This is a tough post and one I’ve never wanted to write... on September 10th, 2019 Grayson lost his biggest fan and best friend.. his Grandpapa (my Dad). .
Everyone keeps asking me, “have you talked to Grayson yet?”, “do you think he understands?” And my answer is Yes, I’ve talked to him about it (a little) and Yes, I believe he understands. Throughout my Dad’s battle with ALS, Grayson was there, every step, watching and learning. He watched his Grandpapa go from swimming and wrestling with him, to completely paralyzed and unable to speak and every “hard hit” that came, every change, you could see Grayson was confused but you could also see the empathy. Grayson knows when things are broken... be it objects, animals, or people.. he knows when it’s “broken” and has full understanding. He knew when Karat was “broken” and always tried to help me care for him, and he knew when my Dad was “broken” and was always trying to help my Mom care for him. .
As much as I believe he understands, and as gentle and empathic as he is... I’m angry for him. I’m angry not just for my loss of my Dad... but I’m so so angry for Grayson’s loss of his Grandpapa and I’m angry for my Dad’s loss of time with his grandson. I’m heartbroken that they were both robbed of time with one another. Their relationship was so pure and filled with absolute joy.
Grayson was given the best Grandpapa a little boy could ever have. I mean that. He was the absolute best. My Dad loved Grayson fiercely and fought for him relentlessly. He would drop anything at any moment if he knew we needed him. He spent every free hour he had playing with Grayson and loving him so big. Instead of trying to force Grayson to be a part of the life he thought he’d have with his grandson, he joined Grayson in the new world he brought to us, while finding ways to ease him out of his comfort zone and for that, I’m forever grateful. .
I may be angry right now, and so so far from acceptance over the loss of my Dad but one thing that keeps me going is the belief that I know if I ever need to find my Dad, I know he’s with and within Grayson... always... I still just wish they had more time...
5 196 hours ago
Tomorrow I will be walking to help find a cure for ALS! Any donations are greatly appreciated. Just copy and paste this link to donate for a great cause! #ALS#walkforacure#donate#cure#nyc#shibainucrazypeople https://www.facebook.com/donate/379299179663801/?fundraiser_source=external_url
1 286 hours ago
Tag your friends and let them know your thankful for them. Any trial comes with good days and bad days. My peeps know who they are and I’m so thankful for them! But @theresawhitlockwild definitely goes above and beyond and checks in with me daily. I felt a little more love in the last few days just simply being reminded I really do seem to have great friends no matter where I go. 🥰🥰 #als#friends#betterwithfriends#girltalk#stress#caregiver
Last night my father-in-law passed away after a short battle with ALS. He was such a loving man with unique sense of humor. He loved me like his own daughter. I will never forget how happy he was when I told him I was going to take the last name Winter when Joey and I got married. I will miss his puns and dad jokes, his photo and meme texts, how kind and welcoming he always to me. I am so grateful he was such a great dad to my husband. Craig, you will be truly missed. #YouveBeenCraiged#lougehrigsdisease#ALS#ALSsucks
I have not physically lost my legs, but I have pretty much lost the use of my legs. So this hit home for me. And believe me there are days where I am negative and down. But I try to shake them and focus instead on what all I still DO have the use of, and all of the things that I can still do. You'll go crazy if you don't...
6 6713 hours ago
MANY THANKS to all of the kind and generous donors who are supporting this ride for The @ALS Association! I've reached my fundraising goal and feel so much gratitude for your support!
We' re helping patients and families who are fighting ALS disease and I'm inspired by your giving to people in need! Thank you!
Unresponsive and not breathing normally/not breathing at all
Call 999 and request paramedic ambulance
30 chest compressions (rate 100-120bpm)
2 rescue breaths (reposition airway first)
Continue CPR 30:2 until exhausted, help arrives or patient regains consciousness
As soon as AED arrives, switch on and follow instructions
FOR PREGNANT WOMEN:
Gold standard is manual displacement of the uterus to allow for venous return from the inferior vena cava.
If there are not enough people to perform manual displacement - use left lateral tilt using a wedge or coat.
AED can be used on pregnant women as the shock does not go through the abdomen.
Reposted from @combatparamedic (@get_regrann) - Let’s discuss IO infusions: video courtesy of @grepmed
Honestly as much as I understood the Pharmacokinetics behind them I really just could not get hind them.
I could almost always find a vein, after finding this video it was likely because the IO gave them just enough fluid to add the vascular access they needed.
One day taking a patient to the Cath lab the patient crashed. A fairly young patient had a fairly significant cardiac arrest.
Despite two 8Fr Arterial lines(groin) and two 7Fr Venous lines, as well as an 18 GA/ac line, the anesthesiologists popped an IO line. I thought “How F*kin weird.
