Online forums

Before you can post or reply in these forums, please complete your profile

Complete your profile

Before you can post or reply in these forums, please join our online community.

Forum membership is open to anyone residing in Australia.

Join the online community Community rules Coping during the Coronavirus outbreak

Forums / Welcome and orientation / Retinitis Pigmentosa

Topic: Retinitis Pigmentosa

16 posts, 0 answered
  1. Ujos
    Ujos avatar
    8 posts
    25 October 2021
    I live with an Inherited Retinal Disease (IRD) Retinitis Pigmentosa (RP), a blinding disease without treatment or cure and I would like to connect with others in the community living with RP and their families / Carer to exchange tips and strategies to navigate and conquer life with a vision impairment and to provide support to each other when our days are a little cloudy. This is my first of many posts and I am unsure where to post.
  2. missep123
    Community Champion
    • Outstanding members who have volunteered their time to support others here on the forums
    missep123 avatar
    1059 posts
    25 October 2021 in reply to Ujos

    Hi Ujos,

    A very warm welcome to the forums. I don't have RP myself but I truly hope that you find people on this forum who can relate as it is comforting knowing that you are not alone.

    Please feel free to post here whenever you would like as we are very happy to have you here.

    1 person found this helpful
  3. mmMekitty
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    mmMekitty avatar
    3453 posts
    25 October 2021 in reply to Ujos

    Hello Ujoxs,

    I don't have RP, but I do have Glaucoma, from a relatively early age.

    I know there are a number of organisations out there, who specifically focus their work on Helping peoplewith vision loss, low vision & blindness. Have you sought out any of these:

    Vision Australia,

    Retina Australia,

    Blind Citizens Australia,

    Guide Dogs Australia (not just about Guide dogs. I first learned how to use my white cane through Guide Dogs Queensland., back in 2001, I think it was.),

    to name a few. There may also be state based organisations in the state where you live.

    Would you like to talk about your experiences with regards to your vision loss? How are you coping? I am open to talk about, pretty much anything, really.

    mmMekitty

    1 person found this helpful
  4. Ujos
    Ujos avatar
    8 posts
    26 October 2021 in reply to mmMekitty

    Hello mmMekitty

    Thank you for the fantastic list of supports, I only just missed you at GDQ I trained for my cane in 2000 with RP, 4 years ago Glaucoma decided to also be my life long friend…..

    I have also found Quantam Australia great for resources and support and Vicki Anderson & Associates provide tremendous support, therapy and resources (nth of Brisbane)

    I would like to write a book about the experiences we have all had over the years the awkward / embarrassing / dangerous / funny situations, that we end up in.

    How much vision do you have remaining?

    Have you ever got into someone else’s car ?

    Have you entered the wrong Gender bathroom at a busy shopping centre ?

    Do you have family with Glaucoma?

    recently I have had many difficult days, my Son was diagnosed with RP.

    Thank you for time and reply.

  5. Ujos
    Ujos avatar
    8 posts
    26 October 2021 in reply to missep123

    Hello missep123

    Thank You very much. You don’t need RP to chat to me, lol.

    I have many immediate family members living with RP, however it would be great to find RP suffers outside my family to share experiences and chat with so we can make Retinitis Pigmentosa (RP) a household word and improve the lives of RP suffers and their families.

    i do not want anyone else to walk in my shoes, I have solely raised 3 children, legally blind for more than 20 years, without any support (not my choice) and isolated from the world.

    I want to make change and have Retinitis Pigmentosa recognised as a Disability by our government so RP suffers can have the support they deserve and desperately require.

    Kind Regards

    Ujos

  6. Hanna3
    Hanna3 avatar
    3591 posts
    26 October 2021 in reply to Ujos

    Hi Ujos and everyone else here, hi mmMekitty!

    I am losing sight in my right eye due to an untreatable growth on the optic nerve. The worst scenario is it also happens in my left eye but so far I'm OK..

    I lose depth perception so although thankfully I still see out of my left eye I can't judge distances. Stairs, rough ground and driving are difficult and I can't see anything on my right so I collide with people in shops or crowded areas.

    Opening clip lock bags, finding the arm holes in clothes, seeing at all in low light is difficult and it's very tiring.

    The social worker here got Vision Australia to ring me and they are sending an occupational therapist to assess what they can do to help. I'd recommend them for sure.

    People are odd, some are understanding and others are rude or dismissive because they don't understand what losing depth perception means.

    I'm clumsy now and I miss the edges of things! So welcome and I'd be interested to hear more about your eye condition and how it's affecting you!

