12.21.2005
09:45 PM - 11:15 PM EDT
BMDchat / BMDChatGroup

muziqluva -- {welcome muziqluva}
fresh -- {welcome fresh}
jd-tractor -- {welcome jd-tractor}
jd-tractor -- hello fresh and muz
muziqluva -- hi JD, hi fresh
jd-tractor -- how are you guys tonight
muziqluva -- do you have Becker's fresh?
fresh -- whats going on everybody
fresh -- yes i do this is my first chat
muziqluva -- i'm good. finished all my xmas shopping
muziqluva -- cool, welcome
jd-tractor -- welcome to chat fresh
fresh -- How old were you guys when you got diagnosed
jd-tractor -- Christmas shopping? ? but it's not Christmas eve yet ! !
fresh -- its smart to finish your shopping earlt beat the crowds
jd-tractor -- Was 50 now I am 57 ,but I knew I had it since infancy
muziqluva -- ha, that's usually how I do it, but this year I had to ship everything since I'm not going home to Texas
fresh -- what part of texas you from
muziqluva -- I knew something was up towards the end of high school but was officially diagnosed til a couple years ago
jd-tractor -- I retty much did everything online .
muziqluva -- i'm from Dallas
fresh -- wow jd i didnt realize it could be onset so late
muziqluva -- yeah, online shopping is a godsend
jd-tractor -- Located up here in Western NY near Buffalo
fresh -- you like the cowboys muziqluva
djstamp -- {welcome djstamp}
fresh -- ok jd i from rockland ny about an hour away from nyc
greg -- {welcome greg}
jd-tractor -- As I said I have had it from infancy but to stubborn to know it.I also had other problems when an infant, had blood poison in both calf muscles at 18 months
muziqluva -- yeah I'm a diehard Cowboy fan but it's tough to watch these days
jd-tractor -- Hey dj ,long time no see......
djstamp -- Hey guys, I am back online after a 15mth absence!! :-)
jd-tractor -- hi greg
muziqluva -- hi greg, hi dj
jd-tractor -- how's jesse doing ?
muziqluva -- hey fresh, you're not the fellow that emailed me are you?
djstamp -- Hi to all, and welcome Fresh; my son has presented since birth but was not diagnosed until 6yo; he just went 10yo.
fresh -- jd stubborn is an understandable attribute to have it means your strong
jd-tractor -- oh I see,you're from that foreign NY state fresh......lol
greg -- Hey gang! How is it going? Yes I finally made it. Sounds like Fresh already figured out JD is an old fart.
djstamp -- Jesse is doing so-so. His attitude and self-image has improved over the past 2 mths -- big news!! We left Bermuda and have settled in Tampa!!
fresh -- the real NY...jk
jd-tractor -- yes i've had time to ripen.....lol
greg -- Hey DJ nice to hear form you again.
djstamp -- I read the transcripts all the time and have missed you guys - you are good for a laugh! Nice to be back Greg!
muziqluva -- good to hear dj. probably a good idea to move inland
jd-tractor -- glad to see you're in the states now dj...
jd-tractor -- now you guys can spend time w/mickey dj
djstamp -- Yeah, his school is fully wheelchair accessible and that is the best thing ever for him.
greg -- Fresh I was diagnosed at 21.
fresh -- djstamp your a parent of a child affected by BMD
djstamp -- Hey, mickey is just next door, but been too busy to drive over for a visit. Yes, Fresh, my son Jesse has BMD but my older 2 boys don't.
fresh -- ok greg that is a tough age to accept this test of life i was diagnosed with BMD at 12
fresh -- I understand djstamp I have to older healthy brothers
greg -- Actually I think it was better for me because mom let me do things that other kids were doing thinking I was normal.
fresh -- {welcome fresh}
muziqluva -- fresh - i guess i left out my age. i was diagnosed at 29. I'm 31 now. But I had really bad calf cramps playing sports as a kid so I guess there were warning signs early on
jd-tractor -- I came from a family of 5 boys and 4 girls and am the only one with MD but I do have several uncles and cousins on mothers side w/ beckers
greg -- Well I am normal but the muscles do not work as other quote normal people. Yes JD a Kentuckian can be normal.
fresh -- the mental part of this disease is very hard but, also I like the pressure
jd-tractor -- now greg we all know that there is nothing normal associated w/ kentucky.......lol
djstamp -- Bermuda is not wheelchair accessible (no laws inplace!) so we spent a lot of time tied down, but now that we are here Jesse has a new zeal and outlook. :-)
greg -- Well I am 38 now so 17 years later I am still on my feet. I really cannot complain and most of the time I don't but sometimes I do.
