01.18.2006
09:45 PM - 11:15 PM EDT
SupportCenter / MyotonicChatGroup

marciamellows -- {welcome marciamellows}
paray -- {welcome paray}
paray -- Hey MM
vdoman -- {welcome vdoman}
paray -- How are things on the west coast?
vdoman -- Hi Ray and MM
paray -- Hi VDO
vdoman -- Its raining schauzers in fresno
fluffy -- {welcome fluffy}
marciamellows -- Hi everyone! Corey, I went to that new thing that you put on the computer. I could not open any of the recent pictures only the old ones.
vdoman -- Schnauzers
fluffy -- Hello all,snow here
marciamellows -- I assume thats like raining cats and dogs.
vdoman -- Hi Fluffy
vdoman -- Yes I do not like cats
paray -- Hi Fluffy
marciamellows -- Hi fluffy!
fluffy -- sorry I haven't been on lately I've been very tired from work we're really busy
marciamellows -- fluffy, do you still work as a mial clerk? I would imagine that things would be slower this time of year.
marciamellows -- Jeff had a good week. No falls.
rockcandy -- {welcome rockcandy}
paray -- Fluffy...Your hubby was on last week I think.
fluffy -- It is bulk mail and we have 5000 convention packets and 4000 magazine subscriptions
paray -- MM..Did you run over his walker again? LOL
fluffy -- yes my hubby was on last week
bette -- {welcome bette}
marciamellows -- I did not run over anything this week.
redheader -- {welcome redheader}
redheader -- howdy all
bette -- Hi everyone, glad to be back.
marciamellows -- Hi bette! Computer finally working?
fluffy -- hi bette and redheader
vdoman -- Hi Bette and Red How are you both feeling
redheader -- what is wrong with cats vdoman? I have 2
rockcandy -- hi red
marciamellows -- Hi red! Taking any classes? Any significant others in your life?
redheader -- feeling ok except for some mild GI distress this week vdoman
bette -- MM, at least for now. We bought a new one but have not set it up yet.
vdoman -- I am allergic and they do not like me I am a dog parent
redheader -- no to both questions Marciamellows
redheader -- ahh, ok
elliebedelia -- {welcome elliebedelia}
bette -- I'm feeling fine, just a bit frustrated. Yesterday I jammed the printer and took over an hour to get the apper out.
vdoman -- Hi Ellie
rockcandy -- hi ellie
redheader -- btw vdoman I cannot access the site usent me a link to, my cookies setting won't allow it, thanx anyway
paray -- How much show Ellie
redheader -- hiya ellie
bette -- I meant paper.
barryc -- {welcome barryc}
redheader -- hi barryc
elliebedelia -- Hi no snow ray its been 45 and raining buckets all day and took all the snow
barryc -- hi red... been a while...
lost1112 -- {welcome lost1112}
rockcandy -- hi barry
vdoman -- Hi BC
rockcandy -- hi lost
barryc -- hi ms. rockcandy and vDoman
wendy2 -- {welcome wendy2}
wendy2 -- {welcome wendy2}
redheader -- had our first really signifigant snow of the season today
marciamellows -- I hada very trying week. I took a Mammogram and they called me that they saw something on it and wanted to redo it plus do an ultrasound. I went back yesterday and there was absolutely nothing there. I think that the person who did it the first time had Taco Bell or something messy for lunch!
wendy2 -- Hi everyone
rockcandy -- hi wendy
vdoman -- Hi Wendy are you flooded out of Portland yet
redheader -- I loooove Taco Bell lol
lost1112 -- hello
marciamellows -- lost1112, did you get the medication information that I sent you last week and how did the procedure you had go?
redheader -- despite what they say I have never had to make a run for the border after eating there
wendy2 -- Preety close A lot of river s near us in a Major flood warning stage
bette -- Alice, I still have not received the hard copiies os Reaching Out.
marciamellows -- Sorry there was no chat reminder, but I was really obsessed with this Mammogram thing.
redheader -- well, hope u saty dry and safe Wendy
lost1112 -- yes i did they took some biaopsy and will find out in about two weeks
robyn-g -- {welcome robyn-g}
rockcandy -- hi robyn
redheader -- was it a needle biopsy or surface?