    🙂

  7. mmMekitty
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    mmMekitty avatar
    3453 posts
    26 October 2021

    Hello everyone,

    I have never had good sight. Born with Rubella syndrome, & therefore, had cataracted lenses. The left lens was removed when I was 10 months old, the right lens was removed at 2 years old. Because theright lens was removed so much later that eye was never as good, & I could not read with my right eye, & did not ever have good stereoscopic vision. I learned a little work-around by comparing objects , just also understanding how things are at varying distances from me. I wasn't really conscious of how I learned to navagate my world. But I was called 'clumsy' (& many other words to insult & denigrate me). More or less clumsy than any other kid, I do't know.

    But my balance has also always been poor. & I have now lost most hearing in my right ear, which may or may not be Rubella Syndrome related.

    They even thought I had learning impairments when I was 5-6 years old. & changed their minds.

    I found out about the Glaucoma in the late 1980s. It has been difficult to control at times. Have had a couple attempts to save my right eye, but now it does not function at all as it should. Really I don't understand what is going on, only that if I cover my left eye I can see nothing (but phosphines my brain makes) & if I cover my right eye I don't notice it is covered. Ophthalmologist shines a light in my right eye, I don't see it, & he said my pupil does not react. My left pupil still reacts, but slowly.

    He said my brain is trying, but not very successfully, to piece together insufficient information, so what I perceive is incomplete, & rather scrambled.

    The phosphines are colours which are dense enough to distort my colour perception, & what the colours are changes. Can be brighter, or dimmer, too. Worse when I am tired.

    I also have a nystagmus, which is bothersome when I do manage to get things in focus, especially stripes, & print. The edges go wavy, difficult to track. I do not really read print, because I need to zoom it to a point where it becomes impractical, but I still find it easier to edit when I can see what I am doing.

    So, I do have this text-to-speech software. I keep forgetting all the keyboard shortcuts, so I am notbenefitting from it as much as I'd like. I fear my memory is going downhill too fast, & am concerned for what I will be doing if I could not remember even what little I can do now. That is something I will need to look into.

    Other questions, I'll post about soon.

    mmMekitty

  8. mmMekitty
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    mmMekitty avatar
    3453 posts
    27 October 2021 in reply to Ujos

    Hello Ujos,

    Entered other gender bathroom, yes. Now I try to find the sign, which is usually raised symbols &or lettering, & more commonly now, includes a little braille sign as well.

    I think twice if a car pulls up at a taxi rank where I am waiting, especially if it is a silver colour car, & try to determine if it has a bump on the top. Some drivers will call out, others do not. But that's become better over time.

    I have nearly sat on people, once in a bus, another time at a seat near a taxi rank. The one on the bus just laughed about it. The other sort of 'went ff' at me, thoroughly affronted.

    I often have people darting right in front of me, as if they want to get tripped up by my cane. I find it quite startling. I primarily took to using my white cane because I was having more difficulty judging distances when going up or down any steps or on sloping surfaces, or even if there was shading overhead, forming patterns which confused my brain, I guess, as do coloured patterns on some floors. Now, without it, I am very unsure of each step I take, not sure if there is anything which might trip me up, like a stick,or a divet in the pavement, anything.

    At first I had gained much confidence when going out. However, that has waned, & COVID-19 hasn't helped, because I am not going out nearly as regularly as I had, & when I do, I feel confronted with how poor my eyesight is. I feel constantly on edge, & feel I have to be concentrating so much on what is around me, where people are, remembering where things to avoid colliding with are, any unexpected hazzards, I find I cannot feel comfortable, relaxed or confident at all. I feel much better if I have a sighted guide with me.

    Eating is a messy affair, especially because I'm not told how the food is arranged on the plate, how it is presented, i.e. cut up, gravy, bones, etc. But I had thought, decided years ago when I was feeling self-conscious eating at cafes & restaurants, that since I bought & paid for this food, I will eat it as I am able, & people around e can go & get ******! I don't have to be with someone to eat in public, don't have eat with entirely proper table manners, nothing! What's it to them, anyway.

    I have an awful time with colours, but still want to have what I like, & matching aswell. I know I ought to give up my preciousness about colours. But if I could find someone who whould make clothes for me, in styles, fabrics, & colours I like, I would pay high prices for that service.

    Later,

    MMMekitty

  9. Ujos
    Ujos avatar
    8 posts
    3 November 2021 in reply to mmMekitty

    Hi mmMekitty,

    Thank you for sharing you story and experiences with us all, you made me laugh and laugh again especially when you were trying to find a seat, I have almost sat on many people on the bus or at the taxi rank, some are not so understanding. I have had children run and jump over my white cane at the shopping centre and adults that have walked straight in front of my cane numerous times, I had my cane bent by a man walking across my path, cane went between his legs and tripped him to the floor.

