Fail to understand...

[Clearwater AL]

Maybe it's just me but... I fail to understand when a new PALS member is reluctant to disclose what
Neuro facility, Neuro Center, ALS center, maybe the Neuro's name. Often that info is helpful when
they write concerning a second opinion. We have very very knowledgeable members who have
access to the locations of accredited ALS centers in the US and elsewhere. They go on for pages even
when it's been suggested they get a second opinion. If they do... we have no idea who or where.
Was it an accredited ALS center/facility?

Maybe another future PALS in the close vicinity of their location might find that info helpful.

Again, maybe it's just me. Whatever...

 

[EricInLA]

Al, there could be a number of legitimate reasons why people are reluctant to give specific information about their personal situation. Some are expressing an opinion, direct or implied, about the care they have received from a neurologist, and may be fearful that this opinion gets back to the provider. Others may simply want to maintain some degree of privacy over their situation while seeking helpful advice/information from this community. These people are scared, so I don't think we should fault them for choosing a reasonable degree of anonymity and privacy, nor do I think we should give them the third degree about their who they've seen and where they've gone for their care, other than suggesting they go to a neuromuscular specialist.

These people are facing the perceived possibility of having a terminal illness. We veterans may not remember just how scary it is when first confronted with that prospect. Lets give them a little slack.

 

[Clearwater AL]

Eric, you wrote.... "nor do I think we should give them the third degree."

It's not the third degree... it's information most PALS and CALS have shared
even Mods. New members filled out the info list to become members.
Security concerns? Any web site can be breached and the site might not
even know it's happened.

"and may be fearful that this opinion gets back to the provider."

Well, if all is on the up and up... what difference does it make?
I'd bet my Neuro (and other ALS Neuros take interest in this forum too)
I'd also bet Dr. Bedlack is aware of the forum too. We don't know who
is really behind an Avatar (user name) Nobody has to give an honest
name/answer to become a member.

Whatever... Maybe you have shared your neuro info as I have... clinic
name, city and neuro name. Thought it might help others... nothing
to hide.

Again, just my opinion as you have yours.

 

[wishmobbing]

Al, I share your astonishment about new members not being open about diagnose and clinic details.
I'm also surprised many here log in with their real name or parts of their real name. I for example prefer to have no very easy link to my reallife persona so I can be completely open online.
Rationally I get that everyone's minds and emotions work differently and Eric had some good points why people might be reluctant to share info. Some newly diagnosed have a hard time even telling their friends and colleagues in real life. I can understand it but I don't feel it.

 

[KimT]

We've had moderators who don't even share their real names. If a person wants privacy, he or she should get it. It's better than spinning a tall tale and naming various centers and neurologists. When I was first diagnosed I probably shared too much information. One former CALS sent me a FB friend request and "mentioned" that he checked me out on rate my professors LOL. Good thing I had excellent reviews.

Anyway, most people eventually give their general location and, really, that's all we need to help.
I know some PALS who have not shared their diagnosis with friends. They come here for support. If they stay long enough, they will probably share.

 

[Clearwater AL]

Ok, when I was first diagnosed Ann was with me (one left her crying) and all that followed,
it was something we saw (I saw needed to be shared with family who may become MY support
group in the future.) I also find it hard to understand why a new PALS would be reluctant to
share with family. Where are they when the family eventually does find out "Why didn't you tell us?"
Yea, I put it all out... an ortho doctor who referred me to a brain specialist who referred
me to a neurologist who retired then he referred me to Wake Forest, then working with
the PVA and the VA. TMI ?

Ok, I'll try to understand " different strokes for different folks" (from an old song).

Best I can leave it.... my opinion for what it's worth. Some may disagree. For this sub -
forum... topics to be discussed, views to be exchanged and civil debate. And "Rants and
Raves."

I hope.

 

[NekoiStar]

Forgive me for coming into this conversation.

I can understand how you feel on this overall stance Clearwater. I've recently been diagnosed, and even back when it was "Suspected" I had started to reach out to friends, family, caretakers, and this forum group to see what I could do and how I should get help. I'm in the category of being as candid as I can without putting too much out there that could potentially compromise myself or my loved ones. So far it has been a worthwhile endeavor as I now know so much more about subjects involving disability, insurance, and medical care, and even have started to plan future renovations at my dad's place to become more handicap accessible for me in the future.

I'm younger though, 37 (soon 38), and my generation is used to reaching out and communicating with others to some extent. A lot of folks who do get ALS... from my viewpoint/statistically tend to be of an older generation which like my Uncle first told me 6 months ago "Don't own it" as an old Native saying in which if you deny its existence it won't affect you. Even my Grandmother, who passed away from cancer 4 years ago was of that same thought process, which is why she never sought treatment to see if it could be fixed before it killed her.

And then... you get some people, who are scared, ashamed, or prideful to let go of the fact that they are going to be losing some of their perceived "Independence" in the form of work, self-reliance, or just scared of being a burden to others.

I'm a bit in categories 1 and 3 here... I'm not afraid to ask questions, to learn, and get information where I can and use it to my advantage, but I'm also having a very difficult time with the concept of someday (hopefully not too soon) being unable to do the simplest things physically.

But despite all of that I will always be willing to talk and share what I have learned and will always do my best to show kindness and respect to the wishes of others.

 

[Nikki J]

People certinly don’t owe us identifying information and what people view as identifying varies. I think some as actually naive as to what can identify them. Some people truly have no issues with putting out their whole identity and that is fine too. Like Kim I do wish people who want advice would disclose their general location. It certainly doesn’t have to be city or in most cases even county and I have no issue with someone saying they live on Cape cod when they are really in Boston or Worcester ( places in Massachusetts all) but if someone needs resources it is really helpful to know where they are. There is probably someone with local knowledge. Also the people who misdirect can waste our time. I have answered location specific only to have the person say oh I really live….a different part of the country or even a different country or continent. If people don’t ask for advice and are here for another valid reason then I don’t care about location

 

[KimT]

Good point, Nikki.

One issue I had with a new PALS friend was that she didn't want her employer to know until she was ready. I totally get that she would be reluctant to share information, especially since people at her place of business were wondering why she was limping. She wasn't ready to stop working so she made up a name on a Facebook group.

Like I said I'm the type of full disclosure and probably tell way too much about my life to everyone. It has never harmed me. I'm just used to being in the public eye on boards, in the community, and as a faculty member.