fresh -- muziqluva i remember in elementary school i had the biggest calfs all the kids would ask me to flex my calfs i had no idea it was a sign of beckers
jd-tractor -- well at least not since Daniel Boone left....but then supposedly he was anything but normal
muziqluva -- how old are you now Fresh?
fresh -- I am 23 years old
djstamp -- Today is actually the first time in 2mths that Jesse has been crawling around the house because his legs won't work, so I consider this to be a good spell.
muziqluva -- yeah, I think we all had the well defined calves as youngsters
fresh -- I really feel lucky talking to you guys i feel such a connection with all of you
greg -- I like Muz played sports and had calf cramping as early as 11 years old but did some tests that proved negative at the time. It sure takes a different path with all of us.
fresh -- dj stamp how is jesse's anger
fresh -- {welcome fresh}
djstamp -- He is rarely angry at anything, even having to live with MD. He is a very happy and loving boy and loves life and everyone in it. But the problems with accessibility and sometimes grownups who don't understand can make him pretty sad.
jd-tractor -- I had major problems from infancy till about 8 or 9 and then went pretty normal thru the rest of school I just couldn't keep up with everyone else and then about 28 when I started getting heavy I started having weakness issues w/my legs but I worked running a construction equipment company till just 4 years ago thru my teenage and early adult years I worked on and farmed for myself, gave that up as there wasn't any money in it as well as the physical activity
djstamp -- But he's still pre-puberty...
muziqluva -- it's definitely a challenge sometimes fresh
greg -- I am happy to hear that Jesse is enjoying life in the states and I hope today was only a momentary set back.
jd-tractor -- hey fresh take them boots off and stay put .....lol
jd-tractor -- has jesse been to clinic since you got to the states dj?
djstamp -- Overall he is doing pretty good, except for his weight. At 5'1" he is weighing 165lbs. Way, way too much. And by the way, I declined participation in the deflazacort clinical trials.
fresh -- my boots are all good jd i got it taken care of
jd-tractor -- too bad he has md dj he would have made a good football player.....lol
djstamp -- No JD, he hasn't been yet. Just to a pediatrician who gave him a referral to a top neuromuscular specialist at St. Joseph's Children's Hospital. Haven't been to see him yet either!
jd-tractor -- is that in florida dj?
djstamp -- Well, he cheers for the Bucs anyway! :-)
jd-tractor -- are you able to work fresh?
djstamp -- Yes, right here in Tampa. There is a big MDA Clinic here as well. I have the papers to register him but haven't mailed them off yet.
jd-tractor -- that sounds great dj
greg -- I agree Muz it is frustrating at times when you are going along and bam you are on the ground.
fresh -- Yes, jd i work for my older brother company in the marketing department
jd-tractor -- yea frustrating and cold this time of year....
fresh -- greg after awhile you just so use to the falls
djstamp -- Yeah, Fresh, but it doesn't hurt any less.
fresh -- jd your all out of jokes...lol
muziqluva -- i'm still not use to them. can still count them on one hand each year though
jd-tractor -- are you still doing the same type job you had in Bermuda ?dj
muziqluva -- unfortunately I had a CD drive in my hand the last time I fell and broke the damn thing
greg -- I never get used to them especially as it has gotten harder to get up. I fall less because I have gotten more careful, but this fall I twisted my ankle severely in a fall. It is scarry because you think one of these falls will keep you down and I am fighting that.
jd-tractor -- never run out of jokes and other foolishness ,just have to behave at this time of year....lol
djstamp -- I am on a "leave of absence" until Dec 31, then unemployed!! I will be going back to doing accounting here. Lots of jobs advertised but most too far away from Jesse's school so far.
muziqluva -- luckily I didn't break anything on me!
fresh -- thats not bad muziqluva. no matter what any fall is not fun. i fall so often i lost count
jd-tractor -- that should work out dj ,just get a job with one of them crooked politicians...lol
djstamp -- hee-hee...lots of those out here!
muziqluva -- i used a cane to go out clubbing a few weeks ago for the first time and it was a big help. mostly so folks get out of your way. worked great!
jd-tractor -- hey fresh ,when I fall in public I just let on that I am doing something that I need to be on the ground for...
muziqluva -- like tying a really complicated knot in your shoe
jd-tractor -- have you found one of those urban walking sticks yet muz....?
greg -- What like retying your shoe?
djstamp -- Good idea Muz! If Jesse is walking and someone nudges into him, he's down for the count.
