I cry, try to find someone supportive with whom to talk, give myself permission to rest, and hope that tomorrow I will find a way to do some of the things normal people do. We have Chronic Fatigue Syndrome. We are constantly grieving our old self. Grieve is not a linear process where you move through the various stages in order. Imagine a circle with all the stages (grief, denial, acceptance, etc.) on the outside of the circle and yourself in the middle. At any point in time you can bounce to the outside of the circle into any one of those stages. Hopefully with time we are moving more often into the acceptance stage, but that doesn't mean that we will never grieve again. We have lost our old self. I hope this makes sense. I can't see all the words I have written while typing on this new DS site.

I cry every day. I drink and smoke weed as well. I hate my life. I would rather be dead than disabled. I have Limb-Girdle Muscular Dystrophy. It's really bad. There's no cure. I have lost my will to live.

Last night I was playing cards with my daughter and we found out that I can no longer shuffle the deck. I try to focus on what I can still do. I refuse to let MD define who I am. I acknowledge and grieve the loss, but I refuse to wallow.

I like your attitude radiumgirm. I really need to make some changes.

I have a form of distal myopathy and I do not deal very well with it. I put on weight and beat myself up over it. With any form of MD you have to stay relatively light. One day at a time. I find myself really bitter and angry when I see people running up stairs and it's such a huge task for me....You are not alone

i can't even go to college and have a job at the same time because my body just gives up. i feel like a lesser person.

I was diagnosed with limb girdle, more specifically (type 2B) in 2009. This has been about the worst thing I have ever had to deal with. I struggle more and more each day, mentally and physically. I need somebody to talk to about this. If you want to talk, email me at Eric.sabin@hotmail.com or text at 623-206-0770. I hope to hear from somebody . Thanks

I have lgmd and I feel exactly like you guys do. I want to just give up. Would love to chat zeedeks@gmail.com

There's no cure for any form of muscular dystrophy. But treatment can help avoid or reduce problems in the joints and spine to allow people with muscular dystrophy to stay mobile as long as possible. Cure options include medicines, physical and occupational therapy, and clinical and other procedures.

Therapy

Several types of treatment and assistive devices can improve the value and sometimes the length of life in people who have muscular dystrophy. Examples include:
Stretching exercises. This exercises can aid to keep joints as flexible as possible.


Some kinds of strengthening exercises also might be helpful. But it's vital to talk to your doctor first as some types of exercise might be harmful.

To all with LGMD sharing comments and feelings: I find often the best way to cope is to recapture your inner child--the place or "center" you can always go to, hopefully to find joyful memories and experiences--even as you grew up to adulthood. Continue to focus on this inner sense of happiness and anchored self-worth and let go; live demonstrably expressing these feelings through your daily work, hobbies, creative outlets and social relations. In essence, no human being, whether physically capable or not, can live happily without enjoying this energizing, liberating process. I find it often just by day dreaming or some form of creative expression.

I feel like no one understands how hard it is to lose your ability to get around and constantly have to ask for help. Was really hoping to find someone I could talk to when I get frustrated and maybe find some ways to get a little hope that things will get better. If anyone would like to talk sometime email me at Mo16524@yahoo.com. Maybe we could text each other, it would be nice to have a friend who understands me.

Well, one of my family members has muscular dystrophy and I know what a toil it can be to have this disease. And it's not only physical it's mental as well. Prolonged depressions are something my relative is victim to. We do what we can. And i's even possible to travel to some extent. If you heard of medical travel agencies, that's the thing. The only word of advice, be sure that the agency has top-notch logistics with software like this, for instance, https://routegenie.com/ . It will save a lot of trouble.