Martha-marie
@Marnes_2023
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I'm realise I'm new to X with minimal followers (apart from porn bots I keep blocking -tnx
@elonmusk
) & influence. But still compelled to share this. The utterly sorrowful & despairing face of
#ALS
#MND
. With ❤ to
@sabrevaya
,
@bsw5020
, their loved ones, & all in this nightmare.
If you read about a failed drug trial please get that this is what that news feels like to families dying from these diseases. We are the faces of grief and suffering behind those headlines.
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@luhaenten
Reminds me of Oscar Wilde's: "The only difference between the saint and the sinner is that every saint has a past and every sinner has a future."
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@IrishTimes
Hopefully his wife and children will return the favour when the time may come to change his.
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@heavy_sara
ALS is as psychologically and emotionally torturous as physical. All go hand in glove. A living hell. In saying that, there are so many fighters out there that live in hope. So I don't want to dampen anyone's spirits. But it's so tough. Even for the most positive of fighters. ❤
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@goodgrieftrust
Not necessarily a believer in an afterlife. But this is beautiful and made me cry. Thank you for sharing.
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@jonathanstea
Good for you. If I hear the likes of the term "NPD" thrown about lightly by ignoramuses anymore I may even fly into a "narcissistic rage". And Jesus wept.
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Thanks guys. Only seeing this now. ❤
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Well said Davina. It's just gutting. And you really do have to walk it to get it. RIP Charlie and so much love to all his loved ones. My heart is broken for them. 💔
Such sad news to hear today. This brutal disease MND once again rips the guts out of another family. Every time it does I think to myself I’m not following anyone’s story again. But you do because it’s only those who have walked your path who truly understand your experience.
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@magsnich
@MeghansMole
Was just thinking the same. It's basically a ball gown. Did she think she was going to the Met Gala?
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@AKJKLove4Ever
@leanne_yacyshyn
I get you. Others may not, & attack u for "negativity". Likewise me 4 supporting u. But I prefer honesty & granting each other grace amid our highly individual reactions & coping mechanisms as we deal with this beast. Which depend on many variables. The biopsychosocial model.🕊
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@Dostoevskyquot
Disagree. One can know the source of unhappiness and still be made utterly miserable by it. E.g. bereavement. Terminal illness. Etc.
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@alessabocchi
Thank you for inspiring the idea for a much needed extra revenue stream. Like a more cultural cam girl. Most of my regular day jobs have made a prostitute of me anyway. And a poorly paid one at that. I've sold my soul a thousand times over. Why not my body too?
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@jdisch177
@AKJKLove4Ever
That's ok Jason. Thanks. Apology warmly accepted and appreciated. I am so sorry about your aunt. I experienced the same with my partner. It's horrific. Hence my passion. And sensitivity. Etc. Much ❤ from 🇮🇪.
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@paddymacc1
@LeoVaradkar
Not necessarily a Leo fan. But are you a psychiatrist? Have you clinically diagnosed him with
#NPD
(narcissistic personality disorder)? The word "narcissist" is thrown about too easily these days. It invalidates those who've experienced real narcissistic abuse. Which is no joke.
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@DavinaRivers
Just responded on another thread about this. The horrible, mind-bending surreality of it all. "Is this actually happening? To us? No. It can't be." But unfortunately it is. & to think thousands are experiencing this every day. Horrific.
#endals
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@TalentCoop
@elonmusk
@sabrevaya
@bsw5020
I know. When will it end?! Words can't cover the horror. But poor Sandra's pic certainly captures the devastation. I am sorry you lost to The Terminator also. Such a uniquely horrifying illness. ❤
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@jdisch177
@AKJKLove4Ever
"Full of shit"? Stop! Please! He has ALS! No more hate. Let him vent. He's as entitled to understandable frustration & anger as Brooke is to admirable positivity. Even if he offends. This isn't about dividing & conquering & "witty" one-upmanship. Only thing to conquer is ALS. 🕊
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@Aurorraz_
Agreed. Sometimes it takes the love of another &/or others before you can love yourself. Because they understand your struggles, help you, & bring out your best. Which can then be reciprocated to them & others by a more self-loving you. More love. A rising tide lifts all boats.
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@DavinaRivers
It's so so so hard seeing that. I know exactly what you mean. Knife to the heart stuff. I want it to piss rain. Suits my mood more.
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Excellent work my beautiful
@BobHannan2016
. Wish more than anything that you could see it in action. And show Johanna around too. Even if it bored her to tears. ❤
🛝🌳💃Myrtle Square and Convent Lane Dún Laoghaire is a vibrant new public space for everyone to enjoy. This is urban planning at its best and a tribute to the work of architect Bob Hannan.
