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f13.net General Forums => General Discussion => Topic started by: Slayerik on December 14, 2011, 07:36:36 AM



Title: Neuromyelitis Optica - #%^& You NMO!
Post by: Slayerik on December 14, 2011, 07:36:36 AM
To sum up, my fiancee was paralyzed from the waist down via a Neurologic disorder that caused Transverse myelitis. She is the mother of our 18 month old twins and in total we have 5 children which I now have the lion's share in taking care of.

Thanks so much for helping out.

Amazon email: ethanharris@gmail.com






I know there are plenty of smart folk on these here boards, and I was wondering if anyone has any experience with this syndrome. My girlfriend has been afflicted, and is currently paralyzed from the waist down. Just fucking out of the blue. They are starting her on certain steroids and starting some type of plasma transfusion/replacement or some shit.

Just wondering if anyone has any life experience with this. I have read about all I can find on it, and it seems she should recover fully eventually. Some fucked up shit though.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: 01101010 on December 14, 2011, 07:47:43 AM
Only time I have ever even heard of this nightmare was when I had to get my flu shot. Even then, it was
nurse: "Have you ever had Guillain-Barre Syndrome?"
me: umm, what?
nurse: "nope, you'd know what it was if you had it"
me: ok then.

Looks horrible though. Good luck.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: IainC on December 14, 2011, 07:51:21 AM
Good luck with that. Never heard of this thing before, just read up on it and was horrified.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: veredus on December 14, 2011, 08:08:19 AM
If I remember correctly from the one pt I saw with it, the plasma thing is basically like blood doping. I think they take out the RBCs from the plasma and put those back in by themselves or something like that. I'm just a Respiratory Therapy student so probably only about half right since not my area of study really. Our pt ended up on a vent (which is why I saw the person) but also ended up recovering fine. Was in the hospital for a long time though. Good luck with everything and make sure to give her lots of emotional support.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: K9 on December 14, 2011, 08:35:49 AM
Wikipedia article for the lazy (http://en.wikipedia.org/wiki/Guillain%E2%80%93Barr%C3%A9_syndrome)

I hadn't heard of this either, and it doesn't sound at all nice. My condolences to your girl, I wish her a swift and complete recovery.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Nebu on December 14, 2011, 12:08:50 PM
To be honest, the only thing I know is that I had a question about it on an exam in medical school.  I am very sorry that she is going through this and hope that you're able to find an expert in your area. 


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: ghost on December 14, 2011, 12:16:13 PM
Oh fuck, man.  I'm sorry to hear about that.  It usually isn't life threatening (Edit: if you call being on mechanical ventilation "not life threatening"), but it is going to throw a big monkey wrench into both of your lives for a while.  Sometimes the after effects can last for years.  It is likely due to an autimmune response against some foreign antigen-  probably a virus.  Tends to go with viral infections.  I hope she gets better quickly.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: HaemishM on December 14, 2011, 12:26:39 PM
I've heard of it from House - and if House lists it as a possible diagnosis, you know it's likely fucked up. Other than that, I have no experience. Sorry about your girlfriend, man.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Selby on December 14, 2011, 05:44:41 PM
Co-worker's daughter had it a few years ago.  It didn't progress *too* far and she made a complete recovery, I believe she was down for like 3 months and it came on suddenly.  I don't recall her needing to be on a respirator or hospitalization, but then my coworker was tight-lipped about it all when it happened..  Last I heard she was doing very well for a typical teenage girl.  I had a similar episode when I was 12 that resulted in rapid onset paralysis from the waist down as well, the doctors suspected it but since it never progressed beyond that and went away after a week in the hospital on all kinds of drugs, they didn't diagnose it as that.  They believed it was a rare strain of polio, which resulted in a horrendous flu that afflicted my back and had me in pain for 5 days straight after the numbness went away.  I eventually had to learn to walk and write again as my coordination and balance was completely hosed afterwards and as a result I can write with my left hand and throw with it better than my right.

Good luck with this though, it's pretty rough having to deal with it.  The good news is that in all but severe cases she will make a full recovery after some time (which can vary depending on the body's response to it) which while it makes the disease scary, makes it easier to take when you know the chances of recovery are extremely good despite how much it sucks going through it.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Raph on December 16, 2011, 10:49:40 AM
My uncle had it, and it knocked him down for a good six months. :(


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Tale on December 16, 2011, 01:24:47 PM
I think one of the senior producers in a TV newsroom I used to work in had Guillain-Barre. Or at least, before I knew him, he had had a spontaneous lower body paralysis that had put him in a wheelchair, returned to work, and everybody used to ask him about his progress.

