Got disability and AFOs

    • Anonymous
      September 15, 2008 at 5:03 am

      Just a quick note to let you all know that I finally got approved for disability, got that first check already which was painfully small, but will now be getting regular checks that were more than I anticipated. This should take some pressure off and let me heal a little more before sprinting out the door to work. Plus with the side effects from the IVIg I can’t work right now anyway – can’t get anywhere near sunlight! Just as an FYI – after two years we hired a law firm and three months later I was approved. I have no idea whether they made a difference or not, I choose to believe so since nothing was happening until their name was attached to mine.

      I also got my AFOs though I’m going to change them already. For some reason I let him talk me into plastic on the left and metal on the right. I should have gone for metal on both as I didn’t realize that my left leg is as sensitive as my right. Plus I can’t get a natural motion when one foot stops at 90 degrees and the other goes further. So I’m going to switch them – but the good news is WHAT A HUGE DIFFERENCE!!!!! NO MORE CANE! I can walk without falling and mostly walk without the cane if I am wearing the AFOs. The metal ones are much more unobtrusive than the plastic – they just look like black tennis shoes – and are much more comfortable for me as well. I don’t need the full support of a plastic one as I have some lower leg strength.

      Just thought I’d pass that along, I’m still a mess from treatment side effects but I’m getting better. Hope you all have a good week.

      Julie

    • Anonymous
      September 15, 2008 at 7:13 am

      Congrats on the disability. Every little bit helps. Its sad to think that you have to get a lawyer to get it though. It goes with the motto of “whatever it takes, we can do it….”
      The AFO’s sound cool. I never heard of metal ones, only seen the plastic. Do you feel like you have left something behind without your cane? I hope they continue to work for you. Take care,

    • Anonymous
      September 15, 2008 at 7:14 am

      Great news Julie 🙂

      Sue

    • Anonymous
      September 15, 2008 at 8:27 am

      Julie! Disability did me the same way. Two years and 3 months and I had to get a SSD lawyer also. Got the lawyer and 2 months later I got my first check with no problems at all. In fact I got the lawyer and he turned in the information and then a week later I found out I was approved.
      That really is a joke, isn’t it? Here you have a doctors note saying you can work or a doctor’s report saying your condition and they deny you! There is something wrong with that picture!
      The lawyer gets half of your check and then you go your merry way! When I got my first check, I wanted to cry! Here I had 3 children to worry about while being chronically ill and scraping the pennies from my penny jar just so I could buy my son his first Class Ring in high school and get his prom things together and was getting denied. It was a rough two years. Right when you need the money the most your getting denied. Putting more strain on your health worrying about the food on the table and the bills coming in and they deny you! Trying to keep your children clothed and you are denied.
      And then when I did get my first check, I cried because I was too sick to even spend any of it. Thank goodness my mother and father helping us out alot back then. My poor husband had to get two jobs so we could get those bills paid off. It was rough!
      I can’t understand our system here! I really can’t understand it! I think it is a way to discourage people hoping they will give up and not try anymore getting a check. So someone just quits because they are too sick to keep messing around with paperwork and no telling how many die and never get a check. Letting the families take on the burden taking care of that sick one.
      Like I said! That system is messed up and the questions they ask you! Some are so stupid! When you can’t work you just can’t work. When you are sick and have a doctors report that should be enough proof. Instead they make it hard on disabled people. They really do! And some of these people that are sick are emotionally unstable as well having to deal with their illness. And I felt like I was treated like scum! It made me feel that way. Here I was back in the 90’s making $30000.00 a year working and to get a measly $457.00 a month check to me was an insult but I had no choice but to except it so I could get my meds and bills paid.
      What really made me mad back then was me knowing somebody that made less than I was making in the work force and they got a higher check. $300.00 more! And it was a male! Both of us worked the same time frames and made close to the same amount in paying in Social Security and he got more. And worked less than what I did! Funny thing too! My first husband died at 35 and my children got their dads Social Security check. They were getting $600.00 a month. My first husband barely worked. That it why I left him. He never wanted to work. So I ended up seeing another male getting a higher check.
      I don’t know if they have changed things or not now, but I still think that back then, they were going by the Man/Woman differences in Labor pay and laws. Meaning a man is the provider of his family and the woman is considered a housewife so they see that the woman will need less money. This is just my opinion. Not cutting the male race down here but the Woman/ Man pay laws. It’s been an issue for years. Equal rights issue. Some things changed but Social Security has not been reformed since the late 70’s or early 80’s. So they are still going by that time frame in pay scales.

