Last post Sun, Apr 13 2008 6:39 PM by mjbees. 7 replies.
Hello. I am new to disaboom and I am seeking others to talk to who can relate to me. I am 33 years old and my husband of five years, Michael, 31, has muscular dystrophy. He was diagnosed about 4 months after we got married. We have a 3 year old son together. I am very sad and lonely dealing with this and watching my husband lose the ability to do everything. I am also being faced with the fact that this is going to kill him eventually and I don't know how to cope sometimes. My emotions go crazy when I think about it. I think I am seeking some support and understanding from someone who can relate. I am not sure what I need but I do know that I am having a difficult time coping.
Hello. I am sorry to hear about your husband and what ya'll are going through. I am a 19 year old female with muscular dystrophy. I was diagnose with muscular dystrophy...spinal muscular atrophy 1 at 3 months old. The doctors told my parents that i would die at 2 years old. I am still living today and going strong. My parents and I don't think about my disease. They take care of me daily and everyone loves me the way I am. I also have nurses that help out while my parents work and do other things
Just stay positive and strong. Don't think about him dying. He should still have the same heart and the same mind as he did when you first met him and fell in love with. He's just physically different. Yes, it's hard to be a caregiver for someone you love especially the guy you married because you have a lot more responsibilities. He can probably do some things, just in a different way. There's a lot of technologies and equipments for disability people. Just think positive and care and love your husband like you did in the first place. I hope this helps. Send me a message if you wanna talk.
Felicia
Felicia, thank you for responding. I was feeling pretty down when I wrote that. My husband recently got the flu and it turned into pnemonia and he was hospitalized in intensive care for about a week. It was very scary. He has never been that sick. My husband has a lot of repiratory issues that just started a little over a year ago and I think that is what really scares me. His father had limb girdle muscular dystrophy and passed away a year ago on Easter from upper respiratory failure. I am almost sure that is what will take him eventually. I think that with him being as sick as he was brought a lot of issues up that I can now see that I was somewhat in denial about a lot of it. Him being as sick as he was and almost dying has shown me that I have a lot of work to do in preparing to be able to accept that. And I feel that I do have to think about it and learn to accept it in order to be able to handle it and be strong. I have two kids. I cannot fall apart. I am interested in corresponding with you via e-mail. Is that possible? You sound like a very brave woman and I am intersted in learning more about you.
Hey MarceyPoe!
What kind of MD does your husband have. My daughter has a slow progressing type, LGMD Type2a. It must be similur to her's because if they just found it now at 33, i certainly wouldnt panic. You have to take one day at a time and see what it brings. Just be there for him and be supportive. The key thing is FAMILY. What that you will overcome alot. Stay Strong. I know it tough, but he's going to need you. I would have your son checked out too. I had my other children check out when my middle one was diagnoised, but they didnt have it, Thank God. My middle daughter's MD was just a fluke.
Well, if you ever need to chat. Im here.
God Bless and Stay Strong
Nancy
Thanks for your response. My husband has limb girdle muscular dystrophy and was diagnosed about 5 years ago. It has taken him very quickly. We have visited a neurologist about a year ago and he told us that there was no kind of testing that they could do to see if our son has it. What kind of testing did they do on your children? How old is your daughter and what kind of condition is she in? What do you mean when you say it was just a fluke? My husband's father had it as well and passed away one year ago from upper respiratory failure due to the muscular dystrophy. I am looking forward to hearing from you. Thank you.
Marcey Poe
I know how you are feeling my husband has muscular dystrophy and i wanted to talk to someone else that is going through the same thing. It would be nice to talk to someone esle that way we can see what they are using for pain other things.
Morie,
I am 42 and was dx'd with LGMD(?) a little over five years ago. It causes me to have extreme low back and leg pain as well as severe muscle cramping if I attempt to do too much. I have found that with a reasonable amount of exercise combined with regular use of marijuana I can rely less heavily on narcotic pain meds, and that seems to work best for me. The treatment of chronic pain is very complicated and should be thoroughly discussed with your doctor, including talking about marijuana.
hiya Dan, I get bad pain nect to toe too. tried alsorts of pain relief nothing seems to work and Gp doesn't really know what to prescribe. Before I fell pregnant I smoked weed for pain and it worked. haven't touched it since as I cant afford to be caught offguard with two toddlers on the go. if I hadn't had kids I'd swere by it discussed it at time with gp to. Sorry to hear yo're in so much pain if you hear of anything better please let me know
