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• Driving
• Posted: 2008-01-23 13:46:19 By Christy P
• Hello All,
  I'm a 32 year old single mom. I was diagonsed with RP when I was 17. My mom and grandfather have it so I was familiar with the condition. my mom was able to drive until she was in her early 50s so I sorta assumed I would have the same luxury. I am now legally blind and know I need to turn my keys in pretty soon. Does anyone have any advice to make this transition easier. Giving up driving has been my 1 fear and I don't know how to face it.

• Re: Driving
• Posted: 2008-01-23 14:28:48 By Lisa E
• Hi Christy,
  
  I was diagnosed with RP when I was 25 in 1990. I was the first in my family to have a record of this disease. I have always known I would have to give up driving one day and that day came in late November 2007. (I gave up driving at night in 1993.) I know how hard it is to let go of that last bit of independence. But on the other hand, you have to be aware of what could happen if you kept driving and you hurt someone or yourself. I had a minor fender bender last summer and that was my wake up call. Thank goodness I didn't hurt anyone. Through the years friends would say, 'you need to quit driving', well, that's all well and good, but I still work and I live alone so who would take me to work? I don't live in the city . . . Finally, my best friend sat me down and made me see that it was time. Fortunatly she lives near me and works near my office, so it was easy to figure out the logistics. Now that its been a few months, I realize that I don't miss the anxiety that came with me driving and worrying that I would get into an accident. Worrying that it would start raining on me and I would be stranded until it stopped because the rain/glare really messed with my eyes. I know how hard that step is to take, but I encourage you to take it. I'm not one to ask people for favors, but my friends have really stepped up to the plate and helped me. I've had people that I know only thru my job that have given me their phone numbers and said to give them a call if I need them. Its really been amazing. I wish you luck with your decision.

• Re: Re: Driving
• Posted: 2008-01-23 14:53:32 By Christy P
• Lisa,
  Thank you so much for your post! The hard part is, to me I see just as much as I did 15 years ago (since it's such gradual progression of loss I'm unaware of it). It's hard to imagine that I'm missing so much that I don't need to drive anymore.
  
  Out of curosity, did you keep your car? I know I'm going to keep my license active (I can't bear to not have one) and I'm leaning towards keeping my car if for no other reason than safety (so it appears someone is at my house) but I'm not completely sure. We'll see.
  
  Also, if you don't mind me asking, what degree of visual field do you have? I need some perspective on that. I have 20 in my left eye and 15ish in my right. My mom has 8 degrees remaining and she gave up driving several years ago.

• Re: Re: Re: Driving
• Posted: 2008-01-23 15:17:35 By Lisa E
• Mine was also such a slow progression that it was really difficult to determine how much I was losing. In the last year its more the glare and haze that bothers me. Especially under flouresscent lighting. It feels almost like my glasses are dirty all the time. I clean them 100 times a day and it doesn't help!!
  
  Yes, I still have my truck. I can't let go of that yet. At least with it in the driveway, I still feel somewhat normal when I see it there. And like you, I like the security feeling it gives me. I live alone and it looks like someone is there. I just canceled my inurance. My neighbor wants to buy my truck, but I'm not ready for that yet. I know it sounds silly to some, but I've already given up so much that I just want to hang on to it awhile.
  
  I have very little peripheral vision. Less than 10 in both eyes. I'm shceduled for a visual field test soon. I'm also in the process of applying for disability.

• Re: Driving
• Posted: 2008-01-23 18:06:18 By John C
• Being a car collector ~ i was devastated when my specialist discovered that i had driven my car to see her ~ there and then she asked for my licence and had it cancelled
  It took me a few month's to get over my loss of confidence and independence but i soon realised that all was for the better ~ i had to admit that i did have some narrow escapes (strangely red cars seemed to my main problem)
  I feared the rain and the wet roads as i couldn't see the white lines in the road ~
  I feared cresting hills at sunrise or sunset and roads where the sun hits the screen full on and the sunvisors afforded absolutely no protection at all ~
  I feared shadows as it was like driving into a black hole
  My biggest consolation is that my specialist had the good sense to stop me as i don't know how i would have lived with myself if i hurt, or worse, killed someone because of my negligence at not recognising that i wasn't a capable driver any more
  I still have my cars as friends drive me around in them ~ at least now, i can relax in my car and really enjoy them.
  
