[PonchoV8]

I have an inlaw that is physically disabled and collecting from whatever the program is that we (workers) pay into--he has Anklowzing Spondiopitis (sp)--back is fused completely by an overdose of calcite deposits and the rest of the joints are being effected--chronic pain and some other ailments including depression.

Anyway, he's started working part time as a prof at a community college. We're hopeful that he can continue to work, but his mom (being a mom) is worried that he'll lose his benefits, not be able to work and have to go thru the whole thing to get re-qualified.

Anybody have any experience with this issue? Have problems getting re-qualified. I believe he's able to earn a certain amount of money. Any experience and positive input is welcome.
Thanks,

[GTO Noob]

Doug,

How bad is he?

The reason I ask is I have the same thing and probably 70% of my back is fused and I've had 1 hip replacement. I've actually spent most of this month on crutches because my hips have been bad. The biggest problem with A.S. is that not only does it attack the joints but it attacks the soft connective tissues that hold the joints so even though I've had my hip replaced the hip still can be very painful because of the surrounding tissue.

The only time I was ever off of work was when it first started back when I was 18. I'm 41 as of today and have not been on disability for this. I missed about 6 months of work when my hip finally went 8 years ago but I was back at work as soon as I could walk. Actually sooner as I did some calls on crutches.

I didn't have a desk job like I do now. I use to have to be out in the field with a tool belt on crawling around on concrete floors drilling and cutting as well as using 12' ladders to string cables.

The only reason I say this is because if he's able to work he should be as his condition will only get worse in time and movement / exercise is the best thing he can do to keep his mobility up. I also know a lady that has it and she's been on disability for years but she has a very mild form of it and I never see her having any issues so as far as I'm concerned she's taking advantage of the system and could make things more difficult for people who really have issues to get on disability. If he definitely can't work then disability is the way to go but if he can then my take on it is do what you can for as long as you can because eventually he won't be able to.

You can somewhat control the disease through anti inflammatory medications.

Another really good medication is called Sulfasalazine. Since A.S. is an autoimmune disease the Sulfa works by inhibiting the immune system so that the body does not attack itself which is what's happening.

I don't think he would have a problem re-qualifying for the disability but I would think he would certainly have to go through the whole process again.

PS. It's Ankalozing Spondylitis

[Jerry H.]

Doug, the SS Disability Dept. has a deal know where you can attempt to get back into the work force from your disability and retain all your benefits for a period of time without having to requalify. He may be on that program. I don't know the time frames, but it could be a good program if used properly. I don't know of any other program that will allow you to earn ANY amount of money if you are disabled, but I may be wrong.

[Billy Ray]

PonchoV8
I would think that every state has its own criteria for evaluating a disability and benefits. It probably would be a good idea to talk to a lawyer whose specializes in disability matters to be on the safe side.

[PonchoV8]

Thanks all. It probably is state specific.

He's deteriorating. His back is completely fused together--no movement. He has 3 vertebrae in his neck that are not fused together. But he still can't turn his head more than about 3-4 degrees either direction. One hip is going now and the other knee is causing problems of some kind. To be blunt and insensitive, but accurate in mental imagery, he's doubled over like Montgomery Burns on the Simpsons, but he's fixed in that position. He's about 50 yrs old and is battling depression which manifests in him by laying around in bed--not good for the condition as you might know/guess. So he's getting worse.

We've been urging him to stay active and to get back to work even if it's volunteering--he has a doctorate in English. His mom is overly protective since he WAS diagnosed as Profoundly Depressed a couple of yrs back.

I guess the best is to contact the state and notify them. He's only teaching two classes this semester, so he's probably not coming close to causing a change at this point. We just have to monitor him a bit because he isn't that good at taking care of the details in his life right now.

Of course, I'm for him being completely self sufficient, but I'm not too confident right now.

[bastard]

You don't go through the state for disability, that is Federal. Some Federal money, such as SSI, is distributed through state channels but Uncle Sam runs the show. Contact your local office of the Social Security Administration and they can answer all your questions or visit them online.
The program for disabled individuals seeking employment is called Ticket To Work.

[GTO Noob]

Doug,

Sorry to hear he's that far along. Hopefully I won't be in the same boat in 10 years but that is the prospect.

Ask him about the Sulfa. It won't undo the damage done but it can slow it if not halt any more damage from happening.

I have been on and off it a few times in the last 5 years and I notice a big difference when I'm on it.

I wish him well.

[PonchoV8]

I've known him for 17 yrs and it sounds like he was much worse off back then, than you are now. He's always had the back fused together deal going on. He had a LITTLE more mobility then, but not a lot. He's alsays had to turn his rear view mirror all around to be able to drive. He was still playing some light sports, but you wouldn't mistake him for a healthy person 17 yrs ago. He was getting around okay (for the condition) until 2 yrs ago when the depression hit him. He was still fine until about 6 months ago, but all the laying around just accelerated the decline (as you mentioned wil happen).

