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.

[mmMekitty]

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! ,

[Ujos]

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.

[Ujos]

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

[Hanna3]

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?

[Ujos]

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.

[mmMekitty]

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