For more information on Living Streets visit:
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@bichonsweetie
@limpbroozkit
So sorry. Given your poor uncle had it, have you been tested to see if your case is familial?
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@sabrevaya
@ChelseaBeach
@elonmusk
@bsw5020
Oh Sandra, you are so welcome. Been following you and Brian since I first joined the club none of us want to be in. If this share warmed even just your one weary heart alone, even just the tiniest fraction, it was worth it a million times over. So much love from Ireland. 🇮🇪 ❤
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@Gebinh1
This confuses me. Was explained to me by a v. smart & informed PALs before. But I didn't fully grasp. How is 1/300 considered rare? That seems common to me. But compared to the likes of cancer (1 in 2 will develop some form), it is rare, so low priority for funding. Is that it?
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@AKJKLove4Ever
Tnks & agreed. Recently derided as a "troll" by 1 such advocate & their followers 4 stating this sentiment decently. So hurtful. There's room for some sugar, but must be balanced. Otherwise stark reality is lost in what's almost a flippant social media popularity contest. Not ok.
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@TalentCoop
@elonmusk
@sabrevaya
@bsw5020
You are welcome and thank you for your kind words too. And this picture truly speaks a thousand words. Stopped me in my tracks. Feel Sandra's pain so much - like too many of us. I hate those three letters so much too. ❤
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@leanne_yacyshyn
Such a horrible irony that something that literally paralyses every muscle in the body so often strikes the fittest. & the kindest. Beyond cruel. Apologies for bluntness. But this disease is a monster too close to my heart. Lots of love Leanne. I'm so sorry it struck you.
#EndALS
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@AKJKLove4Ever
@IMNDA
Thank you. More people need to understand this. But unless they are touched closely by it, I don't think it's possible. The horror is beyond imagination.
#endals
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Another example of
@BobHannan2016
's visionary and award-winning legacy. Beautiful work as always, my love. You are so missed. ❤
A2 are delighted to be shortlisted with DLR Architects Dept. for George’s Place Rapid Delivery Housing in Dún Laoghaire for the Silver Medal for Housing for the period 2018-19
@RIAIOnline
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@StephenKing
Best Oscar moment ever. Sums it all up.
In 2000 South Park creators Matt Stone and Trey Parker attended the Oscars under the influence
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@Jaynes__World
@TalentCoop
@elonmusk
@sabrevaya
@bsw5020
@mndassoc
I didn't know this. Tnx for educating me. Truly. Anyway, I think once DX comes, & we do the horrifying research, we know it's all the same thing, generally. ALS as the "king". So let's keep going with this fuzzy nomenclature, as friends who've never met. V pleased to meet u 2. ❤
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👏! To be called "sick", "mad" & needing medication & commital when profoundly bereaved & traumatized further breaks broken souls. So counter productive. Generally this "help" is from those with no idea. Try a day in our shoes & see. Failing that, try practical support. Or F off.
There's no such thing as prolonged grief disorder. Calling normal human emotion a pathology is a symptom of our "good vibes only" culture. There's NOTHING wrong with you if you're sad, lonely, or have a hard time finding joy or meaning after your person dies. A THREAD:🧵
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@AKJKLove4Ever
@Gebinh1
Thank you. Not rambling. Makes perfect sense. & impossible to capture in 1 post. So how will it ever get funded properly? Especially when it's so complex & heterogeneous too? Sorry if my questions are stupid. But sometimes basic questions shed most light. & it is awareness month!
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@G_S_Bhogal
Thanks Buddha. Another easy way to become less unlikeable is not to be a pompous, arrogant, know-it-all. Many have a right to complain. In fact often they need to and should. To achieve justice, for example. This "advice" is also hackneyed. Nothing original about it all.
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@OutlawsPoetic
Oh, I think there are far greater pains. For example, partner loss and child loss.
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So true on psychological impact. Thankfully here in 🇮🇪
@IMNDA
are extremely helpful. But even then, how can anyone really deal with such a devastating, traumatic, terrifying & hopeless diagnosis? Patients & loved ones alike. Horrific. The unaffected simply can't imagine.
#endals
Craig raises a massive point in this interview. The psychological impact of this disease is just as devastating as the physical impact. My wife and I, were left to drive home half an hour after receiving my diagnosis and didn’t hear from anyone in the health service for three
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@Unhappyandy
You're not. You're grieving. Procrastination & sense of paralysis is normal - the "freeze response". Do 1 small thing, no matter how impossible it seems. & build on it. Relieves stress & anxiety. & adds momentum to do more. Small if joyless wins help. I speak from experience. ❤
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@jdisch177
@AKJKLove4Ever
It's not a social media popularity contest either. It's really heavy stuff that can break even the stongest. No more. Please.