    • Anonymous
      September 15, 2008 at 8:30 am

      Congratulations Julie! One worry down…Wishing you feel better soon!

    • Anonymous
      September 15, 2008 at 12:00 pm

      One less thing to worry about Julie. Good for you. I had to go with a lawyer too after my first denial, but Social Security paid him. And mine is based on how much I paid into the system, and I had 100% paid in. My check=1/4 about of what I made when I worked, but it was better than nothing, that’s for sure. I really struggle now, but who doesnt? I’m glad you got one big thing out of the way…..Emma

    • Anonymous
      September 15, 2008 at 12:17 pm

      [QUOTE=Julie]I also got my AFOs though I’m going to change them already. For some reason I let him talk me into plastic on the left and metal on the right. I should have gone for metal on both as I didn’t realize that my left leg is as sensitive as my right. Plus I can’t get a natural motion when one foot stops at 90 degrees and the other goes further. So I’m going to switch them – but the good news is WHAT A HUGE DIFFERENCE!!!!! NO MORE CANE! I can walk without falling and mostly walk without the cane if I am wearing the AFOs. The metal ones are much more unobtrusive than the plastic – they just look like black tennis shoes – and are much more comfortable for me as well. I don’t need the full support of a plastic one as I have some lower leg strength.[/QUOTE]
      Hi, we are currently looking for a set of AFO’s but are lost as to what to look at. Please tell me the brand/model of the metal one. If custom, tell me what you can and who to contact.

      Sorry to be so direct as we have to get out the door for yet another apt. Thanks a lot Julie and I’m happy for you!

    • Anonymous
      September 15, 2008 at 12:29 pm

      Julie

      That is great news about your disability being approved! :p

      I am in the process of all the paperwork. I am on long term disability and get a check from them…in Canada the insurance companies almost force you to apply for Canada Pension Disability. The reason isn’t more money!!!

      The insurance company takes what you get from Canada pension penny for penny so the insurance compny ends up paying you less from their pocket!

      We have a son that is under 18 so he will get a small check from Canada pension Disability. If he stays in school until he is 25 they will pay him.
      The other main reason to apply is if I don’t go back to work when I turn 65 my pension should be higher as it is based on your last 5 years of work.
      You almost need a degree to figure out all this stuff!

      It takes 4 months for the paperwork to go through so around Christmas I should be finding out!

      Have a great day

      Rhonda

    • Anonymous
      September 15, 2008 at 1:00 pm

      Congrats on getting approved for disability! Even a little money can take a weight off your mind.

      I’ve been thinking about applying. I should probably apply for Medicaid, if nothing else. My health insurance costs are going to eat my family alive.

    • Anonymous
      September 15, 2008 at 1:54 pm

      Thanks for the responses – I agree that the American Disability system is designed to DISCOURAGE people who aren’t really sick from benefitting. Frankly I do not disagree with this policy – I am GLAD they are tough on people and in some cases I wish they were even tougher. I personally know someone receiving FULL disability who coaches youth soccer – somebody who slipped through the crack. This kind of thing should not be happening when there are too many other people who are desperately sick and needing disability. If I have to give up some of my initial check to pay a law firm to show them that I am totally serious, then I am willing to do that. That being said – there were plenty of times I just wanted to scream at them and because of their guidelines and rules they have only considered me disabled as of this past June though I have not physically worked since August 2006. I really don’t know what criteria they use to determine how much you will get – I assume there is some kind of formula based on how much you have paid in, your average income – not sure – but I do know that having lived without a salary for two years we have learned to live without stuff we once thought was important.

