When my MS took me through the many changes it did, each change became a hurdle the size of a mountain it seemed. When it finally came down to a full-time chair (this is something I still fight to accept), I really didn't know how I would ever deal with it. I still fight with it daily. Some days are better then others, but the battle never ends.

I have full-time assistance for everything needing done around the house; I am suppose to be full-time in the chair; and I am not even able to dress myself most days; and much more remains limited in my daily life. These things are very difficult to accept at times, but it is something I have to deal with because it is not likely to change any time soon.

These are hard things to accept, but I have to realize I am the same person as before. I just do things differently. I find other outlets to put my time and energy into. I try to make the best of these things I can not change. I still get mad at my disease and struggle with the many changes occurring in my life as a result. I may not be able to walk, work, or clean my house, but there are many things still left that I am able to do.

We all have talents and gifts to offer the world. We need to find a way to get them out there. Even if we offer someone a smile who needs it, we have done a grand thing. As we go down these roads of despair, there is always someone worse off who may just need to know we care. Caring is a powerful gift, and the sharing of a smile is the best way to express it.

So help yourself by passing things off to others and let the love you pass along lead you to understanding the good within yourself. Your self worth is not measured by physical activity, but by what hope you pass to others in need. Hopefully this will be something we can all learn together at this web site. We will live and grow together.

As if dealing with the disease of Multiple Sclerosis isn't bad enough, I had to face other trying problems as well. I got to a point where I had no choice but to come to terms with my disease, and then I had to face the process of getting Social Security. This is a really hard battle, and one I know very well.

I fought for my disability for three years. I won the battle in December, 2003. It took a change in attorneys, and many roads of stress and confusion before the battle was won. It added to my already climbing stress level. This process makes a person want to give up.

I had several appeals before I got to court. The court case is where I won the last hurdle and got my disability. This process is meant to make people give up. They want to push you so they won't have to pay the claim. It took me through a nightmare of doctors who knew nothing about MS. and a bunch of bureaucratic red tape.

It is not a fun process, but you must stick it out. In the end you will win if you hang tough. Keeping good records helps make things easier. You must have records of everything pertaining to your case on hand at all times.

I would also encourage you to visit MS the Lite Side. There is an expert there who will help you through the process. If you have MS and need help filing paperwork for Social Security Disability this is the place for you. You will find plenty of help and support. I wish I would have known of this web site when I first began to file. I could have used the help.

The banners below is more great sources of Disability and Social Security information. The owner of these pages is one of the sponsors of TLTH.

Somehow I have been able to negotiate the SSD "system" successfully without having a lawyer or even a neurologist or an "Interview" with a SSD employee in any other capacity except to get forms and give forms back to someone and an initial "phone interview". I have passed my insights on to others a few times. It appears as though others can use it as well, so decided to post.

Please keep in mind that I am not a professional in law or medicine ... and make no claims to be (only in "system") ... and most of what I have to say is my personal opinion (we all know what they say about opinions and ?other things.? Everyone has one.

The SSD process is a long and involved one. A few things to start you out:

1. Your DATE OF DISABILITY is important. You will NOT be eligible for SSD payments for the first 6 months from this date. This means that for the first 6 months you "are on your own" except what other benefits you qualify for (Disability Insurance from work, SSI, food stamps, etc.). Disability payments are never retroactive from that date, but from the 6 month "grace period". They don't care if you are starving to death, it is not their agency ... those are handled through your State Government. Remember, they are not the same! SSI and SSD are two separate things and should be kept in two different envelopes.

2. TAKE YOUR TIME to familiarize yourself with all the forms. Don't put any info in except your name (maybe), till you look everything over to see what they may be "looking for." You have to figure out that most of the people really reading these are civil servants who scored in the lower half of the people passing the test ... they are drones ... so you learn to speak their 'language' ... lol

3. SSD is not the place to "prove" to anyone (doctors, spouses, coworkers) that you have a diagnosis, need a diagnosis, or for you to obtain a diagnosis or to complain about NOT HAVING a diagnosis. SSD is simply the inability for you to work due to (a) physical, emotional or mental reasons, and (b) that you quality ... NOTHING MORE!

4. It is difficult to approach the whole SSD thing, unless you look at it like a court case you have to provide "evidence" for. JUST SAYING THAT YOU HAVE MS IS NOT ENOUGH! It is only the 'cause' of your disability. You have to TELL THEM AND PROVE WHY YOU CAN'T WORK. And by law, you really don't even NEED a diagnosis for this!

5. I cannot advise you strongly enough to NOT allow lawyers and doctors to fill out your paperwork and to NOT allow anyone else to fill out your disability papers. Do them yourself if you are able or get a good friend to go over them with you and help.

