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I have gone to the blindness.org site and read the info there.
My 33 y/o son was diagnosed 5 years ago and I was wondering if anybody here has it, if you're willing to share some tips that may be valuable for the future.
He is still working. He has a Master's Degree in Public Policy, but can't find a job in that field. He's currently working as a Paramedic. His employer had him on nights for the past two months knowing that he couldn't see in the dark, so I bought him a head lamp to help see.
He is on daylight now and wants to continue to work until he's legally blind. He's talking about going back to school for Nursing. That way if he gets in some years of nursing experience, he may be able to work in the legal aspect of nursing once he's considered legally blind.
Any suggestions on preparing for his future would be greatly appreciated.
Yes, I do. So far the only treatment I have heard about is Vitamin A-Palmitate, which reportedly slows the progression of the disease by about 20%. It can be ordered online, about $30 for a year's supply. Few drug stores carry it.
I was first diagnosed with it when I was about 35. Its progress cannot be reliably predicted. I was told then I might have 10-20 years of useful vision. I was found legally blind for Social Secuity at age 50. But now, 25 years later, I still go about without a white cane, and I have no trouble reading, because vision remains good in the remaining central field of view. I watch TV with no problem, but can only see a small part of he screen at once. I have a white cane, and I will soon need to start learning how to use it. Curbs are a menace, but I've learned where they all are in places I routinely walk to. They occur in many places where their only usefulness is to trip blind people.
My field of view is about the size of a business card held at arm's length. When I set something down on the kitchen counter, it can take quite a while to find it again, so one learns to remember where he has put things. It helps to step back a few steps, to bring a larger area into view, making it easier to find a coffee cup on a table.. "Tunnel vision" doesn't really describe what I see. My brain remembers everything that is in a field that I have scanned, and makes me think I can still see it. It's not like looking through a tunnel, with black all around -- my mind still fills in that space with remembered images.
Most of my neighbors and many of my friends do not know I am blind. I do all my own shopping and housekeeping, and I stopped driving completely, sold my car, and let my license lapse about five years ago. The main social effect is that I cannot see it when a cashier hands me my receipt, or points to where I swipe my card, or hands me a bag of groceries. I just stand there like a dummy.
Night vision is also seriously impaired -- I never go out at night, and have to keep lots of lights on in he house all the time.
It is hereditary. I have an uncle and a cousin who have RP, and that cousin has two children who have it, that he knows about so far. All on my mother's side. I have no grandchildren.
THANK YOU so much for answering the post! I can't tell you how nice it is to meet someone with RP and read your positive feedback about it.
You seem to be doing great. Your story give me hope for a much better outcome than I was anticipating and I am truly thankful to you for that.
He went to a genetic specialist after his diagnosis and in his case, it's a fluke in his genes. If he ever does decide to marry and have kids, he will get tested to see if he'll pass it on to his kids.
He hasn't seen a retina specialist in over 5 yrs. due to lack of health insurance, but he has it now and needs to find a new specialist because of the insurance "network" restrictions.
He's had problems with night vision since before he was diagnosed. He will drive within a 5 mile radius of the house at night, but it's only on the well lit roads. If he and his g/f go somewhere at night, she'll drive.
He used to go out with friends occasionally to bars, but he stopped doing that about a year ago for fear of bumping into someone that might have a nasty attitude and want to fight.
I find at amazing that your neighbors don't even know. It's a comfort to know that your brain remembers the areas outside of your view.
The doc told him that he could be legally blind by 40, but like you said, it depends on the progression of it.
He's under the impression that he'll need a guide dog, but it seems like you're doing fine by not needing your cane.
Even the fact that you can see the size of a business card at arms length is encouraging.
I thank you from the bottom of my heart for answering this post, giving me a better outlook on his situation. I know everybody's different and his may progress faster, but at least it's not the scary picture that I had painted in my mind.
I do not have RP but am totally blind (legally blind at 35, totally blind at 40). I made many friends at the school for the blind with RP.
The loss of my driver's license was very hard due to the sense of losing an important part of my independence. The places that we lived had no public transportation (Army family) and since I am also in a power chair I could not simply use a taxi.
