Top Tweets for #bulbarALS
Al Raine will be stepping down from his role as mayor of Sun Peaks🏢
Mayor Al Raine was diagnosed with Bulbar ALS, and will be transitioning out of his role as the disease progresses.
#SunPeaks #BulbarALS
https://t.co/sbWMxms3KA
This is #ALS
There is no cure.
The Husband will lose his ability to speak, to eat, the use of his arms, the ability to breathe on his own before he too is faced with making a difficult decision like @vicmaine05
#EndALS #BulbarALS
Iam choosing to set my new date for Death with Dignity for. 3/21.
I grew up in Fort Lauderdale. Loving the ocean is in my blood.
Many hours spent swimming in the ocean, pools, and lakes.
Sadly #BulbarALS took away swimming within months of dx.
I just returned from a family reunion at the beach.
I am smiling.
#nottodayALS #ALS #ENDALS
Yesterday my #BulbarALS' excessive drooling completely stopped. But it was only because I was extremely dehydrated. I learned what is worse than having Bulbar ALS where I can no longer speak, eat, or drink--having Bulbar ALS and a 24 hour stomach flu. #EndALS #ThisisALS
I was a swim instructor for decades--so rewarding! Taught all ages. Physically handicapped kids found freedom of movement in the water. For years I competed as a #USMS Masters swimmer. #BulbarALS took away swimming, But today I walked and kicked in a pool. Such joy! #ENDALS
Average lifespan from symptom onset with #BULBARALS is 27 months. For me, that's this month. A flower lover, last year I wondered if I would see another spring. Today I saw blossoms of daffodils, azaleas, and crabapples. I'll just be over here smiling all day. #grateful #ENDALS
Simple breakfast pleasures...a sip of tea, a bite of buttered toast, crisp bacon, over easy eggs, fresh fruit. I have the dichotomy of being able to enjoy the aroma, but the taste only in memory. I miss everything about being able to eat and drink. #BulbarALS #ThisisALS #ENDALS
We have a great life, but I'm watching it slip away. #filetheBLA @BrainstormCell #NurOwn I need my husband and so do our 5 kids. #bulbarALS is cruel
My dad was a healthy and very active man. He rarely got sick, until #ALS hit. I think about you all the time, dad, but especially today. You should still be around. ❤️🩹 #bulbarals #ALS #findacure #navyvet #daughterofavet
Join me on @kslnewsradio and @KSL5TV today as I share the story of Kyle Brown, who's dying from #BulbarALS. Spoiler, he finished the @IRONMANtri 70.3! His message: GO OUT AND LIVE. When faced with tragedy you can come alive or you can come undone. https://t.co/ShN2TIqODs
I never had a problem with my name until my Bulbar #ALS affected my speech. The double “S” is just a cruel joke now 🐍 Every time I have to check in for an appointment it’s an adventure. Throw in a mask... FML 😂🤣
#itsaPALSthing #ALSAwarenessMonth #bulbarALS #ScottSmith #endALS
@kelsieswrites @cherise77 @biogen My mom is 87 and was diagnosed last summer with #BulbarALS. It’s time to grant compassionate use for this drug. #ENDALS
People need to stop assuming there is something wrong with someone's cognitive functions just because they are unable to speak. Assumptions like this cause lots of unneccessary pain and shame in the person they are directed at. Please think & be empathetic! #bulbarALS #dysarthria
Plowman: With resp strength training, improvements were noted in MEP/MIP, cough peak flow, and swallow function. No change in FVC was noted. Suggests that training can improve respiratory reserve, airway clearance, and oral intake. @emplowman #ALSSymp #bulbarALS
We're in Fredericton NB where we visited an old cathedral which Peggy began painting a few years ago, but after being diagnosed with cancer lost ambition. Now she has #BulbarALS and has decided she wants to finish it even though her hands are weak.
Day 18 of Peggy's coast to coast trip while #livingwithALS
Daily diet which holds her weight steady with #bulbarALS
2 large chicken breasts, blueberries, yogurt, half an apple, vegetables and blend to a liquid before straining and adding 3 Resource for the g-tube. (3 meals)
#BulbarALS - F*ckYou - she is too young - too wonderful - it's just wrong - we will beat you down someday - we will -https://t.co/xDUyrfLgQ9
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