7 Things to Keep in Mind If a Loved One Has ALS


An amyotrophic lateral sclerosis (ALS) diagnosis can be devastating for both the patient and their family. If a loved one has recently been diagnosed with ALS, they’ll need your support now more than ever. Remember to be understanding and patient.

We’ve put together a list of things to consider if a someone close to you has been diagnosed with ALS, with help from lifehack.com.

MORE: How to Live Your Best Life With a Chronic Illness

It’s not an immediate death sentence. 
While many ALS patients die within three to five years, others live for 10 or 15 years after diagnosis. Stephen Hawking is still famously alive at the age of 75 after being diagnosed as a college student. Focus on making memories and cherishing the time you have together.

They’ll need help. 
The amount of assistance they need will continue to grow as the disease progresses, but it’s essential that you allow your loved one to keep as much of their independence as possible, for as long as possible. Ask if they need help rather than assume they can’t do things.

They may experience uncontrolled bouts of laughter or crying. 
This is a phenomenon of ALS called pseudobulbar affect which is possibly caused by an interruption of brain signals in the upper neurons. It’s not connected to mood, so they are not laughing or crying because they are happy or sad. Pseudobulbar affect can be treated with medication.

MORE: TV Presenter Talks About Her Father’s Journey With Motor Neuron Disease

They are not affected mentally. 
ALS very rarely affects a person’s intellect. Over time they’ll lose the ability to speak but their cognitive functions remain untouched.

They’re not deaf. 
There’s no need to shout. Their hearing will be as good as it was before they starting experiencing symptoms of the disease. Although communication will pose problems, they will be able to process what you’re saying without you talking extra slowly or loudly.

They can be sexual active. 
ALS patients can be sexually active, particularly in the earlier stages of the disease. As the disease progresses, sexual activity may present problems due to muscle wastage, fatigue, respiratory problems, joint pain and side effects of medication (source: Massachusetts General Hospital).

They’re still the same person. 
ALS may have changed their bodies and how it functions, but it hasn’t changed their personalities. They’ll enjoy doing the same things, laughing at the same jokes, they’ll like and dislike the same foods. They are the same person they always were.

MORE: A Song Inspired by ALS: ‘The Last Poem’

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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  1. Santa Smith says:

    Why are you painting a rosy picture of ALS? This disease is insidious. ALS stole everything from my husband in less than two years: his voice, his laughter, his job, his ability to eat, his personality, his cognitive ability, his independence, his hope, and his life. He was NOT the same person that he always was.
    People need to know the truth about ALS, not be told a fairy tale.
    We need a cure now!

  2. earle cooper shamblen says:

    My wife passed with ALS in May 2017. She had the disease approx. 2 years. The only real treatment she had was a diphram stimulator placed in May 2016. She did not have any respiratory problems until she contacted pneumonia about 3 weeks before she passed. She could not swallow and had a feeding tube . She had radiation and botox treatments to slow secreactions. My wife had a dnr order. She had early demention and really wanted to leave this place. Terrible disease and we will continue to give to try and find a cure.

  3. Jason L Martin says:

    My sister was misdiagnosed a year ago. Today April 18 2019 we received the worse new we could not even imagine. She texted me at 11:38 am saying she went to a new doctor and he confirmed that she has ALS. She has been treated for something else for the last year now we have lost a year for the correct treatment. Can anyone on here that have or had family members with ALS tell me what I should expect. I know the out come of the disease and the general things you can read online.

  4. Barbara Johnson says:

    The only silver lining for my mother is that she wasn’t affected by ALS until she was in her mid-80’s. She was a very independent, strong, woman which makes it so very hard to watch her deteriorate and know that she is aware of her prognosis. Her diagnosis of ALS was determined in March 2019. I’m not sure when to say it actually started, though. She began having balance issues in December of 2017 and had a few falls, eventually falling and breaking her hip in January of 2018. It took a year from that point to narrow down her symptoms to having ALS. The doctor gave her two years. She seems to be deteriorating rapidly, maybe because of her age. So, I don’t really have an idea of how long she will remain alive.

    • Jody says:

      I was diagnosed with als 7/8/19. I am no longer able to work due to it being to stressful for me. So far I have lost the dexterity in my left hand. I am left handed so many things I have trouble with. I hope I can survive for years to come

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