Steve Rice retweetledi
Day 4
What advice would you give to the family of someone who has been recently diagnosed with ALS?
First and foremost, just be present. Not just for the fun and events but in the small, quiet moments when they need it most. For the long haul. Not just at the beginning of their battle.
Don’t treat them any differently. They are still the same person who was just dealt a really shitty hand. Laugh often and by all means cry when you/they need to. Personally, I didn’t and still don’t find it helpful to feel sorry for myself or allow others to feel sorry for me.
I think it’s only natural for the majority of people who are battling ALS to mentally struggle with feeling like a burden. Trust me, no one wants to ask someone else for every tiny little thing we all take for granted on a daily basis. Have patience and when you don’t tap out and allow someone else to help them.
Know your loved one’s wishes for their future. You have to stay ahead of the disease or it’ll run you over like a freight train. Do they want a feeding tube? When the time comes, do they want a trach? Not easy conversations but necessary before communicating becomes difficult. Honor their wishes not your own. It’s their fight.
I could go on and on but lastly, and most important, make sure they know they are loved and they’re not alone. #ALS #ALSawareness #SarahsSoldiers #Family #StrongerTogether
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