Shawnamarie Weatherford

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MuonOne

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glupavomomiche, I was wondering if you could provide a status on Weatherford's experiences with the pacer?

Also, your 'screen name' is extraordinarily unusual: . . . “Glupavo” (neutral gender) means “silly” and “momiche” (feminine) . . . really?

Are you concerned whether you have ALS?

Thanks for any thoughts you have to offer.
 
I'm confused... shouldn't this have been a personal message?

FYI, I feel very put on the spot, attacked, and confronted, and quite frankly, don't appreciate it. If you didn't intend for your post to sound that way, then I apologize in advance... perhaps next time you could more carefully consider the wording of your questions to avoid future misunderstandings.

About Shawnamarie Weatherford... don't know. Haven't spoken to her in a long time. Feel free to contact her on FB to ask her how she's doing with it. She did volunteer to talk to anyone about it should they message her on FB, as I indicated the first time I mentioned her on a thread in the forum.

As for my screen name... why do you have such a problem with it? Is it really bothering you THAT bad? If you desire to know the story behind it, you can read about it on my blog. The link is on my profile.

Am I concerned whether I have ALS? What the h e l l kind of question is that? You are REALLY out of line on that one.
 
I agree with Sarah, why are you calling her out like this? You posted in the Research news section under the pretense of asking a question about a diaphram pacer, which I am not sure why glupamomiche would nead to address the status of another member, but then you went on an irrelevant and ridiculous tangent.

Not sure what the deal or your angle is but I hope that this thread is deleted.

Your other question about whether or not she has ALS is totally out of bounds. I suggest you back off.
 
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AND if you were up on things on FB, you would know the trouble she(ShawnMarie) has caused there. She has removed all traces of herself from FB, the only thing still on there is a page called

https://www.facebook.com/pages/Shawnamarie-Weatherford-is-an-Art-Thief/170438386406992

She will probably try to sue me for posting this. A wonderful bunch of artists have started a site to sell there "original" artwork with all proceeds going to ALS charities.
 
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Wow. First off Muonone, you really must have too much time on your hands if you are taking the time to translate names. Second, yes you were way out of line unless you had misinterpreted a thread Sarah started, poking jabs at all the lemmings we have been having in the D I H A L S.

Sarah, please send me a visitors or pm tomorrow to remind me to read your blog, please. Its too late tonight and I will forget by tomorrow. But with his translation posted above, doesn't it mean silly girl? As in, you like to have fun and joke around,

Thank you Ted and Sadie for protecting our family member. Its nice to know when someone backs us up!
 
Why would you ask if someone was "concerned" if they had ALS? That is absurd!
 
I can't help myself....MuonOne you've been a strange bird from early on! What is your interest on this forum as a "researcher"? Are you conducting research as a result of an association with an accredited university, company, etc.... or are you just here for kicks and grins? Your post to Glupa a/k/a Sarah makes me question any level of intelligence you may possess? Just a thought from a CALS who detests stupidity and/or a lack of sensitivity by certain individuals in their posts to members on this forum who are affected in some form or another by this damn beast of a disease! Just saying......

Ruth
 
MuonOne - been 'debunked' and debated several times on PLM. Just get lost!
Shawnamarie - I was told about some kind of scam...others may know details.

People are suffering and dying here, I am sick of these w*****s!
 
I worked with Shawnamarie in Capitol Hill for the ALS advocacy days. She is real, kind, and very young. She made a wonderful impression on our congressional delegation. Her diaphragm pacer is working, but the disease is progressing. I can't speak for her, only that I observed her as brave, smart and kind.

H
 
THANK YOU for the support Ted, SadieMae, Toto, CJ, Kiwi, Ruthie, and Dani! I really appreciate it! Y'all are the best! :D
 
Muonone shows up on ALSTDI forums constantly to annoy and insult desperate people.
I don't understand why we give him so much attention. That what he is seeking. He (or she, or it) is a horrible creature, psychopath and loner who has nothing better to do. Let's ignore him completely.
Masha1
 
all: wow, so much commentary on a simple message . . . .

glupavomomiche, I don't use private messaging to avoid 'insider' issues that could possibly develop. I asked you about Shawnamarie Weatherford because I learned of their existence due to posts apparently made by you. I wondered if your screen name were native american, but found the remarks I posted from a google internet search . . . id est . . . search your screen name using google, that is what will show up . . . it isn't what I thought of, its what I found. I wondered if you knew . . . but more importantly I wondered if it is native american? I had tried to find Shawnamarie Weatherford on facebook (there was some information there once), et alia, hoping to learn of their experiences with the pacer but it appears that despite suffering from ALS, Shawnamarie Weatherford has been completely hounded off the internet. Regarding your involvement in ALS, many patient's have care providers and sometimes the patient's data shows up under the care providers account. People who use these web sites usually are quite open about their medical problem even though I recommend that they refrain from disclosing personal identity information. I asked because I had a follow up question, id est . . . what your opinion of the pacer might be . . . .

TedH5, I am not calling anyone out, I am wondering what happened to Shawnamarie Weatherford. glupavomomiche said Shawnamarie Weatherford was their friend, so I thought they would know. The pacer is an active research issue . . . at present it is the only 'treatment' with a level of FDA approval, virtually all patients offering favorable reports of their personal experience and scientific data that suggests it helps. The only other such treatment that I know of is riluzole but patients find its benefits imperceptible. In my experience, its a very common question on these forums whether a member is a patient or a care provider . . . you are the first I have ever encountered to suggest that such a question is untoward. Quite often, such as at this moment, the "Do I have ALS? Is this ALS?" is the most popular forum of this site.

sadiemae, I don't think Shawnamarie Weatherford placed that page there. Copyright law is often misunderstood . . . though I am not at all aware of the particulars of this case, there are very big cases under active litigation. I can only suggest that you avail only your own material on the web unless you have the approval of the material's exclusive rights holder.

Toto's Dorothy, I try to be more sensitive members of disadvantaged groups. Does "D I H A L S" mean 'don't I hate amyotrophic lateral sclerosis?' and why do you think I am a 'he?'
. . . as previously indicated, its not my translation.

brooksea, ibid TedH5 and . . . some people don't know whether they do or they don't.

kiwisally, I answer your question later in this post . . .

ruthiep, ibid kiwisally and . . . I think my post was significantly misunderstood.

Danijela, While it is surprising what little people know about copyright law, what if there was no scam: what has happened to Shawnamarie Weatherford?

hjlindley, thank you so much for this news, did you notice whether Shawnamarie Weatherford has a care provider; when I was able to find some information about them, I could help but feel that they were on their own with this disease . . . can you imagine that?

PLEASE DON'T BELIEVE EVERYTHING YOU FIND ON THE INTERNET!

ruthiep, kiwisally . . . more than ten years ago I began advocating the use of the pacer in patients who have ALS (when everybody said it wouldn't work) . . . it has since become a research issue that is approved by the U. S. FDA. Another of my observations was recently affirmed by Scientific American and Nature magazines - I understand these journals to be quite reputable. As near as I can tell, the pacer has an excellent, near perfect reputation. I am very interested in any remarks by any person regarding this treatment in relation to ALS. I am a graduate student with advance standing in computer science and physics, in want of a Ph.D..

I hope I have clarified any misunderstandings that unfortunately developed.

If there are any further questions, I will be happy to respond to them.
 
Wow, strange questions indeed, and frankly, why would someone who has a diagnosed of ALS be asked if they were "concerned if they had ALS"?

Good to know that others will jump in and help! :)
 
HelenL, sometimes information provided is not about themselves but about their ALS patient. My lengthier reply is in process.
 
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