6 Coping Strategies to Help You Process an ALS Diagnosis

 

Being diagnosed with amyotrophic lateral sclerosis (ALS) can be devastating for patients and their families and friends, but there are ways to move forward. We’ve put together a list of coping strategies to help you get through the first few weeks with help from the Mayo Clinic and alswindsor.ca.

Allow time and space to grieve
Everyone will require time to absorb information about the disease and to come to terms with the reality of ALS. You may take longer than others, so allow time to process the diagnosis. It’s OK to feel angry, sad, depressed and to grieve and mourn.

Stay positive 
Although ALS is a fatal disease and doctors usually give patients a life expectancy of between three and five years post-diagnosis, many ALS patients live 10 years or longer. In addition, science and medicine are constantly moving forward, coming up with new treatments, drugs, and equipment which can make life more comfortable and possibly extend your life.

Look past physical changes
Yes ALS will change your body and rob you of your mobility but you are still the same person. It will not rob you of your mind, your thoughts, your soul and your love for others. You will still be you!

MORE: Find out how assistive technology is helping ALS patients get the most out of life

Join a support group
Joining an online or local support group can help immensely with your ALS journey. Other patients will be able to offer advice and relate to what you’re going through. Support for family members is also very helpful.

Learn as much as you can about ALS
Learning as much as you can about how ALS progresses will help you plan and make decisions about your future care. Speak to your health care team and your family about the available options and what you ultimately want further down the line.

Be open and honest
It’s often difficult for children to understand the concept of ALS, but having an open and honest conversation about ALS and how the disease is going to affect the patient is important so they feel included and aware of the situation.

MORE: Did you know that technology can improve communication for ALS patients?

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 other 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.

3 comments

  1. Mike L says:

    One thing I’d add is learning to live in, and appreciate the moment. With something like cancer (not to belittle that, but I am a 25 year survivor of that too), it’s easier to focus on hope, the future after treatment, and “getting back to normal “. With ALS, your long range future is more in doubt…so, don’t rob what can still be positive about today, by focusing on the negative of next year.

  2. Darren says:

    I just don’t understand how someone like my mother could be diagnosed with this disease. She has the most caring and kind soul of anyone I’ve ever met (not just saying this because it’s my mother). She’s brightened every persons life she’s come in contact with.

  3. Michelle kafafi says:

    Hello. We need a cure. If you notice this disease has been around since 1880. There are treatments but they are expensive and insurance is balking at paying. I am very bitter that nothing has been done. If some of these Drs had the disease I think we would have treatments. And stem cell has got to be fine and on a great scale. One man had stem cell treatments and he regained his body. Why does no one care? This is the most horrendous disease. It is torture . I am very distressed by the ALS Association. Help. Help help

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