Nurown

[affected]

Dee Dee please don't leave, I've felt so deflated like you (but in a CALS way) at times here too and nearly left. I personally value you here, and I know it is hard when knocked down that way

 

[vltsra]

Dee Dee, I'm sorry you took Laurie's comments that way. I didn't get from her comments that she was trying to destroy your hope. Instead, Laurie also mentioned and provided a link to other trials that are ongoing and encouraged PALS to look at them. Nurown may or may not help every PALS. You may be one of the fortunate ones who would gain great benefit from the treatment.

As a CALS, I will tell you that we suffer too. We are called upon to sacrifice everything for our PALS. We are also required to give of ourselves physically and emotionally while watching our PALS struggle with this awful disease. Neither path is easy.

I will echo Kevin's sentiments in that I appreciate so much that Laurie has remained on the forum despite her husband's passing and has provided invaluable advice and help to others.

 

[Clearwater AL]

Golly, I have had my differences with Laurie (Igelb), I’ve sent
messages and reports that probably didn’t go over well.

I have often posted things she quickly rebutted in a lengthy reply.
I let it go.

Yes, often she uses her authoritarian tone of text that had my
fingers on the key board but… I let it go. Sometimes I have
wondered if she has OCD when it comes to this Forum.
(If so… it sure hasn’t hurt.)
I say that in a light joking manner.

Text does not reflect tone.
(Tone of voice example. there are two tones you can use
asking someone a question text doesn’t reflect…
“When are you going to fix that door?” Terse and or angry.
Or, “When are you going to fix that door?” Soft gentle query.)

But… when it comes to those who need help with a BiPAP or
Trilogy who for some reason, can’t or don’t consult with their
provider… she is the “Go To Person” for settings, adjustments
or concerns. And many other complicated technical, medical
(medicine) and equipment topics too.

Laurie clearly does the research, the reading, she’s well studied,
But, she either copies, takes and keeps notes or has one hellava
memory. She is very valuable to this Forum.

And (big AND) Nikki too… same with her, we’ve had our
differences and I’ve sent messages and reports that didn’t sit well
with her. And ShiftKicker too. Where would we be without them?
*Jokingly in a previous Threat I asked Nikki if she was really a
Neurologist or a lawyer incognito. So knowledgeable.

Wrote all that to say this… I have ranted numerous times this
is a Forum! Hopefully it’s a place for debate, stern opinion,
banter, back and forth and room for outright disagreement.
And... apologize if you get something wrong. I have.

Dee, please don’t leave, and don’t be reluctant to comment following
a Moderators comment. They don’t expect to be the last word
on a Thread (I hope). Well, you have. For others, if your typing
skills, word skills aren’t as good as others… type it the best you can.
Say it.

Once again… it’s a forum. Participate. Don’t worry about not
getting a “Like”… I sure don’t.