NeuroTalk Support Groups - View Single Post - In This Day And Age Ignorance Is No Excuse!!!

Vicc · 06-18-2007, 08:37 PM

I guess I need to add my contribution to what everyone else has written, but I want to talk about social work students. I want to talk about them because one would think that social workers (and wannabes) would be the sort of people who would understand and empathize with disabled people. Not so. At least not in my experience.

OK, I was 48 when I went back to college to become a social worker (a job I thought I could do despite my disabilities). Almost half of the SW students were non-traditional, some as old as me; they didn’t ignore (actually avoid) me because I was older. And I’m not anybody’s dream lover but I always had a lot of friends before I got hurt, so it wasn’t my homeliness or a social defect either. It was because I was disabled and they didn’t know how to deal with it, so they avoided me.

If social workers don’t know how to deal with disabled people, it’s easier to understand why “regular” people don’t. I don’t have any idea what to do about this; all I know is that if social workers don’t even see a reason to try, we are probably going to have to deal with this ******** as long as we live. That really sucks.

I need to add that the most insensitive group of people I have ever had to deal with are physical therapists. Most of them, and nearly every one of the new ones, really believe that PT can fix everyone. When it doesn't fix you they become jerks and blame you.

This has been my experience with PTs for a very long 28 years; ever since a slip of the scalpel during a back surgery in 1978 made standing, walking, or even sitting upright painful. After my 1995 injury, those activities were just too painful to even try; and I certainly wasn’t going to hurt myself just to make a PT happy, or to convince him/her that I really do want to get better.

PT is wrong for most people with painful nerve injuries, and it is wrong for people with RSD. I agree that PT may very well be useful for people with chronic pain, but according to the International Association for the Study of Pain (IASP) (1995), chronic pain is pain that has no useful biological function and the mechanism of that pain is not understood. That aint us.

Our skin is most often purple, most of us have, or will face patchy osteoporosis and inhibited hair and nail growth, and almost every one of us have a severely painful hypersensitivity to cold, and a lower skin temperature. These are all objective signs of a real physical disorder. The experts can pretend cyanosis doesn’t exist, and they do, but we see it every day.

I have written in the past that all you need to do to cause RSD burning pain and allodynia is to put a blood pressure cuff on your arm and leave it inflated to above systolic for 30 minutes; your arm will turn purple, and if touch an ice cube to that arm and you will feel the same allodynia you feel every day with this disease.

We don’t have chronic pain, we have pain that won’t stop hurting because the “experts” don’t have a clue as to what is causing it. Once they figure out what is causing it, they will finally know how to stop, or at least control it.

But back to PTs: My first social work job was at a traumatic brain injury rehab hospital; a hospital that had an internship program for PTs. During half of their sr. year, PT students must work at a real job – but for free – for one semester. While I worked at that rehab, five or six new PTs arrived for their internship.

All of them were young, healthy and athletic; I’m sure all were phys-ed majors on scholarships who figured out there isn’t a job market out there for track and field, and that the only job their education prepared them for was physical therapist.

Young, athletic phys-ed majors suffer lots of acute injuries and usually get PT at least once or twice. They never see anyone with a chronic disability until they begin their internship, and by then they believe PT can fix anything. When chronic patients don’t get better, it’s their fault: they weren’t willing to accept the added pain that would make them better. That’s ********, but that’s what PTs believe.

Well, I could walk a few steps unaided and about 200 steps using a cane, but after that, walking just hurt too much. It was a huge campus and I needed a power wheelchair to get to my three offices in three different buildings.

That was just too much for those PT interns: if I could already walk a dozen steps, they knew that with PT I would eventually be able to walk a dozen miles. They made me their “project”; literally trying to shame me into doing PT by making it clear that only pussies don’t believe in “no pain, no gain”.

Hey, I was a Marine and was damn proud of the fact that I never reached the point when I just couldn’t go another step; I was (and still am) a TRUE BELIEVER in “no pain, no gain”, but not when it just hurts and doesn’t make you a bit stronger. And with nerve pain and RSD pain, PT can’t make you stronger. At best, it causes pain for no good reason, and at worst it probably makes you worse.

I really learned about PTs after the 1995 injury. Besides RSD of the left foot, I added several new back and spine diagnoses. They call it chronic pain, but all of my pain has an objectively identifiable mechanism, and most neurosurgeons agree that PT won’t help improve any of them. All of my pain has biologically useful function: it is telling me that activity is hurting damaged nerves, and hurting damaged nerves is always bad. So is hurting RSD damaged tissue.

But I was fighting work comp, and the professional whores they hired all agreed that I should have PT. The only reason they wanted me to do PT was that they knew I couldn’t succeed and then they could try to blame me for not getting better: If I really wanted to get better, PT would have helped, so I obviously didn’t want to get better.

My lawyer told me to play the PT game, but I refused. I was not going to cause myself unnecessary pain just to make some physical therapists believe I was trying to get better. Most of the time when they told me to do something, I told them to kiss my ***. I even used those exact words several times.

The w/c law judge had been around long enough to recognize w/c games and he didn’t buy into it. My five year battle with w/c finally ended when he ruled that I was too disabled to attend hearings. That was after several physical therapists had labeled me “non-compliant”. Thank God for an honest w/c judge.

When I was hurt in 1995 I was pretty sure physical therapists were too overconfident in their ability to fix everyone; after six months of dealing with them, I knew they are downright dangerous. They hurt people with nerve damage, they hurt people with RSD, and they are just too damn arrogant to understand that.

I’ve been wanting to say this ever since used to be posted Grrrrr……no more physical therapists, but had to say it now because I’m convinced that PTs are the least emphatic, least helpful people we will ever meet. Yeah, there are exceptions, but for the most part, they suck…Vic

BTW: *** stands for that part of the anatomy we sit on.