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02/15/2009 12:09 PM

Sharing experiences..

Posts: 4
New Member

Hi there. New to RP and the forum. I was recently diagnosed in October of 08. After trying to fine tune my vision with glasses unsuccessfully for about 3 years, I found myself in the optometrist's office 3 times for adjustments in 2 months before we realized that my vision was suddenly deteriorating that fast! They sent me for visual field rests and referred me to an ophthamologist (already had one as I have had uveitis in both eyes for 6 or 7 years). He told me my visual field had diminished horribly in the last year and sent me for ERG and angiogram among other tests. Everything came back fine except for ERG which showed "severely impaired responses to light and darkness in both retinas". I had already been struggling with night driving, glare, tripping, etc. for a few years but kept being told "everyone goes through that". Now I have a bit less than 10 degrees visual field left and poor central vision but I still get around fairly well in good light and watch tv, read and use the computer with strain but it's ok. I have lost my job, driver's license and acquired my first white cane. I have found this part the most difficult as I do have usable sight left. The idea is that with the cane I will be able to look up and walk as opposed to watching the ground every minute. I just kind of feel like I'm faking it to use a cane when I can see. I will have to get over myself I suppose and get on with the program at hand. Doing LOTS of walking. I am waiting for a decision from disability insurance and hope to be retrained in something. I'm off to read everyone else's experience and see what I can learn.Smile

02/15/2009 01:43 PM
Posts: 2771
Senior Member

Welcome to the group. I have been putting off getting a cane, myself. But, I'm getting tired of tripping over things. It's very embarassing in public. I hope that you find support here.

02/15/2009 05:27 PM
Posts: 42

Hi, Welcome to the group! I am so happy I have found a place to listen and share with so many people with RP. I have not gotten a cane yet either, but I have thought about it. I am constantly tripping over kids and their rolling backpacks when I pick up my children. I have thought about a cane just to sweep the area but I would get lots of funny looks since I still drive! I have considered an umbrella.......we'll see.

Good luck, Cecelia

02/15/2009 07:15 PM
ScrattymePosts: 786

Welcome to the board. it's great to have you.

I have had my cane since I was 15. I'm now 40. I've just recently, within the last year or so, been taking the mobility courses again. I know it's the hardest thing to adapt to, given the fact that we still have usable sight, but I have had enough falls and broken glasses and black eyes to last me a life time. The older I get the harder it is to overcome the injuries. NOW, is the best time to learn it. I recommend that anyone who is diagnosed at least adapt to having the cane even if only in your home that you feel comfortable using it. The more you use it, the more it becomes a part of you. Habit, like reaching for your glasses first thing in the morning. It really beats the heck out of black eyes and broken bones. Trust me.

It sounds to me that you are doing all the right things to stay active. I love walking as well. I just have to do it on my treadmill these days.

Wishing you well with your disablity claim. It can be a hard time to get through. As far as the retraining goes, is that being offered through you local voc rehab department? They are great with so many things to help you out.

Anyhoo. Glad you've joined us. The more the merrier. If you need anything at all, feel free to drop a line.

Take Care,



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