Retinitis Pigmentosa Support Group

not new to rp ... hello all!... am 48 was diagnosed 15 years ago and could see kinda o.k then... other than night blindness since childhood and had lost some peripheral vision ....since then i have gradually lost most of my peripheral vision and am at a time in my life where work is to dangerous to continue (heavy construction)...too many close calls , i have "faked" it all these years as this has progressed and kept it to myself and close family and friends... but it has gotten very difficult to work safely and if my co-workers or management knew how bad my vision was i would have been run off years ago .... so i am in that transitional stage of disability and not working and it is hard but i will get through it .... i went back to an retina specialist last week to see where i stand and i have 10% peripheral vision left and with glasses i have 20/30 central.... probably better than some and worse than others??? i dont know i have just spent the last 15 years adapting to my condition ...it was my best way of coping .... i hape to be active here and get to know others with this disease...

thanks

Lyndon [img]

Thanks for joining and welcome to the group.

i also have macular adema ? im being treated for this with eye drops the doc says it will make my central vision clearer if i can get it cleared up.....its like a swelling of the back of the eyeball i think ....if the drops dont work he says they can inject steroids in my eye lids , now doesnt that sound like a fun?

as far as my ssdi claim goes i am waiting for an answer from the admin. all my paperwork is in all questions answerd now how long do they drag their feet? i will keep everyone posted as to the progress or lack of!!

Lyndon,

I am with you. I work in commercial real estate and will have to start thinking about "what next?" Too young to not work but how do you sell a building if you can't see it? And walking around job sites - they aqre scary! I show buildings that are under construction, no lights inside and stuff everywhere! We just have to have faith that our journey is taking us down a path that will be even more fulfilling and exciting then the one we've walked so far. cdilj

Hey Lindon, I'm new to this support group. I'm a 49 year old female. I was diagnose 5 years ago but looking back at all my clumsy mistakes I think I've had this for 40 years at least. I was relieved in a sense when I found out I finally could explain why I couldn't see at night and had lots of close calls. I live in a small town and was in our high school rop heavy equipment class just because it was all boys! but I would do stupid things and make mistakes and just thought I was stupid but we are still young and want to work and be productive. I wished I could give you an answer on when to pull the plug and go on disability but it really is a pride thing. The embarassment is overwhelming. I have mostly taken care of the elderly and do Hospice work and it sucks when they see better than me. I'm thinking that if you went out on disability and worked independently so you could move slower? and be more careful at least that's what I do. I'm on disability and I hook up with small jobs where people know and trust me. good luck, Becky

thanks for the post becky ....actually im on disability right now ....it seems as though everything is done and now im waiting on my first check .....im not embarassed about going on really i worked my whole life and paid into it .....but the process is quit frustrating..... fourtunately eye cases seem to get setteled more quickly than other types of disability cases, so we all have that going for us ....i had intentions of working maybe as a personal trainer along with my disability but in my case i cannot work at all and draw my dis. from my former employer ...so i wont be working ....

Girth

Hey Girth I'm glad your got your disability. I got mine when I was 39 and am now 49 and it wasn't because of RP.It was bad car accidents while on the job as in people died and I continued to work as long as possible. I have always taken pride in that fact. I just got from what you were saying is you liked to work. I'm from a small town and because everyone knows me I'm able to pick up some small jobs as a caregiver because disability has the right to work program. As I became in need of the work gratification feeling like I wanted to make a difference in the world still. It's my passion..Hospice care. I was trying to give you ideas to take your talent and do it with people that know and trust you. For instance rent or get a piece of heavy equipment and help a neighbor for 100 bucks here and there. As a personal trainer you have lots of options you could even volunteer. Not any of my disabilities from my many accidents and surgeries has been as difficult as this vision loss and I guess thsts why I'm reaching out. If I get to the point I can't walk so be it but what can't drive heck no! I'll purchase a golfcart. I'm good tho and obviously long winded. Good luck with it all. Becky

thank -you becky those are good ideas.... thanx for taking the time to post .....i will most likely do some volunteer work since im unable to hold a regular type job

G

Girth you are welcome. And you will find your niche in due time. Up beat and positive! keep on keepin on! talk to you later. Becky