terrirobyn -- {welcome terrirobyn}
marciamellows -- bette, Jeff and I never received "Reachign Out" either. I just told Alice that today. I did see a copy because I saw Alice's copy, though.
redheader -- hi robyn
lost1112 -- hey robin
wendy2 -- I haven't been on recently. my Mom's best friend died on christmas day.Then the day of my Mom's funeral My grandma died.
bette -- Hi Robyn. Can you send me w copy of your bio. Marbet7382@sbcglobal.net. Thanks.
terrirobyn -- Hi, this is my first time in this chat.
redheader -- hello terrirobyn
rockcandy -- welcome terriobn
lost1112 -- dont now red i was sedated and have no clue what they did
wendy2 -- My mom didn't die her best friend did
redheader -- ok
marciamellows -- lost1112, what did they biopsy?
lost1112 -- welcome terrir
paray -- Hi Terrirobyn. Join the crowd.
robyn-g -- yes, bette I'll send it to you.
robyn-g -- Hi everyone, I signed on then had to go get the phone.
bette -- Welcome terrirobin. If you have any questions, just ask.
marciamellows -- terrirobyn, do you or a family member have MMD? Where are you from?
lost1112 -- cells in bottom of throat
robyn-g -- terrirobyn - please introduce yourself.
terrirobyn -- I am getting married in May and am planning to get pregnant but I need a recommendation for a high risk OBGYN in Orange County who will talk to me about MMD and pregnancy. Can anyone refer me?
redheader -- back in June they biopsied 2 of my moles to find out if they were malignent
vdoman -- Bette and MM do you want me to email Reaching Out to you
wendy2 -- I might be getting a scooter soon
redheader -- zoom
bette -- vdo, I already got the e-mailed copy.
elliebedelia -- MM I had a report on a mamo a few yrs back and after ultrasound and biopsy they found nothing as if it dissappered then mamo every 6 mo. for 2 yrs to be sure
wendy2 -- Found one on crag's list. It was used but in good condition
lost1112 -- the way the last two years have gone nothing would surprise me at this point
marciamellows -- vdoman, first of all I do not think that I could open it on my computer and second of all I got a copy from Alice.
bette -- terrirobyn, I think the MDA ha genetic counseling. Call the O.C. office.
redheader -- last 2 years good or bad?
marciamellows -- terrirobyn, do you have MMD?
elliebedelia -- terrirobyn I had 3 children befor I knew I had mmd and all were fine except very large babies but all were normal births
wendy2 -- Our person who's runs the MDA camp left the MDA family. I hope somebody better comes along
terrirobyn -- I was diagnosed with MMD in August 2002. 2 Of my 3 brothers also have it.
fluffy -- We have good luck finding items for free from the local St Vincent DePauw socity...stair lift and a lift chair
terrirobyn -- I had one sister and she passed away in 2004 but she didn;t have it. My father had it but we didn't know about it until after he passed away
barryc -- I am afraid Julie's computer cannot connect to the internet for some reason... so she won't be on today
redheader -- ellie, my parents had 4 kids b4 realizing that my dad had MMD
marciamellows -- terrirobyn, what are your symptoms? You of course realize that you would have a chance of passing it on to your child if you were to get pregnant.
rockcandy -- say hllo to ulie fo me
lost1112 -- well lets see i went from working full time in emergency room to being unemployed was told when i was in twentys that i had myotonia and told last year i had MMD now after independent medical i am being told i have no employment capibilities and once again they are chanking the diease now they say i have the congenital form of MMD not sure how since i am now 44
terrirobyn -- Iwill be working with an IVF doctor and will be using a donor egg but I want to be checked out before.
terrirobyn -- I want to make sure that I can carry.
redheader -- of course, my dad passed away about 2 years after the diagnosis
terrirobyn -- Does anyone know anyone I can contact who knew that they had MMD and got pregnant and had a successful delivery
wendy2 -- Terrirobyn be sure to think long and hard before having your own kids.
fluffy -- spdvusa.org is the web site if you want to contact the local chapter for donated items
marciamellows -- terrirobyn, everyone is different, but we do have a few people on the chat with MMD who have gone through pregnancies if you have any general questions.
barryc -- What meds are the most common for alleviating the most prevailing symptoms of MMD? Our publishing consultant wants us to try to connect with pharma companies and tell them about the book... she will find the brand managers based on the drugs I tell her about.