He wasn't diagnosed until his 30s for whatever reason.
He mentioned some drug that was still not completely tested or a approved. He made it sound like it was still experimental. Would that be the Sulfa you were speaking about?

Thanks bastard--I feel funny thanking someone and saying bastard at the same time.
Reminds me a radio call in show I used to listen to. The caller was called Cracker Bob. The guest host was a black guy. Cracker Bob said hello to the host and the black guy said "Hello, uh, uh, Ceracka Bob." Cracker Bob, just said, "It feels good doesn't it? "

[Billy Ray]

I think it is more of a state issue if the disability was job related, worker comp type claim. I'm only guessing, but your friend will instead be dealing with Social Security.

Wish him well. Back problems are one of the most painful.

[PonchoV8]

Thanks. I'll pass it along.

[GTO Noob]

Originally Posted by PonchoV8

I've known him for 17 yrs and it sounds like he was much worse off back then, than you are now. He's always had the back fused together deal going on. He had a LITTLE more mobility then, but not a lot. He's alsays had to turn his rear view mirror all around to be able to drive. He was still playing some light sports, but you wouldn't mistake him for a healthy person 17 yrs ago. He was getting around okay (for the condition) until 2 yrs ago when the depression hit him. He was still fine until about 6 months ago, but all the laying around just accelerated the decline (as you mentioned wil happen).

He wasn't diagnosed until his 30s for whatever reason.
He mentioned some drug that was still not completely tested or a approved. He made it sound like it was still experimental. Would that be the Sulfa you were speaking about?

Thanks bastard--I feel funny thanking someone and saying bastard at the same time.
Reminds me a radio call in show I used to listen to. The caller was called Cracker Bob. The guest host was a black guy. Cracker Bob said hello to the host and the black guy said "Hello, uh, uh, Ceracka Bob." Cracker Bob, just said, "It feels good doesn't it? "

Sulfa's not really that new but it's definately effective. Like I said nothing can fix the damage done but this can help save his hips & knees and what ever mobility he has left in his neck.

The other great part is it really helps to slow the connective tissue problems that cause pretty much all of the pain.

The fusing sounds like a bad thing but it can be a welcome relief as well.

I use to suffer from really bad back spasms that would drop me like I'd been shot. It got so bad that you could literally hear my ribs popping when I'd spasm.

Once the vertibrae fused in my lower to mid back almost all of the pain went away because the nerves aren't being squished by the vertibrae moving around. So while you lose the mobility most of the pain goes away.

Not sure if he can take NSAID's or not (Non Steriodal Anit-inflammitory drugs) as he mave have ulcers from taking them for so many years but they have new drugs that are far less damaging to the intestinal track.

I would ask him about the Sulfa because it goes after the disease not just the symptoms like the other drugs. I can speak from experience that they definately help where NSAID's haven't before.

[PonchoV8]

Wow. I'm just so thankful that I'm healthy--sorry to hear that you have to deal with that. But it sounds like you've got a healthy, positive mental outlook on the deal.

I'll bump him (repeatedly) about the Sulfa.

[GTO Noob]

Originally Posted by PonchoV8

Wow. I'm just so thankful that I'm healthy--sorry to hear that you have to deal with that. But it sounds like you've got a healthy, positive mental outlook on the deal.

I'll bump him (repeatedly) about the Sulfa.

If he want's to talk to me at all I'd be more than happy too.

It's amazing how we all take our health for granted.

I remember being a young punk ..... (now I'm just a punk ) thinking about people whining and complaining about their backs and thinking suck it up princess so your backs a little sore.

You don't realize just how much of your life it can affect.

I've gone through the whole gambit of self pity and feeling sad for what was to being down right angry but you have to realize that it is what it is and you might as well make the best of what ever it is that you have because it's all you got.

If he can break the pain cycle that will go a very long way to improving his state of mind. Being in pain 24/7/365 can wear down even the strongest of people. it's extremely exhausting and that just compounds the issues because when you're tired you feel even worse and with A.S. it's very hard to get a good sleep because everytime you go to move in bed you wake up because of the pain.

Pain management is crucial. If you can get the inflamation down and cotroll the pain then all of the muscles around the affected joints can start to relax.

Tell your in-law to keep his chin up and keep on him to check out the Sulfa as he really has nothing to lose and everything to gain.

It's really hard to keep a positive outlook when you feel like crap all the time but it's a big part of the battle.

Please keep me updated on the Sulfa angle

Good luck.

[Jeff Walker]

Originally Posted by GTO Noob

PS. It's Ankalozing Spondylitis

Actually it's ankylosing spondylitis.

