#Bulbar - Twitter Hashtag

18 days ago · Tallo

setiap gunung tidak berjanji memberikan keindahan, akan tetapi setiap gunung pasti memberikan makna di tiap perjalanan☘️ . . . Sunrise di kettingan 2730 mdpl emang gak ada obat sihh love bgt #bulbar #bulubaria2730mdpl #malino #gowa #makassar

maddd_ahh's tweet photo. setiap gunung tidak berjanji memberikan keindahan, akan tetapi setiap gunung pasti memberikan makna di tiap perjalanan☘️
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Sunrise di kettingan 2730 mdpl emang gak ada obat sihh love bgt #bulbar #bulubaria2730mdpl #malino #gowa #makassar https://t.co/8kwu2VvPwd

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fadly @ianVster

11 months ago

Kalau sering nanjak tanda nya apa? #Makassar #bulbar

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Brooke Eby @limpbroozkit

about 2 years ago

day 29 #voicebank #texttospeech #assistivetech #nonverbal #als #bulbar #slp

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Jodi Allen @JodiAllenSLT

over 2 years ago

@viviers_mari This was one of my @UKSRG2 highlights 🤩 Massive credit to Eleanor for implementing this real-world evaluation of how #neuromuscular #gene #therapy impacts #swallowing & #bulbar function. A shining example of impactful frontline research 🙏🏻

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Mashkawizii @NISHwmn

over 2 years ago · Hamilton

My #C9orf72 #FamilialALS family seems to progress similarly over generations (currently two #LivingWithALS) My Dad & I -Men have mostly experienced early slow progression of #FTD (at least a decade or 2) starting in their 50s. Then muscle weakness, & then #Bulbar - the Women 🧵

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SLT Ultrasound @SltUltrasound

almost 3 years ago

The #SLT #ultrasound #dabblers were keen to view imaging of #bulbar #muscle #pathology & compare with #healthy. Many thanks to @nensdoc for sharing this loop of #tongue #fasciculations. Compare muscle #size #brightness & #movement with @amyendacott below 👇🏼

Amy Endacott @amyendacott

almost 3 years ago

AMAZING day @SltUltrasound discussing practical skills + clinical applications. US of head/ neck/airway is very promising in supporting SLT's to understand more about pathophysiology = more effective therapy! Thank you @JodiAllenSLT @claire_slinger @DrJoanMa1 @DrJoanneCleland

amyendacott's tweet photo. AMAZING day @SltUltrasound discussing practical skills + clinical applications. US of head/ neck/airway is very promising in supporting SLT's to understand more about pathophysiology = more effective therapy! Thank you @JodiAllenSLT @claire_slinger @DrJoanMa1 @DrJoanneCleland https://t.co/hGyE1SNc3u

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Matthew Alan Mullins @MatthewAMullins

about 3 years ago

Truth Is Out There ? By Bulbar https://t.co/dV8ITuedg6 https://t.co/qs1QJsDX0l #TruthIsOutThere #Bulbar

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 3 years ago

Thx @JulietteKPIX for telling story re local #SF #theatre director, @RealErinMerritt who's battling #ALS. Help us fight for #FDA approval of drugs like #Pridopidine that helps #bulbar sx & #NurOwn that halts paralysis in some. #TeaParty https://t.co/W5nnbdhyzo via @KPIXTV

aVoice4ALS's tweet photo. Thx @JulietteKPIX for telling story re local #SF #theatre director, @RealErinMerritt who's battling #ALS.

Help us fight for #FDA approval of drugs like #Pridopidine that helps #bulbar sx & #NurOwn that halts paralysis in some.

#TeaParty

https://t.co/W5nnbdhyzo via @KPIXTV https://t.co/XSpZItBIyj

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AZ Latina ☮️🌊🟦

@aVoice4ALS

almost 4 years ago

Thx #ChicagoMed for telling the story of a woman w #Bulbar onset last season. Look forward to tonight! If anyone diagnosed w #ALS needs support, #genetictesting or health care, contact @synapticure https://t.co/atywMfBtt1 @NBCOneChicago @NBCChicagoMed @sabrevaya @bsw5020

aVoice4ALS's tweet photo. Thx #ChicagoMed for telling the story of a woman w #Bulbar onset last season. Look forward to tonight!