      As for the AFOs, I don’t know if the metal AFOs actually have a name but I went with Hanger Orthotics – I think it’s a nationwide chain… go to [url]www.hanger.com[/url] and look for the patient centers. I had no idea what I needed/wanted when I went in for the first assessment. They will do tests to see how much flexibility and strength you have in your ankles and recommend a particular type of AFO that would be best for you. The metal ones are custom made, as are the plastic ones. For the metal ones he just drew an outline of my leg on a big piece of paper and marked where the upper band should go. The bottom of the metal AFO is embedded in the tennis shoe so if you go this route you are always wearing the same shoes. The plastic one they made an actual cast of my leg and sent that off, they used the cast to make a plastic AFO to fit exactly on my left leg, this is actually part of the problem – I can’t stand things touching my skin on my lower leg – too much nerve pain. The plastic AFO hinges just at the top of the heel but will not allow your foot to drop at all, unlike the metal one which has a bit more flexibility. The metal one also allows for adjustments to loosen and tighten according to how strong your muscles are. The plastic ones you can move from shoe to shoe – however, you have to get about a half size bigger to accomodate the extra bulk. So – what I did by getting two different ones was make it so that the left tennis shoe fits to the plastic AFO but the right tennis shoe is a half size too big for the right foot which has the metal AFO. They gave me some rubber “lifts” to put in the bottom of the right tennis shoe to make it fit better HOWEVER this ends up making the two uneven, therefore I walk with a limp and my back doesn’t like that too much. So there is my long explanation on why I am redoing this shindig – hopefully none of you will make the same mistake, and hopefully my insurance will forgive the idiot move and pay for the second metal AFO. My AFOs were 100% covered but I had to buy the tennis shoes – and I’ll have to buy the second set too since I need to get a half size smaller now. But that gives me control over how they look too – some of those options in their office were horrible looking!

      Good luck ya’ll, with whichever battle you are currently fighting.

      Julie

      P.S. Here are some pictures of the AFOs – the right one for me looks like picture # 1 but without the clunky boot (picture a black tennis shoe without the extra leather strap at the bottom) and the left one is like the last picture in the AFO list (Figure 2). [url]http://www.hanger.com/ProstheticsOrthotics/Obsp/Pages/Default.aspx#afo[/url]

    • September 15, 2008 at 3:50 pm

      Congrats on the SSDI Julie. They don’t make it easy do they? I read an article a few weeks ago about the SS office here in Atlanta and it said they had a backlog of 22,000 disability applications. The estimated wait for a hearing is 2 1/2 to 3 years. Its a mess. Again congrats.
      Fred

    • Anonymous
      September 15, 2008 at 5:22 pm

      Thanks Julie,

      There is a Hanger in our city and they were our first stop since we got a walking boot a few months ago. However, once we finally got them to understand the functionality we need they said there isn’t such a brace but if we design it they will build it.

      I didn’t understand the AFO terminology. Her feet are still pretty strong without foot drop, but her quads are atrophied from the CIDP & Polymiocitis. Her knees tends to buckle very easily so she needs something to keep tension to keep it straight. We want to avoid the KAFO that locks the knee as she would have difficulty walking stiff legged and a fall could be disastrous.

    • Anonymous
      September 15, 2008 at 5:36 pm

      Old Lincoln,
      I understand what you are saying and it sounds like you don’t need an AFO – an Ankle Foot Orthotic since she does not have problems with her ankles. Look at all the options on that page with the pictures I posted in my last post. Further down the page are some more complex supportive structures that may better suit your needs. You should probably talk to a physiatrist

      [url]http://en.wikipedia.org/wiki/Physiatrist[/url]

      who can diagnose what orthotics would be most helpful to your wife and let them make suggestions, or designs, that would best suit her. That’s why they get paid the big bucks, so you don’t have to figure this stuff out yourself. 😉

      Julie

      P.S. Just to clarify too – I am not getting SSDI, just disability, just SSD. SSDI is the additional income if you are disabled and I do not qualify for that.

