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Best ways family and friends can support your life with ALS
ALS is not only a confusing disease for those of us who have it, but it throws our well-meaning friends into a tizzy as well. Friends who truly want to show their love and support are stymied as to what to do, how to act, or what to bring.
If you are newly diagnosed, what can friends and family do or say to help you? For those who have been living with ALS for a while now, please share the ways friends and family have helped you the most.
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4 Replies
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Early on in my ALS journey, I wrote a blog post giving tips. What can you add? What are some things they can do to help?
https://alsandwellness.blogspot.com/2021/08/how-to-help-your-friends-when-they-ask.html
alsandwellness.blogspot.com
How to Help Your Friends When They Ask How to Help You
How to Help Your Friends When They Ask How to Help You
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I think we should also consider the other side of the coin – – what not to say, or do…. Like offering suggestions for a cure, saying “you don’t look sick,” sharing that they knew someone who died from ALS, or “ghost” your friendship.
https://alsandwellness.blogspot.com/2024/04/friends-dont-tell-friends-how-to-cure.html
alsandwellness.blogspot.com
Friends Don’t Tell Friends How to Cure Their Disease
ALS Dagmar Munn shares how she reacted to a person who claimed to have a "miracle cure" for ALS. Misinformation can be dangerous.
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I am still able to do much for myself so the best help I have gotten from my friends is 1) being available to help lift my wheelchair in and out of my car when we get together 2) offering an arm to help me walk on uneven sidewalks, off a curb, etc. 3) suggesting activities that I can still participate in, like going out for lunch 4) picking me up for bookclub, etc 5) fixing a plate of food at a party or meeting so I do not have to stand long or use up energy doing that 6) just keeping in touch since I don’t get out as much as I used to. I hope they all know how much I appreciate their kindnesses.
The best thing I’ve done for myself was hire a house cleaner. Keeps me from have to pester my husband or kids and puts me in a much better mood all around!
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All excellent tips, Jane!
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