I know the broadcaster/musician Lucky Oceans had it. He wrote about it here (http://www.abc.net.au/health/yourstories/stories/2009/03/09/2509436.htm).


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: sinij on December 16, 2011, 09:18:50 PM
I am sorry to hear about your bad luck.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 18, 2011, 07:55:33 PM
It's not Guillain-Barre, been ruled out. Waiting on some tests to come back, and she is slowly regaining some function. Gonna be a long road no matter what it turns out to be. Now at the University of Michigan and we'll see if they can figure it out. Pretty damn tough as a father of five with 17 month old twins. Fuck it, I'm a rock.

LIKE A ROCK, I WAS STRONG AS I COULD BEEEEE


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Selby on December 18, 2011, 08:04:00 PM
Waiting on some tests to come back, and she is slowly regaining some function.
This is good news.  And yes, long road indeed.  But regaining function over a shorter period of time is the best you can ask for in such a terrible situation.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 18, 2011, 08:15:51 PM
It's pretty wild, multiple hospitals and some pretty damn good Neurology teams haven't been able to figure it out. Could be something called NMO (scary as fuck too), but her total symptoms don't really ad up to it. My basic hopes are that it is

A. Non-reoccuring
B. Recoverable

It already seems to be recoverable, though it's gonna take some serious PT to walk again, I just know it.

Taking this another direction, it honestly made me believe less in god then I already had. Any god that would do this to a woman who doesn't drink, smoke, and actually is an active and great mom (hell, she is in Karate with all 3 big kids) is a motherfucker and can kiss my ass. Everyone says they are praying for her, and oh god is great and asking god for miracles. You know what? She'll beat this on her own, with a fuckload of work...and it won't be glory to god.


Inside, I am thankful this wasn't a car wreck or something like that we know would be permanent. Trying to stay positive.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Viin on December 18, 2011, 08:16:37 PM
Glad to hear she's doing better. Get family to help with the kids!


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 18, 2011, 08:19:24 PM
Glad to hear she's doing better. Get family to help with the kids!

Indeed, family helped all weekend with them so i could be with her the whole time.

It's just fucked up, man. So much on my fuckin shoulders now, and for a long time.



MAN UP


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: K9 on December 19, 2011, 10:23:14 AM
It's probably due to mould in your walls, have you considered suing your landlord?


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 19, 2011, 10:32:18 AM
Where's Nerf when ya need him for legal advice!?!?


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: NowhereMan on December 19, 2011, 11:22:57 AM
Best advice I could give is stay positive, weak as that might sound. Whatever she's got is either recoverable or it's not and if it is she's going to benefit most from someone encouraging her that she just needs to work at it. And remember if you need to bitch about stuff, do it in gen disc and save her the earache  :awesome_for_real:


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Sand on December 19, 2011, 11:43:46 AM
So much on my fuckin shoulders now, and for a long time.



MAN UP

5 kids and 17 month old twins? Maybe she decided mommy needed a vacation and bingo short term paralysis while dad has to deal with all the crap for awhile?  :grin:



In all seriousness hope everything works out for the best. This had to have been scary as hell.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Cyrrex on December 19, 2011, 10:12:27 PM
Pretty sure that, given Slayerik's alleged prowess, those five kids are from 5 different mommies.  Including the twins.

Hang in there, dude.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: bhodi on December 20, 2011, 07:44:29 AM
Pretty sure that, given Slayerik's alleged prowess, those five kids are from 5 different mommies.  Including the twins.

Hang in there, dude.

And, he's not even in the same country anymore.

I kid, I kid.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 20, 2011, 09:29:46 AM
Ok, I got a well needed laugh out of the last 3 posts. And now GBS is ruled out. They actually still haven't fully diagnosed the condition yet. Very similar to a nasty fucker of a syndrome:

Neuromyelitis Optica - http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm

but she has no vision problems.

Luckily, she has a strong spirit and will to beat this. She moved her toes for the first time today. They are taking an aggressive approach to knocking down the inflammation of her spinal cord. We can hope this is a variety that is a single attack, not the re-occuring type.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Zaljerem on December 20, 2011, 10:00:24 AM
She moved her toes for the first time today.

That is great news. I'll be stopping in to see her again tonight after work.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Azazel on December 20, 2011, 01:04:21 PM
Fuck man. That's shit. I hope it works out for the best and that it's 100% recoverable. There's not much else I can say.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Ironwood on December 21, 2011, 08:32:03 AM
This is like an episode of House without the hotness.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 21, 2011, 09:00:36 AM
Na man, my girlfriend is hot ;)


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: HaemishM on December 21, 2011, 11:08:06 AM
Pics or it didn't happen.  :awesome_for_real:

Seriously, though, I hope everything is ok.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 21, 2011, 11:59:56 AM
They are now starting cyclophosphamide tomorrow.  This is a chemo-therapeutic agent.