If anyone diagnosed w #ALS needs support, #genetictesting or health care, contact @synapticure

https://t.co/atywMfBtt1

@NBCOneChicago @NBCChicagoMed @sabrevaya
@bsw5020 https://t.co/mpXJv3SlgY

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NIPPY by Breas @NippyVentilator

almost 4 years ago

@TiinaAndersen delivering an excellent update on her work with a talk on “#MIE and the Upper Airway”, including expert guidance on how to fine tune device settings for #bulbar #MND patients 👌 #educationbybreas #ALS #laryngoscope

NippyVentilator's tweet photo. @TiinaAndersen delivering an excellent update on her work with a talk on “#MIE and the Upper Airway”, including expert guidance on how to fine tune device settings for #bulbar #MND patients 👌

#educationbybreas #ALS #laryngoscope https://t.co/zywhO5C6r8

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AZ Latina ☮️🌊🟦

@aVoice4ALS

about 4 years ago

ALS is not just a disease of old men Beautiful women of #HerALSstory were dx'd w #ALS b4 their 35th birthdays May 9th is #WomensCheckUpDay & start of #WomensHealthWeek. ALS symptoms in comments but women more often affected w #bulbar onset. #ALSAwarenessMonth #WomensHealth

aVoice4ALS's tweet photo. ALS is not just a disease of old men

Beautiful women of #HerALSstory were dx'd w #ALS b4 their 35th birthdays

May 9th is #WomensCheckUpDay & start of #WomensHealthWeek. ALS symptoms in comments but women more often affected w #bulbar onset.

#ALSAwarenessMonth #WomensHealth https://t.co/iUKaixtGmr

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Michael Moutsoulas @MMoutsoulas

over 4 years ago

It takes effort to keep my mouth closed-literally & figuratively. It stays open because of weak jaw muscles due to #Bulbar #ALS. I advocate daily to allow patients access to promising treatments like #NurOwn. Would someone shut my mouth already? @DrCaliff_FDA @Cylebo #FileTheBLA

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pat wharton @Pjwharton80

over 4 years ago

@MMoutsoulas Good news mate , take a dry mouth any day of the week #bulbar #mnd #als

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Michael Moutsoulas @MMoutsoulas

over 4 years ago

It's been a week since my #Botox B injections. I can already feel a difference. I'm not spitting and suctioning nearly as much. I won't know it's full effect until Day 10. My mouth gets dry at times, especially at night. But I'll gladly take this tradeoff.🙏 #ALS #bulbar #NurOwn

Michael Moutsoulas @MMoutsoulas

over 4 years ago

I had Botox B injections today. Shots on each side near my jaw muscle & 2 under my chin. I'm not going to lie, it hurt like a mofo! Goal is to reduce the amount of saliva I manage due to #ALS. Did anyone in the #NurOwn EAP see improvements here? @FDACBER I'd love to find out.

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Ali Schoos, PT @PTAli1

over 4 years ago

I'm sorry Michael! Kristi is continuously jaw dropping astonished due to her #bulbar #ALS AND the lack of access to drugs kike NurOwn. Let's get that #BLA going @BrainstormCell

Michael Moutsoulas @MMoutsoulas

over 4 years ago

Been having more jaw dropping moments. While #FDA inaction is enough to make one’s jaw drop, its #Bulbar #ALS that does it to me. It now takes effort to keep my mouth closed. What is the hold up on #NurOwn approval? Asking because I can’t keep my mouth shut!😜 @califf001 @US_FDA

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Michael Moutsoulas @MMoutsoulas

over 4 years ago

Been having more jaw dropping moments. While #FDA inaction is enough to make one’s jaw drop, its #Bulbar #ALS that does it to me. It now takes effort to keep my mouth closed. What is the hold up on #NurOwn approval? Asking because I can’t keep my mouth shut!😜 @califf001 @US_FDA

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Michael Moutsoulas @MMoutsoulas

over 4 years ago

My choking episodes are happening more often. Sometimes, I choke on my saliva. Other times, it feels like I'm choking on air. Dx #Bulbar #ALS 11/2019. @califf001 @US_FDA If went to the doctors, I'd be sent home in despair like 2 years ago. Will you help pALS by approving #NurOwn?

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Jodi Allen @JodiAllenSLT

over 4 years ago

Diving deep into #neuromuscular #disease 👀 Thank-you @BritishMyology for your Adult Muscle teaching day 🙏🏻 Perfect for #NM specialist #AHPs 🤓 Stay vigilant #speechies - lots of #bulbar #speech #swallowing & #cough challenges to overcome in this patient group #wellness #QoL

JodiAllenSLT's tweet photo. Diving deep into #neuromuscular #disease 👀 Thank-you @BritishMyology for your Adult Muscle teaching day 🙏🏻 Perfect for #NM specialist #AHPs 🤓 Stay vigilant #speechies - lots of #bulbar #speech #swallowing & #cough challenges to overcome in this patient group #wellness #QoL https://t.co/WMwTY2P51K

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Michael Moutsoulas @MMoutsoulas

almost 5 years ago

It's a hot day in Boston. My throat is dry and I have an endless supply of thick saliva occupying my mouth. I decided I needed a sip of water, knowing there was a good chance of it going down wrong- and that it did. Throat's still dry, but now dealing with mucus. #Bulbar #ALS👎

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Sally Atwood @SallyAtwood_

about 5 years ago

#Texan Dying ALS @JohnCornyn I am a Texan diagnosed with #Bulbar ALS. As my Texas Senator I request that you #PLEASE Co-Sponsor bill S.1813 ALS is 100% Fatal ! ALS has been around for over 145 years! There are #No Treatments only 2 drugs that can only give me a few months. #HELP

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