  John

• Re: Driving
• Posted: 2008-01-23 20:00:32 By John A
• Hi Christie:
  
  Well I have a different perspective from Lisa and John. I was diagnosed with RP at 10 years old. That was in 1970 and the doctors told my parents that I would be totally blind at 13 years old. Well I am 47 years old and I still have some forward vission in both eyes. They really didn't know that much about RP back then but all through high school I thought I could see well enough to drive. I even had to take Drivers Education because there was no place else I could go under a teacher's supervission. Well needless to say I tried all the driving simulaters and thought heck yeah I could do this. But my parents had the last say and I began to notice problems with my periferal vision myself. And who knew that it would take such a long process in losing my sight. There are still good days and some bad ones but we deal! So I have had to plan rides all my working life and I will not lie to you it is not easy but it can be done.
  There are shared ride programs availible where ever public buses run. You have to schedule in advance for rides to and from your destination. But keep in mind these are shared rides so scheduling can be a task for the provider which I'm sure by now have gotten better at it.
  But even though I have never driven before I sill wish that I had the option of walking out my front door hopping in to my car and off I go. Never having to schedule rides along with back up rides to make it to where I'm going.. I currently car pool to and from work so that is working out fine. But it is hard to fine someone who is ready to take on the responsibilty of getting some one to work on time everyday. My employer is understanding enough. I have gotten over many roadblocks and hurddles dealing with my vissual impairment but transportation still seems to frustrate me.
  so I commend you all for making the responsible decision in putting down your car keys!
  Good luck to you Christie and remember to keep fighting blindness at every turn and step of your life. RP may have taken our sight away but we shouldn't let it take the rest of lives to

• Re: Re: Driving
• Posted: 2008-01-23 20:10:02 By Christy P
• John C. - I have had RP for 15 years and I just learned that everyone doesn't struggle with the sun when you're coming over a hill. I know the sunlight you are talking about and for the life of me I couldn't figure out why car makers didn't make visors differently or something. I guess it's because the rest of the world doesn't deal with it the way we do.
  
  Thank you all so much. This is helping me a great deal and I'm learning that there is life after (or instead of) driving...accepting it may take a little time but I'm getting there.
  
  John A. - I never thought about it from the perspective of someone who never drove so I can only imagine how difficult that is.
  
  Again, many thanks and the common theme seems to bewhile it makes things different it's not impossible and there will be a level of relief when I retire my keys.
  

• Re: Re: Re: Driving
• Posted: 2008-01-23 22:55:19 By Darran Z
• Christy,
  
  If you have that low of visual field, you'd likely be driving illegally anyway. Many states have visual criteria for driving, ranging from having no less than 90 degrees.
  
  So if you are in an accident and the police know, then you can get screwed big time. I've posted articles of blind drivers killing people because they didn't hang up the keys.
  
  For me, I was in a solo accident (totalled the car) due to weather. Fortunately, no citations were written because the cops were out early due to all the accidents of the weather. I hung up the keys and said "no more."
  
  It's really not that hard as it is. I'm a Dad with three kids but I've managed without driving for 8 years now.
  
  Darran

• Re: Re: Re: Re: Driving
• Posted: 2008-01-24 16:44:01 By Eddie L
• i was diagnose with RP (USHERS) when i was 15. i was classified legally blind when i was 28. Drove till i was 32 and after the last wreck i gave it up, was not worth killing someone or getting sued. I have not drove for 13 years now and it was HARD at first losing that indepenence.

• Re: Driving
• Posted: 2008-01-23 22:23:13 By Janice K
• Hi, I'm a 51 year old pediatrician and I've had retina trouble noted for about 5 years. I stopped driving at night about 3-4 years ago, and stopped driving all together in October of 2006 at age 50. The sunlight, glare, and rainy days were awful--and sometimes I would just get to my destination and just cry--I was both relieved and scared. I talked with a couple of friends and they said "you have options". I sat myself down and thought--"what are my chances of having a bad wreck because of my vision--or hitting somebody--in the next 10 years?". I felt like my answer was 50-50. I didn't like the odds. It was not scientific, and no doctor told me that I had to quit. It was just a gut feeling. Being a pediatrician, I've spent lots of hours at the bedside of children who have been injured. I just couldn't do it anymore--couldn't take any chances. I stopped driving the next day, decided to keep my car for the time being and did a "no car experiment". For about 6 weeks, I didn't drive. I rode the bus, got rides from friends and walked my butt off. It was hard because it was getting to be the cold and dark time of year, and the town doesn't have a great bus system. BUT!! It was one of the best decisions I've ever made. I sold my car after 6 weeks. Changed my job. Changed lots of ways of doing things. But, I never ever have to worry about hitting some kid. I never have to worry about crying that "I didn't see him. I'm soo sorry." I have lots less headaches, saved lots of money, eat all the chocolate I want because I walk so much. Just my two cents worth. I know it's a hard decision, and nobody can make it but you. Nobody knows how well you see, or what it feels like to you. The thing that helped me the most was to realize that I DID have lots of options, and just because I had done it one way didn't mean I had to keep doing it that way. My very best to you, and prayers for you on your journey.

