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    • #23892

        When I went to the ALS clinic, the social worker asked “What gives you joy?”.  I thought about it and answered, “my grandchildren “. They do. But now I can’t play with them like I used to .like being outdoors riding bikes , writing on the driveway with chalk,  running or walking after the 2 year old. After thinking about it,  next time she asks, I would say “nothing”. I used to enjoy cooking and baking. In spring, I enjoyed cleaning up the flowers and shrubs and mulching. I enjoyed having my windows look clean like they weren’t there and not dirty. I liked my house clean. Now I just shake my head. I liked some of my clothes ironed. I miss bumming around all day; maybe stopping at 4-5 places to shop. Bumming around with my friend…Yesterday it took about 5 min. Just to peel a cucumber. Now I wake up and watch tv or use my ipad. It’s hard to depend on someone when you did everything yourself. Yes, I would answer with this ALS nothing gives me joy. Sorry but thanks for allowing me to rant.

      • #23896
        Chris King

          Understand completely and wish I had an answer or ideas for you and me both but I don’t yet but I’m not giving up on possibilities! Mainly I think some type of morning assessment might help just to stimulate my brain into a better sense of living with this stuff (not my usual description)There has to be something more joyful to our days hopefully through these forums we’ll get some answers!

        • #23901
          Dagmar Munn

            What helps me find joy are these words…

            “Sure ALS is a challenge. You can fight it and try to live life as it once was, or pivot, and learn to live with it.”

          • #23921
            Martha Whitaker

              I  would say my grandchildren bring me great joy. No, I  can’t play with them like I used to or read to them,  but I can still  give hugs, have them in my lap, and watch  them play. I used to hike, but now hikes are on paved  paths in a wheelchair,  but I can still get outside and enjoy nature,  trees,  flowers, birds, and fresh air. I can still listen to music, attend  church  in person or online. I can enjoy performances in person or online.  Other things that  bring joy; reading a good book, gentle  stretches, chocolate, phone calls from  family and friends, getting cards or sending them. I like  to  make  my husband  laugh.  I try to find  3 things to  be grateful for each day. I think we adapt to  the changes  and look for things we can still do even if they are small.

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