Hi, my name is Tanga! — Scope | Disability forum
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Hi, my name is Tanga!

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Tanga
Tanga Community member Posts: 8 Listener
in Start here and say hello!
Hi. My partner, 57, lost most of his sight suddenly just under 2 years ago and I am now his carer. I'm looking for a group where we can glean useful ideas, thoughts, learn from others experiences. Perhaps share some of our own. I'm aware I say 'our' and 'we' a lot, but thats the way life is when sight is shared. :-)  I'm also hoping people will talk about holiday experiences, what worked what didnt what pitfalls, suggestions! We are currently hoping to get away soon but its a bit scary. 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community 

    I am severely vision impaired as well as wheelchair bound 

    I recently booked holiday through on the beach who were very impressive with dealing with my requirements not been on the holiday yet tho 

    Also going to isle of Wight in Aug and we go away quits a lot for weekends 

    Have a look in the category for vision impairment on here you might find some interesting info 

    I was referred to my area sensory team who were brilliant for recommendations for aids 

    Any questions happy to help if I can 
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hello @tanga and welcome to the community, it's lovely to see you join us.

    I have sight loss myself and know that it can often take quite a while to adapt to changing vision, so I just wondered how your partner is managing at the moment? You said it's been two years, so I hope that he has been able to adapt and get into the swing of things :) 


    As well as this community I would recommend joining your local RNIB Connect Facebook group, which will enable you to keep in touch with what is going on in your local area for those who have sight loss. 

     

    In terms of holidays, we have a tag on the community dedicated to those so I would certainly advise having a look through it.


    This is a very supportive and welcoming site to be a part of so I’m sure you’ll find it to be a positive outlet, feel free to have a look around and get involved wherever you’d like 😊 A few notable pages I’d recommend visiting would be:

    • The virtual coffee lounge which is one of our categories, in which we play games and talk about general subjects such as hobbies and interests
    • The recent discussions page, which shows an overview of everything happening across the community
    • The categories page, which shows a full list of discussion groups on the community

    If you have any questions at all then don’t hesitate to ask.


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  • Tanga
    Tanga Community member Posts: 8 Listener
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    Thank you all!
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    You are welcome @Tanga. It is the very least you deserve. How are you today? I hope you are well but if you need anything, we are all here for you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • Tanga
    Tanga Community member Posts: 8 Listener
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    I'm ok, thanks. Tired but ok. I wish I had thought to find Scope earlier!
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    I'm glad you have thought to find Scope now @Tanga. It sounds like you are glad you are here too. 

    It is positive to hear you are okay. I hope you can get the sleep and rest you need. 

    If we can help with anything, please don't hesitate to give us a shout  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • Tanga
    Tanga Community member Posts: 8 Listener
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    Things have been somewhat chaotic for a number of reasons lately but I hope to dig through posts for useful gems soon.  One thing I need to explain I think, is that my partners sight fluctuates. It is only a tiny little window and we never know when he is going to have a relatively clear day or a cloudy one. The latter is more common. So it is hard to adjust and plan ahead. Also, due to the way he lost his sight (NAION, consultants agree most likely Covid triggered), that little bit could go at any time. All of which makes me scared of taking us on holiday and away from specialists. I know, we have to do it or we will regret not making the most of our time, but it is scary.
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    It sounds really difficult that things have been somewhat chaotic for a number of reasons lately @Tanga. There’s absolutely no pressure to share anything you don’t feel comfortable with. However, I am wondering, would you like to share more with us about what the chaos looks like for you at the moment? We are here for you if you would like to share more with us.

    I can hear how difficult it is for you that your partner’s sight fluctuates and you never know how much or how little your partner can see on any given day. It sounds like this makes adjusting and planning ahead particularly difficult for you. It appears like your partner’s sight is really unpredictable – especially if you don’t know if it might deteriorate. Overall, it sounds really scary. Is there anything which might help this feel manageable (and less scary) for you at the moment?

    Additionally, you mentioned you hope to dig through posts for useful gems soon. Are there any particular gems you are hoping to find? We might be able to support you in finding the gems - we will definitely try to help you to find the gems you are looking for. You know yourself best though, please feel free to guide us.

    We are all here for you and listening to you. You don’t have to face this, or anything else, alone if you don’t want to :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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