Jamie Smith
@JamieLW8
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Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
Kansas City
Joined October 2013
Here is some info about the event we just discussed on @newdaywithssj. For more info: FlexOnALS@gmail.com
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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.
If we truly believe in multidisciplinary care for ALS, shouldn’t home health aides be part the multidisciplinary team? Multidisciplinary care shouldn’t be limited to higher functioning #ALS. Later stage ALS requires a different type of care that’s as multidisciplinary as it gets.
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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.
Today, with Biogen, we announced results from the topline Phase 1/2 study of our investigational drug in people living with amyotrophic lateral sclerosis (#ALS). For more information about this program: https://t.co/5U1iHA8mzU
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Only a few days left to apply to receive funds if you are a young family with #ALS. Deadline is April 1st! Apply here:
docs.google.com
Flex on ALS was a movement started by Scott Smith, a personal trainer and business owner living in Kansas City. He was diagnosed with ALS at age 39. He had a wife, a 2-year-old daughter, and another...
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: https://t.co/KCTtaf8qhz
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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: https://t.co/KCTtaf8qhz
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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.
ALS is an expensive disease that isn’t as rare as some think. I appreciate the focus on solving the ALS mystery & finding effective therapies, but there’s too much invested on CURES & not nearly enough on everyday CARE support for PLWALS. The current imbalance is unacceptable!
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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? https://t.co/nBLuJm6EbY
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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
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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 ❤️
I've been called a lot of things in my life before ALS, during ALS, after ALS. I'm pretty resilient. You can call me a former advocate- I'll admit that stung for about 5 seconds when someone first said it to me last year. Then I laughed and realized it didn't matter. 1/6
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As always, beautifully written ❤️
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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
A massive conversation to be had on the impact MND has on the spouse and especially on the children of a person with MND. Our children historically receive minimal support if any at all. 7 years after Eric’s death , our girls all suffer symptoms of PTSD. More MUST be done 💙
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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
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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
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https://t.co/PgUMmnTqNx
@SethPoling10 final blog post 💔
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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. ❤️
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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. ❤️
There is a beginning and end to every story; this is the end of my story, but this is not goodbye; it is a see you later. In the end, it's not the years in your life that count. It's the life in your years. Friends and family, THANK YOU. Please continue my fight to #EndALS.
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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!
Thank you @NPR for letting me speak my caregiver truth - that when I didn't have external caregiving support it was "imprisonment" and "hellish" and when we finally got external help, it racked up to $300k plus/yr, no coverage. #CaregiversCryForHelp
https://t.co/BS2DGzQNCm
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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
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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
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