    • September 15, 2008 at 11:20 pm

      Julie,
      Fantastic news, I am so happy for you. I can see you outside with your afo’s feeding all of your nature friends. I can practically invision you skipping down a dirt trail passing out bird seed and a little finch landing on your shoulder smiling with you. I do not know why I see this but I do. you always tell us so much about all of your animal friends, so I just equate happiness with you and them Now if we could just say a few more prayers and get your hubby on that road with you!
      Your very happy friend Dawn Kevies mom

    • Anonymous
      September 16, 2008 at 4:51 am

      Dawn you are so funny and SO CORRECT! I’ve been out walking much more than I have been and while it took the birds and squirrels a little time to get used to the squeak-clunk of me walking they have settled back into their routines and ignore me as if I were just a slowly walking noisy tree. I’m just waiting for another chipmunk to crawl up my pants leg, this time I’m not sure I could shake it out before it reached someplace important!!

      Some good news re: my husband, the results from his sleep study showed he is waking up an average of 37 times an hour. I almost fell on the floor when I heard that – so no wonder he is so tired all the time!!! Going off the Simvastatin vastly improved his energy level and muscle strength but he still wakes up tired and now we know why. He goes in Monday night for the CPAP fitting and sleep study so hopefully this will help him bounce back to his usual terrific self. 😉 And then I’m going to get a sleep study done – as he pointed out… how come you’ve been awake to know that I’ve stopped breathing so often during the night… oooooh, didn’t think of that! So I’m going to get one done too since I really don’t sleep much either. I’m sure it will say I’ve got restless leg syndrome because I get those full body jerks and twitching legs that wake me up. I’m not sure what they can do about that except drugs and I’m not going to take any drugs so it might be a wasted exercise but there may be other issues in there as well. I don’t think I’m getting enough oxygen at night, I wake up with my heart pounding, gasping for breath… not all the time, but it’s annoying.

      Anyway, hope ya’ll are doing OK. My side effects are better, not throwing up anymore and when the sun comes up we’ll see about the headache, right now it’s just in the background. My frogs are chirping at me, yes they are still alive after 4 years… and it’s time to start the day.

      Julie

    • Anonymous
      September 16, 2008 at 10:03 am

      Hey Julie! I know a person too that I can’t figure out how they got on disability either. She had a carpul tunnel problem from her job and chose not to get surgery. Somehow she got disability! I could never figure that one out unless she had a few other problems as well. But this woman travels all over the place. She drives everywhere and takes care of her grandchildren and has a sewing machine and makes stuff for her kids.
      The woman today is not showing any signs of illness and I have seen her do more things than I! And yet she gets disability. And I have met a few more on the system as well. I don’t know how they were able to get on it. Not once has this lady been in the hospital or had any surgeries. She just stays home and enjoys her life. Her and her husband travel everywhere, they have cookouts and family gatherings. Parties!
      Here I am seeing the hospital all the time, doctors all the time, labs all the time. Can barely drive and have to have a lucky day to do so! Husband on Saturday’s takes me out for breakfast and half the time we eat takeout in the truck because I can’t sit in a noisy place. My grandfather died of liver cancer and he never got to see a check! Not once did he see a check. I had 19 years of work in back then when I got on disability. And never missed a day of work except for when I had my children and went back to work before I was supposed to. I had 3 children back then too! All are grown now! But it was a hard time feeding them and keeping them clothed. We did without alot too back then. Only what we needed and what we did not need never got bought.
      I just think it’s not fair to the ones that really are truely sick and they have enough evidence to prove they are disabled and can’t work and actually meet the SSD Guidelines. Those are the ones I feel sorry for. But those that don’t meet the guidelines should be checked out more thouroughly and investigated. Wonder how many they would catch abusing the system. I bet alot!

    • Anonymous
      September 16, 2008 at 11:22 am

      Julie,

      I have OSA and use the CPAP machine nightly (plus naps). It takes some getting used to but I think it’s mainly attitude and determination. If you choose to think of birds and squirrels running up your leg instead of focusing on that @#$@# mask you can settle into a rhythm and the machine will lull you to sleep. It is also good if both of you are on it as you can laugh at each other and bump masks to give a “kiss” goodnight like toasting champaign glasses.

      I will strongly encourage you both to push hard for a data capable Auto Titration CPAP machine. They vary pressure depending on what you need at the moment. Conversely straight pressure CPAP runs all night at the highest pressure it took to clear an event in your testing. The high pressure can lead to uncomfortable bloating, etc. Both are covered the same by insurance (including Medicare) and even use the same billing codes.

