12.21.2005
09:45 PM - 11:15 PM EDT
SupportCenter / MyotonicChatGroup

vdoman -- {welcome vdoman}
snaped -- {welcome snaped}
paray -- {welcome paray}
vdoman -- Hi Ray and Snap
paray -- Good evening.
snaped -- hello vdoman,paray
robyn-g -- {welcome robyn-g}
robyn-g -- Hi All.
elliebedelia -- {welcome elliebedelia}
vdoman -- Hi Robin
paray -- Snaped...I am sorry I can't remember you.
elliebedelia -- Good evening from the cold state of NH
paray -- Hi Robyn and Ellie
robyn-g -- So the Quest Jan/FEb issue has a blurb from the October consortium in Quebec about Toxic RNA being destroyed in mice with mmd.
vdoman -- Hi Ellie
lost1112 -- {welcome lost1112}
elliebedelia -- that was a great Christmas card vdoman
robyn-g -- HI Lost - did you get the email I sent you last Wednesday?
vdoman -- That excerpt is in the MDAASG Newsletter
vdoman -- Glad you liked it Ellie
lost1112 -- I did thank you very much
robyn-g -- You're welcome.
paray -- Hey VDO the electronic Reaching Out is great!!!!!
lost1112 -- hi ellie
vdoman -- You enjoyed it!
elliebedelia -- I didn`tget the reaching out yet
robyn-g -- If we didn't sign up for the electronic reaching out, when will we get the snail mail version.
elliebedelia -- Hi lost where are you?
vdoman -- Ellie did you want it electronically
lost1112 -- robyn it showed me after reading that I have a crew of doctors that have no clue what to do
paray -- Robyn...After the holidays. LOL
vdoman -- It will be mailed out monday
lost1112 -- Vermont
elliebedelia -- Yes I could get it that way and my new e-mail is klocke@netscape.com please take note thankyou
barryc -- {welcome barryc}
elliebedelia -- oh yes I remember your in my neighbor state
robyn-g -- Hi Barry.
elliebedelia -- Hi barry
lost1112 -- anyone here ever hear of a medication called GABAPENTIN HI BARRY
barryc -- hi guys.. ho, ho, hop
elliebedelia -- Hey everyone, great news, I got the social security dissability
robyn-g -- ho, ho, hop?
elliebedelia -- I was approved!! Yeh
robyn-g -- congratulations Ellie!
barryc -- yes, robyn... santa, on his way...
lost1112 -- thats great how long did it take
robyn-g -- Barry, hop?
robyn-g -- No, lost, never heard of that medication.
barryc -- great news, Ellie... ho, ho, ho, HOP... Jump for JOY
elliebedelia -- yes lost I have heard of that med its for pain??
vdoman -- Hi barry
robyn-g -- Barry, I thought Santa was a man, not a bunny? Are you getting your holiday characters confused? LOL
elliebedelia -- It took just 5 months lost
barryc -- well, so what?
barryc -- corey,,, got all the camera equipment... now I am ready to take world class photos, I WISH!
vdoman -- Ellie they should send you back pay for those 5 months
elliebedelia -- it is retroactive from the date I couldn`t work any longer which was a yr ago
lost1112 -- yes that was what i was told but then looking up side effects it says may cause difficulty moving voluntary muscles I dont think i need any help with that lol
robyn-g -- yep, from the date you applied.
elliebedelia -- Yes vdo I recieved a very nice check
barryc -- ellie,,, you also get medicare 2 years after getting disabiity
vdoman -- Party on Ellie she will have a fat check from SSL LOL
elliebedelia -- Yes party hardy on me Yall come
barryc -- Ellie... enjoy my share of the check... at least some part of the taxes are doing some good for a special person, ms. NH
elliebedelia -- yes barry I read that in the booklet they sent me
elliebedelia -- well barry it is a blessing for me and I don`t mean to be proud it will help us out a lot
vdoman -- Ellie check your email I just sent you the Newsletter
barryc -- julie just got her medicare card and will start in March... soooo I am now looking to end the dreaded company med insurance I have... at $1800 mo... no one else would insure Julie!
lost1112 -- barry I think you asked me how the millatary could say i was service connected
barryc -- did you figure that one out, lost?
vdoman -- Barry I thought that was true that after 2 years of disability they get Medicare but SSI told me that they cannot get medicare until 65
lost1112 -- I asked about it again and was told that when i went in I had no problems 6 years in i had a problem so they claimed the service aggravated it and listed me as service connected
elliebedelia -- yes vdo I did receive the newsletter thankyou
barryc -- well, corey, julie is NOT 65 and she is going to get medicare... Terry is a BABY, age 32, and he has had medicare for years.
