Jamie Smith

Here is some info about the event we just discussed on @newdaywithssj. For more info: FlexOnALS@gmail.com

@pjgreen Yes, that was the same for us too. I totally agree. They also offered an aide to do bathing but Scott never used them bc he trusted me or his caregiver more with that task. If hospice could have provided a caregiver I would tell everyone to avoid the clinic & use hospice!

@JamieLW8 I am on hospice and agree with you re: the hospice nurses who visit me twice a week. I would like this to extend and include my caregiver who is a key person of my care team. Without her I can’t eat, drink, take my medications, stretch, or toilet during the day.

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.

@nadia_sethi @biogen @MGHNeurology @WashUNeurology ❤️❤️❤️

@JamieLW8 @biogen @MGHNeurology @WashUNeurology This one hit hard for so many reasons. Can’t tell you enough how grateful I am to you and Scott for doing this. ❤️

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, @MGHNeurology & @WashUNeurology for treating Scott so well in the trial.

@VPResearch_ALS @biogen @MGHNeurology @WashUNeurology Thank you, David. Considering we had just had a baby when the trial started it was a huge sacrifice for everyone. I’m glad we weren’t alone in believing in the science behind it and it gave us hope in a hopeless disease. Now, I hope the data collected from it will lead to a cure!

@JamieLW8 @biogen @MGHNeurology @WashUNeurology Sorry, you & he contributed. I am trying to be more inclusive of the collective sacrifices & burden we should be acknowledging in clinical trial & research participation.

@RunningMama0522 @biogen @MGHNeurology @WashUNeurology Thank you, Mandi. Me too!

@JamieLW8 @biogen @MGHNeurology @WashUNeurology Thank you to your family, and your sweet Scott, for contributing to science. I’m hopeful that there are lessons to be learned and this will bring us one step closer to a cure.

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…

@gwenpetersen7 Thank you, Gwen! Doing what I can to help and pay it forward!

@JamieLW8 Amazing @JamieLW8! Thank you ❤️

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…

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.

@melissamaria510 Thank you Melissa!!

Happy birthday, @JamieLW8 !! I hope you have an amazing day!! <3

@AKJKLove4Ever @nadia_sethi @imonfiya7 @ScottsFight @ALSTDI @kelsieswrites Thank you for such kind words, I know Scott would appreciate them. I’m so so sorry for what ALS is doing to you and your son, it’s so unfair. 💔

@nadia_sethi @imonfiya7 @ScottsFight @ALSTDI Dear @JamieLW8 saw you reacted. I loathe ALS ripping me from my Son, Scott from you/girls, Sundeep from Nadia/children,Chris from @kelsieswrites/ kids. & I hate flowery language. Scott/Chris never sold that. They were open, raw, vulnerable, real in their own way. Relatable ❤️🙏💔

Today we met with the ENT for the first time. 6 of my team squeezed into a room to continue the tracheotomy discussion. Lots of good dialogue and I can feel everyone relaxing a little bit. Tentatively setting April 1st as the surgery date. One of the more interesting things is how the family has gone from-holy 💩 I might die tomorrow to-holy 💩 I might live another 10 years. I know I’m not a burden, but my decision to fight to live affects a lot of people. If I’m going to do this, it has to have value beyond me and my desire to live. I can see that, maybe now more than ever. #ALS

@MinoSean Call me biased, but I think that’s why so many people were drawn to Scott and how he wrote. He told his heartbreaking truth, but in a beautiful way. It’s a hard balance, but it can be done.

Humans are considered social animals because they can't live in isolation. With this fear of isolation and loneliness, there is apprehension about telling a truth that jeopardizes our feeling of connection. A truth-teller is someone who tells the truth, especially about what's really happening. They speak honestly and openly, even when it makes people uncomfortable. What does ALS need more of? What do you prioritize, social connection or truth-telling even when it might make people uncomfortable?

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

Ready for prime time on Thursday at #alsmndsymp Thank you @Team_Thriving @farmstronginfo @R1_Crew @als 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…

@alsadvocacy Listerine mouthwash. iykyk.

I so want to ask the researchers how many have kept a suction machine clean. It’s a caregiver badge of honor. #alsmndsymp

@ScottsFight We had more financial support than many and it still wouldn’t have been enough. My Scott struggled with this too. It’s a heartbreaking realization and I’m so sorry you’re facing this. So unfair.

I’m slowly coming to the realization that even though I very much want to live, and I’m willing to do a lot to remain above ground, I can’t afford 24/7 care. It will bankrupt me. Maybe I could squeeze out a few more years until the $ runs out. Nothing to leave behind. #ALS

@nadia_sethi Being on the other side of the disease gives you a different perspective. Not better or worse, just different. A clarity appears when you aren’t overwhelmed with plugging holes in this God awful disease. It’s a clarity we need. Just like we need hope and people like YOU. ❤️

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