paray -- {welcome paray}
wendy2 -- It is a risk to you not just them
redheader -- It take Quinine Sulfate, and the Mexillatin (?) study I did seemed to help
wendy2 -- Hi paray
rockcandy -- hi ray
elliebedelia -- terrirobyn my parents had 6 children before they knew my dad had mmd and only 1 btother and I inherited it
paray -- Hey Wendy
bette -- Barry, I use Warfarin, Tiazac and Provigel.
barryc -- thanx Red! are these drugs to alleviate muscular symptoms?
lost1112 -- any one got info on congenital MMD?
fluffy -- I haveee MMD and one child and as far as Ican tell he is fine
robyn-g -- Bette - does the provigil help? I have an appt. for Janelle to see the neur. so she can try it.
redheader -- also take Prozac, for the depression which is sometimes related to MMD
terrirobyn -- Can anyone get me in contact with someone I can talk to
vdoman -- My son Kevin is CMMD
wendy2 -- fluffy Your my show syptoms when they are an adult
barryc -- thanx bette...same question for you... what are each drug for... I know Provigel is for relieving sleepiness..
elliebedelia -- I just got Peter Harpers book on mmd and he had drugs list for different things and those you listed red are in his book
terrirobyn -- Fluffy could you contact me so we could talk. I need some advice
bette -- Robyn, it helps somewaat. Lately, I've been getting out of bed so late that I have not bothered with it.
robyn-g -- too bad Lisa is not on tonight - she has a baby and I remember her talking about situations regarding the birth of her child, i.e. placenta problems after delivery, etc..
wendy2 -- oopsyour child
redheader -- The Quinine is a muscle relaxant, it is much better and safer than Dilantin, and the other one was a research study, and it gave me more pep and I was more "with it" as my mom said
redheader -- thanx ellie, I can't remember the spelling of the research one for the life of me
marciamellows -- terrirobyn, I do know someone who had MMD and used a donor egg, but because of the hippi (privacy laws) I cannot give out her infor without asking first. If you private message me your E-Mail address I will try and put you in contact with one another.
lost1112 -- how can they tell me now at 44 i have CMMD how is this possible wouldn't somone notice something before now
elliebedelia -- thanks for that info red cause our doctors just don`t know what to do but mine will let me try anything i discuss with him
barryc -- thanx Red... that helps... what about mexillatin?
fluffy -- I was also diagnosed when I ws one week pregnant and did not know it
elliebedelia -- I`m taking down these meds incase I need them
vdoman -- Suzy had numerous problems during her Pregnancy and all related to MMD
redheader -- mexillatin was the research drug. As I said a bit more pep and alertness
wendy2 -- I tried Prozac but stopped because I didn't think I needed it
robyn-g -- lost, from everything I've read, if you had the congenital form, you would have had some serious symptoms from infancy - even with an early childhood onset, you would have had symptoms from 1-6 years old.
redheader -- Prozac helps me immensly, so does my sense of humor
vdoman -- Polyhydromis, little fetal movement,
redheader -- also, if u take the Quinine Sulfate, u will never get malaria lol
terrirobyn -- I have been taking Cylert but they are taking it off the market.
barryc -- Soooo Prozac, Provigel, and Quinine Sulfate or Dilatin are the most common drugs our chatters are taking?
lost1112 -- this is what i thought as well so how did i go my whole life with no one seeing any problems until twenty it makes no sence to me at all
vdoman -- CMMD usually shows up from birth
marciamellows -- terrirobyn, I think that vdoman could possibly answer some of your questions. Why don't you try asking him. His wife went through a pregnancy with complications from MMD.
redheader -- Dilantin is evil
elliebedelia -- lost when i was taking my dad to va hospital appointment the doctors there just didn`t know anything about mmd
terrirobyn -- I couldn't handle the Provigil it made me nauses all the time
barryc -- why evil, Red?
wendy2 -- lost, I was diagnosed with MMd till i was 16. I had never even heard of it till then
robyn-g -- YEs, Red, I agree - Joe took it and it made him a ZOMBIE!
