My partner passed away from ALS this morning.
December 15, 2024 at 6:43 PM
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
#palmsprings #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease
April 16, 2025 at 5:33 AM
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
#palmsprings #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease
I just noticed something in a photo right before my Mom died…. Our ornery cat was there.
December 5, 2025 at 3:13 AM
I just noticed something in a photo right before my Mom died…. Our ornery cat was there.
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
Mark has not been able to pet the dogs or walk them for 3+ years.
🌴🙏🏼
#grateful #palmsprings #ALSAwareness #EndALS #ALS #ALSSucks
April 13, 2025 at 1:55 AM
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
Mark has not been able to pet the dogs or walk them for 3+ years.
🌴🙏🏼
#grateful #palmsprings #ALSAwareness #EndALS #ALS #ALSSucks
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
#BrilliantMinds #ALSSucks
November 25, 2025 at 12:30 PM
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
#BrilliantMinds #ALSSucks
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
We took this picture on our 17th anniversary. He died on our 18th, Jul 1 2024
#ALSSucks
February 21, 2025 at 8:03 PM
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
We took this picture on our 17th anniversary. He died on our 18th, Jul 1 2024
#ALSSucks
🌴 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 🌴
🌴 #alsnetwork #ALSawareness #EndALS #ALS #livingwithALS #MyALSJourney #alsfighter #ALSsucks 🌴
November 24, 2025 at 6:55 PM
🌴 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 🌴
🌴 #alsnetwork #ALSawareness #EndALS #ALS #livingwithALS #MyALSJourney #alsfighter #ALSsucks 🌴
🎄🌴 “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
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
November 24, 2025 at 6:46 PM
🎄🌴 “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
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
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
#alsnetwork #ALSawareness #EndALS #ALS #alswarrior #livingwithALS #MyALSJourney #alsfighter #ALSsucks
November 24, 2025 at 6:40 PM
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
#alsnetwork #ALSawareness #EndALS #ALS #alswarrior #livingwithALS #MyALSJourney #alsfighter #ALSsucks
💙 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
#alsnetwork #EndALS #ALS #alswarrior #livingwithALS #ALSsucks
November 10, 2025 at 7:54 PM
💙 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
#alsnetwork #EndALS #ALS #alswarrior #livingwithALS #ALSsucks
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
#ALSNetwork #ALS #ALSSucks #LivingWithALS #ALSResearch #NeverGiveUp #WhateverItTakes #MyALSJourney
October 7, 2025 at 1:56 AM
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
#ALSNetwork #ALS #ALSSucks #LivingWithALS #ALSResearch #NeverGiveUp #WhateverItTakes #MyALSJourney
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
#ALSNetwork #EndALS #ALS #ALSSucks #LivingWithALS #BeatALS #MyALSJourney
September 27, 2025 at 8:47 PM
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
#ALSNetwork #EndALS #ALS #ALSSucks #LivingWithALS #BeatALS #MyALSJourney
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
#ALSawareness #ALSsucks #livingwithALS
#alswarrior #MyALSJourney
September 16, 2025 at 9:41 PM
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
#ALSawareness #ALSsucks #livingwithALS
#alswarrior #MyALSJourney
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
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
September 9, 2025 at 8:32 PM
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
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
🌈 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
#palmsprings #ALSNetwork #ALSAwareness #EndALS #ALS #ALSSucks #LouGehrigsDisease #LivingWithALS
September 1, 2025 at 12:46 AM
🌈 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
#palmsprings #ALSNetwork #ALSAwareness #EndALS #ALS #ALSSucks #LouGehrigsDisease #LivingWithALS
#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
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
August 1, 2025 at 6:03 PM
#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
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
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)
Many thanks to our DME supplier @unicare_health
#palmsprings #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease. (ice bucket challenge)
May 1, 2025 at 1:52 AM
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)
Many thanks to our DME supplier @unicare_health
#palmsprings #ALSawareness #EndALS #ALS #ALSsucks #lougehrigsdisease. (ice bucket challenge)
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
#ALSAwareness #EndALS #ALS #ALSSucks #LouGehrigsDisease
May 1, 2025 at 1:02 AM
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
#ALSAwareness #EndALS #ALS #ALSSucks #LouGehrigsDisease
🔁 @JeffPassan retweeted
@PMST4ALS If these guys are setting the tone, you might want to match it. Get your END ALS shirt at the link in our bio and wear it on Lou Gehrig day. Every shirt helps shine a light on ALS awareness and directly supports those living with the disease. #ENDALS #ALSSUCKS
@PMST4ALS If these guys are setting the tone, you might want to match it. Get your END ALS shirt at the link in our bio and wear it on Lou Gehrig day. Every shirt helps shine a light on ALS awareness and directly supports those living with the disease. #ENDALS #ALSSUCKS
Tweet
🔁 @JeffPassan retweeted
@PMST4ALS If these guys are setting the tone, you might want to match it. Get your END ALS shirt at the link in our bio and wear it on Lou Gehrig day. Every shirt helps shine a light on ALS awareness and directly supports those living with the disease. #ENDALS #ALSSUCKS
twitter.com
May 18, 2026 at 2:17 PM
🔁 @JeffPassan retweeted
@PMST4ALS If these guys are setting the tone, you might want to match it. Get your END ALS shirt at the link in our bio and wear it on Lou Gehrig day. Every shirt helps shine a light on ALS awareness and directly supports those living with the disease. #ENDALS #ALSSUCKS
@PMST4ALS If these guys are setting the tone, you might want to match it. Get your END ALS shirt at the link in our bio and wear it on Lou Gehrig day. Every shirt helps shine a light on ALS awareness and directly supports those living with the disease. #ENDALS #ALSSUCKS
#ENDALS #ALSSUCKS https://t.co/Ne9djChDCT
May 15, 2026 at 6:19 PM
#ENDALS #ALSSUCKS https://t.co/Ne9djChDCT