Life With Md

hi everyone stumbled upon this page i was looking for a chat site for md. l am 51 years old happily married to a great man also have 2 children who are very much part of my life/ i have limb girdle muscular dystrophy which limits my ability somewhat but life goes on l have a lot of gadgets around the house which help me cope eg..lift up bed, lift up chair. raised toilet seat. special walking frame and a shoprider which i can use outside.l was diagnosed 25 years ago at that time i was still walking running going up and down stairs so was not aware of how debilitating md could be. but you seem to cope at each stage of the wasting.l have a brother with md also he is permanently in an electric chair and has people to come in and care for him but he gets on with life and has good friends.l live in queensland australia on 50 acres of land surrounded by native trees and abundant wildlife. although l don't drive anymore my friends come to visit me. my husband made me a lift so that if l fall l can wiggle onto a flat seat and l can lift myself up to a standing poisition. very handy at times.Well thats my story look forward to corresponding with anyone that wants to talk. joylaughs

joylaughs joylaughs
4 Responses Feb 27, 2009

Dear Joy,<br />
I have received an email from a friend in India who wants details of the kinds of equipment which make it possible for you to live at home well, particularly the lift device your husband installed. I am wondering if you would be willing to give me your email address so that I can pass it on to my friend.<br />
Regards<br />

Hi<br />
My names Liss Im a 41 yr old mother of 2 living in NSW with FSH MD. I'd love to chat sometime.<br />
All the best.<br />
<br />
Liss xxx

I love your community name and your story is inspirational. I also live in Brisbane, recently moved to help my son, 33, with Beckers MD. He, like you, has a positive attitude and is inspirational. I've recently started a blog for MD to get info on one page instead of taking ages to find stuff.

Hi joylaughs! I am happy and sad at the same time to read your story. I am happy because despite your disease, you seem to be able to live your life "the normal way". You have access to resources that help you move around. I am really happy for you.<BR><BR>I am sad because you remind me of my dad who also has the same disease as yours(which brought me to this site). He just passed away last Dec. 2008 at 50 years old. And just like you, he also has two kids, the other is my elder sister.<BR><BR>We live in a third world country. There is really no medical attention given to him by the government due to the unpopularity of the disease here. He was not able to work too since our community is not handicapped-friendly. <BR><BR>I am really sad that I was not able to give him a good life while he was still alive. But what can I do, I am still a student. But do you think an awareness campaign about the disease here in our country would help other people who have the same disease live a better life? Do you think I can do it?