🌴 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 🌴
🎄🌴 “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
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
I’m grateful to the brilliant Israeli scientists working to cure ALS. They deserve global support. #MyALSJourney
www.timesofisrael.com/in-world-fir...
🌴 Mark had a mobile nail specialist visit today (huge thanks to David & Steve + Tom 💙).
🌴 While Mark got pampered, Wes & David enjoyed nachos, ginger ale, and a Sunday Funday drink. Perfect weather + people-watching = a great afternoon! 🌴 #Gratitude #MyALSJourney #alsnetwork
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
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
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
Another day, another airport. Flying on Delta Air Lines from Austin Bergstrom International Airport - ABIA - AUS to Boston Logan International Airport for my bi-annual appointments with the ALS and stroke neurology specialists at Massachusetts General Hospital. #myalsjourney
My new fabulous hematologist, Dr Athira Unnikrishnan, is managing me for Indolent Mastocytosis. She asked me today when was the last time I was normal. I just laughed. I don’t think I’ve ever been “normal”. Am I wrong? #myalsjourney #myvedsjourney #mcas #mcad #mastocytosis #medicalmystery
Genetic counseling with Genome Medical resulted in their recommendation for medically necessary GenomeSeqDx - Proband testing from GeneDx. It should take about a month for results. #rareyeteverywhere #myalsjourney #myvedsjourney #medicalmystery
My 63rd birthday is this Saturday and my first present arrived today from my big sister Debbie. Since we both have cognitive impairment, she sent me an InnoGear Aromatherapy Diffuser with ten essential oil scents for a 226% cognitive improvement. #medicalmystery #myalsjourney #myvedsjourney
Thanks to my friends at Austin Area ALS Support and Information and our Governor for declaring May 2025 Texas ALS Awareness Month to join our national efforts. Some of my favorite organizations if you’d like to help:
www.als.org
teamgleason.org
ccals.org
#ALSawareness #MyALSJourney
Thank you so much to Compassionate Care ALS Lighthouse Project for the invaluable access to one of the world's leading doctors in ALS for the conversation with Dr Richard Bedlack from Duke University. Upcoming webinar End the Legacy May 14 2pm EST. Very fascinating. #medicalmystery #MyALSJourney
I have an injury to my sagittal band on my left hand that is causing tendon subluxation. That is why my pinky was snapping instead of moving smoothly up and down. I am now in a splint and hopefully that will allow the sagittal band to heal without any surgery necessary. #myalsjourney #MedicalMystery