elliebedelia -- my booklet says after 2 yrs I can have medicare and I will be 54 at that time
steelydon -- {welcome steelydon}
lost1112 -- of course i was also told that it made me a risk to be on a ship so i was discharged
barryc -- ellie... I knew you were a baby, too...
steelydon -- Hello all
elliebedelia -- yes I am an old baby LOL
elliebedelia -- Hi steelydon
steelydon -- hi ellie
barryc -- uhm... lost.. so does that mean that you will be eligible for vet benefits or other special benefits for fed workers who are disabiled?
vdoman -- Hi Steely
steelydon -- Hi vdo
barryc -- ellie... I love your sense of humor.. an old baby, is really a baby come back a second time.
lost1112 -- vet benefots yes as far as medical goes and a check every month but that is it
steelydon -- Freezin in florida here
lost1112 -- i will trade with you steely
elliebedelia -- hey steely how about 16 degrees like here in NH
steelydon -- where are you lost? hi there
barryc -- ok lost...vet benefits are a plus, especially if you check out thorough all the vet benefits... funny how hard you have to research this stuff...
vdoman -- Its been in the 60's in Fresno
steelydon -- no thanks ellie, lol
lost1112 -- in Vermont next door to ellie
steelydon -- ok darn too cold for me
barryc -- steelydon... come one.. yeh its cold down her, but 60's aren't that bady... eves are cold though
elliebedelia -- I can almost see you shivering lost you are in the green mountains and I am in the White mountains
lost1112 -- yes it is barry they sure dont tell you anything to help you thats for sure
barryc -- I still think we should all go on a MDA cruise to Hawaii...maybe a giant fundraiser
steelydon -- yes but the 60s feel like 50s to me n my legs, 40s at nite here isn't normal
lost1112 -- only if I can miss the return trip
elliebedelia -- lost my dad got all the medical benifits at the VA in White River Junction
steelydon -- cold just makes me stiff
vdoman -- Barry all the chatters should join us on a fundraiser cruise with us in May to the Bahamas
lost1112 -- elli I think barry has a great idea lets all go to Hawaii but we wont be coming back
barryc -- marooned in Hawaii... what a nice thought, lost.
lost1112 -- yes thats where i go for medical
elliebedelia -- Have you been there? Lost? You should go to eligability and check it out. It takes a long time to get in as a patient but you should get the process started
lost1112 -- yes i go to white river all the time ellie they try real hard but they dont have a clue how to help me
elliebedelia -- good lost. I could drive that trip blindfolded as often as I have been there. It is 1 and 1/2 hr. drive
elliebedelia -- You are right about that they didn`t know anything about mmd
barryc -- by the way, Julie sends her holiday greetings... she is playing Texas Holdum... or whatever that strange poker game is all about...absorbed and dangerous.
lost1112 -- just an hour for me and i go about 4 times a month
barryc -- robyn... how are things going for you and the family?
steelydon -- Tell julie I said HI
barryc -- will do steely... don't forget to look for Terry in the christmas st. pete times, on Sunday. The news reporter called today to verify a few facts.
bette -- {welcome bette}
steelydon -- hi bette
lost1112 -- hi bette
barryc -- hi ms. CA,,,, bette, how things going?
bette -- Finally, it takes me 25 minutes just to get on.
vdoman -- Hi Bette
steelydon -- merry christmas to all
steelydon -- i'll keep a lookout barry
elliebedelia -- Hi bette thankyou very very much for sending me the list of meds to avoid
bette -- Hi all. Happy Holidays to all.
lost1112 -- hey elli was gabapentin on yhat list?
robyn-g -- Barry - we are doing well - just picked up my oldest two kids from the airport - they visited their dad in Idaho for four days. Jessica and Janelle are with their mom for 8 days. We get them back on Christmas eve at noon. Janelle didn't want to go. She spent the first few days of the scheduled visit at her friends house.
bette -- Cory, sorry, haven't gotten to my e-mailyet.
ellenrosser -- {welcome ellenrosser}
steelydon -- hi ellen
elliebedelia -- hey robyn my little brother lives in West Magic Idaho
bette -- Welcome ellenrosser. Are you new to the group? Tell us somethng about yourwelf.