muziqluva -- um, I asked for one for xmas JD. I'll probably order one if santa doesn't send it
fresh -- thats awesome muziqluva to go out and have fun it probably made that pressure of worrying about falling in crowd and getiing trampled by the other people in the clubs
jd-tractor -- I haven't used looking for a contact lens yet....lol
jd-tractor -- It's amazing how little a bump it takes to tip me over.....lol
fresh -- jd its also very upsetting to me when i drop like that from a lil nudge
greg -- I tried convulsing like I was having a seizure, but only got sent to the hospital.
muziqluva -- yeah definitely fresh. it also helps to have friends that keep an eye out for rowdy drunks. my problem is not everyone knows what's up
fresh -- i still got a whole lot of rage
greg -- Just kidding! Sick joke!
jd-tractor -- well when I go over the first thing you hear is the slap of my stick hitting the floor and then it's "oh @#$#%$^
jd-tractor -- that was bad greg......lol
muziqluva -- that's ok fresh, we all have some of that. we just need to channel it and keep genuine people around you
fresh -- Muz having friends that know whats up is good but, when you look healthy people don't care even if you tell them the deal
greg -- I tell you I get more frustated about dropping things. As all of you know bending is very hard. I need about ten grabbers in the house.
muziqluva -- time stands still for me when I fall. I'm never worried about hitting the ground or hurting myself. I immediate go into panic mode about how the hell I"m going to get up off the damn ground
jd-tractor -- when I o somewhere I generally stay standing but people don't understand that it is a lot easier to just stay standing than to have to get back up
fresh -- greg i wish i could remember what bending my knees was like i would be happier
djstamp -- Yeah, Fresh...I can understand that. The "why me" can kill you if you let it. As a parent is hurts so bad and is so frustrating to see my son in pain, to see he can't play like the other kids, he can't be athletic like his brothers...and all I want to do is make the MD go away and I can't. I can fix almost anything in his life but the one thing I need to fix the most, I can't. Some days the sense of helplessness is overwhelming. And that I look at him...cute and smiling and I am back on track again.
muziqluva -- i hear you on the people not caring or it not really sinking in for them
fresh -- dj with all do respect he will have to figure this out on his own
fresh -- dj i grew up with two star athlete brothers
greg -- Dj I certainly understand to a degree how you feel at least as a parent of three.
fresh -- dj i hope i didnt offended you its just the way i talk
greg -- Unfortunatley we just can't be all things for our kids.
fresh -- I am not a parent but,I know how much love from your family helps the struggle
fresh -- greg you have 3 kids thats amazing i'm worried that i never get to be a father
greg -- Funny JD I do the same things. I wonder around and act like I am enjoying the pictures.
djstamp -- Not at all, Fresh! Jesse has a hard road ahead, and family don't all understand.
jd-tractor -- Fresh I did live apretty normal life got married had three daughters and now have six grandkids and worked till 4 yrs. ago
greg -- Yes Fresh I have two girls and a boy.
fresh -- yes, i am i really appreciate you getting back to me muz
fresh -- jd and greg that really gives me hope. girls today its not easy i have gone on dates and fallen. thats the end of the end of the date
fresh -- muz you live in LA
jd-tractor -- geez fresh you should have just told her you were falling for her...lol
muziqluva -- yeah I live in LA. work in the TV industry
fresh -- jd now thats a joke i will never forget thank you
greg -- Or tumbling head over heals for her.
djstamp -- Yeah Fresh, I have trouble dating as well (divorced for 9yrs). A fella wants to know what's "wrong" with Jesse and that's the end of the date. That just means they weren't worth my trouble and I know there is a guy out there who will be supportive and understanding (where the heck is he?). JD's a joker! OK, and Greg!
fresh -- dj i tell you this jesse will be able to teach your male freind where ever he is a thing or two about life
fresh -- MD grows you up fast
jd-tractor -- as I said fresh I pretty much knew what my problem was growing up but we always thought "well maybe that's not what it is "so I didn't go looking for a diagnosis until around 50 I broke my leg and had to explain why something showed up on an ekg. the doctors were amazed and then gave me the devil for not looking into it earlier,but there wasn't anything they could have done anyway
greg -- Fresh are you in school?
fresh -- {welcome fresh}
djstamp -- Thanks, Fresh. You are very right!
fresh -- i graduated college may of 04
jd-tractor -- hey I resemble that remark dj.....lol
jd-tractor -- I thought you had those boots fixed fresh!
muziqluva -- is that why you call yourself fresh, 'cause you're fresh to the job market?
