Being blunt just once more... maybe

[Clearwater AL]

I was known for being blunt in the past. Well… gotta do it again this
one time, maybe. All these threads recently with… “I am 20 years old” –
“I am 23 years old”, - “32 year old…” – “35 year old” over the past
few weeks in my opinion are trolls.

Just trolls… testing, taunting or sadly just having fun at the
expense of the forum and those reply.

ALS is a rare disease even extremely extremely rare is anyone
in their 20s or 30s to be diagnosed with ALS.

(Yes, it has happened…worldwide it’s less than 500 and some of that
is questionable depending the country.) Now there are Neurologists
questioning if Stephen Hawkings really had ALS or another form
of MND. No one has lived longer than him with his early onset.

Some are very skilled in composition, sentencing, terminology,
paragraphing and questions. They continue to troll even after they
have been given clean a EMG (even with the report) and some two
or more, then question the EMG was done too soon. And...
the posted threads seem similarly structured the same.

Then the ones who say they have an EMG scheduled with days
or a week then post it has been put off for weeks or a month plus.
Followed with new questions and new symptoms.

All just coincidence ? - Possible. Really ? Maybe I'm wrong.

 

[Marnes77]

I understand what you are saying. For sure.

However, there is perhaps a disproportionate representation of those diagnosed young on social media. Many have huge followings. E.g., Brooke Eby. And their followers are mostly young. By nature of the social platforms. And otherwise would be unaware of ALS. Now they are aware, it might be feeding their anxiety.

So that could also be a factor maybe?

I also hear anecdotally it is on the rise generally and among the young. But that is just anecdotal to my knowledge so far. Not evidence based.

There is also AI.

Who knows?

But any fake concerns are extremely offensive to PALs, CALs and former CALs. That's for sure. It's like a form of morbid tourism. They get to go home. We don't.

Marnes
Xxx

 

[KimT]

I think there are three types. Those with extreme health anxiety, those with another medical condition or possibly even a motor neuron condition, and trolls. I can deal with health anxiety or with someone who has a bunch of symptoms and is trying to get reassurance or advice. I can't deal with trolls.

I'm on the UK forum, too. I think more PALS post there but there have been a few who change their identities and try go come back on.

 

[Clearwater AL]

“I am a 28 year old Male…” just today! Close to a dozen the past
two weeks. And just a few minutes ago…”20M here.”

Again and again… familiar first and last sentences.

I quit posting how extremely rare for someone in their 20s
being diagnosed with ALS. Why bother.

And… ALS is still considered a rare disease struggling for
research funding compared to Alzheimer, MS, MD, Parkinson
Disease and Cancer.

Most of the other sub forums have gone idle now (I have my
opinion why) and now there’s only three, four that get replied to
almost immediately.

My opinion. These 18, 20 and 30 years olds posting over
the past weeks are very skilled computer operators, grammar
composers are trolls. The paragraphing, sentencing are also so
familiar. Their symptoms too… like the ones before them.

They are having troll fun, entertainment and are they really 18,
20 and 30 olds? Whoever can post any age. IP addresses can be
worked around, skilled computer operators know how to get
around that.

For the “Could This Be ALS” sub forum… It is what it is.

I’ve rambled on enough… I’m no longer as skilled in composition,
sentencing and train of thought as I once was. It’s now part of my
progression I guess. But I still can read threads sentence for
sentence, word for word and maybe comprehend what others
skim read and miss

Whatever...

 

[Marnes77]

Hi Clearwater,

I am so sorry to hear of your progression. As a former CALs I understand the toll.

Trolling an ALS support site is right down there with the lowest form of humanity.

May I ask why you think the sub forums have gone quiet? I ask out of genuine interest. Not in any challenging way. I respect your opinion.

But only if you are willing and able.

I really am so sorry this beast is in you.

Lots of love,
Marnes

 

[KimT]

Hey Marnes,

I hope you're doing well. I know it's hard to lose someone you love.

When I first came to this forum (early 2015 when I was going through the diagnosis process) there were many more PALS posting. Most have passed away. There are still quite a few CALS (past and present), but there are other forums and Facebook groups that allow links to Amazon and other helpful places to find items.

The UK forum has more posts by PALS and it is informative as well as fun, if having this disease can be described as fun. They have games, Wordle contests, and post lots of pictures.

Forums evolve.

This forum also sells ads so it benefits from traffic.

 

[Marnes77]

Hi KimT,

I am pretty crap. The grief and trauma remains intense. I feel awful saying that to a PALs though. But it is what it is with this crappy disease.

How are you doing? I hope progression still slow.

I think even when I joined here in Jan 2023 it was far more active. I will never forget the horror of posting to the CIBALs forum. I knew it was ALS. But I am still in shock to be honest.

But my memory is blurred from those days. Some days are still a blur. Maybe I was more focussed on the CIBALs and then CALs threads to notice what was happening on the rest of the site. I don't know.

Forums certainly do evolve. Maybe "star" advocates like Brian Wallach bring more people to the likes of X too. There are probably quite a few factors.

Maybe it is just a natural ebb and will flow again in time.

Love to all on this road, PALs, CALs, and former CALs.

Marnes
Xxx

 

[KimT]

I'm still progressing slow but another "condition" turned up when Mayo did more genetic testing. I have Ehlers-Danlos disease and that is what's causing all my pain. That can harm the vascular system, so they did another brain MRI and some other scans. Well, the brain MRI showed a tumor. My neurologist said most likely it is benign but it wasn't there in 2014 so they're keeping an eye on it.

I can still get in the pool most days but I use my PWC to get down there. I can walk around the condo without a walker so that's good.

Thanks for asking.

 

[Marnes77]

Jesus Kim, you have had a really unfair amount of illness hurled at you in life. I'm so sorry. I don't want you to think I am pitying you, by the way. I hate pity. I get it a lot. I am empathizing.

I don't want to talk in platitudes either. I get that too.

This life is too cruel to some of us.

All I can do is send my love from Ireland.

Lots of love,
Marnes

 

[KimT]

Thanks. I know, it's pretty f'ing weird to have all this crap, and even some major crap before ALS. Guess all that exercising and eating organic for years didn't help with anything.

But, again, I turned 69 today. I've lived a good life. I had 50 years without any physical inabilities and I played hard.

My heart goes out to some of the young PALS I've met. This disease is brutal.

 

[lgelb]

As regards commercial links to helpful products, just a reminder that you can put these in PMs, as I just did. The conversation link is an envelope up top right.