There were some serious fuck-ups in the whole thing, from a couple of different health systems. The first ER we went to sent her home even with her not being able to walk. Said "she didn't have her primary care physician in their system." Refused to do an MRI. Had they done due diligence with her care, and not just tried to empty an ER room my GF may very well have not have been paralysed. Then at the 2nd system they were at, they did not take her seriously claiming it was a psychological thing. I even saw the note saying that the Dr. was almost certain it was not Neurologic. Were very slow getting an MRI together, put it off an extra day because they didn't have an anes guy available (she was in extreme pain and needed sedation). Everything I have been reading says TIME IS (spinal) CORD. After they saw the results of the MRI, the Neurologist actually came in and apologized saying 'she had everyone fooled'.

Might end up being some Nerf-esque drama in the form of a lawsuit or two.

(http://a8.sphotos.ak.fbcdn.net/hphotos-ak-snc6/206149_10150261385312955_500522954_7753434_7438044_n.jpg)

There's my girl with a kid that is actually NOT ours.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: KallDrexx on December 21, 2011, 12:11:35 PM
Baby stalker!


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: angry.bob on December 23, 2011, 11:46:07 PM
Quote
There were some serious fuck-ups in the whole thing


I hope she's still improving. Not trying to steal your thunder, but shit like that happens a lot. Two years ago I was sick for weeks and finally felt like I was on death's door and called 911. Paramedics came and basically said "Good job wasting our time, you've got the flu you pussy". My wife and I had appointments for our annual dental exams the next day and I went anyway since I love my teeth. My uncle the dentist asked me if I knew I had an abscess. It was a tooth that had had a root canal and a crown so I wasn’t feeling a thing pain-wise, but it had been going on for pretty much the whole year, dissolved a portion of my maxilla, and was dumping puss and blood god knows where inside of me. Two hours in a dental chair for some dental surgery and I was right as rain. Had it not been for the coincidence of that dental exam who knows what would have happened. I could have died from it.
I guess my point is that nobody knows their body better than the person in it. Most people can tell the difference between some minor bullshit ache/pain and when something is really going wrong. If you feel like something is going on, don’t let people brush you off. I know we’re conditioned to not be a pain in the ass, but in cases like these the only person looking out for you is you. Emergency services are the worst way to get that sort of thing sorted out, because they don’t really have the time, plus they have to deal with people pulling bullshit to get pain meds. Once again, some level of treatment between the ER and the two week wait for an appointment with your GP would be super awesome.
Once again, I hope everything works out.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on December 25, 2011, 04:10:55 PM
She had spent the last month at Neurologists and Urologists and any other ologists that might help her with pain issues.

Thanks, though. She got to spent xmas with our twins and it was tough but really good in the end.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Azazel on January 09, 2012, 04:52:12 PM
Any updates? Hoping for good news...


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on January 12, 2012, 08:46:42 AM
I appreciate ya asking Az...Things were looking well, she recovered a lot of stuff but BAM now she is in bad shape again. Latest MRI shows lesions in spinal cord, brain, brain stem.

It's fucking bleak. Back to steriods, and now going to try an immunoglobin transfer or some shit. They still don't have a real diagnosis. It's crazy. She is trying to stay strong but you work so hard just to get beat back...It's a horrible thing and would never wish it on anyone. She is getting pretty morbid at this point, and honestly how can you blame her? Got all her life insurance and pension stuff sorted. Been a sad couple days. The absolute last thing she needed.

Sorry to be so depressing guys. I'm trying to stay positive but FUCK.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Engels on January 12, 2012, 09:06:01 AM
Sorry for the poor turn of events, Slayerik. Here's my fingers crossed for you and yours.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: 01101010 on January 12, 2012, 09:59:07 AM
The world really does need a real life House.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Lantyssa on January 12, 2012, 01:32:44 PM
It's okay to vent and yell a bit.  Shit is serious.  Thanks for keeping us updated though.

Is it still only affecting her lower body, or has this relapse affected more?


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Kitsune on January 12, 2012, 01:56:05 PM
My uncle who had previously been in perfect health, exercised regularly, ate well, suddenly had problems walking.  Then problems moving his head and arms.  Then problems talking and eating.  Now he's almost totally paralyzed and the only thing any doctors have been able to say is that while it's very much like Parkinson's, it's not typical Parkinson's.  They don't know how he got it, don't know what it's doing, and don't know how to treat it.  Our command of medical science is not as great as we like to think it is, sadly.  But at least in your girlfriend's case they've found something clearly out of the ordinary; that's hopefully enough of a lead to point them towards the means to fix it.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: lamaros on January 12, 2012, 03:03:14 PM
Sorry for the poor turn of events, Slayerik. Here's my fingers crossed for you and yours.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on January 12, 2012, 04:12:55 PM
It's okay to vent and yell a bit.  Shit is serious.  Thanks for keeping us updated though.

