When to Stop Driving as a Person with Retinitis Pigmentosa or Low Vision

When to Stop Driving as a Person with Retinitis Pigmentosa or Low Vision

How I made the decision to stop driving as my vision decreased because of Retinitis Pigmentosa.

#retinitispigmentosa #blind #blindtobillionaire

[conniephillips]

You did a beautiful job of describing what it is like while our vision is declining. No one wants to give up the freedom of driving but we know when it's time.

[zarina]

My son has RP and he is 17 . He wants to drive so badly. Listening to you helps so much. Thanks :)

[delladavis]

Retinitis runs in my family. My mother & grandmother we’re both legally blind as well as my siblings. I have nieces & nephews that r loosing their eye sight as well. I have been very blessed as of now I only need reading glasses. My mother raised 7 of us without skipping a beat & that makes her my absolute she-row. I applaud u Matt may God continue to bless u & ur family & keep u safe, healthy.

[bamablind]

Hi hi Matt, I just thought I might add a few scenarios on this topic from my perspective not only as a legally blind person, never driving, and also as a rehabilitation counselor for the blind. I immediately conjured up three distinct people parentheses clients) of mine while I was a counselor. One came to my office quite often my secretary would look out my office window to see when he was arriving. He had retinitis pigmentosa with a field vision of less than 20° and was driving daily during daylight hours. Each time he came he would park his vehicle and then unfold his white cane and find the front door to our building. He needed his cane to get down the hall and find my office. I would always assist him to a chair which he was unable to find The second client that comes to mind is the one who sold real estate for his livelihood and he was a very good realtor. He had to, however, Dr. a great deal to show properties so he purchased a new car with a sunroof and was excited because looking through the sunroof, he was now able to read the street signs which were directly overhead. He explained that if he were any further away from the street signs he was unable to see the print. He could tell shapes of stop signs, yield signs and maybe a couple of other distinctly shaped signs but was an able to read any print until he was approximately 20 feet or less. He also had retinitis pigmentosa with a field vision less than 20°. The third client that I remember was an Air Force officer who only used interstate travel because she explained it was controlled access. She told me that she would make her way carefully off-base and get onto the interstate, following the white lines. She would count the exit by watching the right-hand right white lines and knew which exit was hers which would immediately take her into her neighborhood where she lived. One day she hit a child on a bicycle. She was utterly destroyed with guilt. The child ended up being OK but it was so traumatizing for this officer, she immediately began the process for exiting the Air Force. She had retinitis pigmentosa with a field of vision less than 20°. The issue is that with tunnel vision you still have a pretty good acuity but the field of vision, The ability to see what is around you just is not there. So it is so difficult, in my opinion to make that decision of when you really cannot drive anymore. Driving is such an independent asset and is so very, very, difficult to give up. Anyway this is really a great topic to discuss with in the blind community and thank you for bringing it up.

[KonjikiKonjiki]

Hi Matt it's Mel. I remember that eye exam goggle setup at the DMV, brings back memories of standing in a lineup in front of a crying baby for 45 minutes. :) I could only see with one eye at the time, and the person at the desk had to check with a colleague to make sure she could issue me a license when only one eye met the sight requirements. ^_^

I've been back in Canada for several years since then, and fortunately my ophthalmologist kept me in the loop in terms of how close I was getting to the cutoff of 20 / 50 for daytime-only driving. I knew I was getting close to the cutoff, and one day on my commute into work I had a close call. It was a bright day, sun shining towards my face rather than towards my back, and I had a long lineup of cars behind me. I was going a little too heavy on the gas but that part of road is usually pretty empty. Except that day, when a black ghost car (unmarked police car in Canada) had pulled someone over to the shoulder right where a patch of shade started. There were flashing lights on the bumper but I was so light-blinded and worried too much about what the people behind me thought of my slowness. I didn't have a collision or hurt anyone, but knew that it would be inevitable if I kept driving. That was last fall and I'm still grieving the loss of ability.

[ArTiQu]

I don't drive since last year at night, because I realised when I just walk down the street...I don't see people are coming from the left or right side when they are right on your shoulder side. I normally see they way later. That was really weird and my final decision to quit it.

