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Coming to terms with my disability

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tez63
tez63 Community member Posts: 60 Connected
Hi everyone. I was recently diagnosed with Limb Girdle Muscular Dystrophy type 2A and it’s been very difficult for myself and my family to come to terms with it. 

Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 52,591 Disability Gamechanger
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    Hi @tez63 welcome to the forum. It can be difficult to come to terms with a disabilty, for families also.  There are alot of people on here who have had to do the same. So lots of us here to natter to. Are there any support groups around for your condition.
  • tez63
    tez63 Community member Posts: 60 Connected
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    Hi sandy_123
    To be honest I haven’t really looked properly I quest it seems like I’m not sure what I’m doing
  • Sandy_123
    Sandy_123 Scope Member Posts: 52,591 Disability Gamechanger
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    If you Google you might find a support group. However we are a good supportive group, there may also be a member with your condition. I've posted a link for you below

    https://www.lgmd-info.org/resources/lgmd-organizations/
  • tez63
    tez63 Community member Posts: 60 Connected
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    Thank you. That’s very kind. I’m not sure how I use this site for replying I think it’s gonna be a learning curve but really looking forward to talking to different people who hopefully understand

  • Sandy_123
    Sandy_123 Scope Member Posts: 52,591 Disability Gamechanger
    edited September 2022
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    Well your already replying tez lol, just type under any topic that you want to join in with,  look in coffee lounge, you will find it under categories, look faward to seeing you around.
  • tez63
    tez63 Community member Posts: 60 Connected
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    Thank you for your time
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
    edited September 2022
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    Welcome to the community @tez63 :) It's great to see that you're getting to grips with the community already! 

    Would you like to tell us a little bit more about your condition, and in what ways yourself and your family have had some trouble with coming to terms with it?
    National Campaigns Officer, she/her

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  • tez63
    tez63 Community member Posts: 60 Connected
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    Hi. I do not have the strength in my legs to walk very far and my mobility is restricted for bending and stretching. My mental health is not very good. 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
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    Thanks for elaborating on that @tez63 :) 

    Have you considered using any mobility aids to help you with your mobility? 

    Are you receiving any support to help you manage your mental health? I know it can be scary to reach out for help, but it can be really worth it when you find something that works for you. 

    Have you been able to have open conversations with your family about how they've been feeling, any concerns or worries they have, and how they could better support you, and vice versa?

    Sorry for all of the questions!
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
  • tez63
    tez63 Community member Posts: 60 Connected
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    @Tori_Scope
    I am still under the hospital and waiting to collect my wheelchair. So that will help me be able to get some independence back. But I’m now getting anxious about using it. Still ongoing with family but it’s going to take time because it has not been a happy 5 years so lot’s of work to be done
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
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    Hopefully using the wheelchair will help you to gain some independence, and feel more mobile @tez63 :) I think it's quite normal to feel nervous when using a new aid at first, but many people find it really does help them to feel more confident, and get out and about more. 

    Is there anything in particular you're feeling anxious about in regards to using the wheelchair? 
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
  • tez63
    tez63 Community member Posts: 60 Connected
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    @Tori_Scope
    I think firstly it makes my disability real and worried about how I am going to be judged when out and about in it
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
    edited September 2022
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    Some people do unfortunately face negative attitudes from others when out and about @tez63. We recently realeased some research on this, which you might find interesting.

    That being said, I don't think this should put you off from putting yourself out there. I know it's easier said than done. There are many people who'll be inclusive, friendly, and kind. I'm wondering whether @janer1967 may be able to offer you some insight into this. 
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
  • tez63
    tez63 Community member Posts: 60 Connected
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    Thank you for your understanding and advice 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    You are welcome @tez63. It is the very least you deserve. If we can do anything else to support you please don't hesitate to let us know. 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.
  • tez63
    tez63 Community member Posts: 60 Connected
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