Work in progress Need your input thread promotion (dihals)

Status
Not open for further replies.

David

Moderator
Joined
Apr 24, 2003
Messages
353
Reason
Diagnosis
00/0000
Country
CA
State
ON
David, thank you for addressing the DIHALS issues. I frequently reply to posts there because I know what horror I went through for nearly a year. After my diagnosis I was even more horrified to read my initial posts. They sounded like an anxiety-ridden crazy person. I think we have to tread lightly with new people and, frankly, I've seen initial replies that are much too abrasive for people who are terrified. I'm not talking about the ones who come back for months and years after seeing a neurologist. Tough love has its place here, too. It's just that sometimes it takes more than a few posts and replies to get enough information.

EDIT: Mike deleted the post to which I referred. FWIW, I agreed with him and gave a quite lengthy reason why.
I agree treading lightly is important and not everyone has the patience for it. That said, being blatantly rude from any member to any member is unacceptable in any forum. New members or old. If a member doesn't have the patience for the DIHALS section they should "ignore that section" and focus on PALS/CALS (that's the feature I'm hoping to implement in the future).

It only makes sense that this being a forum for PALS/CALS that PALS/CALS can choose what areas of the site interest them. It might be as simple as allowing members to choose what forums are included in their lists, and if needed, a way to hide forums of their choosing. Maybe some people don't want the "Off Topic" to clutter their forum home because they never use them.
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
67
Reason
CALS
Diagnosis
09/2017
Country
US
State
SC
David,

As a CALS from my initial forum registration, I've never had an strong interest in DIHALS and even though most of the new posts originated there, I could bypass them with a little effort in the old forum software.

However, what I found difficult to rationalize was the name - DIHALS. It essentially invites people to ASK for a diagnosis ONLINE, which, in general is very risky at best, and for ALS is absurd. We here all know it usually takes 2 neurologists and a boatload of testing to diagnose ALS in person, yet the name DIHALS implies it can be done via posting some symptoms online.

May I suggest, instead trying to manipulate the software, a name change. DIHSALS - Do I have symptoms of ALS? or SALS - symptoms of ALS? These names (or something similar) should at least temper the expectations of posters and give the Mods a strong basis for "tough love"; i.e., "we can comment on your symptoms, but only a qualified neurologist can tell you if you have ALS".

My $.02

Ken
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,953
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I agree about a different name. Not SALS though. sALS means sporadic ALS in the ALS world. Sporadic is what most here have. It means not familial or genetic ALS but ALs that occurs apparently randomly with no family history
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,523
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Maybe even a strong disclaimer under the sub-forum title indicating that we are unable to tell a person whether or not we believe they have ALS. Also, I operated a forum that made anyone who registered read certain material and then check a box that they had. That could, at least. direct them to the sticky we're constantly asking them to read first. "Read First Before You Post"

Finding a good name presents a challenge. Maybe we can make suggestions.

"Questions from People Who Have Not Been Diagnosed but suspect they Might Have ALS"
 

David

Moderator
Joined
Apr 24, 2003
Messages
353
Reason
Diagnosis
00/0000
Country
CA
State
ON
David,

As a CALS from my initial forum registration, I've never had an strong interest in DIHALS and even though most of the new posts originated there, I could bypass them with a little effort in the old forum software.

However, what I found difficult to rationalize was the name - DIHALS. It essentially invites people to ASK for a diagnosis ONLINE, which, in general is very risky at best, and for ALS is absurd. We here all know it usually takes 2 neurologists and a boatload of testing to diagnose ALS in person, yet the name DIHALS implies it can be done via posting some symptoms online.

May I suggest, instead trying to manipulate the software, a name change. DIHSALS - Do I have symptoms of ALS? or SALS - symptoms of ALS? These names (or something similar) should at least temper the expectations of posters and give the Mods a strong basis for "tough love"; i.e., "we can comment on your symptoms, but only a qualified neurologist can tell you if you have ALS".

My $.02

Ken
I like your input - thanks for taking the time to spell it out so clearly.

We'll definitely look at a name change for the forum title.

As for the acronym, it's simply a way for us here to be able to discuss the topic without having to write "Do I have ALS? Is this ALS?" every time we want to refer to that forum category.
 