    Ujos

  10. Ujos
    Ujos avatar
    8 posts
    3 November 2021 in reply to Hanna3

    Hello Hanna3 and everyone else

    Thank you for sharing your story.

    Is it a cyst that is growing on your optic nerve ?

    Hopefully your OT assessment will assist you to seek the supports and technology that you require now and in the future for you to live as close to a normal life possible.

    a lot of sighted people just don’t get it and will never understand the many different situations and stages we transition through living with a visual impairment.

    I wrote a piece about life, living with Retinitis Pigmentosa, I will post this soon.

    Ujos

  11. mmMekitty
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    mmMekitty avatar
    3453 posts
    3 November 2021 in reply to Ujos

    Oh, yes, people do dash in front of me & my cane, as if they are 'playing chicken', perhaps wanting to trip or make me collide with them, or seeing how close they can get even when there is plenty of room around. I don't get it. I've thought I'd like to electrify my cane, for a 'shocking' experience! 😼

    I had one fellow yell at me, "Watch where you're going!"

    I've also had kids very curious, but there parents pull them away, as if terrified, even though I don't mind explaining to kids, letting them see how the ball spins, or how I fold it, etcetra. I usually have Something hanging from the wrist cord , for kids to play with, & it also seems to help the parents relax.

    One thing I find very annoying is that, while it is nice to have a braille trail*, many people have no idea about why it is there, & stand on it, chatting together, or on their phones, & would still be there when I collide with them, apparently confused & shocked.

    I think there is still not enough public awareness of things like the braille trail, what having a white cane or guide dog means.

    In crowded places I feel I am as a little ball in a pinball machine, bouncing off everything/everyone unless I go at a snail's pace, & risk people overtaking me & darting right in front , too close.

    They do that on escalators, & stop on the step immediately in front of me & make it very difficult to step from the escalator safely.

    Oh, thinking of braille trails & walking in straight lines, I once went into a narrow arcade, thinking, short-cut through to a parallel street, but somehow found I had turned myself around & had come out the way I had gone in! Keep left, I'd said. I could not figure it out. I walked around the long way, exhausted as I was that day. & maybe that's all it was, me being exhausted.

    Since a simple short-cut can defeat me, I need much more than braille trails in big shopping centres.

    mmMekitty

    *A braille trail is a narrow strip in laid into a footpath, or along areas such a public malls with raised bumps. It is intended for people using white canes to assist them to travel safely through these pedestrian spaces. There are also marked areas near intersections, or at certain junctures, or at pedestrian crossings, for us as well, & at bus stops, etc. WE tap along & keep ourselves walking in a straight line! ,

  12. Ujos
    Ujos avatar
    8 posts
    3 November 2021

    Hello Everyone,

    Lost@Mind (Impact of living with Retinitis Pigmentosa) 1999

    I lay awake each and every night, wondering how life will be without any sight.

    How do you cope in a new world of being blind, How do youI leave living a normal life behind.

    As night falls all fades to black, upon sunrise I gain some sight back.

    How can it be print I can read, but when I go out a white cane I need.

    I am pushed to my limits, to face every day, I don’t want to live life the stressful way.

    I think of my future and how it will be, the thought of losing my sight really scares me.

    The toughest task, faced so far staying off the road, never to drive a car.

    Please wake me up and say it’s all a bad dream and tell me that reality is what it should have been.

    Friends and family I see no more, push them away too many times before.

    My mind is scattered, My lifelong dreams have been shattered, the thought of going blind is really messing with my mind.
    Living with a RP life is out of my control, help me piece it back together help me find my soul.

  13. Ujos
    Ujos avatar
    8 posts
    3 November 2021 in reply to mmMekitty

    Hey mmMeKitty

    Oh yes the Braille trail in the Queen St mall, I collided with a Man using his mobile phone and I was almost knocked over backwards, another time my cane went straight between the mans legs and I walked into the back of him while he was having a causal chat with friends.

    electrification for our white canes would sure raise public awareness, great suggestion mmMeKitty.

    At my local bus terminal children leave trolleys, school bags, scooters and skateboards across the Braille trail, I agree there is definitely room for education and public awareness for all topics you raised and I have had similar experiences with children being curious and asking questions, with around half the parents pulling them away telling them not to be rude.

