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: Understanding the progression of ALS.

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: Four tips for taking care of caregivers. 

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: How to support someone diagnosed with a terminal illness.

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.

4 comments

  1. Dorothy Cochran Smith says:

    “Milo’s Tale”:
    For those of you that don’t know who Milo is let me fill you in… Milo was my mom’s emotional support dog. He was a God-send. A true angel. This is no exaggeration. From the day we got him, there was an instant bond between my mother and him. I’ve always heard about how dogs can sense illness or others needs. However, to see it was truly incredible. Many of you were able to see a small snapshot of Milo in action. Most people would just be amazed to see him sit in my mom’s lap nearly 24/7 and stay quiet. There was so much more beyond that. He truly took care of my mother. If something was wrong he’d make sure to get me, if she was sad or upset he would be extra snuggly or lick her. He provided a comfort that no human ever could. Milo never had any real training. From the day we got him, he settled into his “emotional support” role to my mom (his mom ?).
    Milo’s job was never ending. When we were in public he was officially “on duty” though. He was super aware and protective of my mom then. Not in an aggressive way, simply in a loving way. Apart from keeping her happy, Milo served many other purposes.
    He was a distraction when we were in public. As you can imagine, my mom can draw a lot of attention. Understandably so. She’s in a big wheelchair, has a feeding tube, a trach tube coming out of her neck attached to a ventilator, and a computer in front of her she uses to speak. She also had a little dog in her lap. Guess what most people looked at? Milo! He began a lot of conversations by people wanting to see him. He spread a lot of awareness about ALS and people with disabilities in this small way. It was this act that inspired my mother to write a children’s book. “Milo’s Tale” is written to bring much needed awareness about not only ALS but disabilities in general. My mother witnessed, first hand, how people of all ages do not know how to interact and react to people who have disabilities or look/speak/move/eat differently in any way than they’re used to. This book is a work of love that’s taken several years to complete. Unfortunately Milo passed away at the age of 4, very unexpectedly, right before it was set to be published. So now this book serves the unintended purpose of helping us carry on Milo’s legacy. As well as educate children and adults about ALS and how to treat other who appear “different” to them.

    The books can be purchased through us by contacting me at milostalebook@gmail.com or going to milostale.com for $18 (picked up)/$21 (shipped). This would be a pre-order. Allow 3-4 weeks (at most) for the books to be ready to be picked up/delivered. They can also be purchased off Amazon for $22.95. In all honesty we make a little more money to go towards medical bills if you purchase them from us.

    Book synopsis:
    “Oh boy, oh boy, oh boy! ” says Milo, an adorable seven-pound emotional support dog. The runt, and the last of the litter, Milo takes on a huge job. He becomes an around-the-clock best friend and support dog to his new “Mom”. Mom has ALS (Lou Gehrig’s Disease) and cannot move at all. Tiny Milo tells the tale and gently explains the effects of ALS in words children can understand. Milo reminds us that what matters most is not what’s on the outside, but the inside of people we meet.

  2. Leanne Repetto says:

    It is EXTREMELY important to stop telling newly diagnosed families that there are no cognitive changes in ALS. As researchers learn more and more about the relationship between ALS and FTD (frontotemporal dementia) they keep revising the numbers upward as to how many ALS patients will experience at least some FTD symptoms. My family was blindsided by these symptoms, as are so many others, because we constantly read that ALS is physical only. Most frequently it is, in fact, only physical — but often (not “rarely”) there are changes to personality, communication, and reasoning that are incredibly confusing and distressing if the only information you’ve ever had about ALS leaves out the possibility of ALS-FTD.

  3. Family members who have ALS should consider looking into Deanna Protocol for ALS. The Protocol is research based with some interesting results. Even though there is not a cure for this terrible disease, the Protocol serves as a means to slow its progression.
    I have used the recommended methods to slow the disease down for one of my patients.
    Best of luck,
    Dr. Paul Dabney

Leave a Comment

Your email address will not be published. Required fields are marked *