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• tough time
• Posted: 2009-03-23 21:20:11 By Megan M
• Hello all...haven't posted on here in about a year but feel the need to reach out a bit. Typically I am your happy go lucky well adjusted girl with RP. The last week or so, however, I am struggling. Since being a teen and facing the whole not driving part I have had very few times when I thought "man, I'd really rather not deal with this!" This week I had to admit to myself that my normally vibrant nightlife needs to come to an end. It is too much strain on myself and friends to play guide for me. Any tips on dealing with this new life adjustment? I realize losing that part of my life is minor in the big picture but it's none-the-less hitting home for me. Tips please!

• Posted: 2009-03-24 10:25:02 By Francine M
• Hi Meagan.
  We've all been there or will be at some point in or jouney with RP.
  Don't feel like you have to give up on your life. Look at your life as a little more challenging. I went out with my girlfriends to the clubs up until I got married. You may feel that you are being a burden on them when they really may not mind at all. I was very blessed to have such awesome friends. They watched out for me and laughed at me when I screwed up as well. LOL It went without saying that I never had to be the designated driver for sure. That was always a joke with us. Maybe we should let Beth get us home tonight. Yeah, right.
  I've never had a license to drive. I was legally blind by age 15, but there are a lot of folks out there that choose not to drive for various reasons. Driving is so overrated in the US in my opinion. Where there is a will, there is a way is how I've always looked at it.
  Look deep inside yourself and try to find new challenges. Keep a positive outlook. When I've been down, I picked up drawing and sketching. It helps keep my eyes active and working and I became really good at it from just working at it. I started with just a cup and saucer and a #2 pencil and have gone on to do portraits. I sold a picture of a fairy to a published author to use as her trademark for her books. I was proud of myself. I only have 2 degrees of peripheral left and 20/30 and 20/40 acuity. You can do whatever you put your mind to.
  If you would like a great support group to join where the members are all awesome, join us at www.mdjunction.com in the RP group. Everyone has such a positive outlook and are always there to answer your questions or to just give you a boost when you need it.
  Take Care,
  Beth:)

• Posted: 2009-03-24 16:04:03 By Ken B
• Hi Meghan,
  
  I appreciate your frustration, there are a lot of thigns I used to be able to do but slowly have lost the ability to do them because of RP (driving, reading a regular book). What might help is trying to develop your independance in smaller ways. I actually take the bus to and from work with no real issues, just being a bit more deliberate and more aware of my surroundings does it for me even though I don't see the street signs at all, I just look for bigger landmarks to get off at the right stop, etc.
  
  Another funny thing is that whenever my wife loses something I wind up finding it for her in 1 or 2 minutes, she has excellent eyesight and I just fumle around by feel and voila, have it. I take a lot of pleasure in showing her up that way. :)
  
  Don't worry too much about asking for and needing help from others. Everyone needs help in one form or another regardless of having a disability.

• tough times made easier
• Posted: 2009-03-25 16:56:16 By Denise S
• HI Megan-
  I have a teen daughter(18) that was just diagnosed with RP- she has 15% vision at night at 50% vision during the day. She is a driver-just not at night.She just got her license on the 17th of March-3 months after her diagnosis-but we traced this back to age 6. Her Retinologist said she could drive but had to make adjustments-really looking over her shoulder before merging, etc. She was actually excellent during her drive lessons because of this overcompensation. She was forthright to her friends and they have all rallied around her. THey offer to drive for those night beach outings, she has a high powered flash light that she takes everywhere with her, we found sunglasses that are not disgusting(they are the fitovers) and they look good on her. SHe has to wear those even in gloomy weather or ends up with a bad eyestrain and headache. She likes being at home and we have made sure that we opened up the home to her friends..we will have game night(she is not a square by any means and does party-she tells me)so we might play a game of dirty scrabble-where every word has to have a sex theme. We have crockpot meals and it has been working great not costing me a fortune to have 4 or more big kids for dinner. Her friends are not out driving around and wasting gas, they are having fun and everyone is safe and she doesn't feel left out. She began bowling and that has been fun.Driving at night is out , so she does the day driving and her friends take the nights.I don't think you have to give up anything. You just need good friends and a variety of friends to rally around you and make life easier for you.I hope you find the happy balance. Good luck and Chin up...

• Posted: 2009-03-28 22:56:39 By Maria P
• Hi Denise,
  
  it's great to see such supportive parents. I don't quite understand how much vision she has. We usually talk in degrees and not %???
  
  I am curious as to the type of flashlight she uses as i am looking for one myself.
  Thanks,
  Marisa

• Marissa
• Posted: 2009-04-02 12:44:57 By Denise S
• Since my daughter was just diagnosed(12/24/08) the Retinologist she saw at Stanford said that it was percentages and not degrees. Her visual field test was nearly black, her ERG is where he measured in percentile and the Retina scan showed cyts in both retinas...I am not sure of the brand but will look and let you know the type of flashlight. We bought it at an Army Surplus store if that helps you at all. They have the higher powered with different filtered light and that seemed to make the difference.
  Can you explain the degree vs percentage...so I can educate myself more? Thank you in advance and I will research which type it is...she is on a trip right now to Chico State visiting friends and checking out the campus, but when she returns I can certainly check it out and give you a brand name,, but if you have an Army Surplus store near you give them a call. Denise

• Nitelife
• Posted: 2009-03-25 17:29:42 By erika c
• Hi there..My boyfriend of 3 years has RP and it has progressed. We used to go out 2-3 times a week but he's getting tired of bumping into tables and not seeing peoples hand when they go to shake his. Now we go out 2-3 times a month and you look forward to it more. Now we have are friends over to the house for BBQ's and dinner he's more comfortable and knows where everything is so you don't have to dodge a table or chairs. That would be my suggestion it's just as nice to have your friends over!!

• aw maan!!
• Posted: 2009-03-25 21:09:47 By Oscar N
• Wutsup Megan,
  I just finished writing this huge message in response to yours, about everything, a little about myself, about everything, and when I pushed "submit", it kicked me out! Maaaan, well I just like to point out that I am a few years out of my teens, but I know what the deal is with this RP. Trust me. If you wanna chat or post, that's cool. Hope you have a good day.
  
  Oscar

• thanks!
• Posted: 2009-03-27 12:54:21 By Megan M
• Thanks for the tips everyone! I do have some very supportive friends and I am lucky. I had a friend today ask me if I wanted to go to an concert outside downtown tonight (meaning super crowded, dark and loud) and I simply responded-I don't think I can see well enough for that. She said great, let's go get dinner instead! So I think my fear was that I would be left out if I made smart decisions about what I did. From the looks of it, my friends seem to be completely understanding and willing to modify their plans. Luckily I have my favorite bar/club memorized like the back of my hand and there is an area to sit when I get overwhelmed and an area to stand to stand up and dance when I am feeling confident.
  Anyways, thanks for the tips. Like I said, normally I don't let the small stuff get to me, but I thought I was going to be missing out. Instead, I will just do things differently...probably will miss out sometimes, but hey, who really needs to go out every single night of every single weekend anyways :) I think my liver and bank account will appreciate this new realization!

• Hey megan
• Posted: 2009-07-25 15:18:24 By Kimberly V
• 
  Hey Megan, my name is Kim..I'm 23 and have RP..I know what you mean about driving..I wish I could..I used to but not any anymore..everytime I wanna go somewhere my dad takes me..hah, and the thing about the friends, I'm lucky enough to have good friends that understand my situation, you should to. I rather go out and have fun and people look at me weird when I bump into things than just sit at home and sulk..
  
  -Kim