May I suggest that your son get to know the services offered by the blind school in your State. From talking with my friends with RP it was useful to learn many skills while they still had good, usable vision. Simply having a white cane can be dangerous if the skills are not properly taught (how to use your hearing for things like crossing a street; hearing when nearing walls, etc. and how to safely maneuver in crowds and in the streets).
There are classes in technology, braille, household skills (cooking, cleaning, folding money & tricks for shopping).
I wish your Son the best; the loss of sight can be a truly depressing time and it is hard on the family as well. The frustration can be profound; especially for an young/middle aged adult still raising a family and in mid career.
Thank you so much for your suggestions! They are somethings I've wondered about, but wasn't sure on whether to approach him about, but I think he's emotionally ready because he was diagnosed 5 years ago. He did go through depression at first and anytime in the past that I'd mention contacting the BVR here, it was almost like he was too proud. I'll deliver your suggestions to him for sure!
He told me a couple of weeks ago that he had a Nun as a patient in the ambulance and she was talking to him and he asked her to hang on a minute because he couldn't hear her. He sat down next to her and she said something to the effect of young kids and loud music. He told her that he had constant ear infections as a baby and had tubes put in his ears 5 times, which is the cause of his hearing loss. He also told her about the RP and she said she would pray for him. He told her that God gave him this problem for a reason and it was up to him to accept it and hopefully find positives in it. I cried when he told me that because it's the first time he spoke so open and positively about it. I hugged him and told him how proud of him I am.
He does have a girlfriend, but I honestly don't know it will lead to marriage. I know he wants to have kids and I know the fear of the g/f thing scares him because he felt before her that nobody would want him.
You have such a kind heart in answering and posting your suggestions because of your friends having RP.
I can't express how much you and Jtur88 replying to this topic means to me.
You sound like an extremely positive person and it's been a pleasure meeting you this way.
I don't know what to say to you for fear of saying the wrong thing. So, I'll just say that my heart goes out to you and I wish you well in life.
cam1957~
You may ask any questions of me as I have an extremely thick skin! I almost forgot to mention the Library for the Blind if your Son enjoys reading, but the strain may be too hard on his eyes.
They issue a player and books can be downloaded from the internet. Books may also be played on ios products (iPad, iPhone, etc).
Texas waives all tuition and college fees for any student who is blind, so you might want to check and see if there is a similar exemption in your state. Your son might be able to re-train for a profession in which blindness is less of a handicap. I never thought I'd be on here calling Texas a progressive state, but there it is.
I'll definitely tell him that. We were just talking about him going to Nursing School the other day, but he said he wants to get his current school loans paid down before he racks up anymore college loan debt.
He's not considered legally blind yet, but of course he hasn't seen a doc in 5 years. I'll definitely have him check that out. That would be such a blessing if he could go to school sooner!
I've been putting off posting this topic for a couple of weeks now, and you've made me so happy and grateful with all of the help that is being brought here! Thank you so very much!
Texas waives all tuition and college fees for any student who is blind, so you might want to check and see if there is a similar exemption in your state. Your son might be able to re-train for a profession in which blindness is less of a handicap. I never thought I'd be on here calling Texas a progressive state, but there it is.
Agreed. I worked as a Certified Ophthalmic Technician here in TX for several years and am working as an ophthalmic optician now. I was involved in a lot of the testing for patients with low vision issues for the TX Council of the Blind: RP, macular degeneration, retinal detachments, etc. The American Council for the Blind has many resources available to help your son. There are also low vision aids he can use to help him see as much as possible for as long as possible. One of the low vision aids that can help him, suprisingly, is an Amazon Kindle. A CD poster told me about she uses one to read and doesn't read print books any more because the Kindle is so much easier. I agree with whoever suggested he train in a career that is less vision dependent. That way he can continue working as long as he can. A good retina specialist may also be of help. I don't know where you live, but if you happen to live in Texas, I know of some good retina specialists I have worked with personally. PM me if you are interested in one of their names. I wish you and your son well.
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