Why? Because they are as 'clueless' as you are without the vested interest that you have in the outcome. Doctors don't know anything about putting the right information in the right way and the right place, and I have seen too many lawyers mess up the paperwork for people and then drop them as clients when they went to appeal. I am dead serious on this. Since we have MS we are MORE qualified than any lawyer or doctor in filling out the forms and telling someone else what is going on.

I always figured that I could get one if I needed to appeal, but I was going to prepare and present my case on my own rather than deal with idiots. Your brand of idiot may vary, but I would not trust them to fill out the forms and then expect ME to sign it AS IF I HAD WRITTEN IT (which is EXACTLY what you are telling them when you DO sign it!)

Those are the "ground rules" for applying for SSD. (Written by and provided by Al "Coyote" from MS the Lite Side.)

Get some helpful charts which will help you chart symptoms and other important information at Coyote's MS Charts.

Please keep in mind that I am not a professional and make no claims to be ... and most of what I have to say is my personal opinion.

We have to treat the SSD as if it were a court case ... to that end. Below are important points in this process.

* The first thing is to make a "formal charge:" and for this we go to: Your Disability Report Audit (SSA-3368-B):

* First page is just 'who are you?' stuff.

* Page 2, Section 2A: "What are the illnesses, injuries or conditions that limit your ability to work?" The only thing I put here was "Multiple Sclerosis". Some people may not have a diagnosis, in which case I would put "Probable Multiple Sclerosis or Neurological Disease" or something equally 'sexy' for them depending on what hoops you have jumped through or probable diagnoses you have gotten on your journey.

* 2B: "How do your illnesses, injuries or conditions limit your ability to work?" I put (a) Fatigue - unable to work all day (b) Pain - can't sit/stand too long in one place (c) Cognition / memory problems (d) Parestheia in legs and feet.

* EVERYTHING else I put on that form and ANY OTHER FORM was in defense of those 4 things ... when I was at doctors and hospitals and all that garbage is only in defense of THOSE TWO QUESTIONS and I used them like a theme. Your theme will be different from mine, but you have to work from the answers you give there.

* Do not make the mistake of trying to defend the diagnosis or something ... The point here is not the place to try and find a medical 'reason' ... you want to defend your SYMPTOMS and you could care less what they call it as long as you quality for the disability YOU EARNED.

* I also went to my family doctor and told him that I was going to apply for disability and why, simply so that he would write down those points ... cost $55 for him to tell me to get a lawyer (like I ever listen too closely to doctors ... lol) ... BUT he put it all down in my chart ... lol. It was important for him to have a record of me going to him with those symptoms. He did not do anything for me, because I didn't want him to at that point (hell, it's not like I was sick or had something he can treat like a kidney infection you need antibiotics for ... lol).

* But be sure you list ALL the docs and hospitals and clinics you have been to for your symptoms. I had to look over insurance records that were 7 years old to get the name of a neurologist that is no longer in town! I am not sure how they resolved that one, but it did not hurt me, so they must have found some evidence of the guy ... lol. SSD will then get the records for themselves ... you do NOT have to do more than give the place or doc and the month and year.

* I am not sure if I can be of help with the Work History Report (SSA-3369-BK) or what problems might be on those forms, but 15 years of work history is a lot ... and a lot can happen in a very short time with this and it may not be reflected there if you are not careful. Be sure to make yourself 'look' unemployable due to job demands ... and be specific about what you did on the job ... the more information here the better, believe it or not.

* At some point in time during the process you should receive from the DISABILITY DETERMINATION SERVICES of your state, an ACTIVITIES OF DAILY LIVING form (in Kansas it is form f6019). In looking at it, I sure hope your state has something like it, but they ask about bathing, cooking, shopping, etc (ADL's ... activities of Daily Living). If you have filled out one similar, keep in mind you want to let them know of some of your WORST days not the BEST days or even AVERAGE days. We tend to minimize or discount our own symptoms when we get better and look on our hope for recovery. Like I said above, you want to defend those points you make on that Disability Report Audit Section 2.

* This is a form that allows you to outline what you can and cannot do and tell specifics like the ones that I told my family doctor, with responses to how long /often I experience my symptoms being "constant" and was able to state at one point "I am unable to put in 8 hr days or a 40 hr weeks anymore due to fatigue and pain. I can still walk, but have a limp."

I hope this helps. Don't be too afraid of the system and if you have any questions, let me know ... I will be happy to give you an opinion and am not afraid to say "I don't know" or "that is a question better answered by a lawyer." There are also many others here who have been through this that can add more that I may have forgotten or not encountered and we may be able to help each other out. (Written by and provided by Al "Coyote" from MS the Lite Side.)

Get some helpful charts which will help you chart symptoms and other important information at Coyote's MS Charts.