SGVBOB
BSB Addict
...Not to intrude on another's reply.....
I had hydrocephalus, as well, diagnosed at 6 months old, and as a result, have had, in the past the gamut of seizures , and have been on every known anticonvulsant, until a collegue of my (at the time) neurologist had me try another medication, not totally approved by the FDA, but with 100% success rate in Japan (at the time). I have since relocated to the "Denverish" area, and I am seizure-free for (going on) 5 1/2 years now, the LONGEST ever.
Now, about the SS Administration....I had to wait to get on Social Security Disability(I was TOLD THIS by the SS 'Judge), "because "I was not 'disabled enough in one area, (that being epilepsy-I didn't have them frequently enough), so they had to pick a 'BOX' that would CLOSEST fit what I have, so they can 'check it'." So in the government's eyes, I am disabled under 'CEREBRAL PALSY', which I do NOT have, but OH WELL.
The entire 'court session', when it came down to it, consisted of ~20 minutes, where my atty didn' t have to do anything!
(In a way I was glad, but in another I was pissed off, because, I spent $4k....NOT out of pocket, (from what SS owed me in back pay), for 20 minutes!
Clock, you hit the nail right on the head with the whole SSI and SSD process. It is a night mare. Here is one for you. My brother was born with Hydrocephalus or water on the brain. It crushed the right rear quadrant of his brain and severed his right optical nerve. He finally received his SSD when he was 22. He continued on it until he was 33. He went through the sheltered workshop experiences and eventually he went on to a full-time job with job coaching. He worked there for 15 years before being laid off. Then he was denied three times again before being approved. Any way I digress. Two months after he was hired full-time, the social security office declared that he was no longer disabled. They chased me and my brother every 6 months for 2 years before I got angry enough to involve a congressman. For all of the money to be paid back that he received while on SSD. My father was his payee before me. I had only been his payee for four months. None the less they tried to hold me accountable for a little over $38,000.00... It was just a loop hole in the system.
I had hydrocephalus, as well, diagnosed at 6 months old, and as a result, have had, in the past the gamut of seizures , and have been on every known anticonvulsant, until a collegue of my (at the time) neurologist had me try another medication, not totally approved by the FDA, but with 100% success rate in Japan (at the time). I have since relocated to the "Denverish" area, and I am seizure-free for (going on) 5 1/2 years now, the LONGEST ever.
Now, about the SS Administration....I had to wait to get on Social Security Disability(I was TOLD THIS by the SS 'Judge), "because "I was not 'disabled enough in one area, (that being epilepsy-I didn't have them frequently enough), so they had to pick a 'BOX' that would CLOSEST fit what I have, so they can 'check it'." So in the government's eyes, I am disabled under 'CEREBRAL PALSY', which I do NOT have, but OH WELL.
The entire 'court session', when it came down to it, consisted of ~20 minutes, where my atty didn' t have to do anything!
(In a way I was glad, but in another I was pissed off, because, I spent $4k....NOT out of pocket, (from what SS owed me in back pay), for 20 minutes!