Is it still only affecting her lower body, or has this relapse affected more?

Now she is having sight issues and some issues swallowing, though it's gotten a bit better.

It seems to be a separate, new shitty attack. Her lower body is still paralyzed, Waist up has come back ok...with some limited movement down to her thighs.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: MahrinSkel on January 12, 2012, 04:48:02 PM
I appreciate ya asking Az...Things were looking well, she recovered a lot of stuff but BAM now she is in bad shape again. Latest MRI shows lesions in spinal cord, brain, brain stem.

It's fucking bleak. Back to steriods, and now going to try an immunoglobin transfer or some shit. They still don't have a real diagnosis. It's crazy. She is trying to stay strong but you work so hard just to get beat back...It's a horrible thing and would never wish it on anyone. She is getting pretty morbid at this point, and honestly how can you blame her? Got all her life insurance and pension stuff sorted. Been a sad couple days. The absolute last thing she needed.

Sorry to be so depressing guys. I'm trying to stay positive but FUCK.
Have they ruled out MS? I only ask because MRI lesions are normally associated with that, but they normally appear over the course of years.  Are these lesions that weren't present on the prior MRI's, and was it the first with contrast or something similar (ie: Is it plausible the lesions just weren't recognized before)?

There are a handful of encephalitic diseases I know of that can present the way you've related (mostly viruses) along with MS, which is probably why they're trying the immunoglobulin transfer treatment.  I'm not a doctor, I just have had cause to look into this kind of thing.

--Dave


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on January 12, 2012, 06:11:24 PM
I'm not sure it was ever truly ruled out, but it didn't seem like it at all from what the doctors have been telling me for a month.

The initial MRI showed extensive lesions, and swelling over 3-4 segments of the spinal cord (termed Longetidinally extensive transverse myelitis) but nothing really resembling MS (more brain focused I think). One iffy spot in the brain. Now it looks much worse, with brain stem and brain activity along with spinal cord.

EDIT: I hate the word lesion. It's a fuckin' nasty sounding word and way nastier when the mother of your children has them in her brain and spinal cord.




Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Cyrrex on January 13, 2012, 12:02:28 AM
Jesus Christ, sorry it isn't good news.  Hang in there.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Azazel on January 13, 2012, 01:35:59 AM
Fuck man.
I hope it recedes again. Shit, I don't know what else to say. Fuck.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: HaemishM on January 13, 2012, 08:13:14 AM
Sorry to hear it, Cheddar. I'll toss some prayers your way.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on January 13, 2012, 09:32:00 AM
Sorry to hear it, Cheddar. I'll toss some prayers your way.

Cheddarik


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: HaemishM on January 13, 2012, 12:13:38 PM
DUH. That's what I get for looking at goddamn avatars and not names. I don't know why your avatar always makes me think of Cheddar.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on March 01, 2012, 09:14:16 AM
Well, an update for those interested. She is home, but still not walking. Life has gotten a bit harder, but a bit better as well. I am pretty burnt out taking care of baby twins, and now her, and try to work full time (with hour commute each way), and cook/clean/take babies everywhere. I believe I may be the busiest man in America right now (I even have to wake up with her to help her with cath-ing and stuff).

Family support has been ok, but in the end I feel like the world is on my shoulders. She is working hard and trying to regain strength in her legs (she has decent movement in them now). Everyday life stuff is a challenge. One thing I find both of us saying is "can't ANYTHING be easy?"

My occasional breaks I sneak in some Stone Soup Dungeon Crawl, and watch a bit of TV.

Anyway, back to work! (my easiest stretch of the day).


EDIT: Oh yeah, our Honda died at only 230k miles. New motor needed. WOOOO


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Der Helm on March 01, 2012, 09:23:40 AM
Best wishes to both of you and a speedy and steady recovery for her.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Lantyssa on March 01, 2012, 10:32:30 AM
Glad she is making progress and thanks for the update.  You rock, dude.  Hang in there.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Jayce on March 01, 2012, 10:42:25 AM
Man, that is horrible. I thought I was busy helping the wife post partum and trying to work.

If it's any consolation, I feel like a slacker compared to what's on your shoulders. Awesome job and hang in there.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Engels on March 01, 2012, 11:00:08 AM
Rock on Slayerik!


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: MuffinMan on March 01, 2012, 11:03:57 AM
Alright, I'm forming an exploratory committee here. Can we pool together and help Slay? Maybe a maid/cooking service for a month?


