Re: Disability application - All in the Details

[Guest guest]

I started working right out of high school after finishing Executive

Secretarial School in Dallas and worked solid for 24 yrs. (with only 2 wks.

vacation a year), as a secretary for a mechanical contractor (18 yrs.) and ended

my working career as a legal secretary (6 yrs.)in a high-rise office building in

downtown Dallas.

So, really for me having my triple arthodesis of both ankles at 12 served me

well over the course of my young life. When I had the surgeries, my doctor said

he took out some things that would cause me pain and discomfort later in life.

I guess it was some nerves, veins. He said I'd never be able to wear high

heels.

I have never had pain as some of your are describing here. I have the electric

stinging sometimes but just a touch to that area it's subsides. I have had an

upper back shoulder pain that I thought I was having a heart attack (who knows).

I sat in a recliner on a magnetic pad, bought a massage pad for a recliner, for

10 days. It even hurt to breathe deep. I had an deep ultrasonic treatment in

the doctors office but not until I got the shot of cortizone in my shoulder

blade did I get any relief, it was the worst pain of my life. Thank goodness

that has not returned.

They said it was bursitis as I'd had repetition in pulling my scooter out of the

van so many times during the holiday season. I feel it was CMT related. I have

never taken those medications Neurotoin or Provogil (sp?).

My pain came from not having a lot of cushioning on the bottom

of my feet and when I'd step on a rock or something hard it would

shoot a pain straight up my leg and sometimes my knee would buckle and down I'd

go. I had callouses on each foot right under the little toe as I walked on the

outside of my foot.

I wore dress flats at that time and had a closet full of shoes. If I ever fell

down in a certain pair of shoes, I'd never wear them again! However, if I got a

pair I was comfortable in I bought them in every color. The soles had to be

leather and flexible, the heel had to be very low and wide, if heel was narrow,

I'd walk out over the heel.

(I haven't tried the UGG boots as I need them to zip way down to the bottom of

sole to get them on and I don't believe they come with a zipper, I think there

uggg-ly, too, hahaha! would wear them around for softness and warmth though.)

I suffered with these areas on the bottom of my feet putting moleskin

in my shoes, lambs wool, foam pads, etc. then decided to go to a

podiatrist. He cut those " corns " out and it was instant relief when I stepped

down from the table. I couldn't believe for all those years of suffering that

all I had to do was go and have the podiatrist cut them out. Dead skin, no pain

as he numbed it. After I had the initial visit, all I had to do was work on the

area myself and never went to another visit.

Later in life my falls were more frequent and I'd break my big toe, small bones

across top of foot. If it was really bad I'd go to the orthopedist, if not I'd

do the usual routine of R.I.C.E but I'd go to work on crutches and suffer the

pain of walking.

During a fire drill in 1989, I was helped down the flight of stairs and I put my

left leg down first on each and every step. I went down just a flight of stairs

to the next floor. That evening my leg was all tight feeling and the next

morning when I got out of bed my knee buckled and I fell on that foot and leg.

When you have the triple arthodesis and your knees buckle or give out (like a

trick knee

sometimes I think I black out but I don't know) you fall straight down like your

squatting and you break either above the fused parts or below.

So, this time the ambulance was called and into the hospital I

went. I had two spiral fractures of the tibula and fibula. I believe this

happened going down the stairs that day and not from the fall.

There was a gap that needed bone to be filled in and they didn't want

to go in and pin it or bolt it for fear of infection so they cast it

and ordered EBI Bone Healing System. It was a electro type system

that you put on the outside of the cast, plug it into wall outlet and

leave it there for about 10 hrs. a day. Believe it or not it filled

in and cause my bone to heal. It took longer than the 6-8 wks

though. I think system is expensive, but I had insurance and it paid

for it.

Also, I was eating prunes for magnesium and drinking a lot of

milk, etc. and Vitamin D. Anyway, after healing I was fitted for

custom AFOs and forearm crutches.

I slipped the AFOs on over my hose and into Keds Champion Leather sneakers and

continued working for the law firm where other wore stilleto high-heels! The

AFOs back then were a thin clearish white and thicker where needed and at the

ankles cut out where it would give a certain degree of flexibility to the foot.

These carried me well until they started pulling my knees and I

had started gaining weight at this time. Stress from the job! The

weight was the problem and here I'd go again falling but now with the

AFOs and forearm crutches and the weight issue, I couldn't get myself

up and men (4) would have to help me.

So embarassing, and too, relying on strangers, I'd sprain or break that old big

toe and here I'd go again. So, my employer's HR officer told me that after

working there 5 yrs. I could file for their disability. (She was a friend to me

by telling me as I didn't know about having to work so many years before

entitled to file, etc., really I'd not thought about it.)

I'd been there already over 5 yrs. I continued to work, hobbling along with

AFOs and forearm crutches now. I went to my neurologist and PT and said it was

time I saved my strength for my life with my husband and not standing at a

copier and having a collapse that was breaking bones in my toes and feet.

Also, it was time for a scooter. I filed for short-term disability with the law

firm, and after that period of time that ran out, I had the option to return to

work or go on long-term disability. My doctors instructed me to file for long

term with a letter of medical necessity and prognosis of no signs of future

improvement as it is a progressive, even though some have slow progression as I

have, neurological disease that one looses strength, well you all know the rest.

My doctors were ones with MDA and were professors in a teaching hospital, well

respected and there was no doubt in their statements. (not doctors from

Prim-a-care, etc.)

My doctor (an orthopedic who worked with several neurologists) was

deceased and I'd had the forethought to get copies of all my records

way before I needed them. Every time I went to the doctor I requested a copy of

my report or statment as to the reason for the visit. I only joined the MDA

clinic doctors in 1990. I filled out the paperwork by hand. I included every

piece of paper dated back into 1960s. I made multiple copies of all. Mailed it

in and that was all it took.

I understand if you seek an attorney to help you that they take out a percentage

for their fee for the entire time you are drawing the SSI disabiliy. Do it

yourself, it isn't hard at all, but you should back up every statement with an

appointment and office visit reports or details and have it as evidence to the

fact.

The review board knows what C-M-T is (I even included the brochures

describing C-M-T) and if the tests reveal it and you have documented

it by having the copy of the results and doctors prognosis, there

shouldn't be a problem.

Working right up until the time you file may help as well. I do know that if

you get disability from your job, they subtract that amount out of your SSI,

well at least they did out of mine.

Luckily, my SSI amount was frozen at the amount for the first year received, and

any cost of living that I might receive each year wasn't included so I get to

keep the increased amount. Also, your employers disability plan may state

requirements in order to keep

receiving payments, like must be under a doctors care every 6 mos.

Periodically, they send forms to fill out where you have to put your

last doctors' visit. MDA clinic doctors have the knowledge and staff

to handle for you after you have completed your part, you'd just mail

it to them with a cover letter asking them to support your intentions

of not being able to perform your regular line of work duties, etc.

Being with the MDA Clinic is the best possible support for us as that

is what we all need. Right now I see them once a year, unless I have

a problem. Their help is supporting us to make our lives better.

They are on our side and I feel like if you have to have a " disorder "

or " disease " , having one classified with muscular dystrophy isn't all

bad. MDA does a lot for Jerry's kids that's for sure! and, of course, thanks

goes to all that donate!

I have some issues coming up that I'd appreciate your comments on as

well, I'll submit to the group later on.

Donna B.