Viewing 6 reply threads
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    • #20064
      Amanda
      Keymaster

      We’ve had a crazy year, and for pALS it’s complicated things even more. Have you had a chance to get out this summer and see people and do things? What has been the highlights of your summer so far?

    • #20065
      Kathy stitz
      Participant

      I have been going to so many doctors because of having ALS that I haven’t had much time to do anything else.  I also recently went to the Emergency Room and then was in the hospital for three days so I haven’t been having a good summer.  I hope other pALS have had a better summer than I have had.  It would lift my spirits to hear from other pALS about the things they have been doing this summer or places that they visited.

      • #20113
        Amanda
        Keymaster

        @Kathy, I am so sorry to hear about your trip to the ER and being hospitalized. I hope others chime in and share their summer stories too!

        As for me, I’ve had company all summer! It has been wonderful, but tiring as well. My nephew who just graduated college even came for a week. I was so excited to see him.

    • #20091
      Mary Tiknis
      Participant

      I got to go to the beach with my children and grandchildren the lifeguards rolled me on the beach with the sand wheelchair I also got to go to Summerfest three times which is a live band many people from my town and lots of food trucks and it ends up with fireworksI am very grateful that my children take me

      • #20114
        Amanda
        Keymaster

        Mary that sounds fantastic! The beach is my favorite place. I feel so calm and at peace just listening to the waves and soaking up the sun! I’m glad you had the chance to spend time with your family in such a nice environment.

    • #20094
      Kathy stitz
      Participant

      That’s wonderful Mary! Thanks so much for sharing.

    • #20095
      Marianne Opilla
      Participant

      My husband and 2 Golden Retrievers took an RV trip from Virginia to Colorado and met up with my son and his family.  We took a helicopter tour in Durango and a Hummer tour in Moab.  I choked at the western dinner/show and needed Heimlich, but the music was good.  My DIL took me to the spa for massage.. It made me hurt.  We bought marijuana in Colorado but it doesnt agree with me. My husband is a saint to have done this for me because I am literally useless.  We got home and sold the RV…LOL.

      Then we had family and friends at our house on the lake for 3 weeks.  Lots of kids and chaos. Fireworks (my favorie thing) for 3 nights.  I got in the kayak once but couldn’t paddle it.  I tried a float, can’t support myself for very long.

      That’s my summer so far with ALS. Can’t say I’m not trying!! Brave New World for sure.

      • #20115
        Amanda
        Keymaster

        Marianne you truly inspire me! Your never give up attitude and sense of humor are wonderful. I’m sure, as with everyone, you have challenging days. Keep us posted on any adventures as the summer continues.

    • #20110
      Vicki
      Participant

      After 15 months of waiting, I was diagnosed on May 11th with Sporatic Als.  It’s been up and down for me but yesterday I finally got my camera out and had a peaceful early morning visit with the wild birds that come to our feeders.  I’ve been a bird watcher for years and met lots of nice people that enjoy their cameras and the birds.  To me, it’s a way to share with others how these  wonderful tiny creatures can take our minds off of the day to day pressures of having a terminal disease.  I am no longer able to walk but just sitting out on our porch, or at a window (I do photograph through the window sometimes), watching the birds try to find a free spot at the seed or sugar water feeders, grabbing worms from the wet grass or bathing in the bird bath can be much more relaxing than sitting in front of a television all day.  Later I will search my images from the camera and hopefully find one good picture to share with my friends and neighbors.  You’d be amazed at how many interesting stories that you could attach to those photos.

       

       

       

       

       

       

       

       

       

       

       

       

      • #20116
        Amanda
        Keymaster

        Wow Vicki, that is impressive and sounds like great coping skill.

    • #20111
      Kathy stitz
      Participant

      It seems like you have been doing a lot this summer, Marianne.  Having ALS definitely makes our lives more difficult in many ways but that’s great that you were able to travel to Colorado and have family and friends over as well!

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