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@DEB_MNDWARRIOR
@limpbroozkit
Thanks Deb. Unfortunately seems lost on Brooke & co. As a deeply bereaved & traumatized former CALs (lost my partner), who's always been kind to this community (& it to me), this tone, talk of trolls, & pile-on is shocking. Can't imagine the likes of
@iamalsorg
approving either.
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@DavinaRivers
@Rob7Burrow
Davina, I am with you 100%. Haven't even showered or dressed today (bank holiday in 🇮🇪). In bits. This has hit us all so hard. Thoughts are with his beautiful wife and kids and Kevin and all his loved ones. 💔
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@Jaynes__World
@X
It is starting to listen. So definitely report. Though it'll probably be a case of whack-a-mole. One down. Ten more pop up. They are so offensive!
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@leanne_yacyshyn
👏! "Vice grip" nails it. Impossible to get unless u live it. For PALs it often grips. CALs (& former CALs) too.
#ALS
is too traumatizing for it not to. & you can't meditate or medicate your way out. How kind as a PALs to offer support with all you're dealing with. ❤ from 🇮🇪.
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@QuoteNietzsche
@ViktorFranklll
Pleasure can be part of meaning. What is life without pleasure, once balanced?
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@IrishTimes
@IrishTimesLife
To be honest, I'm more interested in the sponsored ad for a Microwave Egg Cooker that appeared in the comments section here than this twaddle.
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@TheBertOfficial
@carljones_aggie
Are they ever? The grim. In saying that Bert, I hope your progression is slow, or better yet, plateaued. ❤
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@QuoteNietzsche
This idea lived well before Nietzsche. The Latin phrase "Solvitur ambulando". Meaning "it is solved by walking". Most attributed to Saint Augustine. 354 to 430. Great minds, I guess. Wanking can help too though. Just not sure any saints or philosophers opined on that.
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@TheBertOfficial
And again, please excuse my text speak. I see much longer posts. Is that a paid thing? Soz. Like you don't have more important things to consider...🤦♀️
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@BadWorker1
@MandyLSimard
@Morbidful
Same. I have a really sick sense of humour too, but this is one she should have kept to herself.
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@EndALSNow
@itsSimp39239367
@limpbroozkit
Thank you. Because I truly don't mean to be a jerk. Especially not to someone with
#ALS
, who is doing her damn best. But I lost my partner to this beast. I know it. & loathe it. Like all of us in this community. So that's where the balance piece comes in. Big ❤ to Brooke.
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@A2Architects
You are most welcome. And thanks for those lovely words about him. Such a special, special soul. He loved working with you too. A wonderful collaboration cut all too short. ❤
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@droxy572
@elonmusk
@sabrevaya
@bsw5020
I'm so sorry. We all know the pain. It's basically unbearable. Would drive you out of your skin. Your poor Timothy. And you. And all you and his loved ones. Will light a candle for you all over here in soggy 🇮🇪. For what that may be worth. ❤
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@mhuckfeldt1
@limpbroozkit
I'd say with help unless Brooke can still manage it herself. But as
#ALS
progresses you can forget doing your hair or anything for yourself. Just being honest. This is awareness month. So let's please not treat this traumatic illness flippantly. Even if your intentions are kind.
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@WhiteBoySabbath
@QuoteNietzsche
@ViktorFranklll
Yes. Would be rather a joyless existence. Deep meaning and sheer pleasure can co-exist and complement.
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@Jaynes__World
Same. After my partner's diagnosis. & the night before. & the drive to clinic. As we knew already. There was no denying it by then. Still, nothing prepares you for confirmation. That night's a blur. Food, wine, music,talk, tears, hugs. Horribly surreal. Was this really happening?
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@SaffronKim
Kudos. How simple things once taken in stride become Herculean in grief - even just showering, for example. Wasn't expecting that. Among many other 'delightful' surprises. But those 'small' achievements post loss are actually HUGE. You've to live it to get it. Again, kudos. 👏❤
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@itsSimp39239367
@limpbroozkit
I don't mean to be a jerk. Brooke is amazing. I really admire her positivity & all she does to raise awareness of
#ALS
#MND
. & she can of course do as she wants. I just want to balance the cutesy peanut butter questions with less cutesy stuff, so the reality of ALS isnt lost. 🕊
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Beautiful indeed, my love. Just like you. ❤
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@Jaynes__World
@X
I'm constantly reporting and blocking. Especially offensive when they show up on posts about really serious stuff like
#ALS
#MND
. At first X found no violations. But lately they have gone the other way, finding violations, and suspending these accounts.
