ALS/MND/other degenerative diseases

[arghton 6,745]

ALS sufferer, activist Catherine Scott being reported dead on twitter around 20 years after being diagnosed with ALS. She had been hospitalised for a few days before dying three days ago.

Known for being involved in Augie Nieto's "Augie's Quest" and Steve Gleason's "Team Gleason".

Daughter of an ALS sufferer and mother of ALS activist/ice bucket challenge guy Anthony Carbajal who has been suffering from it for the last 8 years.

 

Carbajal lets his dog lick his noninvasive ventilator, probably not that good for his health 

 

[arghton 6,745]

By the way, that Irenaios/Irenaeus, former Orthodox Archbishop of Crete and at 89 by far the oldest living person with ALS I'm aware of made a rare public appearance two days ago:

Looks like a corpse and I can't see if he's on oxygen but all things considered impressive he's still even alive and in such "good condition". Immortals list potential considering he was also hospitalised early this year in delicate condition but seemingly survived it pretty well. It's been 26 months since he was diagnosed with ALS following respiratory failure and underwent a tracheotomy.

 

For comparison, Bruce Allpress who was the same age lasted 6 months with it, Ronnie Corbett lived 12 months since diagnosis, Irv Feinstein lasted around 17 months. I recall there was someone mentioned somewhere here who died from it at 95 but can't remember where, when and can't remember the name.

[Lafaucheuse 4,051]

do you know the life expectancy of someone with multiple sclerosis (don't know if it's the right thread…)

[The Old Crem 3,605]

On 26/09/2022 at 17:48, Octopus of Odstock said:

They've been reunited but only of sorts.

 

Stephen Darby, able to walk in the original, is now too ill to attend. Rob Burrow can no longer talk and Doddie Weir is a fraction of the man he used to be. Burrow says he's stabilised since lockdown.

 

It's on a video in BBC breakfast, just trying to find the link. I think Burrow and Darby are likely to go first; Doddie is probably likely to battle on until 2024 judging by their progression.

 

bbc.in/3LH018m

At the Rugby League world Cup final just now Kevin Sinfield named those three and Ed Slater as the four he has been fundraising for.
 

There is a picture of Darby with him at Valley Parade the Other day and he seems slightly less advanced than Burrow but it’s photographed from behind. 

[Octopus of Odstock 2,197]

1 hour ago, The Old Crem said:

At the Rugby League world Cup final just now Kevin Sinfield named those three and Ed Slater as the four he has been fundraising for.
 

There is a picture of Darby with him at Valley Parade the Other day and he seems slightly less advanced than Burrow but it’s photographed from behind. 

 

Now that's interesting. Darby is standing. The last few pictures have seen him in a wheelchair. I'd imagine he uses a wheelchair most of the time but unlike Burrow and Weir, he's not confined. 

 

That changes my predictions.

 

Burrow... Sadly I cannot see him making 2024.

Weir.. not sure if he'll see 2024

Darby.. barring massive deterioration should make a couple more years. 

 

 

[CaptainChorizo 1,983]

A name to  possibly watch for in the future

 

Lauren "Lolo" Spencer

 

She's an actress who has a recurrring role on the Hbo show "The Sex Lives Of College Girls" and starred in the 2019 Independent Film "Give Me Liberty"

 

She's had ALS since she was 14 and is in her mid 30's now.  Seems to have the slow progressing kind of ALS,so could see her still being around in 20-30+ years.

[msc 18,477]

Aww, sad but expected. RIP Doddie Weir

 

 

[Windsor 2,233]

Had him down for next year. 

[Exu 250]

Had him down for this year as I suspect many other in the DDP did.

 

A sad loss and a bloody terrible way to go

[dodrade 94]

He had certainly deteriorated recently but I still thought he would probably outlive Rob Burrow.

[Windsor 2,233]

6 hours ago, Windsor said:

Had him down for next year. 

 

According to my shadow list here I also had him in 2022.

 

What a silly sausage I am...

[tomarse 84]

Rob Borrow doing CBeebies bedtime story.   Doesn’t look too great but no worse than last time he was on screen

 

https://www.bbc.co.uk/news/entertainment-arts-63814194

[arghton 6,745]

On 12/07/2022 at 15:39, arghton said:

Antero Laukkanen, Member of the Parliament of Finland since 2015, diagnosed with ALS:

https://www.is.fi/politiikka/art-2000008940770.html

He's 64 and his legs aren't working that well anymore, so my bet is that he's got 2-3 years at most.

Antero Laukkanen was at the Independence day reception today. Now wheelchairbound and looks frail.

[msc 18,477]

BBCV Sports Personality of the Year 2022 - Rob Burrow gets the Helen Rollason memorial award for outstanding achievement in the face of adversity.

