Disability for PSC?

[Guest guest]

Gracie,

By all means it would be a good thing to pursue. Phil was unemployed 2

months before he was diagnosed and got so sick with the PSC. So when he

kept having cholangitis attacks we switched him from unemployment to state

disability. How can a 56 year old person who is in the position of plant

manager, find a job when he was having to go to the hospital a couple of

times a month and was so terribly fatigued. He got on - no problem, his

doctors supported him and Kaiser did all the processing for us. Then he got

on permanent Social Security disability. You have to be off work for 5

months to receive that and have to be on SS disability for 2 years to

receive Medicare (go figure), who would need it more than someone on

disability, government. Some people have said that they were turned down

the first time. I believe that if your doctors back you and any good doctor

should, and that if you are thorough in filling out the forms you will get

it the first time like Phil did. Our state disability went for a year and

he was able to collect from both for the overlapping 6 months and even if

you apply after the fact, they back pay you. It is definitely worth the try

and worth persisting even if you might be turned down the first time.

Being on disability gives Phil the freedom to plan his activities around

when he is feeling good (like not first thing in the morning). He keeps

busy with stuff that he is able to control when he does it. It's not

anywhere near what he was earning before. But feeling bad all the time

after dragging oneself through a long day just isn't worth any amount of

money. I am able to provide him health insurance through my job.

Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status

3-UCLA-2/2000, living Los Angeles suburbs, CA

[Guest guest]

Hi Everyone,

Hope you all are having safe and happy holidays. Some of you know Ed

and I and know that Ed is the one with PSC, has had it since 1993 and

has been on the transplant list in Boston since 1998 (he's stage 3).

He works at a golf course, close to home, where he has worked for the

past 25 or more years. Ed turned 50 this year. He's home now,

because his job is seasonal and doesn't return to work until March.

Recently he's been talking about going on disability and is curious

about what it entails, whether it's worth it, etc. I think it's a

good idea because his work is very strenuous - he works with heavy

machinery and does a lot of physical labor in the hot sun. I worry

about him and I know he needs more rest. The Winters are great, but,

the Summers are unbelievably hard for him (us) as he works weekends

as well as 40 hour weeks.

We know nothing about disability. Can someone explain the basics to

us? Right now his boss pays his Blue Cross insurance. Hopefully he

will receive a transplant soon, but, that's doubtful given the long

waiting lists. Is this a wise thing to persue right now?

I appreciate any info you all can provide. Have a happy and healthy

New Year,

Gracie and Ed Reynolds

PSC (93), UC(83)