10 Tips for Patients Recently Diagnosed With ALS


Being diagnosed with amyotrophic lateral sclerosis (ALS) is a difficult and stressful time. You’ll probably feel incredibly overwhelmed in the first few days and weeks, and struggle to understand the ramifications involved. To help with the process, we’ve compiled a list of tips for patients who have recently been diagnosed with ALS based on information from the ALS Association.



You will go through a whole host of different emotions in the first few weeks, from fear to anger, denial to grief. This is completely understandable and you need to give yourself time and space to do this. Be kind to yourself, tell yourself that this is a normal response and that the darkness you’re feeling will pass and you will start to feel more positive soon.

Discover seven facts about ALS you might find interesting. 

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  1. mario hernandez says:

    thank you Wendy fot this list.
    although many of them are clinical medicine directed, there are all the milestones any Pals need to do,

    greetings from Sweden

    Mario & Karen

  2. Bill Bonney says:

    I,ve been going downhill for a couple years now and I feel abandoned by my country. If we spent a tiny fraction of our excessive military budget on research for these horrible diseases I believe we wouldn’t have to go through so much suffering and grief and loss of our loved ones. When is the last time you saw a walk or bake sale or got a phone call asking you to give money for another nuclear weapon to add to our huge stockpile?
    Be that as it may. I am stuck in a wheelchair now and my hands become weaker and less capable of doing the simplest of everyday, necessary task. However, I refuse to give up, for the time being anyway.
    I purchased a quality arm bike and am able to get a limited aerobic work out with it. I also use the stretch bands that they use in P.T. to work on arm strength and to help raise my heart rate. Although I can only go an inch or two at a time I force myself onto my walker many times in a day to try to keep my bones from deteriorating. I also put 6 lbs of weight on the front of my walker to keep me from falling as I usually fall backwards when I lose my balance. That has saved me many times. I could go on and on as to what I’ve had to do to try to get out of bed each day and function in some fashion that wants me to continue the horrible struggle that has become my life 24/7. As we all know it is the love of family and friends that makes it all worth it. I believe it is up to us, those so unfortunate to get this terrible disease, to find ways to keep going as best as we can. There is no calvary coming over the hill to save us. I also believe that there is a limit to how much suffering I will be willing to endure. I am a former Marine and to me the pain and suffering isn’t the worse of it. I have a pretty strong tolerance for that. It’s the loss of independence and dignity, and fear of becoming a burden and a vegetable, that very well may force me to choose to move on. Thanks for reading this, and for all that you do, whether you are in a similar situation as me or are a loved one. As Chief Seattle once said,”There is no death, only a change of worlds.’ God bless us all.

    Bill Bonney, Pa. USA

    • Tim Anderson says:

      God Bless you, Bill. Your strength, courage, and determination are admirable.

      A good friend of mine has just been diagnosed and I can’t let him go it alone. It’s amazing how many people go on living life as usual, however, what else is there for us to do? I guess it doesn’t mean they care about him any less, but as the definition of synergy, 2+2=5, the whole is greater than the sum of the parts.

      Thank you for sharing your story.

  3. Farazman Fathi says:

    Recently Diagnosed With ALS.
    I am suffering this ambiguous disease (ALS), some terms are used in these reports that make the disease more ambiguous.
    What means (RECENTLY), how old is recently 1 month, 2 months, 3 months, 6 months, 1 year…?
    I am a layman, please explain in simple way without filling your response with the names of Professors, Doctors, researchers and/or hospitals.

    Thank you.

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