This is a really good place to "meet" people with MD. Even if you just read other people's posts you will find that there are many, many people who share the same feelings and troubles as you do. And if you would like to post your problems or feelings we will all be happy to reply.
Just by coming on this board you have found many friends, including me, with MD.
please i dont know much about t.he internet i just want to be friends with.;someone who has md like me
hi there, I am both new to this and newly diagnosed with MD, I was born in Michigan but live in MOntana, am 63 , married and am a R.N. but not working now,
love to chat with you........
Happy thanksgiving until I hear from you,
hi there, sounds like I am in a good place here, have had MD for many years but it finally was diagnosed only three years ago, at least I know what I am dealing with........learning my limitations, etc., guess it could be worse
Yes you are indeed in a good place here. It seems as if you are in a "good" place if MD can ever leave you in a good place of acceptance etc. I still struggle with accepting my diagnosis, and you will at times hear me rant and rave in here when I get mad. I am 35 years old, originally from Denmark but I live in Florida with my husband, cat, and dog. I was diagnosed with LGMD 2I three and a half years ago, before my diagnosis I didn't know much about MD.
I am still lucky enough to be able to exercise, drive, etc and I take full advantage of it. Must mornings I exercise in a 93 degree warm pool, at night I try to ride my exercise bike for a while. I work a couple of afternoons (right now four...) a week as a math tutor, volunteer with an organization that helps people with disabilities enjoy outdoor activities such as kayaking and horseback riding, and write a blog so I am keeping busy.
Anyway just wanted to say Welcome! I will be in SD for the next five days so I will give you a shout over there in MT!
good hearing from you! our histories are similar, as far as being diagnosed that is. I am no longer working, my doctor is afraid I will fall, we have a lot of snow and ice, so unless I find a sedentary job it is home and crochet for this winter.
I have an electric scooter just got it a few months ago and my dog Teddy and I have a ball exploring the town, it is a small old mining/ smelter town so there is a lot of history. Teddy loves to go into the stores, he has a thing against peeing on the fire hydrants though, can't figure that one out, oh well.
anyone in your family have or had MD?
I have four kids so they naturally are concerned about themselves and their children. any thoughts??
I get around best I can, I have been a nurse for over 30 years, so I have seen much worse, so that is what keeps me positive, plus I guess I am an optimist.
I am glad we met, keep in touch, this is fun !!!! (meeting new people)
I have been so busy that I don't think I have logged on here since before Thanksgiving. I am definitely happy to live in FL, SD is way to cold for me. It is actually even "chilly" here today, it was about 25 degrees this morning, and whereas I know that is nothing compared to MT, our house is really not built for it. The rest of the week it is supposed to be around 20-21 degrees overnight
I still work two days a week, it is a sedentary job tutoring, I do get disability as I am unable to work full time, I only make a couple of $100 a month. I am still resisting the scooter, and so far I think I am doing a decent job if I have to say so myself.
One thing I have found doing a lot lately is cooking. My shoulders seem to weaken at a faster rate than everything else, and one of my favorite things to do is to cook. I am cooking as much as I can while I still can. I usually end up stiff and sore, afterward, mainly because I have tendonitis in both shoulders. I can stand forever, today I spent five hours on my feet while cooking. The funny thing is that I rarely eat a lot of the food, I will taste it and either take it to work or send it to work with my husband ;-) I used to crochet as well, our first niece and nephew both got crocheted blankets from us but the three new additions this year weren't that lucky.
I am the only one in my family with MD, so I don't have any thoughts on your kids. You might throw it out there that if they choose to do so they could get tested. It is an individual thing whether or not you would want to know. I am not sure I would have wanted to know as I would not be the person I am today, I would not have met my husband, done the traveling etc
Good to meet you!
Last edited by NP74; 12-06-2010 at 02:19 PM.
Reason: Added paragraph
I so agree with you about having our kids tested. My eldest (16) has experienced severe neck pain but I was told that MD does not start in the neck. I do not want him tested at all because if you know you have it before any significant signs you will "give up" on life.
My ex-husband constantly phones me to ask these questions regarding MD and our boys and I get angry every time he asks me. He can go google the information than make me feel quilty over every ache and pain the boys experience
I refuse my boys go through those test I had to endure and we will have a major fallout if he insist the kids get tested.
I do not want to know - the guilt will not let me live my life the way I am and see things in a positive light.
I'm the only one in our family that has MD and I hope it stays that way