greg -- Good I am glad to hear it. We need less physically demanding jobs and the only way to do that is with an education.
fresh -- i told you before my boots are all good
fresh -- I want to thank everybody for letting me be a part of this i hope all you guys have great holidays
greg -- I try not to wear boots.
fresh -- yes jd that would be great my e-mail is dbjett19@aol.com
jd-tractor -- AS Tiny Tim said"God bless us everyone"
muziqluva -- you too fresh. feel free to hit me up anytime.
greg -- Yes have a Merry Christmas fresh!
fresh -- anybody can e-mail me i love to talk i got a real big mouth
greg -- Come back next month!
fresh -- {welcome fresh}
jd-tractor -- what do you market fresh ?
djstamp -- Glad you could join in. My last computer went wacky and it kepy me off the chat for over a year, so I am glad to be back! Hope you all have a great holiday, and I will try to be back on in January. But you know....our chat is on the same time as my favourite TV show...
jd-tractor -- well we got that in common fresh(the big mouth)
fresh -- the company is called qualitycalling.com in fort lee, nj
muziqluva -- TiVo
jd-tractor -- oh you are a Martha fan too dj......lol
fresh -- muz what kind of music you listen too
jd-tractor -- a phone service fresh?
djstamp -- Thanks Muz, but I'd never be able to figure out to work it. ;-( Yuk, I am a Lost fan. One og the few shows I watch.
fresh -- jd we need to have something
fresh -- jd pre-paid phone cards
muziqluva -- all kinds - a lot of hip hop, electronica, punk, stuff that a 31 year old shouldn't be into =)
jd-tractor -- my son in law was flying back from phoenix and watching Lost on his computer....the flight attendants were a little concerned when they saw that.....lol
fresh -- its all good muz i love hip-hop
fresh -- jd tell dont watch it
muziqluva -- me too dj. although I'm behind on this whole season. I think I have like 8 episodes on my TiVo. TiVo is much simpler than programming a VCR.
fresh -- tell them
jd-tractor -- country music Yanni and Kenny G in that order
fresh -- i like keeny g
djstamp -- hee-hee JD. And I love the scenery...we were in Hawaii in May. I can't record on a VCR either. I have an HDTV but only know how to turn it on and change the channels...
muziqluva -- gotta run guys. have a safe holiday everyone! and root for the Horns in the Rose Bowl!
fresh -- muz its all about doing things that make you little happy
jd-tractor -- Television is going to get real interesting when they switch over to all digital broadcasting
jd-tractor -- how did jesse make out on the cruise dj
greg -- Hey fresh our MD chapter has a job opening as a coordinator for the camps and fund raisers.
jd-tractor -- Merry Christmas MUZ
djstamp -- He loved it. The ship was great and he could roll practically everywhere. They had him up on the bridge several times-he got a free pass to enter whenever he wanted. He just loved every minute!
fresh -- I just applied for a job at the MDA today
greg -- What a nice Horns b-ball team they had! Merry Christmas Muz!
jd-tractor -- Glad to hear dj
djstamp -- Yes, Merry Christmas, Muz. All the best!
fresh -- dj that fact that jesse can smile makes him a strong young man with alot of great potential
jd-tractor -- You really have to keep a sense of humor to survive
fresh -- Bye all take care of yourselves and enjoy the holidays
djstamp -- Sure does. There are great things in store for him.
fresh -- {welcome fresh}
greg -- Jesse also has a great mom who cares for him and that will carry him far.
greg -- Bye Fresh take care!
djstamp -- Thanks Greg.
greg -- As for you you no good New Yorker. Try to be good and enjoy your family and stay out of trouble and the hay.
jd-tractor -- wouldn't be fun to stay out of trouble.I hope Santa br8ings your kids a lot of noisy toys greg......LOL
djstamp -- He needs to stay out of the snow too! Marry Christmas guys! It was great to chat again. :-)
jd-tractor -- will be looking for you next month dj
greg -- Dj I like the fact that you came back to talk to us. I wanted to e-mail you to check on your family, but time seems to be in demand of late and I never get to it. Have a great 1st Tampa Christmas with Jesse and the rest of your family.
jd-tractor -- you all have a blessed and Merry Christmas
jd-tractor -- do you have an orange tree in your yard dj?
djstamp -- Thanks, guys...all the best in the New Year!
djstamp -- No, just palms and jasmine...
jd-tractor -- oh one of those hippie trees jasmine
greg -- Enjoyed it! See you all in the New Year and yes JD have a Merry Christmas and a Happy New Year!
djstamp -- Yeah, and a few other tree things I can't identify!