Why is this Forum Here?

[ValleyMomma]

Seems like this forum just feeds the irrational fear of way too many people. Seriously. Reading through these threads and it's amazing!

Just wow!

 

[ValleyMomma]

I should say sub-forum. This forum as a whole is awesome.

 

[vickim]

This conversation has been had many times. IT does serve a purpose. It keeps the "DIHALS" from posting all over the forum. It helps those who have the fear of having this disease. Everyone here PALS and CALS have faced the fear of what if, unfortunately the fear was founded for them.

There have been some DIHALS posters who turned out to have it. No one is forced to read or post here. If it is upsetting to someone then they should just ignore this section. If someone feels they can help or answer a question then they are free to do so.

 

[goolia75]

I agree with Vickim. There may be the occasional person in the DIHALS who later finds out they really do have it. Plus, on the positive side, talking about the disease, even when its with a person who has an irrational fear of ALS, gets the word out.

I didn't even know what ALS was 6 months ago. Thanks to this forum, now I do. I have learned about the disease process and have seen real people and families fighting it. I have read about drug trials and questioned why there is no awareness or treatment. I have posted links on my Facebook to videos and articles about ALS and am planning on doing a walk with my family at the next one.

So, although it's probably annoying for many of you who really are struggling with this disease in your life, at least its just in one thread, as Vickim stated. And the more people that visit this site and talk about it, the more awareness there will be. The more awareness there is, the more likely a treatment/cure will be found. Just my thoughts.

 

[olly]

Oh pleeaassee not this again:roll:
Don't get everyone started.
Its here...read it,ignore it,deal with it!

 

[ottawa girl]

Over the years, it has been a helpful sub forum for many people. The majority of the DIHALS seek information, reassurance and support as they navigate the testing/waiting/worrying period. Sadly, not everyone has a supportive family and/or a network of friends in whom they feel they can confide. Most, and I repeat, most people move on, although, as you have noted, there are also people suffering from health anxiety who linger a little longer. There's also a significant number of undiagnosed members who, through no fault of their own, and despite their best efforts, wait years for a label to be affixed to their ailment. For these long suffering people, this forum can become a safe place of sorts where they seek and lend support from others in similar circumstances. Finally, there are trolls from time to time, but they are usually identified rather quickly.

It is not the forum's goal to diagnose and/or dispense medical advice, but rather to support all members in all sub sections. Additionally, there's our goal to spread awareness about ALS and this particular sub forum serves as a vehicle to disseminate information.

I agree "wow" :shock: is often an apt description of some threads. Participation in the DIHALS sub forum is not a pre-requisite to membership here.


I wonder if this should be a sticky...

 

[vickim]

Oh yes, girlfriend. Make it a sticky. You rock.

 

[olly]

STICKY,STICKY ...AND MAKE IT QUICKY:grin:

 

[seaside]

I would like to offer the following amendment to the proposed sticky.

Of the 2000 people who started threads in dihals . It is estimated only 6 were eventually diagnosed.

The numbers suggest this but I would like to get the idea across. This is very rare

 

[Jeff Long]

So do I get a prize for being one of the six?! Sure would have been nice to slug off outta here with those other 1,994 knuckleheads!

 

[kiwisally]

Good addition Joe but it sure seems like a lot of aggravation and drama for 6 + or - a few. Just my opinion but I'm not one of the 6 so really can't make the call. And before anyone starts restating the obvious for my benefit I understand fully well that the DIHALS section can just be avoided....just as easily as not getting one's knickers in a twist over any post on the forum can be avoided.

 

[olly]

The can of worms has been opened....there wriggling out...told you so

 

[vzandt]

.? Why rude?

 

[kiwisally]

What Olly? It's the DIHALS section after all. No one has to be here. :wink:

 

[olly]

Wriggle Wriggle Wriggle........like to bite the fat ones heads off,suck out the juice and throw there skins away....