fluffy -- do any of you lose weight on prozac? I lost 33pounds and then10 pounds on zoloft, know I take fluxotine a form of prozac
redheader -- hard to put into words, Barryc, just don't take it
lost1112 -- yes i know but now just wondering if they even knew about MMD and yes ellie i know this as well but this is coming from a doc who claims to be an expert on MMD
redheader -- its funny, Fluffy, I have agined weight on Prozac
wendy2 -- Doctors aren't always right with Meds
marciamellows -- fluffy, I have never taken prozac, but I have heard of people loosing weight on it.
robyn-g -- fluffy - a lot of people put ON weight when taking antidepressants - interesting that it has a different affect on you.
bette -- I took Prozac for many years and have switch to Zoloft. They seem to work about the same. I'm not up and happy but I'm not suicidal r murerous either.
vdoman -- Lost you need to get a 2nd opinion because it sounds like you are more likely Adult onset not CMMD
elliebedelia -- I had dilantin and it is also to control siezures but they gave it to me as a muscle relaxant but if you get on it and decide not to take it or forget it will bring on a seizure. I never even took it
robyn-g -- well guys - just FYI - our status conference is tomorrow morning, that is where they tell us what day the trial is - it will be next week.
bette -- lost111, most Drs. need to be educated by us. They just don't know enogh amout MMD
redheader -- my friend tried St. John's Wort as he is into all the holistic herbal organic lifestyle thing. It didn't do a damn thing for him
barryc -- For those who are interested... I spoke to the Producer of the Today Show today... she has all of Terry's info on her desk... she promised us an answer in March... she is off to Greece for coverage of the Olympics... sooooo the beat goes on...
terrirobyn -- I had adult onset yes.
robyn-g -- The girls' mom quit her job - so no more child support until she gets another one, which she doesn't intend to do.
redheader -- I was on Dilantin before they put me on Quinine, because I complained about the Dilantin
barryc -- Bette... what is Warfarin and Tiazac for?
bette -- Barry, how exciting, keep us informed.
redheader -- for the quinine though, I need to have EKGs done periodically
elliebedelia -- that happens with child support lots of e-spouses work under the table so not to have to pay
barryc -- thanx bette.. will do!
wendy2 -- Bette some doctors just look at you like you've lost your mind when you TRY to educate them on MMD
lost1112 -- VDO this is the third opinion first one to tell me CMMD though i tend to think it is not CMMD
terrirobyn -- {welcome terrirobyn}
marciamellows -- Barry, thats so exciting about the Today Show. Keep us posted.
bette -- They are for the heart. Warfarine is Coumiden to keep the heart beating in rythem and Tiazac is to slow the heart down (I think)
elliebedelia -- wendi I have an asian doctor who showa a lot of interest and even calls me at home to ask me questions to help him get info
redheader -- my original neurologist, before I switched to doctor Thornton, told me that up until about 1984 or so, they had no idea about what MMD was
lost1112 -- wendy doctoras do that when the person trys to tell them anything
bette -- Ellie, those are the ones you stop going to.
wendy2 -- Does anybody else have a pacemaker
barryc -- thanx Marcia for your encouragement...I think we have a good shot at the Today Show, if the producer likes the DVD we did for last year's MMD conference.
robyn-g -- yah ellie, I spose your right - we just consider it a bonus when it does come. Although, I think her motivation is that if she goes to court unemployed, she will think the judge will modify the amount of support - but that is not how it works, if you are not employed - they will impute your income, as if you are employed.
elliebedelia -- coumiden and or warferin are blood thiners aka rat poison
marciamellows -- rewdheader, you are so lucky to live where you do and are able to have Do. Thornton as a doctor.
vdoman -- That is true Red because when Kevin was born in 1982 they said he had CP
lost1112 -- so redheader you telling me when i was born in 1961 i could of had it and no one ever knew
redheader -- cerebral palsy?
vdoman -- Yes
robyn-g -- lost - I think you always have had it, just haven't always had the symptoms.
redheader -- I was born in 1966 and wasn't diagnosed until 1997
kshirk -- {welcome kshirk}
kshirk -- Hi everyone!
redheader -- that was when I finally said ok, something ain't right
barryc -- I also was very impressed with Doc Thornton... red, do you know his address or tel no...I might send him a copy of Terry's book.
robyn-g -- hi kshirk.
vdoman -- Hi Kshirk
marciamellows -- wendy, Jeff has a pacemaker/defibrilator.