    Ujos

  14. Hanna3
    Hanna3 avatar
    3591 posts
    3 November 2021 in reply to Ujos

    Hi Ujos,

    May I ask what age group you are and what you've been told about the prognosis of your sight issue and if you have any family support?

    Do you know if you will definitely lose all sight or if you will have diminishing vision but still some?

    I think you have to have time to grieve what you are losing before you can go forward.

    You are facing a frightening unknown future.

    Can you tell us a bit more about your situation so we can be of more help?

  15. Ujos
    Ujos avatar
    8 posts
    4 November 2021 in reply to Hanna3

    Hey Hanna

    RP is hereditary and unfortunately there are more in my family with RP than with eyesight, those with sight need to work full time and us with RP look after each other and ourselves, family support is limited, however there is always someone that understands the path you are walking as they are heading along the same path.

    6 generations of my family have lived with Autosomal Dominate Retinitis Pigmentosa, a degenerative blinding disease without treatment or cure, the gene responsible is still unknown, there is no set rate of loss of sight and each individual is different, our ophthalmologist can not advise how long our sight will last.

    I sometimes say living with RP, I have solar powered eyesight without battery back up - RP pigments our Retina which no longer reflects images to our brain and we can only see with good natural light eg. Outdoors

    Over 6 generations only Males have lost all vision, all Females have managed to keep some sight.

    Myself I have RP and Glaucoma so I have one disease where I count on natural light to be have any sight and one disease that my eyes can not deal with light and glare.
    Left eye 1x surgery for glaucoma and 2x surgery for cataract.
    Right eye 2x surgery for glaucoma and 2x surgery for cataract with a 3rd procedure in a few months to hopefully get some sight back in my right eye.

    Recent Cataract surgery did not go as planned and my right eye has been stitched for the last 9 weeks.

    I have no eyesight from 30 minutes after sunset until 30 minutes before sunrise each day as I can only see with natural light. Night blindness is one of the first signs of RP, each child born into our family have a 50/50 chance, and so far us with RP by far out number those without RP.

    Growing up in a family of 6, my mother was the only one without RP.
    I have 3 children, 1 with RP inherited from me,

    I live with my Son that has RP and we walk into each other inside our house regularly.

    Retinitis Pigmentosa is not a recognised disability with the Australian Government and that makes it extremely difficult to seek the support we require, living with RP we get NO recognition until we lose our eyesight and cross the line of legally blind then we qualify for assistance at this point we have lived with diminishing sight for 20 years and no sight every night since our mid to late teens.

  16. mmMekitty
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    mmMekitty avatar
    3453 posts
    4 November 2021 in reply to Ujos

    Thanks Ujos for sharing "Lost@Mind". You describe your feelings regarding an uncertain future, with few answers coming your way. I notice we don't cope with one change when we have something diagnosed which doesn't have just one stop to make. We have a series of changes to cope with. Each one has to be recognised & dealt with.

    I'd been fairly used to my low vision, & had been told nothing would change. I never even imagined driving a car, but I have known people who had. I also admit to some yearning to simply go out in my car whenever & wherever I want, not relying on public transport, taxis, or my helper to drive me, & making my plans according to what transport I can have. I've seen how hard it is for people to give up dreaming of driving, or giving up their licences, & how restricted in their lives they feel.

    I've struggled with my mobility. I had gained some confidence when I first learned to use my cane, but now I have lost more than I had gained. I find going out very stressful, even scary. The only way I feel I can walk feeling any relaxation, is with my helper, who is not trained to be a sighted guide. I'm aware of that, so I can't completely relax & enjoy being out in a public environment.

    I struggle with my memory, & I don't remember everything I've tried to learn, especially when it comes to my assistive technology. I know there are things I would like to use, but I also know it gets to be too much to remember very quickly.

    Personally I would find it very difficult dealing with the idea that half of my kids might have this condition.

    My understanding is that it is not the condition which is recognised as the disability, but theprofound impact of the condition which is defied as a disability. I had some problems getting the severity of my vision loss recognised because I could not do the visual field test. I don't know that they even take into account such things as how long it takes for eyes to adjust to dramatic changes in ambiant light, or how glare is so much a problem, or those vivid phosphines blotting out portions of my remaining visual field. There are just the two measures they rely on: acuity & visual field, as measured under controlled conditions.

    RP, Glaucoma, & other conditions do cause significant disability,but because some people can have these conditions & not have severe vision loss, that the conditions themselves cannot be classified as disabilities.

    mmMekitty

Stay in touch with us

Sign up below for regular emails filled with information, advice and support for you or your loved ones.


Sign me up