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Tagged: ALS, ALS caregivers, ALS research, coping skills
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What were the highlights of your summer?
Posted by Amanda on August 21, 2025 at 8:49 pmSummer for me is my time to travel, reconnect with family and friends, and check things off my to-do and bucket lists!
Did you check anything off your bucket list this summer? Did you go on any vacations or visit friends and family? What are your highlights from this summer?
boj replied 1 week, 1 day ago 2 Members · 2 Replies -
2 Replies
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I’m fortunate that I am still working full-time although I’m typically exhausted after work. I work for the school system and have part of the summer off. This summer I wanted to make the most out of my time. I know that we never know when we may lose an ability. I shared my concerns with my closest family and friends. My sister spends about 3 weeks each summer with me in Florida. We went every where we could! We love exploring and checking out beaches. We went to Nokomis, Fort Myers Beach, Clearwater, and Tarpon Springs. Then my best friend and I spend a week in Key West. It was glorious! She has some serious health issues as well so we both enjoyed having a week with no agenda. We slept in, and wandered around when we felt like it. My QALSody treatments are working fabulously and I was even able to dance one dance for the first time in years. Another friend held my hands so that I could keep my balance. It was one song, one beautiful minute and a half, and I felt like I had conquered the world! After that I sat at the bar and sipped on a pina colda…and we ubered back to our room. I wish all of us had a QALSody-like treatment in our future — our very near future. I know that every activity I do is a gift and I treasure each moment, for all of us.
Amanda
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Beach trip to Duck NC. In September. We met 11 old friends and stayed in a house that had a lovely 3 floor elevator. ( although only 2 hand rails for 8 bathrooms ) our lovely house had both a hot tub and a pool neither of which were accessible. So you have to ask .Several companies have beach wheelchairs and umbrellas which they will deliver and pick up. The Hatteras Fire Department also has beach chairs to loan. It can be tricky to find boardwalk access to the beach but most communities have them if you search. All the restaurants we went in were accessible. Not so much the stores. Also there are several public access boardwalks. There is a sound side board walk in the town of Duck fully accessible. We took two “ walks” in the scooter on sound side trails in Nags Head/ Manteo. Very beautiful. Saw Herons , egrets, turtles, and raccoons.
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