand orthoses stabilize the wrist and help hold tools or objects.
- Ankle-foot orthoses can correct foot drop, helping to prevent tripping. These are usually prescribed by a doctor.
Canes and Walkers
If one leg is weak, a cane (single or multi-point) can help redistribute weight and reduce the risk of falls. Choose a cane in consultation with your doctor or physiotherapist.
If both legs are weak but your upper body is still strong, a walker may be recommended. Walkers provide stability by distributing your weight over a larger area.
Wheelchairs
Most people with ALS eventually need a wheelchair. Some use one only for long outings, others for specific activities, and some rely on them most of the day.
A wheelchair increases independence, conserves energy, and enhances mobility. Work with your doctor to choose the right model.
There are many types—manual, electric, folding, with removable arms or trays. Choose carefully based on your current and future condition, financial situation, family support, and available aid.
Note:
- You may need ramps at home for thresholds.
- Furniture might need to be rearranged.
- Transfers (to/from bed, bath, toilet, car) usually require assistance.
- Always ensure the brakes are on and footrests are out of the way during transfers.
Patient Lifts
Lifts are used to transfer patients between bed, wheelchair, toilet, or bath—especially useful when the patient is heavy or the caregiver lacks physical strength. The patient is lifted in a sling and gently moved.
Communication Devices
As ALS progresses, speech may become impaired. Communication tools range from simple to advanced:
- Basic tools: Notebooks, slates, alphabet or symbol boards.
- Tech-assisted speech: Devices like the Lightwriter or smartphone/tablet apps (e.g. Voice Assistant, Siri) allow text-to-speech using a synthesized voice.
- Advanced tools: If hand function is lost, eye-tracking systems (e.g., Tobii) allow full communication via eye movement.
Dealing with Challenges
Falls
If someone with ALS falls, they need to be helped upright based on their strength. Some may stand with minimal assistance; others may need to be lifted or helped by two people. Always prioritize safety—for the patient and the helpers.
Muscle Cramps
These are common in ALS. Warmth, stretching, or massage can help relieve them. Persistent cramps should be discussed with your doctor for possible medication.
Joint and Muscle Pain
Proper exercise prevents stiffness and associated joint pain. Use pillows or supports to rest weakened arms and reduce shoulder strain.
- A sling can help while walking.
- A firm seat supports the hips better than a sagging chair.
- Change positions regularly.
- Sleeping may be improved with a sheepskin pad, foam mattress topper, satin sheets, or a vibrating air mattress.