Disabled people
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justkel_justkel_ Member Posts: 3 Listener
edited October 2019 in Disabled people


  • chiariedschiarieds Community Co-Production Group Posts: 8,593 Disability Gamechanger
    Hi @justkel_ Welcome to this forum, where I hope others may better advise to help your Mum. I'll offer a few thoughts meanwhile:

    Are you able to talk to her GP? Or get him/her to visit whist you're there. Hopefully her GP might better help with her diabetes & you could mention your other concerns. Perhaps ask for an Occupational therapist to visit to assess her needs.

    Does she receive the Personal Independence Payment? If not, it might be worth applying, as she would hopefully get some money that could be used to help her.

    Have you looked online for other support groups? This from an NHS website: https://www.nhs.uk/conditions/vision-loss/ Scroll down to 'Support Groups.' Perhaps you might find information there to help with some social activities.

  • justkel_justkel_ Member Posts: 3 Listener
    Hey.. yeah my Mun’s had all these issues for well over a decade, she’s in hospital regularly & has multuple assessments etc. She also regularly sees professionals in regards to the type 1 diabetes, She does everything by the book yet her blood sugars tend to be out of control. though the diabetes isnt really an issue for her, compared to the mobility issues, being bed-bound etc. I was moreso looking for advice to improve quality of life in terms of trying to find fun activities/social ideas etc for someone who just cant do almost anything anymore. Used to be able to take her out in her wheelchair etc. But things have declined so much that’s she’s constantly stuck in her room. And I can see it is destroying her mentally. And being completely blind; entering into a lot of confusion also, I’m just trying to find activities that are suitable for her needs. I’m trying to set up an account for her to read audiobooks & I’ll read to her sometimes also. But I’d love to find her some kind of hobby that fits all her criteria.

    But thanks for the tip; I’ll explore some other forums for ideas also. 
  • pollyanna1052pollyanna1052 Member Posts: 2,031 Disability Gamechanger
    Have you had input from the Blind Society charity? I`m sure the will be able to help.
    I feel sad for your mum being stuck in one room. Cant she go in her wheelchair now, for some fresh air on her face outside?
  • justkel_justkel_ Member Posts: 3 Listener
    Nope! I’ll give them a try. Thanks for the tip. But over the years, when she first started losing her eyesight, we did have more involvement from support groups etc. to help her cope. But that all began around 14 years ago or thereabouts. Also she’s on really powerful meds for chronic pain, which have her sleeping all day pretty much... she doesnt like to use the wheelchair much, she can get on her feet a little & uses a zimmer but collapses a lot. She’s starting to get a fear of walking the more she falls & the more breaks she has. But yeah, she does get some time outside, but definitely not enough. It’s really just been this year where its all becoming too much for her. Its not just the blindness, life has dealt her one hell of an awful card. I’d just like to find her something different to enjoy & generally just improve what she has left of her life, she more or less lives through her kids now & tends to cherish quality time over anything else. But she needs more, she needs something for herself to enjoy 
  • chiariedschiarieds Community Co-Production Group Posts: 8,593 Disability Gamechanger
    Hi @justkel_ The RNIB have a free 'Talking Books' service: https://www.rnib.org.uk/talking-books-service & may have other resources that can help your Mum, or point you in the right direction.

    The rest is all a bit of a vicious cycle....her chronic pain necessitates strong meds., but to keep the pain under control these make her sleepy. I 'think' you had also mentioned that she has osteoporosis (apologies if I've remembered wrongly), which make her more liable to experience fractures; 'tho weight-bearing, i.e. standing & walking, would help, but she has difficulty with this.

    I appreciate that you want to find leisure activities/hobbies to help your Mum, but personally feel addressing her undoubted medical issues with the help of her GP, or any of her specialists, might give her a better chance to do so....especially regarding her pain meds. Perhaps other meds/Pain clinic could be tried to better manage her pain?  She's virtually bed-bound due to her pain meds, which then severely limit her mobility + she has an understandable fear of falling.

    You are a great advocate for your Mum, btw.

  • Joanne_ScopeJoanne_Scope Scope helpline, Scope adviser Posts: 190 Pioneering
    Hi @pollyanna1052,
    I am struggling to find the Blind Society. I can only find links to local charities such as South Lincolnshire Blind Society.
    Is there a national organisation that I am missing? It would be useful info for me to pass on to people!

  • chiariedschiarieds Community Co-Production Group Posts: 8,593 Disability Gamechanger
    Hi @Joanne_Scope Hope you don't mind me jumping in here. I think Pollyanna may be referring to the Royal National Institute of Blind People (the RNIB) which is a national charity. I gave a link to their free Talking Books service above.

    It's the first on the list on the NHS website link ( https://www.nhs.uk/conditions/vision-loss/ also mentioned above) under 'Support Groups,' if you scroll down to this. Other charities there may help other people depending on their specific problems, but the RNIB is the best known.

    Here's a link to their home page: https://www.rnib.org.uk/ I hope that's what you're looking for.

  • Joanne_ScopeJoanne_Scope Scope helpline, Scope adviser Posts: 190 Pioneering
    Hi @chiarieds,

    Thanks for jumping in-always welcome! :)

    I know the RNIB well thanks. They do a fantastic job. 

    I found other groups such as South Lincolnshire Blind Society and was checking to see if there was another "umbrella" organisation in addition to RNIB that I had missed.

    I also thought it was worth clarifying as referring people to The Blind Society could be a bit confusing.

  • pollyanna1052pollyanna1052 Member Posts: 2,031 Disability Gamechanger
    Yes, of course it is the RNIB...just couldnt think of it`s full title. Thanks x
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