bette -- Hi kshrink
rockcandy -- i kshirk
fluffy -- I was born in 1962 and wasn't diagnoised til 1990
robyn-g -- Red, Joe was born in '66 and diagnosed '95
redheader -- hi kshirk, yer name sounds like a switchblade opening lol
kshirk -- I had my blood test last week and met with the doctor who diagnosed my mom...
barryc -- red, you were born one year after I finsihed college... take that as a complement... I am envious.
lost1112 -- ok look everyone thanks for your input but this was without a doubt not what i wanted to hear and not what i needed to hear either
robyn-g -- kshirk, when do you get the results?
kshirk -- redheader - first time i've ever heard that! kind of cool!
redheader -- awwwww barryc,u make me feel so warm and happy lol
wendy2 -- I was born in 1974 diagnosed in 1999
fluffy -- sorry lost111
wendy2 -- Whoops 1989
kshirk -- robyn - 4-6 weeks... BUT the doctor did an EMG on one arm muscle and a full clinical exam
barryc -- warm and happy is good red, but keep taking your Quinine.
redheader -- roflmao
robyn-g -- Sorry, lost. what do you want to hear? we're here to help.
vdoman -- Lost Unless you had complications and problems from birth oneof them mild retardation etc How can he say you have CMMD
robyn-g -- kshirk - what was the result of the EMG?
boobear -- {welcome boobear}
kshirk -- He said everything looked completely normal, for my sister as well
redheader -- I have the cognitive slowness problem which is sometimes related to MMD
vdoman -- Hi Poohbear
rockcandy -- hi boo
elliebedelia -- I don`t agree with cmmd for you lost
marciamellows -- kshirk, so you have not been diagnosed yet and this was to diagnos you?
kshirk -- But I'm just finding it hard to imagine that neither of us is affected, so I'm just going to wait for the DNA results.
lost1112 -- its ok robyn it does not matter any more
robyn-g -- kshirk - that is good news.
redheader -- Which ticksme off, as I have always been more cerebral than physical
bette -- Hey boobear glad to se you're visiting us.
kshirk -- marcia - my mother was diagnosed a month ago and my sister and i went in to have the blood test, but they wouldn't do the blood test without an exam as well
redheader -- hiya boobear
robyn-g -- You matter, lost.
wendy2 -- Well dinner is ready. Roast chicken, mashed potatos, and green bean cassarole Bye
kshirk -- robyn - i'm hoping! He said the emg would probably show signs of myotonia as early as the teen years
lost1112 -- was told in early school i had some learning problems but dont really know what those were
vdoman -- Bye Wendy
boobear -- Hi, everyone. I had a meeting tonight and just got home.
marciamellows -- kshirk, I think that all you really need for a diagnosis is the DNA? When should you get that back?
redheader -- with the exception of the casserole that sounds good
elliebedelia -- lost did you get my message I will be glad to send you peter harpers book
robyn-g -- Red, you sound so much like Joe - the cognitive issues you speak of - tick Joe off as well - as I'm sure it would me too - were I in the same boat.
kshirk -- marcia, we should get it back in another 3-6 weeks
bette -- Lost, please don't give up on us. We'd hate to see you leave.
barryc -- I find it so interesting to consider how the brain appears to be affected by MMD... apathy, depression, learning disabiities and cognitive functioning. apathy, sleepiness... these are different centers of the brain... some related to emotional centers, others sleep centers, and still others alertness/cogitive areas...I will need to go back and study brain functioning... so much has been mapped since I was in school.
robyn-g -- lost - our girls have some learning disabilities, but they also amaze me with their wit and their compassion. We all have strength and weaknesses, whether or not we have mmd.
marciamellows -- terrirobyn, are you still on?
redheader -- I really miss my verbal skills, I used to be able to speak very well, now sometimes I can't get the right word to come out
robyn-g -- wow - Red - just about everything you type - has been expressed to me by Joe.
elliebedelia -- barry you will be a neurologist great I will be your first patient
barryc -- robyn... you said it soooo well... happiness can be had by all, irrespective of limitations... I have clients who are extremely bright... so what... they are sooo unhappy.
bette -- Red, I'm having the same problem
redheader -- I will know that the word I used wasn't the "correct" one to get my point across clearly enough
elliebedelia -- same here red sometimes the words come out right but in the wrong order
redheader -- Twilight Zone, eh Robyn-g?
