I'd love to hear what it's like to live with MD. Or, just please, share your true thoughts, happiness, frustrations, joy, etc.... I'm a family member who desperately need to understand what one goes through on a daily basis, weekly, etc..
Thank youfor sharing.
Dear Terriesales so sorry to here the news about your family members. I took care of my mother till she passed away do to Limb Girdle Muscular Dystrophy my brother also has it and so do I. I have now experienced both sides and all people are different at dealing with their disease. Mother was very bitter about her disease but I have to say she did manage to live alone till she was 68. After she fell and broke her hip she could not walk at all and ended up going to the nursing home. This was mainly due to the fact that I was then diagnosed with the same thing and had a brother that also has the same thing. Please keep in mind its o.k to offer help the person always has the option of saying no and don't take this as a put off but some times you need to know that you can still do things for yourself. When I am having a bad day I will ask my husband for help and he is always willing to help. But he also knows to let me do it even if am struggling. If I can be of any help feel free to let me know.
I am 23 years old, and I was diagnosed with Limb Girdle MD when I was 12. It was hard at first, being a child, worrying where to fit in. However, my friends and family mad things so easy for me by making it clear that they never saw my disability. I believe that this is a really good way to show support to any family member who may be suffering with the disease. I have had a normal life, although I am wheelchair bound, I am soon to be married, and I absolutely love life. Even though I have next to no mobility, and cant do much of anything on my own, my family makes games out of helping me. To make me feel better about having to rely on help
Hi there, my name is Shoni and I too have LGMD. I was diagnosed when I was 16 and I am going on 27 now. I have 2 young daughters and they are the light of my life. If it weren't for them I don't know where I'd be! Congrats on your marriage Leiasa. May I ask, how did you meet your husband? I find it really hard to meet guys. I have been in sort of a funk for a while now because I've been single for practically 5 years and I feel like nobody will want someone with MD AND 2 kids. Any advice?
I have a cousin with MD diagnosed at age 3 today he is 23
he stopped walking at age 10 but is able to use his hands effectively for mobility. hi upper body seems fine to me. he climbs stairs(occasionally) using his hands , is also able to get into a rickshaw or car. i noticed that his feet did not move on thier own. and he had to use his hands to move them. i wonder if there is any device that could be used as a harness on his waist and lift him. i had seen a device on honda(robotics) website that seemed perfect. but it is still in research and they do not respond to emails. he just graduated from college and is looking for a job now. apart from loss of mobility he seems fine at this point. he is overweight on the upper body, but i feel that helps in keeping his arms strong ( i am not a doctor), he has difficulty in getting on a chair. but on the ground he is fairly agile.
Living with MD is very challenging especially when you have to see the tasks you could do today becoming more difficult each passing day. All you have to do is keep hope alive and focus on the things you can do well at that particular time.
I was diagnosed with MD 4 years ago ,i am 43 my older sister and brother also have MD,I seem to struggle to do the things i always loved doing like gardening running around with the kids,but like SWiTEVA wrote you focus on the things you can still do and the love I have in my children that keep me focused I find it hard most days but that is the challenge I need to fight..