      CPAP can lead to a better nights sleep but more importantly can prevent lots of bad stuff caused by low oxygen levels from those times you stop breathing in the night.

      Now, if you knew all the stuff I just told you I will be embarrassed that I ran off like this but I did want to encourage you to get the Auto CPAP machine.

    • Anonymous
      September 16, 2008 at 6:33 pm

      [QUOTE=OldLincoln]Julie,

      I have OSA and use the CPAP machine nightly (plus naps). It takes some getting used to but I think it’s mainly attitude and determination. If you choose to think of birds and squirrels running up your leg instead of focusing on that @#$@# mask you can settle into a rhythm and the machine will lull you to sleep. It is also good if both of you are on it as you can laugh at each other and bump masks to give a “kiss” goodnight like toasting champaign glasses.

      I will strongly encourage you both to push hard for a data capable Auto Titration CPAP machine. They vary pressure depending on what you need at the moment. Conversely straight pressure CPAP runs all night at the highest pressure it took to clear an event in your testing. The high pressure can lead to uncomfortable bloating, etc. Both are covered the same by insurance (including Medicare) and even use the same billing codes.

      CPAP can lead to a better nights sleep but more importantly can prevent lots of bad stuff caused by low oxygen levels from those times you stop breathing in the night.

      Now, if you knew all the stuff I just told you I will be embarrassed that I ran off like this but I did want to encourage you to get the Auto CPAP machine.[/QUOTE]

      I’ve been sleeping with a CPAP for almost 10 years now, and it has made a huge difference in my daily life. My machine is one of the new Auto models, and I like it much better than my earlier machines.

      It took me a while to settle on the proper combination of headgear and mask. I tried two or three different types of masks and was never comfortable with any of them. I finally started using nasal pillows, which I use to this day. Recently, I switched to a new headgear which trails the hose straight down, to my chest area. This enables me to sleep on my back or on either side, without the headgear getting in my way.

      Julie, don’t get discouraged. CPAPs and AFOs (which I also use) take some getting used to and there’s usually some trial and error required before you find the ones that suit you best. My AFOs are polystyrene and are custom fitted. I buy my tennis shoes one size larger and I recently purchased my first pair of SAS dress shoes (again, one size larger). I’d prefer not to have to wear the AFOs, but I enjoy being able to walk, so I put up with them. Hopefully, one day I’ll be able to cast them aside, but, for now, they serve a purpose.

      Hang in there, Julie. This is just another adjustment, and you’ll get past it.

      Rod

    • Anonymous
      September 17, 2008 at 4:50 am

      Thanks OldLincoln and Rod – I have basically no knowledge about CPAP and BiPAP machines so any info is helpful. My husband goes in for his CPAP machine on Monday so it will be interesting to see what kind he gets and how long it takes him to get adjusted. Once we get him settled I’ll go in for my sleep study too. I’m not that worried about it – appliances are just tools whether they are a CPAP or AFOs – I’d rather use them and have a life. 🙂

    • Anonymous
      September 17, 2008 at 4:22 pm

      Hi Julie,

      I am on bipap at night to rest my respiratory muscles. There is a fabulous site for CPAP’ers at cpaptalkdotcom.They are extremely knowledgeable and very willing to help newbies. They can tell you what type of machine to ask for from your DME. The site can get very lighthearted sometimes too which is always refreshing and a good pick-me-upper! They can troubleshoot any problem.

      Mags

    • Anonymous
      September 17, 2008 at 6:17 pm

      That sleep apnea stuff can do some weird stuff to your body and waking up that many times is not healthy at all. I was at the 25 times per hour on my last sleep study but they said it was not sleep apnea causing mine. Mine most likely because of the thyroid problem or upper airway obstruction that they seemed to notice. Never reaching stage 3 or 4 sleep! Hope he feels better soon!

    • Anonymous
      October 20, 2008 at 3:07 pm

      congrates i only hope they give me mine soon these docs in ind dont even begin to understand. and disability been waiting since 05 and in 06 got lawyer but still same until 3months ago got law judge and doc in indy filled out paper work wrong. man im just to point were i could go hide in bed until its all over but my wife and kids keep me going just so hard when cant do any thing to provied for them or self somtimes 🙁