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 function remains 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 body and how it functions, but it hasn’t changed their personality. 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.

5 comments

  1. Donald C. Wilson says:

    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 function remains untouched.

    This statement is incorrect at best and totally wrong at worse. Studies have documented FTD (frontotemporal dementia) an increasing incidence.

    • mary says:

      Yes that is incorrect. My husband has FTD and ALS. The FTD is worse than the ALS at this time. It may be a blessing or curse. Blessing for patient as he is not aware of seriousness of the ALS but curse for the family.

  2. Richard Brenton says:

    On a recent webinar there was a presentation of a study that indicated there was a 47% occurrence of what they called a “spectral disorder”. The degree of disorder was variable. It affected the frontal lobes of the brain and therefore could affect cognitive function

  3. Donna P says:

    Yes I wish they would not always say it does not affect the mind as it very well can with FTD and people need to try to understand that especially family members and close friends who do not know how to react to that.

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