What is ALS?
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects motor neurons in the brain and spinal cord. Over time, it leads to muscle weakness, paralysis, and eventually, respiratory failure.
There is currently no cure — but many patients live meaningful, connected lives for years after diagnosis, especially with proper care and support.
Typical ALS prognosis
The average life expectancy after an ALS diagnosis is 2 to 5 years, but this varies widely.
- Some people live less than a year after diagnosis
- Others, like physicist Stephen Hawking, survive for decades
- About 10–20% of patients live longer than 10 years
Progression can be rapid or slow, bulbar-onset or limb-onset, and is influenced by age, genetics, and access to care.
Factors influencing ALS progression
Several key factors can affect how fast ALS progresses:
- Age at diagnosis: Younger individuals tend to progress more slowly.
- Site of onset: Bulbar onset (affecting speech and swallowing) is often more aggressive than limb onset.
- Respiratory function: Decline in breathing capacity is a major predictor of shortened survival.
- Nutritional status: Weight loss can worsen outcomes — maintaining weight is protective.
- Access to care: Multidisciplinary ALS clinics improve quality of life and may extend survival.
- Genetics: Certain mutations, such as SOD1 or C9orf72, can influence disease behavior.
There is no way to predict progression perfectly — each ALS journey is unique.
Stages of ALS progression
While every case is different, ALS generally follows these stages:
- Early stage
- Muscle cramps, twitching, or weakness
- Difficulty with fine motor tasks
- Fatigue and coordination problems
- Middle stage
- Increased weakness and spasticity
- Difficulty walking or using hands
- Swallowing and speech changes
- Breathing challenges may begin
- Late stage
- Most voluntary muscles are affected
- Speech may become unintelligible
- Breathing assistance (e.g., BiPAP or ventilator) may be required
- Communication may rely on eye-tracking or text-to-speech tools
Despite physical decline, cognitive ability is often preserved, allowing patients to remain mentally engaged and present.
Is there any treatment?
There is no cure, but there are options that may modestly slow progression or improve comfort:
- Riluzole: Can extend life by a few months
- Edaravone (Radicava): May slow physical decline in some patients
- Respiratory support: Non-invasive ventilation can prolong survival and improve sleep
- Feeding tubes: Help maintain nutrition as swallowing becomes difficult
- Physical and speech therapy: Maintain function and communication as long as possible
- Palliative care: Focuses on symptom management and emotional support
ALS clinics often provide coordinated care across neurology, pulmonology, psychology, and rehabilitation.
Preparing for what’s ahead
Receiving an ALS diagnosis is life-altering. But planning ahead allows for more agency, dignity, and support along the way.
Key areas of preparation include:
- Legal documents: Advance directives, living will, and durable power of attorney
- Communication tools: Eye-tracking devices, text-to-speech apps
- Home modifications: Wheelchair accessibility, lifts, bathroom safety
- Support systems: Engaging caregivers, counseling, and support groups
- Grief and emotional planning: Addressing anticipatory grief in both patient and family
Some individuals also explore experimental trials and alternative therapies, although evidence remains limited.
When medicine no longer helps — considering cryopreservation
For patients facing end-stage ALS with no curative options, some choose to explore cryopreservation as a future-facing alternative.
At Tomorrow.bio, we offer:
- Stabilization and cryoprotectant perfusion immediately after legal death
- Vitrification to prevent ice damage
- Long-term preservation in liquid nitrogen
- A secure facility designed for decades of safe storage
Cryopreservation does not promise revival, but it offers a way to preserve identity and structure in hopes that future science may one day offer a second chance.
If you’d like to learn more, schedule a consultation.
You are more than your prognosis
ALS is a difficult diagnosis — but life doesn’t stop at the moment of diagnosis. In fact, for many, it marks a shift in how they live, love, and connect.
You are still here. You still matter. And how you face this journey can be filled with presence, care, and — if you choose — hope for what may lie beyond today’s medicine.
About Tomorrow.bio
At Tomorrow.bio, we are dedicated to advancing the science of cryopreservation with the goal of giving people and pets a second chance at life. As Europe’s leading cryopreservation provider, we focus on rapid, high-quality standby, stabilization, and storage of terminal patients — preserving them until future medical technologies may allow revival and treatment.
Our mission is to make cryopreservation a reliable and accessible option for everyone. We believe that no life — human or animal — should end because current medical capabilities fall short.
📧 Contact us at: hello@tomorrow.bio
🌐 Visit our website: www.tomorrow.bio
🤝 Schedule a consultation: Book a call