robyn-g -- very well said, Barry. Life is full of choices. I just figured out this past weekend that I choose to push my family away so I can "get things done". Now that I am aware of that, I will choose to behave differently.
bette -- Red, I usuaally fowllow up with "that isn't the word I wanted but I couldn't think of the right one.
babykayla -- {welcome babykayla}
redheader -- and when i type, sometimes I get all discombobulated
marciamellows -- You guys sound like you are describing Dyslexia.
babykayla -- Hi All!
vdoman -- Hi Lisa
barryc -- Our MD doc wants Terry and I to give a presentation to a neurology conference of docs... would be interesting for them to hear how a patient and caregiver experience the disease...
rockcandy -- hi lisa
robyn-g -- Hi Lisa - terrirobyn has been on tonight and has questions about pregnancy.
bette -- Hi Lisa. How is Kayla doing ?
barryc -- hi babyk ... how is the big girl this week?
robyn-g -- Barry, I am very interested in being updated as to how that develops.
elliebedelia -- yes marcia I am sure I would have been diagnosed with that iff they had known that tern for me in graded school
redheader -- I beleive Dyslexia is more related to visual (can't think of word)
redheader -- I could be wrong tho
babykayla -- Hi Bette, Robyn, Rockcandy!
bette -- Barry go for it. It is very satisfying to think that you have helped Drs. understand.
barryc -- yes, Dyslexia is a visual processing problem.
babykayla -- Kayla is doing well. She is able to come off of the ventilator for 2 hours, 3 times a day now
marciamellows -- I do not know if terrirobyn is still on.
redheader -- thank u barry
barryc -- thanx bette... we are intent on doing all we can this year, with the help of our MD doc... he is going to give me the names and tel no's of all MD docs serving MD clinics..
marciamellows -- lisa, tell us more about Kayla.
redheader -- like the dyslexic warlock who sold his soul to santa
babykayla -- Hi Barry! She's great! Making small improvements everyday
elliebedelia -- thats great Lisa she is gaining you must see so many encouraging things each new day!
redheader -- sorry, bad joke
robyn-g -- Joe and I went to a marriage conference this past weekend. The wife of the husband/wife team that facilitated it was a neurologist at a children's hospital in Sacramento. Joe introduced himself and asked if she was familiar with mmd. She immediately said "how is your heart?" and asked him to shake her hand (checking the grip/ grip/release). I was amazed that she had a clue, since so many don't.
barryc -- babyk... you and your husband are an inspiration for all of us...babyk is soooo fortunate to have such wonderful family
redheader -- ah, yes, the "MMD Handshake"
babykayla -- Hi Marcia! We have removed Kayla's tube feedings during the day and now she is only getting 11 hours of continuous feeds at night
redheader -- that is awesome babykayla
barryc -- go Kayla!
babykayla -- Hi Ellie! Kayla weighs 16 lbs. 14 oz.
bette -- Robyn, Mark and I belong to Marriage Encounter. Is that the weekend you went on.
vdoman -- She is getting big Lisa that is awesome
marciamellows -- Lisa, that is awesome. So she is able to breast feed during the day?
babykayla -- Thanks Barry! You are too sweet! I'd do anything for her, you know!
babykayla -- Hi Vdoman! How are things with Kevin and Suzy?
redheader -- Funny, she weighs just a little more than my cat
kshirk -- That's great news Lisa!
babykayla -- Marcia, yes she is nursing all day now.
vdoman -- Everyone is Ok Yhanks
babykayla -- Red, that is too funny!
redheader -- that is wonderful
elliebedelia -- marcia did you make a big haul in vages ?
babykayla -- Bette, what is Marriage Encounter?
redheader -- My mom went to vegas and saw Blue Man Group and O
elliebedelia -- I am not too far from Mohegan Sun and Foxwoods
kshirk -- Well everyone I have to get going... have a great night! I'll keep you posted on the test results.
kshirk -- Well everyone I have to get going... have a great night! I'll keep you posted on the test results.
babykayla -- Thanks Kshirk!
barryc -- marcia... the chat line is an official record... beware the IRS in reporting your winnings, tonight.