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@DEB_MNDWARRIOR
@AKJKLove4Ever
@limpbroozkit
Ha! No worries. And you are welcome. My pleasure. All PALs deserve kind words and encouragement. You handle your illness with such grace and good humour. Though I know the pain and struggle behind that. ❤
#endals
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@Unhappyandy
Yup. Lonely and torturous. Even if you can bear a crowd, or anyone else at all. All you want is your love back. You're not alone in that. For what it's worth. ❤
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How beautiful to see the original script of such a beautiful poem, one of many Cavafy treasures.
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Thanks for this. & to
@imnda
and the team at Beaumont. I think this tweet also proves that
@EndOfLifeIE
does not have some evil, unethical agenda of death. Otherwise it wouldn't support 2 groups working towards a cure for 100% fatal
#MND
#ALS
and save lives. Not end them.
If you can, please support the IMNDA, who do incredible work providing support to both an individual and their families. The harsh reality is MND is incurable. Prof Hardiman & her team are involved in global research and here. You can participate/..
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@DavinaRivers
I know. I'm familiar with your story from Insta. You're further along than me & understandably still bereft. I'm 18 months post partner's Dx & 6 since he died. Fast & furious. Heaven to hell. Almost overnight. Even just now I was thinking: "Did this really happen?" It's f-ed. ❤
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@Aurorraz_
I'm white and my wedding guest list would be the same as what you describe as an Arab's. But perhaps with slightly less family. Accident of birth some blood relatives so often are.
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Too much judgement in grief & too little compassion & support. That's my experience anyway. Get off your high horse & give us a break. It takes all we've got just to survive, raise kids, work, etc. Thankfully I've some really supportive souls too. But if not for them I'd be f-ed.
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@Dostoevskyquot
Or lose ourselves by developing serious and even life-threatening problems such as addiction, depression and PTSD.
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@dullsparkle_
@OutlawsPoetic
But he began the statement with "apparently". To me this means he wasn't attributing the theory to himself. Rather mentioning one he learned elsewhere.
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@TalentCoop
@elonmusk
@sabrevaya
@bsw5020
Oh my gosh thank you. Agree 100% on Sandra & Brian, & how this 1 simple picture tells the story. It's impossible for those with no experience of
#ALS
#mnd
to even begin to grasp the torment, never mind fully understand it. But we in the community know. Friends who've never met.❤
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@AKJKLove4Ever
@IMNDA
Thanks again. & I know what you mean. I've often said that even daily counselling with God or some other deity wouldn't relieve 1 iota of me or my late partner's sorrow, terror & trauma. I commend those that handle it better. But I couldn't & still can't in grief. It's the devil.
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@thegriefdiaries
These signs do make you wonder. And I was previously a total cynic in that regard. Lots of love. ❤
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@luhaenten
If we're lucky enough to grow old. Some say old age is a curse. But when you lose beloveds before their time, you learn it's a privilege. Provided your life's not total shit, with no dependents to fight for. Then the sweet kiss of an early but hopefully peaceful death's welcome.
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@OutlawsPoetic
Try falling madly in love and then the fucker going and dying on you. Now that's even sadder.
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@DEB_MNDWARRIOR
@AKJKLove4Ever
@limpbroozkit
You're welcome Deb & thank you too. Agree on all. I follow you on Insta & love you. & hate seeing fights like this on X. It's not right. We must stand together, even if angry. When my partner got diagnosed, he wrote "love & kindness" on the kitchen blackboard. A motto for all. 🕊
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@Not_Ducked
@DivineManhood
Same. I admire Tom. But this thread suggests the exception is easily achievable. Which is nonsense. If it was that simple we'd all be like Tom ffs.
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@lindachaucer2
@itsSimp39239367
@limpbroozkit
Surely an "ask me anything" campaign for awareness month is all about educating? As for personality & humanity, thankfully Brooke retains hers. So far. Some don't. Due to FTD. Often accompanies ALS. & which CALs especially should be aware of. Skincare too. Just about balance!
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@TheBertOfficial
I keep getting them 2! Hot girl in Korea now luvs u baby cam/love/cumtomebaby/boobies. Driving me 🦇🦇🦇. I'm far from a prude. But wrong audience, sugar tits!
& the fact they're jumping on posts about terminal illness makes it yet more offensive. F*** off!
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