Coming to terms with my disability

tez63

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. 

Sandy_123

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

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

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

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

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

Thank you for your time

Tori_Scope

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?

tez63

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

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!

tez63

@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

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? 

tez63

@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

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. 

tez63

Thank you for your understanding and advice 

L_Volunteer

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 

tez63

Thank you