David

Moderator
Joined
Apr 24, 2003
Messages
353
Reason
Diagnosis
00/0000
Country
CA
State
ON
Maybe even a strong disclaimer under the sub-forum title indicating that we are unable to tell a person whether or not we believe they have ALS. Also, I operated a forum that made anyone who registered read certain material and then check a box that they had. That could, at least. direct them to the sticky we're constantly asking them to read first. "Read First Before You Post"

Finding a good name presents a challenge. Maybe we can make suggestions.

"Questions from People Who Have Not Been Diagnosed but suspect they Might Have ALS"
You're not seeing the warnings because you're a long term member; but we do have notices everywhere, when they register, by email post registration, including this posted across the top of every forum page that isn't the DIHALS section:
  • Refers them where to post
  • Gives them a link to the posting rules
The posting rules were already sent to them by email when they registered.

You can lead a horse to water and all of that...

Plus, regardless of disclaimers and warnings, name changes, people will still do what they're asked not to. Hence, hopefully, a system can be made that at least reduces the fuss and bother and any nuisance caused, while also allowing PALS/CALS to avoid all of if if they so choose.

17025
 

Attachments

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,981
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
I just want to say that the changes you have made will be freaking awesome once things settle, people get used to it all, and the very few wrinkles are ironed out.

I think that what you are aiming for with the DIHALS is great. I often don't read there at all, but would be very happy to respond to some genuine stuff if I have something helpful to say. I often do a quick trawl to see if there are any Aussies there as I can contribute local knowledge so to speak.

You are right, no system will be perfect, change is hard, the mods probably have it hardest in all the change, but this is taking us in the right direction. Again THANK YOU for your perfect intentions :)
 

David

Moderator
Joined
Apr 24, 2003
Messages
353
Reason
Diagnosis
00/0000
Country
CA
State
ON
I hope so - a little too much all at once on my part. Difficult on some members with accessibility issues which I'm trying to resolve.

Near impossible for most of the mods given all that's changed so quickly; I'm at a loss myself on how to find information and look things up. Hopefully in time all these things can be addressed/resolved/improved.
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
228
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
I completely agree. I'd like to see more input from a variety as well, but I also know that many have pressing matters to deal with, and that's fine too.

For any that find the back-and-forth in that section exhausting, but difficult to ignore, then a way to "ignore that section" of the website would be helpful. Check the box, set and forget, and the community becomes a community focused solely on PALS/CALS from their browsing perspective.

Member's that don't want to spend their energy on that section won't have to see messages anywhere on the website from that section. Members that do want to participate, won't set that option on and are free to participate.

Win win? Seems good for all.

What am I missing?
Hello
Thanks loads for the work to make the forum better. Two things I appreciate the most in the new system are that the photos are easier to see and that you can see what thread the posts belong to. That enables me to skip dihals posts when I don’t feel like it. Before it only appeared on the computer now it appears on the phone. Thanks for your work
 

David

Moderator
Joined
Apr 24, 2003
Messages
353
Reason
Diagnosis
00/0000
Country
CA
State
ON
That enables me to skip dihals posts when I don’t feel like it. Before it only appeared on the computer now it appears on the phone. Thanks for your work
That's good to hear - the site should be much friendlier on those smaller devices. That was a big reason for the move.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,523
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
David,
I can't thank you enough for the many hours you have taken it this upgrade.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,839
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Re the DIHALS title, I know we've noodled on this before. Ken, Kim and all make good points.

What about "Is This ALS?" or "Sound Like ALS?" Promises less, short, still captures the content, I think. Or simply "ALS Symptoms?" I would want to keep it a question because it is a question, and when we address it, it's still technically a question, if that made sense.
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
67
Reason
CALS
Diagnosis
09/2017
Country
US
State
SC
With the brain power on this forum, I'm sure a good title will eventually come out. I'll throw out a few more as a catalyst:

This is the ALS Forum, so don't think we absolutely need ALS in the name. With that in mind:

Discuss My (or Your) Symptoms
Post Your (or My) Symptoms
Symptom(s) Feedback
Symptom(s) Discussion & Review

Ken
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,953
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I think I like ALS symptoms with a question mark. Or are these ALS symptoms? Or maybe concerned about ALS which is more inclusive for the people who really need that subforum - those who have been told by a neurologist ALS is likely. Often they are not so much into their symptoms as asking about emgs and such

I get your point Ken but I wonder if it might confuse new PALS. If they don’t read the description they might think it a place to discuss their symptoms

I am glad you raised this issue though Ken because I do think we can work it out
 
Status
Not open for further replies.
Top