The Importance of Awareness: What ALS Patients and Caregivers Need to Know
Receiving your own or a loved one’s ALS diagnosis can be a frightening and overwhelming experience, but there are steps you can take to reduce your anxiety and discomfort.
Learning more about ALS, finding the right support system, and understanding your treatment options can empower you to be an active participant in managing your disease or caring for a loved one who has ALS.
What is ALS, and What Are the Symptoms?
Amyotrophic lateral sclerosis (ALS) is a terminal disease affecting the brain and spinal cord. A progressive neurodegenerative disease, ALS attacks the nerve cells responsible for muscle control. Over time, the motor neurons that send signals from the brain to the muscles die, and muscle control deteriorates.
As ALS progresses, patients progressively lose the ability to do the following:
- Hold objects
ALS paralysis requires a ventilator and constant monitoring to maintain oxygen levels, avoid infections, and prevent choking. Round-the-clock care is a costly means of survival, and many people choose not to pursue it.
The average prognosis for ALS is two to five years, though the disease can fatally progress in a matter of months. On the other hand, some patients far exceed the average ALS life expectancy. For example, Stephen Hawking lived with ALS for 55 years.
Who Can Get ALS?
Although ALS typically develops in people between 40 and 70 years old, it can affect anyone, including people as young as 20. That's one of the reasons why people of all demographics must familiarize themselves with this deadly disease.
“ALS Awareness is important to me because it's a devastating fatal disease with no cure, and it can strike when you least expect it,” explained Jordon Rahmil, Public Relations Director at Curaleaf.
“It happens to young people, older people, and everyone in between. My father passed away as a result of ALS, and for him, it was a very rapid decline after he was diagnosed."
According to the ALS Association:
- Someone is diagnosed with or passes away from ALS every 90 minutes.
- Roughly 90 percent of ALS patients have no family history of the disease.
- The average age of diagnosis is 55 years old.
- Men are 20 percent more likely to get ALS than women.
These numbers are suggestive – they fail to capture the experience of living with ALS or the disease’s indiscriminate nature.
In the words of journalist and ALS patient Angelina Fanous, “ALS can strike anyone. Of any race or gender. At any time.”
Fanous was diagnosed with ALS before the age of 30. Even though she could see that she had ALS symptoms by the time her doctor diagnosed her, she was incredulous.
“ALS is an old white man’s disease, and I simply didn’t fit the demographic,” Fanous said.
“So, I went to another doctor and another one, and a third one after that, because I was convinced someone made a dire mistake.”
How to Support a Loved One with ALS
ALS strips people of their power. The toll is physically, spiritually, and emotionally painful for patients to endure. The first step you can take toward supporting your loved ones is trying to understand the difficulty they’re facing.
“Each person is entitled to making their own decisions about how they live with ALS,” Rahmil shared.
Although the deterioration of your loved one’s body may accelerate, respect their intellectual autonomy. Retaining decision-making power is a source of strength and hope for ALS patients, so heed their thoughts as much as is reasonable and possible.
“It's important to know that while the body can rapidly decline, ALS patients do not typically lose any of their cognitive abilities. That means that they're the same person you've always known. They're just in a differently functioning body.”
If you know someone who has ALS or if you're a caregiver yourself, consider the following approaches to tending to your loved one and yourself:
Stay Informed About ALS
If you are a caregiver, don't be afraid to ask doctors and nurses questions about the disease and the treatment plans they recommend. Seek out educational resources online, so you understand what's happening to your loved one.
Although understanding the disease cannot stop its progression, it can help you anticipate what’s to come and ease feelings of powerlessness.
Build a Support Network
The more people you have in your corner, the better you can help your loved one live with ALS. Because ALS is a progressive disease, your role as a caregiver will become increasingly involved.
Respect your physical and emotional limits and recruit the help of family members, friends, and professionals whenever possible.
Practice Daily Self-Care
If you’re a caretaker or loved one of an ALS patient, ALS is impacting you, too. Supporting someone with a neurodegenerative disease as aggressive and debilitating as ALS requires deep emotional resilience.
Adequate sleep, nourishing meals, regular exercise, safe friendships, and recreational time will keep stress low and energy levels high.
Is There a Place for Cannabis in Your ALS Health Regimen?
There is no cure for ALS. Treatment involves managing symptoms through conventional therapies, such as:
- FDA-approved prescription drugs
- Physical and occupational therapy
- Nutritional interventions
- Technology-assisted communication
- Ventilation support
But should cannabis have a place on that list?
Research on the use of cannabis for the symptoms of ALS is limited. However, cannabis and cannabinoids demonstrate efficacy worth continued investigation.
One of the most painful ALS symptoms is spasticity, or debilitating muscle stiffness, caused by violent, involuntary muscle contractions.
More research is needed, but patients who live in states with medical marijuana programs can consult their doctors about using cannabis for chronic pain.
“At the end of my dad's life, he suddenly became interested in how cannabis could be used for anxiety and pain,” Rahmil said.
“He received a doctor's recommendation in California and came to me asking for help accessing cannabis. He did not want to smoke, but he did want a specific type of edible that had a soft consistency.”
As ALS progresses, it becomes increasingly difficult for patients to breathe and eat. Although medical cannabis was technically available in California to Rahmil’s father, a lack of ALS-specific cannabis products prevented him from finding something that fit his requirements.
“I'm sad to say that I couldn't find the type of cannabis product that he needed at the time, and he died within a week or two after we tried to locate the product. This story has always been a driver in my advocacy for cannabis because I believe that access to a variety of products and form factors is critical.”