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Amarr HM on March 01, 2012, 11:08:36 AM
Best of luck Slay, that sounds like the motherload right there. I hope your wife recovers quickly and things take a turn for the better, try and stay as positive as you can.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Lantyssa on March 01, 2012, 12:28:50 PM
Alright, I'm forming an exploratory committee here. Can we pool together and help Slay? Maybe a maid/cooking service for a month?
If he would like the help, yeah, I'd consider it a worthy cause.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on March 01, 2012, 12:33:21 PM
One thing I have learned from this experience is that if you need help you better ask for it! So yes, anything would be greatly appreciated!

Here is Angie with the babies in the hospital!

(http://a7.sphotos.ak.fbcdn.net/hphotos-ak-ash4/423548_2794549578217_1092758502_32275434_813601775_n.jpg)


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Kitsune on March 02, 2012, 12:27:56 PM
It definitely sounds worthy enough.  Just have to be careful, Paypal can turn out to be dickbags about setting up donation/non-profit accounts if whatever arbitrary hoops they desire aren't jumped through.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Cyrrex on March 03, 2012, 02:03:47 AM
Slayerik's the man.  I'd donate.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: tgr on March 04, 2012, 04:07:39 AM
I'd chip in for a former ultrapolite socialite. :awesome_for_real:


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: JWIV on March 04, 2012, 04:58:10 AM
Good plan muffinman - I'd easily toss in a few bucks.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: MuffinMan on March 04, 2012, 06:00:45 AM
Just have to be careful, Paypal can turn out to be dickbags about setting up donation/non-profit accounts if whatever arbitrary hoops they desire aren't jumped through.
Yea PayPal does seem like they need hoops jumped through, not sure if that is worth it just to have lower fees. 
Quote
•Evidence of tax-exempt status
•Bank statement or voided check in your organization’s name
•PayPal email account
•Contact information
•Description of your organization and type of payments it wants to accept (such as donations and merchandise payments)

Is PayPal the route to go for this? New thread for more exposure? I'm much more an idea man than an executor.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: JWIV on March 04, 2012, 06:36:49 AM
My general vote is anti PayPal, simply because they are jackasses, but whatever is easiest to setup.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Chimpy on March 04, 2012, 06:54:32 AM
I will toss in something, just come up with the place to send it.





Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: taolurker on March 04, 2012, 10:07:14 AM
http://www.gofundme.com/ ?


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Merusk on March 04, 2012, 10:25:52 AM
Silly techhies, over-thinking a problem.

Slayerik, who do you bank with and what other banks are in your region? Simple enough to set up a fund with any one of them by just talking to the manager.   Just like they do for kids with cancer, killed cops, etc. 

But yes, I imagine he'll have to pay taxes on it if it hits a certain level. After all, he's not a non-profit and this would be income. The Accountants can speak more on that.

Paypal has you jump through hoops to avoid the whole money-laundering thing that would be very abused if they let just anyone set-up tax-exempt accounts.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Trippy on March 04, 2012, 11:52:15 AM
Just make an Amazon Wish List. It's a lot easier that way.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Jayce on March 04, 2012, 12:43:16 PM
Just make an Amazon Wish List. It's a lot easier that way.


I'm for that. Do they work like a baby or wedding registry? That would make it easy for anyone to go buy something or contribute toward something.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Trippy on March 04, 2012, 12:54:48 PM
Yup. He can put whatever items are available on Amazon.com on the list and we buy them and they get sent directly to him. If there's some expensive item that he wants to purchase through Amazon he can put gift cards on the list as well so that purchase can be broken up into smaller pieces.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on March 05, 2012, 08:22:02 AM
You guys are awesome.

ethanharris@gmail.com

Got some food stuff and gift cards up if anyone would like to help out! Thanks again for the support!  :heart:

Make sure to pop me a PM or email if you do donate!


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Engels on March 05, 2012, 08:35:37 AM
Then put something cheapish on the wishlist. Seriously, if they can't spare like $30 bucks plus shipping, then they have no business donating jack since they're in worse trouble than you are.


Title: Re: Guillain-Barre Syndrome... $%^& YOU!
Post by: Slayerik on March 05, 2012, 09:03:21 AM
Sorry, I edited that out on you. Yeah, I have a wide range (10 dollar gift card up to 500  :drill: ) just in case :)

and updated thread title.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Viin on March 05, 2012, 09:15:21 AM
I think you need to create a registry (wedding or baby) in order to have stuff shipped to you. Wish lists don't have your shipping address tied to them.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Engels on March 05, 2012, 09:27:34 AM
I think you need to create a registry (wedding or baby) in order to have stuff shipped to you. Wish lists don't have your shipping address tied to them.

