Thank you so much for your kind words....It's not easy having a loved one who is suffering with this condition. I have good days and bad days too. This morning I was frustrated about his pillows being all over the living-room. (He has at least 3 for each arm) - they make such a mess when he's not in the recliner.....BUT I know he needs them so I restack them on his chair until he's back in it again...little things like that occasionally urk me - I'm only human and do try my best, I just need to remember what their for and who they are for.

I get angry too - Angry because in the time since the RSD in his leg (1995) and now in his arm (2006) 11 YEARS have gone by with no major advancement towards major pain relief and/or recovery. Angry, because his employers didnt care enough when asked for ergo for the drivers arms told my husband and the crew to "buy their own" (on a minimul salary), Angry because his employers have not accepted responsibility for his condition which thus caused the surgery and thus caused the RSD - Angry because the W/C insurance company has denied responsibility there for cutting him off medically and financially - Angry because the "system" does nothing to protect injured workers, their families, and there is no financial security net for someone who developes a serious medical condition. (AKA - Social Security = Slooooocial Security) - People starve and die waiting for an income and treatment......And the list could go on.....I try to harness that anger tho and research, share information, spread the word about RSD, contact elected officials, etc. I have not made progress by leaps and bounds but for each little "bug" I put in ones head I feel I've accomplished something.

Your right - this disease does destroy not only relationships meaning husband/wife and/or partner but also relationships between children and parent....Our oldest remembers dealing with the RSD and dads leg and how it has limited him (no tackle football, no bike rides, skiing, etc)...now he's dealing with dads arm as well and he's angry. He's had so much lost and had his life with his father taken away from him. We were talking about this just the other night....It's extremely hard on him, he's had to take on the role of caregiver, doing "dads jobs", helping more then normal with his siblings, etc. It's a lot of pressure for a teenager...or rather any child.

Our two youngest are struggling with this as well. I used to be home with them all the time while dad was the financial provider. Well no more....I am now working (which is a hard adjustment for them all) and dad is at home. This has thrown them for a loop. Right now my hours have been cut (poor weather for a tourist area and the economy in general) so I have been home a few weekdays and the kids are liking that. I feel somedays as the mom (who always said she'd be home and there for her kids no matter how poor we were) like I've abandoned them - I feel guilty because I'm not here for them. Dad is, I know, but it's still hard - I've been home with them all their lives. Now I cant watch them get on the bus, tell them " Have a good day & I love you" before they head off to school, or brush my daughters hair in the mornings....

One thing I'd like to add, before I close as I've worked my way to tears writing this - is that please - for those of you that suffer from RSD remember to give thanks to your care-giver and to your families. Let them know you appreciate all they do for you and that you need them and appreciate their support. One kind word every day can make the difference in all of our lives. Be their shoulder to cry on if need be - Sometimes they need that reassurance too.

I think many of the feelings and issues you mention- fit so well for anyone in a caretaker role.

It is very hard for the 'healthy" one or family members to really comprehend what the afflicted ones go thru but on the flip side care taking and supporting and working do take a heavy toll too.

In essence both have "lost" the "normal" life and both will go thru the grief steps and at a differing pace.

even for those with 'functional" disabilities- that can still do some normal activities it sometimes is hard for others to understand.
We can do some things/activities and other times aren't able to due pain or that the activity will cause a flare that may last for a week.

Good post !

caregivers are more than welcome to vent here too-

Oh I haft to agree with you hubbywith rsd I have been through the work comp system. I could not even go back to my job I was to high risk so here I am a burden to everyone my town and family. I receive SSDI and Medicare to help me now when I was fighting them for my rights I could not do it alone, being a single mother I needed income so I had to take their offer which did not help me then or now.
I thank the help I get everyday from my neighbor and from my church and the town I live in, I know I’m just a charity case I feel so helpless and just want to give up all hope why should I be a burden to them anymore…Lil

I just have to say, for the record, that there are a lot of together people on this forum who are entirely supportive of the work of Robert Schwartzman, M.D.

I know "Kit Deluca" personally. I do not believe that she holds the views that Vicc would ascribe to her. Indeed, the CNN piece correctly states that the ketamine treatment coma has helped roughly 50% of the people who have had it. And yes, I was one of those many people who were told by Dr. Schwartzman that he could and would “cure me” when it didn’t pan out that way, but I don’t hold it against him. The fact was that I wasn’t an ideal candidate for the treatment, simple as that. But it doesn’t negate the underlying and evolving science.