 

Rollason was a DL pick back in the day, Burrow probably wont be.

[tomarse 84]

10 hours ago, msc said:

BBCV Sports Personality of the Year 2022 - Rob Burrow gets the Helen Rollason memorial award for outstanding achievement in the face of adversity.

 

Rollason was a DL pick back in the day, Burrow probably wont be.

Burrow looked in decent fettle for his condition - surely will be top ten for 2023 tho. 

[maryportfuncity 10,647]

On 22/12/2022 at 07:41, tomarse said:

Burrow looked in decent fettle for his condition - surely will be top ten for 2023 tho. 

 

 

Yeah, but I'm thinking however good he looked he's lost his speech and he's stuck in that chair. Being totally morbid for a second that likely means other nerves are rapidly shutting down and the terminal problems come when swallowing, breathing and the like are compromised. Not the expert here but I'm thinking "top ten" is right and young enough to be good DDP points. Horrible for sure but he seems to have gone down at an alarming rate. 

[Grim Up North 3,726]

52 minutes ago, maryportfuncity said:

 

 

Yeah, but I'm thinking however good he looked he's lost his speech and he's stuck in that chair. Being totally morbid for a second that likely means other nerves are rapidly shutting down and the terminal problems come when swallowing, breathing and the like are compromised. Not the expert here but I'm thinking "top ten" is right and young enough to be good DDP points. Horrible for sure but he seems to have gone down at an alarming rate. 

yes but I couldn’t bring myself to joker him because it is just too tragic.

[Sean 6,329]

On 22/12/2022 at 07:41, tomarse said:

Burrow looked in decent fettle for his condition - surely will be top ten for 2023 tho. 

In his recent documentary you saw more close ups and what he looked like without a suit.I thought he looked incredibly emaciated.

[maryportfuncity 10,647]

On 22/12/2022 at 07:41, tomarse said:

Burrow looked in decent fettle for his condition - surely will be top ten for 2023 tho. 

 

 

Yeah, I'm thinking however good he looks he's already lost his speech and he's gone downhill very quickly. In other news, his customised van was vandalised whilst he was out for a Christmas meal with the family. 

 

I mean, people way we're sick...!

 

Link: https://www.bbc.co.uk/news/uk-england-leeds-64086021

[arghton 6,745]

On 07/11/2022 at 11:32, arghton said:

If you want yet another very ill Orthodox leader, Irenaios of Crete (Greek wiki) who was the Archbishop of Crete from 2006-2021, has suffered from ALS for years, was seriously ill in 2020 with respiratory failure and underwent tracheotomy. He's 89!

I think it's pretty impressive he's survived so long with ALS and a tracheotomy.

His (Irenaios/Irenaeus) successor's christmas message mentioned him, saying he "daily educates us with his holy patience and exemplary determination in his illness". I however doubt he has enough holy patience and exemplary determination to make it to his 90th birthday in August.

[alt obits guy 3,371]

Todd Brian, an executive with WildBrain Animation, a big name in Canada-based kids and family animation, has died. He was 59. Brian died of ALS.

 

https://www.animationmagazine.net/2023/01/wildbrain-animation-exec-todd-brian-has-died-of-als-age-59/

[Sir Creep 7,070]

Steve Gleason (on Twitter) celebrates (?!) his 12th year of an ALS diagnosis.

 

[arghton 6,745]

Euan MacDonald MBE is still alive. As far as I know mentioned on these forums twice, first on page 9 of the Rugby Players thread when he met Joost van der Westhuizen in 2013 and picked once in Death By Numbers over a year ago.

[alt obits guy 3,371]

Michael Lehrer, a former Second City actor-writer, has died. He was 44. Lehrer had developed ALS.

 

https://chicago.suntimes.com/2023/1/18/23558502/michael-lehrer-dead-als-comedy-kill-tony-obituary-second-city

[arghton 6,745]

On 03/01/2023 at 01:03, arghton said:

His (Irenaios/Irenaeus) successor's christmas message mentioned him, saying he "daily educates us with his holy patience and exemplary determination in his illness". I however doubt he has enough holy patience and exemplary determination to make it to his 90th birthday in August.

Interestingly this pretty much says he has some form of dementia in addition to ALS. Must be a horrible combination

“Many people come every day and take his blessing. This man with his silence says more things than he said perhaps when he spoke. With his smile he reveals the strength of soul he has and the spiritual work he has done within him. And now with the redemptive significance of his illness and what he has been going through for two years now with his tracheostomy and gastrostomy, he has not lost his smile. His clarity has not left him, except for a few hours. He has the problem in his memory. The condition is such that it does not help him. He remembers faces. Communicates with faces. He is the father of us all. For me, Archbishop Irenaios is a daily check on my conscience," he said.

 

He's bedbound in recent images.