That shouldn't be the case at all. Just need to make sure your address is associated with your wishlist. http://www.amazon.com/gp/help/customer/display.html/ref=hp_rel_topic?ie=UTF8&nodeId=501088

Quote
Entering Your Shipping Address
When you set up a shipping address on your Wish List, it will remain confidential, and anyone buying items for you will only see the city and state portion of your address.

To set up a shipping address for anything ordered off your Wish List:

Click the Your Lists or Wish List option at the top of almost any page of our store.
Click on Wish List in the drop-down menu.
Select Show list profile if it isn't already displayed below your name in the left column.
Click the "Update this list's profile" option.
Update your address in the "Ship-to Address" section. You can also update any other information listed.
Click the Save button at the bottom of the page.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Merusk on March 05, 2012, 09:36:32 AM
I'm always amused at the "Buy new and used" tag on food items.  :oh_i_see:

Tho I'd rather send you cash because dude.. I can't in good conscience send you processed food.

RFI:  Diaper size.  Pic is size 4, link requires a choice.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Slayerik on March 05, 2012, 10:12:01 AM
Diaper size 4 , ejharris@umich.edu if you just want to send cash via paypal - list it as a service maybe?

Updated address in Wish list, thanks.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Mrbloodworth on March 05, 2012, 11:22:46 AM
How can one just send you money?


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Mrbloodworth on March 05, 2012, 11:25:07 AM
ejharris@umich.edu if you just want to send cash via paypal - list it as a service maybe?

Quote
Please enter a valid email address in this format: name@domain.com

I Tried Paypal.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Jayce on March 05, 2012, 12:12:42 PM
Tho I'd rather send you cash because dude.. I can't in good conscience send you processed food.

Good call, though I think the Annie's stuff is pretty darn natural.


Not that I want to be responsible for dissuading you from sending cold hard cash!  :awesome_for_real:


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Slayerik on March 05, 2012, 08:16:45 PM
I verified that's the right paypal email...weird.

Finally got a minute to log back on here and wow, you guys rock. I am truly touched by the response, thanks so much for the help. My life is crazy, but it's crazy cool right this minute.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Cyrrex on March 05, 2012, 10:31:47 PM
Sorted...I don't know how these wish lists work, but I think you need to go add some more stuff to yours. 

Hope there will be enough there for you to have a little fun with it, too.



Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Slayerik on March 06, 2012, 06:56:58 AM
Wow, you guys really chewed up that list and spit it out. I figured out the card thing better, and you can pretty much pick an amount now and do it digitally. Added some bed sheets cause ours have seen better days due to some issues... And diapers and baby onesies, cause well with baby twins you can never have enough!





Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Merusk on March 06, 2012, 07:06:10 AM
Yeah, just but tons of diapers on there.  I didn't get a chance to do it yesterday because I'm on a project deadline and was at the office until midnight.  I plan on buying you some but don't carry my credit cards these days so can't get to it until I'm home.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Mrbloodworth on March 06, 2012, 07:22:25 AM
I verified that's the right paypal email...weird.

It may be, but I can't enter it in the paypal "Send money" area. It seems to want a "real" e-mail.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: schild on March 06, 2012, 07:50:35 AM
I am about to rain on this parade. But first, let me say I have no problem with what's happening here.

That said:

The next time one of you wants to do this shit (i.e. ask for donations, handouts, etc) - CONTACT ME FIRST. JESUS. One, while Slayerik may be some measure of trustworthy not everyone is. This is the internet and I find this shit abhorrent. I would have interest in setting up channels and such to do this, or being a custodian in it, because quite frankly, the only people I trust here are myself and my staff.

If this happens again, I'm going to lock the thread and contact the person to find out what the fuck before money starts getting thrown about. Other concerns are "why are people airing this private shit on the internet instead of dealing with it through family," etc. I want this shit to be on the up and up and this thread came out of the blue.

That's all, carry on. Slayerik, I hope everything turns out OK and understand that this was not a post personally directed at you. I'm just a fan of taking action once something becomes an issue, rather than prior and guessing.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Mrbloodworth on March 06, 2012, 07:53:51 AM
I don't think he asked, we offered. That said, your warning is wise.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: schild on March 06, 2012, 08:01:43 AM
I know, and that's not how it will work in the future. When it comes to shit like this, there is no "We" there is only alpha and omega, which is me. But like I said, I'm letting this one run its course. If dumb shit happens, I wash my hands of it.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Slayerik on March 06, 2012, 08:05:14 AM
Yeah, I hear you Schild. I started the thread as a place for general questions about paralysis and Guillian Barre Syndrome (which it didn't end up being) and things took a pretty awful path for our family. I wouldn't have asked for help, but many people showed interest and even Trippy got the ball rolling with the Amazon suggestion.