I know that some feel otherwise, and that's their right, but this forum should NOT be understood to be a place that supports a unitary view that Dr. Schwartzman is a snake oil salesman.

There is a lot of science out there about the role of ketamine, not only as an NDMA receptor antagonist, but, in the piece posted by Roz earlier today, a drug that actually suppresses the production of pro-inflammatory immunological proteins that would otherwise develop immediately after surgery. See, http://neurotalk.psychcentral.com/sh...ad.php?t=13236 (Pretty amazing when you look at it that way, isn't it?)

Indeed, if you pay attention to the CNN piece, they are talking not just about ketamine, but other immunologically based treatments that were coming down the pike. I have seen absolutely nothing in the intervening half-year that contradicts that view.

Finally, I know that there is a view out there that hold that “I’ll stick with stuff I can understand.” I’ve got to say, coming at this from the perspective of someone who satisfied his science requirements in college by taking Intro Bio, Ecology and Astronomy (Space Rocks for Jocks), that it behooves each and every one of us to do the heavy lifting ourselves, because our doctors may not feel obliged to do it for us. Go out and buy Molecular Biology made simple and fun, D.P. Clark and L.D. Russell (Cache River Press, 2000) or Clinical Physiology made ridiculously simple, Stephen Goldberg, M.D., (MedMaster, Inc. 2004), and then start digging!

See you in the stacks.

Mike

Oh gosh, I remember Kit's description of her experience (actually someone else posted for her at the beginning of that ordeal) - what a nightmare, put me off ketamine coma (I stress coma) treatment for ever

I read Vic's post as ascribing his views to himself, actually. Do we have to have a "unitary view" here, can't we have amiable disagreements? I suspect quite a few of us might be bright enough to make up our own minds about things, and we might even be bright enough to understand science articles too!
all the best

Artist –

I never ever meant to suggest people didn't believe that they weren't thinking for themselves, so much that I just believe folks are making a mistake in ascribing to someone I had the privilege of meeting in a professional relationship (Robert J. Schwartzman) all of the sins, real or imaginary of the medical community.

And for that matter, who among us hasn't labored in an occupation for a good number of years where our professional views haven't changed over time? Yet what's going on here is that stuff is being pulled out against a man, as though every position he took over God knows how many years is being held against him as though it was yesterday, and then others are coming along and piling on him like he's the Anti-Christ.

Frankly, and at the risk of alienating some, I am at times left with the imagery of a bunch of town folk, storming the castle with torches and pitchforks. Let's see, if Schwartzman is Dr. Frankenstein, does that make me his monster?

Mike

Hey Mike,

Please take this as the joke it's intended to be....no! maybe if his treatment had been successful you would be, but as it wasn't....you remain completely unmonstered (I now have a picture of Dr. S in a crypt surrounded by giant crackling electric coils ).
all the best!

Wow - I didnt post the article to start the war of the words....Just thought that the information was interesting and hope for some of us. At least SOMEONE is doing something.

Honestly - I dont think the "coma" is way off track....I personally know someone who had RSD who ended up very sick (from another sickness) - they had to put them into an induced coma like state to keep them from hurting themselves (severe infection raging in their body) and after they came out of it slowly progressed in the right direction and their RSD went into a remission of a sort. The RSD was not gone - as with the girl in the video but more managable....We never gave it much thought as to why that could have been before seeing that video but now it makes a little sense...

Maybe there is something to this........

To Everyone,

I 100% believe that DR. S heart is totally right. He is in his 70's the last thing he needs is money. He has money. He is devoted. He wants his patients out of wheel chairs and off of drugs. Which the Ketamine has done in several cases.

He has several patients coming into his office with this horrid RSD pain. RSD is a very rough DX.

Ketamine is not as bad as going under general. My husband has spoken to quite a few Anesthesialogists. Which I have considered Ketamine and might end up doing it myself.

I want to get the point across that DR. S is not the only one that believes in Ketamine treatment.

25,000 thousand is nothing to be having to be checked on and continually monitored for 5 days if not more. Do you or anyone else have a clue what it costs to monitored and be hospitalized.

Anesthesialogists, make big bucks anyway let alone for them to have to check on a patient for 5 days if not more. 25,000 is peanuts to them, IT REALLY IS. They can make that in surgery in a day and a half. Hugs, Roz

To Vicc,

Let's recall Duke. Who is a surgeon and put his 12 year old thru Ketamine. Only to give her some of her life back.

Today she is happy and riding her horse. Do you recall the photo on Brain Talk 1. Hugs, Roz