I've been diagnosed with it since 1984 and signs if it started showing up within a little over a year from when I graduated high school in 1981. In my case is bent me over and to the side enough that I had an anterior and posterior spinal fusion performed in 1995. Simply put this is a surgury where the doctor cuts you open from the front and back, then straighten your lower spine and then sews you back together. I don't remember for sure but the amount they straighten my back was somewhere around 25 degrees.

I also have had both hips replaced since then also. But I have been blessed enough to keep turning wrenches for a living, so I don't let it slow me down anymore than I have to.

One thing I have found that helps with the aches along with my
medication is glucosamine-chondroitin. That and I also try to keep a good relationship with the Man Upstairs.

[GTO Noob]

Originally Posted by Jeff Walker

Actually it's ankylosing spondylitis.

I've been diagnosed with it since 1984 and signs if it started showing up within a little over a year from when I graduated high school in 1981. In my case is bent me over and to the side enough that I had an anterior and posterior spinal fusion performed in 1995. Simply put this is a surgury where the doctor cuts you open from the front and back, then straighten your lower spine and then sews you back together. I don't remember for sure but the amount they straighten my back was somewhere around 25 degrees.

I also have had both hips replaced since then also. But I have been blessed enough to keep turning wrenches for a living, so I don't let it slow me down anymore than I have to.

One thing I have found that helps with the aches along with my
medication is glucosamine-chondroitin. That and I also try to keep a good relationship with the Man Upstairs.

Jeff...

I stand corrected on the spelling. I didn't notice that I put the A in place of the Y.

Sorry to hear about you troubles with it. It truely is a nasty disease. Sounds like we both got hit with it at the same time. I started having my problems in 81 at the ripe old age of 18.

That's probably one of the worst things about this is that it hits you young.

I've been fortunate to only have had 1 hip done so far. It's been 8 years and it's doing good.

How long since you've had yours done.

The new method of replacing them othroscopically (sp) where you can actually WALK out of the hospital on the same day!!!!

I know if I have to get another one done that will be the way to go.

[Jeff Walker]

Well I kinda cheated on the spelling. While I knew there was a Y in ankylosing, I Googled it to make sure I was correct.

Yes I will agree it sucks how it can happen at a young age while we are supposed to be enjoying life. Having it stopped me from continuing to drive in stock car racing, somthing I loved to do but felt that it was too risky to continue. But it didn't stop me from having a blast on a buddies four wheeler just this Sunday. First time I ever really rode on of them and it was FUN!! But my neck was a bit sore the next day.

My first hip was replaced a year after I had the back surgury so that would have been in 1996. Then I had my left hip replaced in 2000. The first hip was a metal ball and plastic socket type and the second one was a newer all metal design.

On thing that I have been quite fortunate while living with this is that as long as I am on my medication I have never had much extreme pain other than when the hips started going bad.

Oh and on a side note, I have a 2nd cousin on my moms side that has the same disease too. The only big difference bewteen how it's affected him compared to me is that when his back fused it did so in a much more erect position that me.

[GTO Noob]

well I know what you mean about having to give stuff up. Unfortunately I can't do anything that will jar me as it will result in some pretty good pain and it lasts a while as well.

I must say that when the hip went that was probably about the worst I've felt. I lived with mine going for about 5 years and then I went from walking to being unable to put weight on it in 1 night and that was it I couldn't walk on it again until I had it replaced.

I am fortunate in the fact that I'm fairly erect

I am a little slouched and people can tell I have an issue as soon as they see me but I'm pretty good considering I'm fused up to about the middle of my shoulder blades.

It is a genetic thing my 1st cousin on my Mothers side has it also.

It can and will stop you from doing things you love. The trick is to not let it take everything and to not let it take your spirit.

People often say to me they're amazed at how I just keep doing things like installing a hardwood floor or building my office or pool. To me you do what you can when you can and just remember falling into the "woe is me" thing or letting it stop you from doing everything is just letting it win.

You've been dealt the hand you've been dealt so why not make the best of it.

Glad to see I'm not the only one with that attitude.

Take care of yourself and "Stand up straight!" as our Mothers use to tell us

If I hear of anything new in the treatment department I'll let you know.

[jamesgennock]

Yep ticket to work. Went to a seminar some time ago when I was social worker. They something about being able to earn up to a certain amount and once you exceed that amount you will lose 50 cents on a dollar in cash benefits. Or something close to that. A real win win proposition!!!

[PonchoV8]

We can see the improvement in his demeaner even though we can see that he's feeling the pressure of getting back in the public. He's back to teaching freshmen community college classes. If nothing else, being around young people can lift your spirits. A little eye candy can do wonders for a person. The guy is super articulate and he's a good, concisely oriented teacher. It's been depressing watching him mentally deteriorate after he quit working-which aided the physical deterioration. He's also got psoriasis pretty badly which doesn't help his self image.

His worst problem right now is his knee. It's sore and swollen and is slowing him way down in his gait. I'm thinking this is going to be his worst issue to deal with. A hip is an easy replacement, but a knee might never be right.