Between all of our V-lines and all of our A-lines this patient surely does not need the IO. They did this because of an ICE protocol they had been trying out.
The patient was cold within minutes. That truly hammered home to me how fast an IO worked. They were always a last ditch effort for me I simply did not believe in them. However that day in 07 I did learn to trust them and the protocol for icing a patient got discontinued via IO I learned to trust the device #regrann#emslifenamibia#paramedic#medic#ems#emsnamibia#namibiaems#emseducation#paramediclife#patientcare#emscoffee#ALS#continuedmedicaleducation#neverstoplearning
What are co-infections? More than 50% of Lyme patients also have at least one co-infections. Ticks, mosquitoes, fleas, flies, and spiders are often carrying a whole host of bacteria so chances are you’ve been exposed to at least one of these infections. Check out our latest post for more information about the often difficult to diagnose co-infections that come with Lyme!
This September, people living with #musculardystrophy#ALS and related #neuromuscular diseases are sharing their stories of strength and their power of will. Check out all of the amazing stories and ways you can make a difference at @mdaorg
5th Prize : 3 Earring set: Spurs Inspired, Fiesta Confetti, and Topo Chico drops.
4th Prize : The Diana Wallet Brown with the western floral print.
3rd Prize : The Valdez Wallet Brown with the western floral print.
2nd Prize : The Garcia Wallet All Black.
1st Prize: The D.A. Wallet Black Shark leather with grey stitching.
0 915 hours ago
We said goodbye to our uncle Frank yesterday in ICU. He was the pillar of our family taking care of everyone, always friendly seeing the good in everyone he meets, he was in the army, a xray tech at Kaiser Permanente in Oakland and a great partner/husband to Rick they have been together for 32 years He's, Always there to help anyone out, I realize I get some of my traits from him in making friends with everyone I meet and helping people out. He is in peace now no longer suffering from ALS and is up in the sky with his baby brother Manuel and his father Faustino Diaz ❤💔🙏 #familyisforever#uncles#army#kaiserpermanente#guncle#RIP#restinpiece#family#als#lougerigsdisease
7 2315 hours ago
The Georgia Chapter Board of Directors was proud to present Dr. Jonathan Glass a check for $100,000 as part of a recent grant fund from The ALS Association for Project MinE’s next phase of work: Establishing a Central Repository for Whole Genome Sequencing of ALS Patients. The ALS Association is funding $1.1 million over three years to this project and the Georgia Chapter is proud to be able to be a part of supporting Dr. Glass and his research team partners. #ALS#MND // www.projectmine.com #projectmine#EmoryALSCenter
0 3215 hours ago
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This is Scott Trump’s engine we are building for his 1949 pickup. He has been watching our website and YouTube channel for the last 3 years debating exactly when to start his project. Just a few weeks ago he was diagnosed with ALS and has been told he only has 2 months to live. He called us immediately and said he wanted a 383 stroker “Beast” built and delivered to Utah ASAP. His dying wish is to do a long burnout in his truck before he passes. We rushed all of his parts and we are almost complete, it should be done early next week. Keep Scott in your prayers please 🙏 #ALS
When we learned that veteran mountain bike photographer @meagherdude was battling ALS, we knew we needed to do something to help. So, this Friday we and @evo are hosting an event at the @evoseattle store to benefit Colin and his family while celebrating some of his favorite work. Come share laughs and stories from 6-9pm if you’re in the area! Head to the link in our bio for all the event info, to donate to his GoFundMe, and to see more of his work if you can't make it to @evoseattle on Sept 20!
Vor genau drei Jahren. August 2016. Der Schock über die Diagnose ALS sitzt noch tief, aber Pizza geht immer. Tränenreiche Tage, allerdings behielten wir einen relativ klaren Kopf. Die Tage waren sehr anstrengend, es gab auch viel zu organisieren. Das hatte den Vorteil, dass wir keine Probleme hatten ein- und durchzuschlafen. Selbst am Abend des Tages der Diagnoseverkündung fiel ich völlig erschöpft ins Bett und bin direkt eingeschlafen, kein Tavor, noch nicht mal Bachblüten. Wir taten was getan werden musste: Freunde, Bekannte und Arbeitgeber informieren, Arztbesuche, Rezepte, Medikamente und Termine in ALS-Ambulanz organisieren, Keller aufräumen, den Rasen mähen, mit Hannes spielen, Geburtstage von Freunden feiern, die eigene Position bestimmen und den Kurs festlegen. Weinen, Lachen, Leben. Hilft ja nix. Weiter, immer weiter. Ich bestimme wie es mir geht - Ansichtssache. #überlebenbeginntimkopf#fight#pizzarettung#nichtderwindsonderndiesegelbestimmendenkurs#als#madebyeyes