vdoman -- Ellen welcome
barryc -- for you guys at distant locations, if you would like to read about Terry, his book, life story... he is being featured on the St. Petersburg Times on Sunday,Christmas edition. You can catch the story by going to www.sptimes.com and looking for North Pinellas or Clearwater Largo sections... if not there just keep looking... it shoud be front page somewhere!
elliebedelia -- Hi ellen good evening
lost1112 -- I will look barry
ellenrosser -- hello - I am a nursing student in Lincoln Ne; a project we are doing requires me to interview someone with MD - I specifically chose Myotonic MD because we are to imagine ourselves diagnosed at this time in our lives
ellenrosser -- would anyone allow me to email them with a few questions
lost1112 -- sure ellen
barryc -- Robyn.. sounds like a busy Christmas for the family... how is Hubby doing? Going to be driving/working over the holiday or R&R?
vdoman -- You could email us gvdoman#tahoo.com
steelydon -- I have FSH MD here ellen, i'm just here for the chat, people are nice here
elliebedelia -- sure ellen, my e-mail is klocke@netscape.com
vdoman -- gvdoman@yahoo.com
barryc -- ellen... ellie is a blast, and I vote for HER
ellenrosser -- oh thank you - the questions shouldn't take you long if you prefer to email me at ellenrosser@hotmail.com and not give your email in the chat room that would be great - thanks lost -
elliebedelia -- ellen I was just awarded dissability because of my mmd
robyn-g -- Well, Barry, Joe got in over 11.5 hours on Monday and Tuesday - not including driving to and from work. He only got in 3 hours today due to the rain. On the way home from the airport (I drove there, he drove home) - he was shaking his leg. I asked if he needed to use the bathroom. He said "no". I said "what are you doing,then?" he said "I have to do this, cause my legs get achy."
ellenrosser -- oh robyn thank you too
robyn-g -- Also - Janelle (13)said just last week that sometimes in school, walking from one class to another - her legs want to give out.
ellenrosser -- i will email both of you -lost and robyn - thank you - I will just listen in a while and see what is going on
barryc -- joe just impresses me many times over.. he just keeps going... the energizerrrrr bunny... HOP!
elliebedelia -- robyn that used to happen to me working at the nursing home
ellenrosser -- paray too!
bette -- In the last week I've gotten a whole lot of muscle pain that I have never had before. That worries me.
lost1112 -- robyn i have to do that too if i drive to long
barryc -- now ellen... if you want ALLLLL the info about about anything about MD, especially respiratory therapies... Dr. Paray is the guy for you... and a great caregiver to boot.
elliebedelia -- well bette maybe its the holiday stress I am hearing that alot lately
robyn-g -- Barry - right now Joe is crashed, hard! He goes and goes but I worry about him. last night after putting in an 11.5 hour day he came home and took my youngest son Alex (10) Christmas shopping for me. what a guy!
ellenrosser -- oh that would be great barry - thanks for the tip
steelydon -- i get aches, they come an go, i don't worry about it, after all i'm 49 yrs young
elliebedelia -- my dentist says he gets a lot of work cause people get teeth aches and jaw pain just from the stress
steelydon -- ...cold and cool weather affects me alot this way
barryc -- robyn... maybe Joe needs to push himself hard because he wants to give and get all there is in life, NOW... knowing progression will eventually happen.
bette -- I think I really overdid climbing stairs on Sunday. I had a lot of help but the onus still fell on me to get up anwn.l I just hope it isn't peranent.
barryc -- bette... what happened? did you hurt yourself?
bette -- Meanwhile, we are thinking of going to Australia after Mark retires in i7 if I can manage it.
robyn-g -- Barry - yes, and Joe pushes himself because he has seven mouths to feed.
bette -- Barry, I don't know if I urt myself but I'm really sore.
barryc -- robyn... said plainly and honestly... thanx
robyn-g -- Joe says he feels like he is being "robbed". I imagine all of you who are affected can empathize completely.
steelydon -- I used to ride a 10 speed bike up north to an from work approx 6 miles a day 6 days a week the doctors say it ruined my legs in the long run, I would have stronger legs if I didn't exsert them doing all that
steelydon -- stairs were very hard and not I can't climb stairs or curbs
bette -- Steely, that's what I am afraid of with exercise. Should I or shouldn't I?
steelydon -- ....don't overdo your muscles
snaped -- Robyn-g I wish I could get Fluffy to take the SSD retirement,she fell at work after everyone had left,she was only able to get up after 1/2 hour on the floor...sigh....you might want to consider a cell phone for when Janelle is on her own.
