• Posted by Amanda on August 20, 2019 at 7:49 pm

    We try to keep up with our forum members and that includes reading profiles and following along with discussions. It seems that many of our members are newly diagnosed, many within the past 12 months or less. Many other’s have loved ones that were recently diagnosed.  Knowing that pALS  and loved ones have numerous questions and each person’s experience is different, it can be difficult to find articles and information that is right for everyone. I was looking over my doctor’s (from the research) website and there is a page for their patients that have been recently diagnosed. I thought the information might be of interest to many of our ALS forum members. The website link is https://www.miami-als.org/diagnosed/  Please have a look and share your thoughts or your own resources. The more information the better!

    Dagmar replied 4 years, 9 months ago 2 Members · 2 Replies
  • 2 Replies
  • Dagmar

    Member
    August 20, 2019 at 7:54 pm

    This is very helpful Amanda!

  • Dagmar

    Member
    August 20, 2019 at 7:59 pm

    The ALSFinding a Cure® Foundation, has an eight-part video series that covers basic information about living with ALS. Here’s the link: http://www.alsfindingacure.org/content.php?page=videos

    Or, access the videos HERE

    These short films include interviews with ALS patients, their caregivers and family along with the ALS experts from Massachusetts General Hospital.

    While individual videos address the typical ALS-related topics of relationships, nutrition, mobility, hygiene, breathing and communication, I especially appreciated the inclusion of a new topic: Leaning In. This video presents the concept of being proactive about the disease; to learn, to plan, to stay true to one’s self and to embrace each stage with a positive attitude.

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