• Re: Re: Driving
• Posted: 2008-01-25 14:04:01 By Drew C
• my perspective is a little different to most people on this thread.
  
  i was diagnosed at 13 but my vision became a problem by the time i was 18 so i basically never got my license.
  
  since i never drove in the first place it wasn't a problem for me. i would take public transport or a lift from a friend/relative.
  
  while i can understand the fear of losing another section of one's independance, i've always been a little surprised so many legally blind people continue to drive despite the obvious dangers involved. to me the risk of killing someone due to my desire to be independant was a terrible idea, hence why i decided not to start learning at 16 (while my eyesight was still okayish).
  
  mistakes happen on the road, that is life. but not when you know you are tempting fate constantly. that is just selfish, as harsh as that may sound. i always felt killing someone else was a great fear to me than dying myself. only because i knew it would have be squarely my fault.
  
  so really, putting aside the illegal aspect, or the independance and convenience of driving, if you have any moral fiber you will give up the license. it will be depressing at first. losing another layer of independance or freedom will do that to people, but it's only natural, and something to be fought against.
  
  i am sure if you sit down and really think about the potential scenario of killing someone and the reason why they ended up dead, you will find it easier to cope with losing the license.
  
  it's simply not worth the risk.

• Re: Driving
• Posted: 2008-01-26 10:20:14 By Paula N
• I was diagnosed at age 35 but continued to drive for four more years. gave up the night driving first and then a year later handed over the key all together. It was so hard but I have adapted. learning to ask for help is always hard. still have car and drivers license but the teenagers have about driven it into the ground!
  i can't get everywhere i want to go when I want to get there but it is workable and I don't live where there is public transportation. the only taxi is in a town about 9 miles away
  Paula

• Re: Re: Driving
• Posted: 2008-01-28 12:49:03 By Christy P
• Drew,
  Thanks for your reply and while I find lines like, "if you have any moral fiber at all..." overly harsh and accusatory I will assume it was meant to be helpful.
  
  As I said in my initial email, I'm working through this transition and I'm doing the best I can.
  
  

• Re: Driving
• Posted: 2008-01-27 22:21:32 By Natalie C
• Hi Christy,
  I'm a married mom of two living in the burbs and I've told my story dozens of times, but I'll keep doing it to save lives. I gave up driving in Oct. 2004 when my youngest daughter was 4mo. old and I pulled out of my subdivsion and clipped the backend of a pick-up I never saw coming. I knew the pregnancy had taken a toll on my vision and I had been researching ways to keep driving safely. But after 19 years of a perfect driving record, I quit cold turkey, turned in my leased car (which was due anyway) and 7 months later I turned in my license of my own accord. I knew if I kept it I would have days where I would be able to convince myself I was safe to make just a little trip... I also wanted to be the one to make the decision, not the Bureau of Motor Vehicles--it was my way of taking control of something I really had no control over. And by the way, all my friends and family were trying to convince me that I was still okay to drive--but I knew in my heart I wasn't. I had about 15-20 degrees of vision at the time. The thought that I could have possibly killed my daughter was motivation enough. I hate not driving, it ****! I hate asking for rides everywhere and working around everyone else's schedules, but it beats spending the rest of my life knowing I might have been responsible for taking someone elses. I just told my 7 year old today, that I'll be the only mom who is ecstatic when her daughter gets her license--most mom's dread their children driving. I also promised her I'd be riding shotgun everywhere she goes and singing to all MY cheesy music even with her friends in the car!!!

• Re: Re: Driving
• Posted: 2008-01-30 17:38:43 By Marisa P
• As always, this is an interesting thread! I stopped driving at night about 8 years ago because the glare blinded me and I just felt like there was just too much I wasn't able to see. I stopped driving altogether a year ago at 52 mainly because of the horror stories I heard here and on other RP-lists. I haven't had any accidents but I know my husband worried every time I left the house. I had between 15 and 20 degrees left and my doctor simply told me not to drive unless I had to. We sold my car and it was strange not to see it in the driveway. My license is good for another two years and I haven't decided whether I'll just turn it in or take the test to see if I can pass. :)
  
  Yes, it is difficult to give up driving especially when you live in a city with no public transportation. I rely on family and friends to take me places and so far it has worked out. Now, if was still working, that would be another story.

• Re: Driving
• Posted: 2008-02-20 12:07:35 By Corey B
• Hi Christy!
  I decided to quit driving in the middle of completing a bachelor degree. I too was single with two boys to raise. it was truly the hardest thing I ever did. I enlisted the help of every family member, friend, associate, agency, and anyone else that I could. it takes a lot of planning and sacrifice, but knowing that I will never be responsible for injuring, or killing another human being because of my low vision disability where I take comfort. Good luck! I hope you make the right decision.

• Re: Driving
• Posted: 2008-02-28 17:05:29 By Janet C
• My story is similar to many of yours. There is no easy transition, especially if your doctor has recommended you quit driving. I still say I would drive in a dire emergency, but I hope that never comes up. If you still have a license but decide to quit paying auto insurance, you will have a difficult time reinstating the insurance. Mine immediately sent out a letter asking why I was cancelling my insurance. It's moot for me since I never intend to drive again. Although it was a gut wrenching decision, I envisioned a child running into the street and my hitting it because it was in the periphery I cannot see. That pretty much settled any bravado I had about still being able to see to drive. I also had the fortune to have moved into the center of my town shortly before my RP diagnosis (luck or fate??) where I am within walking distance of most every need. I highly recommend city living now. It isn't for everybody and one's circumstances may not warrant it, but it makes life simpler.