lost1112 -- yes robyn we all can wish there was something else I could tell you but there really is not my wife is dealling with this same as you it is hard
steelydon -- i'm stuck there to bette even my doc won't say, he says walk
robyn-g -- I dont' know if I mentioned to you all that I now have a business partner who I share my real estate listings and work with. Amazing, I found out after we teamed up that she has SMA.
steelydon -- excersize with no weights bette
elliebedelia -- well steely I ran a dairy farm with my husband and we had no extra help we worked side by side plus I worked at the nursing home as a cna and the doctor says I am healthier because of it but like you say in the long run....I wonder I am paying for it now
steelydon -- maybe ellie thats how the docs meant it i'm paying now
steelydon -- i remember how they felt back then and thought nothing of it
barryc -- bette... sorry about the soreness... we use MYOFLEX ointment for soreness,,, it really works well for Julie
steelydon -- i'm talking 25 yrs ago
steelydon -- but don't worry about it ellie
elliebedelia -- yes steely it catches up with us all
elliebedelia -- I am told to excercise but not to the point of exhaustion
bette -- I'm trying to tay off any more meds. I see the doc tomorrow because I broke out with welts on a small porition of my leg and what to make certain that I did not catch the Scavied that my mom-in-law had.
steelydon -- i was a weight lifter in my high school days, it proubly done me no good either
lost1112 -- steely i think that at one time or anougher we all thought nothing of it but now we all know better
steelydon -- i used to bench press my body weight 125 lbs
steelydon -- yepper lost
elliebedelia -- bette my doc just advised me to take omega 3 and it gives me stomack burn
lost1112 -- bette you sent a list of meds to look out for could you send me a copy of those as well
bette -- Someone in our group also said her dr. told her to try omedga 3. She'll try it and get back to me in a couple of months.
barryc -- corey... did you email the newsletter already, or later this month?
elliebedelia -- it is very important to know those meds lost especially for the VA they gave my dad a shot of valium and he was in a coma for 2 weeks he couldn`t come out of it
bette -- llost, send me your snail mail and I'll get you a copy.
paray -- Where is MM? Vegas???
lost1112 -- that was why i was asking about it
vdoman -- The electronic newsletter went out I will send you one too
robyn-g -- speaking of meds, etc. I still cannot get through to the international site, to get the medic alert cards - I know I can print out the pdf version, but I want the red cards.
barryc -- marcia said she was going to Vegas,paray... and that means booking a room with mirrows all around.
elliebedelia -- yes where is MM???
vdoman -- MM is celebrating her anniversary in Vegas as we speak
lost1112 -- do you want my address or my email bette
vdoman -- At the Poker machine
elliebedelia -- well maybe MM will win enough to take us all to Hawiiee
paray -- I hope that she is on a fund raiser for a change. LOL
bette -- lost, I need your address, including your name.
lost1112 -- ok
barryc -- maybe marcia will bring home the loot this time... slot ACE, I believe.
steelydon -- i'd like to see pearl harbor
elliebedelia -- also during one of his surgeries they had a really difficult time to keep his heart going because of the anethstesia they used
elliebedelia -- snaped are you related to fluffy?
vdoman -- Steely, Suzy and I were at Pearl Harbor 25 years ago on our honymoon it was a tear jerker
snaped -- Fluffy just got up..."MERRY HOLIDAYS TO ALL" from her
steelydon -- Merry christmas fluffy
elliebedelia -- Merry Christmas and Happy Holidays from us in NH
vdoman -- Happy Holidays Fluffy
lost1112 -- BETTE did you get it
snaped -- ellie..yes,but only by marriage
steelydon -- I'm a WW2 fan, it fasinates me, every part of it, etc.
elliebedelia -- oh ok snaped thats good
bette -- Lost, it never came through.
vdoman -- My dad was in WWII at the battle of the Bulge
steelydon -- all the movies about, on the history channel, etc
steelydon -- Realy vdo? I admire that
elliebedelia -- the history channel is good
vdoman -- He was in the mechanized cavery
elliebedelia -- our youngest son is in the Navy in nuclear sub
steelydon -- my dad was in the berlin arlift/naval reserves for 40 yrs retired
elliebedelia -- my dad was in the army airforce
lost1112 -- i tried again bette
robyn-g -- I'm going to leave. Take Care and Merry Christmas to you all! PS. the books by Peter Harper are worth getting, if for no other reason than to educate your doctors (and teachers, for those of us with kids).