Either way, I understand and respect your request. I hope I didn't come across as begging on your board man. I will say you all have truly helped our family out, Angie was shocked when I told her about it. She is a person that is like overly kind, and to me maybe this is karma trying to help her out a bit.

Anyway, it's an awesome community here. Thanks again everyone.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: schild on March 06, 2012, 08:10:56 AM
To be more specific, if it were JUST an Amazon Wishlist, I would have said nothing. Because that seems cool. But once money comes into the equation, shit gets hairy.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Engels on March 06, 2012, 09:38:49 AM
More poop disposal remedies on the way.


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Trippy on March 06, 2012, 01:01:07 PM
Trippy got the ball rolling with the Amazon suggestion.
I've been telling schild to setup a Wish List the last two times he's been unemployed but he refuses -- all he wants are Magic cards :oh_i_see: :awesome_for_real:

As an aside, since we're talking about Amazon Wish Lists, Amazon Japan setup special Wish Lists for the schools and some other organizations in the areas hardest hit by the earthquake/tsunami. I just happen to have an Amazon Japan account >.> <.< and found it an ideal way to donate to those in need over there since I knew all of the money I was spending was going 100%* to helping directly and I was purchasing items they specifically wanted.

* Minus the credit card currency conversion fee


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Strazos on March 06, 2012, 02:06:10 PM
-- all he wants are Magic cards

 :grin:

Maybe once I figure out how much my car will take to fix I'll meander back in here...

Assuming this country has internet access that day.  :oh_i_see:


Title: Re: Slayerik's Family Fund - Donate via Amazon!
Post by: Slayerik on March 13, 2012, 09:28:49 AM
So, please PM me if you bought us food as Angie accidently threw away the info from that. Thanks everyone, again, for the support. We were truly touched by the generosity shown here. Hopefully, next time I post in this thread I will be telling you how she is walking again!

Also, Annie's makes some good food!

EDIT: her recovery has been slow and steady. She is on some device in outpatient therapy called the Lokomat ( http://www.youtube.com/watch?v=PufPyEHDFpQ example). She has been lifting her legs, and using her hip muscles, as well as regaining a little strength in her right leg. Left is her 'lazy leg'. She decided a week ago that she would break out of negativity and beat this thing and walk again. The first couple weeks were rough.


Title: Re: Thank you, f13 friends, for helping our Fam - Slayerik
Post by: tgr on March 13, 2012, 12:39:29 PM
That's good to hear. Here's to a continued improvement.


Title: Re: Thank you, f13 friends, for helping our Fam - Slayerik
Post by: Khaldun on March 14, 2012, 07:47:14 AM

Somewhat relevant:

http://www.amazon.com/Blue-Water-White-Robert-Samuels/dp/0984019413/ref=sr_1_1?ie=UTF8&qid=1331736602&sr=8-1


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Slayerik on March 20, 2014, 10:25:57 AM
Angie had some blurry vision in her right eye, so we took her in. After a 3 day hospital admission and steroid treatment, there is a clinical diagnosis of Neuromyelitis Optica (or Devic's disease).

Seriously, don't even look it up. It's depressing as shit. It was basically something we were very relieved it was not when a certain test came back negative. I find myself now thinking "when will the next big attack hit her?" The scariest thing for me is that she will work so hard to walk again, and then BAM it'll all be gone. But I guess in life you can't stress yourself out over shit you can't control...so fuck it. Sorry to vent here, but for whatever reason it helps.

I wanted to post this here, as many people have reached out and also asked to be kept in the loop, and as much as I had hoped to bring good news it just keeps sucking. I had been given some good advice by a friend here in a PM, and I am going to try to follow it:


"Do the thing in front of you.  Then the next thing.  Once there's nothing left you can do that is useful, *then* you can fall apart."

Her vision seems to be recovering. There are some treatments that can shut down these relapses pretty well. I WILL stay positive. There is nothing in stone with any of these stupid fuckin' disorders.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Kitsune on March 20, 2014, 11:11:03 AM
That's no party to have, but if they've actually pinned down the culprit then at least now they can be focusing their efforts into treatments that will actually be effective.  Better to know it's something bad and have a working plan to deal with it than to have no clue what's going on and blunder around.  Keep the faith!


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Sky on March 20, 2014, 11:49:11 AM
"Do the thing in front of you.  Then the next thing.  Once there's nothing left you can do that is useful, *then* you can fall apart."

