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Newly diagnosed
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!
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2 Replies
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This is very helpful Amanda!
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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
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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