steelydon -- take care robyn
snaped -- ill check them out ,thx
ellenrosser -- thanks robyn - got your email but haven't read yet
barryc -- have a happpy holiday, robyn
steelydon -- merry xmas to you and yours
elliebedelia -- thanks robyn have a great week
bette -- Got it this time
vdoman -- My dad also helped liberate Aushwitz
snaped -- {goodbye snaped}
robyn-g -- {goodbye robyn-g}
lost1112 -- ok great
fluffy -- {welcome fluffy}
elliebedelia -- its almost 10pm here is NH
fluffy -- hello
elliebedelia -- and Vt
steelydon -- he could tell the iran president that vdo
elliebedelia -- Hi fluffy
steelydon -- he's saying it didn't happen
lost1112 -- vdoman this news letter is it for mmd and could i get one
steelydon -- he'll face reality soo, lol
steelydon -- soon*
steelydon -- ...if he keeps talking like that
lost1112 -- wow time does fly bye huh
bette -- He's an idiot.
barryc -- the iran dude knows better... just used the remark for political purposes... even Saudi Arabia chimed in to correct the dude.
steelydon -- thats 1 of my fav movies vdo, The Battle of the Bulge
lost1112 -- ok will do
fluffy -- ellie snaped is my husband
elliebedelia -- yes fluffy i figured that out LOL
vdoman -- My dad came across at the beaches of Normandy
steelydon -- but their nuke threat is real barry, he's threatning also
steelydon -- i don't think its all politics its a fanatic
elliebedelia -- we will have nuclear war someday
bette -- My dad was drafted but he was really too old so he stayed in long enough to get his GI bill benefits and than got out.
lost1112 -- ok good night all hope to see all of you next week
steelydon -- nite lost take care
elliebedelia -- night lost hope you stay warm
barryc -- yes, steely... I don't think for a moment that Iran is SANE... too bad, because there are young educated people there who do stay in touch with the outside world.
lost1112 -- hey you too
fluffy -- goodbye lost1112 and stellydon
lost1112 -- {goodbye lost1112}
ellenrosser -- thanks everybody for the help - nite
steelydon -- nite fluffy
steelydon -- nite ellen yw
elliebedelia -- your very welcome ellen
barryc -- ellen... we expect a FULL report... so we can grade your paper... Ellie also!
ellenrosser -- {goodbye ellenrosser}
steelydon -- hope fully barry people there will wake up yes
elliebedelia -- Oh No Not A Test!
bette -- Barry, where is Julie tonight?
bette -- Cory, same question regarding Suzy?
vdoman -- Her eyes are bothering her
fluffy -- does evertone have the holiday shopping done
barryc -- bette... Julie is absorbed on line with some dudes playing TEXAS HOLDUM... she does say hi, and wishes everyone a very happy holiday
bette -- So sorry, give her our love.
steelydon -- almost here fluffy
elliebedelia -- No not me fluffyI am going to do lots of gift cirtificates
fluffy -- snoped is on poker stars
barryc -- ellie, make it a open book test... and you can cheat as much as you want.
fluffy -- what test
elliebedelia -- well barry I love multiple choice I do really well with those also
barryc -- funny ellie.. I was taking a psy course in testing at the same time my roomate buddy was in law school... he handed me his test.. .he got a D and I took it knowing nothing about the law... the test was so flaxed I got a C + knowing nada! duh
elliebedelia -- ellen who was here earlier fluffy is a student and is researching mmd and will interview some of us by e-mail
elliebedelia -- I used my brothers book report of Mark Twain and my english teacher scribbled over the top of it. This is not your work and I didn`t get a score
elliebedelia -- I never was a good cheater
steelydon -- lol ellie
barryc -- there is cheating and there is smart test taking... for example, on a multiple choice test, answer all questions you know... they count the no of answers from a-e... fill in the least used letter... you will get more right!
fluffy -- I'll try to got on next week on time I was sleeping earlier
barryc -- jjjjj
barryc -- sorry.. hit the wrong key! julie and I wish everyone a very happy holiday. Think hawaii for next year
bette -- I never used anyone elses paper but I did use on essay in three different classes. Grades ranged from C to 1-.
bette -- that was c to a-
steelydon -- goodnite all and merry christmas, see you all next week
steelydon -- {goodbye steelydon}
elliebedelia -- this was a great chat thankyou everyone and good night from NH in the snow
barryc -- time to say nighty nite... keep warm, stay happy, and enjoy for the holiday!
barryc -- {goodbye barryc}
elliebedelia -- {goodbye elliebedelia}
fluffy -- goodnight everybody see you next week
vdoman -- goodnite happy holidays
vdoman -- {goodbye vdoman}
bette -- Goodnite everyone.