[marwanal]

Hi Matt good to see you about driving I only drive at day light some time or my sister drive me if I need to go to some places it's hard to drive especially if you have Tunnel Vision I hope some day we back to drive normally because its more adependent say hi to Corey.

[markandmandyd]

Hey Pal.. Clicked on this and happens to be 4 years ago to the exact date.. So Hi Our Friend 4 years later.. From us both Mark and Mandy..

[raeklein]

I ALSO HAVE RP AND IM 28 I NEED FRIENDS OR PEOPLE TO TALK TO THAT CAN TALK ABOUT IT WITH ME AND JUST HAVING A SUPPORT GROUP

[sabrinamenten-caenen]

Hi matt, i follow you completely with the need of indepence. I have always dreamed about that. Sadly i dont have a drivers licence eather. I was planning to get my licence 2 years ago but i saw in on time that it wasnt good for me. You probably know that my husband had 7 severely accidents sometimes almost deadly so because i am capable to take more responseble decicions i thought if i can go for my drivers licence than we arent needy anymore. You are so lucky that everyone wants to take you everywhere because my family isnt so helpfull or want money or they say youre problem not mine. Because of my anxiety disorders i made up my mind and tought its so risky. I mean what if i get a panic attack during drive that could totally a disaster. I have once a attack during a walk i ran out of the street and i didnt notice if there was a car or something. My husband later tolk i was very lucky. Ive could have a accident by than. But yeah it sucks when you have to relie on someome. But now its saver. We have a pass for a special need taxi for a little bit money we can travel to family or other events. And we have another pass for travel further away. And with the last one we go on vacation in november. For 59 km we pay E11.80 i dont know what the distance and dollars for you but this is it for us. And thats very cheap because my stepdad ask E50, - to drive. Its 50 minutes drive. But i was wondering my ex was color blind and had night blindness so is that what belongs to rp or not. Because he couldnt drive by night. We were in bed one time looking above and he told me if he looked what distance he saw and that wasnt far and than i told what i saw and he must turn his head to see what i am talking about and it was a big shock for him that i could see so much from left to right without turning my head. Its a really big difference. He was riding a bike but only by daylight. I am glad that you didnt have heavy accidents and its pitty that the doktors stop you driving but for youre safety its good. But i would understand if you feel sad or angry about it. And here in the netherlands you can start with drive by the age of 18. Not long ago they make it possible to start lessions with 17 but you have still to wait until youre 18 that you may actually drive. And youre licence are good for 5 or 10 years just like youre id or pass than you have to reverse youre licence. And here in the netherlands they test youre health and eyes and stuff when you are 60 or 70. Here they say its youre own responsebility to keep youreself and others save. Its very stupid i think because for example my husband thinks he could ride savely and wont accept that he is not capable and we all see and know he cant and we couldnt stop him for driving unless we get a judge to decide he cannot speak for him self. And we have a list with 1000 reasons and i think the judge give us right but yeah than he is angry that we did bring him in court. Now he listens but we fight hard to stop him driving. Walking on the street by himself is dangerous because he make wrong decision. Love sabrina

[sriramcan]

I have been diagnosed with atypical RP since I was 5 years old along with color blindness! Now I am 44 and the condition is exactly the same. I heard there is an Ayurvedic clinic in Kerala India where they can stop the progress of RP.

[Khaled.almohamed]

Im suffering from the same thing and im 18 and i dont know if should be drive but i really wanna be independent

[aezah]

Did you hear about the clinic in Canada

[mrsteresa]

I had to start using light on dark long time ago

[hussanshahid]

Cant you use telescopic aur prism lenses for driving??

[Kad]

I lost my left eye only, I don't know if I can use my right eye only, because in my country driver set on the left side so I don't know.

[SunilKumar-wixy]

Sir this is sunil. I am 28byears old I have this disease(RP) from past 2 years. I can't able to see at night. And I am from india. I also need community and support for RP

[Kad]

Is life too bad with that? Can I enjoy without eyes?

[mrsteresa]

He meant, check out this video I made several years ago about the story of when I accidentally drove a car.

[jackwhite]

I have retinitis pigmentosa i just turned 18 do u think its worth learning to drive