We are really missing this guy today. The girls and I spent the morning watching videos of him. He was the most phenomenal dad. I am thinking of everyone who is missing their dad today and sending you lots of big hugs. #HappyFathersDay

I held Scott’s hand as he took his last breath. Felt his pulse weaken and hand turn cold. I consider it the highest honor to have been by his side while he passed. But also a curse. The trauma from it will never leave me. But I would do it all over again for him. ❤️ #EndALS

Sandra was the first person who made me feel okay for saying how excruciating caregiving for #ALS was out loud ❤️. Scott felt guilty when I expressed it, but I always reminded him I loved him and none of this was his fault. Communicating honestly was important in our journey!

Seth showed true bravery with his honesty of the good and bad of ALS. Despite his suffering he always checked on me and communicated how hard ALS was on his beloved wife too. Erika Poling you sure did him proud & I hope you know how loved you were by him and all of us too. ❤️

Happy heavenly birthday Scott. The girls and I made you a cake that tasted better than it looked and sang you a sweet song. I have a feeling you’re going to bring out some pretty amazing fireworks later tonight. We miss you every day. ❤️

sethpoling.blogspot.com/2023/06/tether… Seth Poling final blog post 💔

In the past, the Flex On ALS golf tournament raised $ for Scott’s care. This year we raised $30,000 to help 3 young families with ALS, including a 28 year old who found out she was pregnant the day after her ALS diagnosis. 💔 We continue Scott’s legacy of helping others with #ALS

A wonderful & talented ALS caregiver made this portrait of Scott & I. Incredible, right? And it came just in time for our anniversary. 6 years ago today was one of the happiest days of my life and today I’m choosing to be grateful Scott gave me such an amazing gift. ❤️ 8.26.17

Pls don’t ever tell an ALS family kids are resilient. Kids are a miracle, blessing, our future but ALS leaves deep scars on everyone, even strongest of adults, let alone our precious children. Word resilience downplays the impact ALS has on our kids & creates unfair expectations

As always, beautifully written ❤️

There are days I want to pretend ALS doesn’t exist. Post caregiving is a trauma not many understand. Nadia refuses to turn a blind eye & faces ALS head on every day, and is an asset in the ALS world. Incredible is the word I would use to describe her ❤️

Long 🧵-sorry! Went through two years of ALS and grieved daily, watched my person lose everything-rapidly. It felt like a sinking boat- I would plug one hole and another would appear. We were trapped in our house with no escape: ALS+pandemic = very bad. 1/11

Ready for prime time on Thursday at #alsmndsymp Thank you Pat Dolan Farmstrong Morris R1 Crew Alex Solleiro Poster contains insights from PLWALS and caregivers for #ALS Clinics collected thru ALS Clinic Advisor. Have you provided your input? …ospatial-hub-nonprofit.hub.arcgis.com/pages/r1-commu…

One year without you, forever to go. ❤️ #EndALS #FlexOnALS #widowhood #grief

After living with ALS for 5 1/2 years, I’ve noticed something… When you are early in your diagnosis & strongest, you are focused on treatments & efforts supporting research that may yield therapies. As you get weaker physically & mentally, your priority becomes care.

We are hosting the #FlexOnALS golf tournament again and we are picking 2 ALS families with children at home to receive the funds. I understand how little $resources there are for ALS, and I'd love to help relieve the burden. Click here to learn & apply: forms.gle/BXDXJo35oSgxe3…

Only a few days left to apply to receive funds if you are a young family with #ALS. Deadline is April 1st! Apply here: forms.gle/jzszTgmaAmwFMs…

This was the trial Scott participated in. He (and our family) sacrificed SO much for this trial. Scott was convinced it would be the drug that changed ALS. It’s a very sad day, but I’m grateful for Biogen, MGH Neurology & WashU Medicine Neurology for treating Scott so well in the trial.

We got the best care at home from hospice. They did 100x more, were quicker to respond and were just as knowledgeable as our ALS clinic. But people shouldn’t be forced to go on hospice before they are ready to get the necessary care at home.

Here is some info about the event we just discussed on New Day with SSJ. For more info: [email protected]