Eric Dane playing a firefighter with ALS in Brilliant Minds was absolutely heartbreaking and poignant. Bravo Eric for continuing to raise awareness and still being McSteamy!
#BrilliantMinds #ALSSucks
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#ALSSucks
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🌴 A doctor day for Mark. We left with smiles, came home with a few aches, but got treated to mountains dusted in snow on the ride. Even the hard days give us moments worth holding onto. 🌴
🌴 #alsnetwork #ALSawareness #EndALS #ALS #livingwithALS #MyALSJourney #alsfighter #ALSsucks 🌴
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🎄🌴 “If you build it, they will come…”
Turns out all we had to build was the Christmas tree in November — and "jingle bells", we were blessed with Eric, Bill, and Spencer the fluffy one - they came ! 🎄🌴
#alsnetwork #ALSawareness #EndALS #livingwithALS #MyALSJourney #alsfighter #ALSsucks
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ALS has taught us to celebrate now, not later. These moments—decorating, laughing, being together—mean everything while Mark can fully share them. Choosing joy early this year. ✨💙🌲
#alsnetwork #ALSawareness #EndALS #ALS #alswarrior #livingwithALS #MyALSJourney #alsfighter #ALSsucks
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💙 Friends forged through the fire of ALS. Some are cALS, some have lost their pALS — all share strength, compassion, and understanding. 💙 Thank you for visiting us in Palm Springs — your friendship means more than words can say. 💙
#alsnetwork #EndALS #ALS #alswarrior #livingwithALS #ALSsucks
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Movie night with Wilson 🎬🍿 Popcorn, good laughs, and stand-up comedy to close it out. Thanks, Wilson — always great having you around (and hey, it’s nice to finally not be the tallest in the room 😄).
#ALSNetwork #ALS #ALSSucks #LivingWithALS #ALSResearch #NeverGiveUp #WhateverItTakes #MyALSJourney
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Italian Night 🇮🇹🍝 got pushed back while Mark rested, but Tuesday’s visit made up for it. David & Steve brought spaghetti & meatballs with fresh parmesan — so good! Grateful for the stories, laughter & company. ❤️
#ALSNetwork #EndALS #ALS #ALSSucks #LivingWithALS #BeatALS #MyALSJourney
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From Mrs. Roper kaftans 🌺 to St. Pat's Day 🍀 to July 4th 🎆… themed dinners are tradition. Hawaiian Night brought Aloha vibes with haystacks, pineapple cake + mango sorbet. Mahalo to David & Steve for the home-cooked fun! 🌈🥂🌴
#ALSawareness #ALSsucks #livingwithALS
#alswarrior #MyALSJourney
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David + Steve = fun filled evening 🌟
Steve's fresh haircut ✂️, stuffed shells 🍝 (tiny bites for Mark 💛), dogs bouncing 🐾, and tiramisu to finish 🍰.
Good food. Good friends. Good times. #palmsprings #alsjourney #alsnetwork #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease #livingwithALS
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🌈 After 6 hours of ALS Clinic Day in Loma Linda, tough talks & vital care, the drive home gave us a rainbow stretching into Palm Springs. Proof that even in the hardest battles, hope still shows up. 💙
#palmsprings #ALSNetwork #ALSAwareness #EndALS #ALS #ALSSucks #LouGehrigsDisease #LivingWithALS
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#breakfast #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease
Breakfast for champions... (from right to left):
3 bolus syringes of nutrition (through the peg tube)
2 bolus syringes of coffee (through the peg tube)
1 bolus syringe to flush and keep the peg tube clean
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The warmer spring weather in Palm Springs allowed the caregiver and I to get Mark outside on the patio for some sun and fresh air.
Many thanks to our DME supplier @unicare_health
#palmsprings #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease. (ice bucket challenge)
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Mark's dinner. I have learned to cook and Mark doesn't complain about the taste, spice level or ingredients . Mark's meal today is sponsored by Jevity. Recommended by ALS Nutritionist & dietician.
#ALSAwareness #EndALS #ALS #ALSSucks #LouGehrigsDisease
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Dinner at John's Restaurant with Eric, Bill, and Stan. (thank you for your help and for joining us, Stan. ).
#palmsprings #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease
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Each morning she kisses Mark once he wakes to start the day. She started this routine when Mark could no longer walk . (December 2023).
Mark has not been able to pet the dogs or walk them for 3+ years.
🌴🙏🏼
#grateful #palmsprings #ALSAwareness #EndALS #ALS #ALSSucks
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Old and grey and still in love.. Though he has now gone beyond the sea, somewhere he’s waiting for me.
We took this picture on our 17th anniversary. He died on our 18th, Jul 1 2024
#ALSSucks
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December 7, 1986,
38 years ago today. Today is my first wedding anniversary without Michael. #iamals #alssucks #widow
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Thinking of you and your family. #alssucks
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