Retinitis Pigmentosa

[Ujos]

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.

[missep123]

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.

[mmMekitty]

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

[Ujos]

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.

[Ujos]

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

[Hanna3]

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!

🙂

[mmMekitty]

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

[mmMekitty]

Hello Ujos,

Entered other gender bathroom, yes. Now I try to find the sign, which is usually raised symbols ∨ 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

[Ujos]

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

[Ujos]

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