That's a great quote, use it like a mantra. I hope things improve drastically for you guys.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Engels on March 20, 2014, 02:50:50 PM
That blows, Slayerik, but at the same time, I have to think of your woman, and how SHE lucked out, in a way, in having  you as a partner when this hellstorm hit. I imagine how screwed she'd be if she had your average joe, who'd panic and flee from something this scary. Mad props to you and keep your chin up. One thing at a time and you'll get through.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Miguel on March 20, 2014, 03:12:12 PM
That blows, Slayerik, but at the same time, I have to think of your woman, and how SHE lucked out, in a way, in having  you as a partner when this hellstorm hit. I imagine how screwed she'd be if she had your average joe, who'd panic and flee from something this scary. Mad props to you and keep your chin up. One thing at a time and you'll get through.

Indeed.  Gingrich would have bailed the first time she sneezed twice in a row.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Slayerik on June 05, 2012, 10:15:17 AM
Good update!

Angie continues to rehab 3 days a week in PT. She stood for the first time under her own strength recently, and we hope to continue with positive milestones. She has not had a re-occurance of the disease, but she is on high dose steroids for a while longer. Her last Chemo treatment is Saturday. This is doing a number on her physically, with weight gain and hair loss, but hair grows back and weight can be lost. She suffers with muscle spasms a lot, especially at night. Her nerves are still quite shot, and is in a lot of pain.

I personally quit drinking. I was at the point of drinking every other night to drown my sorrows but life is too short to spend half of it hungover and tired, and I have too much on my plate for it. So that's that! Now my new addiction is Diablo 3...as well as the rest of my family.

She is still brings up the people on here, and was amazed by the response. Cheers


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: HaemishM on June 05, 2012, 11:09:06 AM
Congrats on the standing and the quitting drinking thing. I hope things continue to improve.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Sky on June 05, 2012, 12:11:54 PM
Cool, glad to hear things are going relatively smoothly.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Mrbloodworth on June 05, 2012, 12:13:41 PM
Glad to hear it man. Just keep doing the thing in front of you.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Lantyssa on June 05, 2012, 12:32:39 PM
She stood for the first time under her own strength recently, and we hope to continue with positive milestones.
Fucking awesome, dude!  \o/


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: RhyssaFireheart on June 05, 2012, 01:33:13 PM
YAY!  Glad to hear she's getting better.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Yegolev on June 05, 2012, 03:33:51 PM
I'm glad both of you are getting better.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Ard on June 05, 2012, 08:59:39 PM
 :yahoo:


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Slayerik on December 31, 2012, 09:39:43 AM
Well, it's been a year now! And seriously, fuck you 2012.

Just wanted to post an update, Angie is doing better...no relapses and complications in the 9+ months. Some feeling back in her legs and feet...She is walking with the help of a walker. Still only maybe 100 feet at a time, but it's something! She has returned to work, part time, and is trying to get her license back so she can help me out (I drive everywhere). She will most likely need hand controls, for now, though.

Not sure why, but I was just reading the grief title thread and I was thankful for this place. Hope you all have a great 2013, and thanks to schild and the gang for my little internet home here. And thanks to all of you for helping me out...I meant to send some personalized thank yous but I basically don't have time or energy to wipe my ass most days. Just know it's appreciated.

(http://sphotos-a.xx.fbcdn.net/hphotos-snc6/603357_10151583459575299_1289958114_n.jpg)

A Happy and safe New Years to you and yours.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Engels on December 31, 2012, 09:53:37 AM
Glad to hear she's doing better. Hope 2013 is kinder to the Slayerik fam.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: HaemishM on December 31, 2012, 10:09:22 AM
I'm happy she's doing better. We avoided the Mayan apocalypse so 2013 can only go up, right?


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Signe on December 31, 2012, 10:23:23 AM
Happy stuff

 :heart:  I hope everything stays good.   :heart:


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Segoris on December 31, 2012, 11:01:24 AM
That's awesome, hopefully it keeps getting better


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Rendakor on December 31, 2012, 11:31:47 AM
Good to hear man, hope everything keeps getting better.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Lantyssa on December 31, 2012, 01:31:12 PM
Hearing she's continuing to improve is enough of a personalized thank you.  Keep kickin' ass!


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: apocrypha on December 31, 2012, 11:33:14 PM
That's really good to hear Slayerik, hope things continue to improve!


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Merusk on January 01, 2013, 06:13:22 AM
Good to hear, Slay. Congrats.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: RhyssaFireheart on January 01, 2013, 12:05:57 PM
 :yahoo:


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Cyrrex on January 01, 2013, 10:15:34 PM
Here's hoping for a great 2013 for the Slayeriks.


Title: Re: Neuromyelitis Optica - #%^& You NMO!
Post by: Sky on January 02, 2013, 07:22:38 AM
Great news, Slay. And good on you for being a good man.