robyn-g -- No, Bette - it's not - a similar thing though. goodnight everyone, I'm going to take the kiddos to church. be back next week.
redheader -- 'night kshirk
elliebedelia -- have a good one kshirk
babykayla -- night Robyn!
vdoman -- Bye Robyn
kshirk -- You too!
elliebedelia -- you too have a good week robyn
redheader -- g'nite robyn
bette -- It's a weekend for married couples to learn to use their communications skills better. It makes a good marriage better and helps couples figure out what is going on between them.
robyn-g -- {goodbye robyn-g}
barryc -- Terry insisted on my arranging a limo for him and his friends, when he celebrated a B-day, and lived in CT... we all went to Foxwoods, Ellie.... and had a blast...
babykayla -- hmmm! Sounds interesting!
redheader -- I had a friend who could have used that, but he and his girlfrind broke up instead
fluffy -- I'm going to bed know I'll talk to you all later
redheader -- sweet dreams fluffy
rockcandy -- nite flffy
barryc -- nite fluffy...sleep well.
elliebedelia -- nite nite fluffy
vdoman -- Goodnite Fluffy
babykayla -- night Fluffy! Have a good one!
lost1112 -- hi babyk
marciamellows -- Some friends are taking Jeff and me back to Vegas in February for my birthday.
redheader -- must be nice
bette -- It really is a great weekend. If you have a prist or minister you can probb;u get more info from him/her.
rockcandy -- my eeyes are
barryc -- marcia.. no more mirrors on the motel ceilings... your reputation is spreading FAST in Vegas land.
redheader -- haven't travelled in a while
elliebedelia -- my youngest son , the navy man is in ct and always after me to come down and take me to foxwoods
redheader -- lol barry
lost1112 -- you mean that rumor is true barryc
babykayla -- question for everyone
rockcandy -- my eyes are going bad so im going to sign offgood nite
redheader -- navy grrrrrr lol
babykayla -- Does anyone sleep with their eyes open slightly?
redheader -- night rockcandy
barryc -- yeh, lost... marcia has got to get some PR help.
elliebedelia -- I haven`t been anywhere too far for 2 yrs now I need to save up some $$$ to go
rockcandy -- {goodbye rockcandy}
babykayla -- i'm wondering if it will cause any problems with dryness for Kayla
redheader -- not that I am aware of, no pun intended
barryc -- ellie, is your son in New London?
vdoman -- Suzy and Kevin both sleep with eyes open
lost1112 -- wife says i do but i dont know never looked lol
redheader -- same for me eelie
sweetheaven -- {welcome sweetheaven}
redheader -- ellie
bette -- I do. I don''t think I always did but after I had my lids lifted I was never able to fully close them again.
vdoman -- Suzy has a big problem with dry eye
redheader -- hi sweetheaven
elliebedelia -- yes barry he is at Groton and is in the USS San Juan
sweetheaven -- hello everyone
marciamellows -- I think that Jeff sleeps with his eyes partly open sometimes. Not really sure. They have drops for dry eye though.
barryc -- yes, bette... that makes eyelid surgery risky... julie had one successful surgery... will likely need another, and we are holding out for as many years as she can.
bette -- I don't have too many problems with dry eye. It depends on the weather.
redheader -- I keep drops by my computer, since studies have shown people don't blink as much when using a computer
elliebedelia -- interesting red maybe I should use eyedrops
bette -- Barry, when I went back for a second surgery they told me not to bother.
vdoman -- Hi Carolyn How are you
barryc -- Terry lived in Westbrook CT not far from New London... and we will be visiting there in April for a Parent Day weekend at a program he attended for 6 years.
redheader -- I prefer Murine
redheader -- just a suggestion
sweetheaven -- i am doing good i start a new job tomorrow
babykayla -- Thanks for the info!
bette -- By that time I had no muscle movement in my forehead and they said that was necessary for the surgery to work.
redheader -- wtg sweetheaven
barryc -- bette... that's tough... are your eyes troublesome/dry now?
babykayla -- What are you going to do sweetheaven?
elliebedelia -- I live about 3 hrs north of their and have been to New Londen a few months ago
sweetheaven -- companion ( home Health Aid )
babykayla -- Bette, why did they say no to the second surgery?
bette -- They're not dry, just drooping and getting in the way of seeing.
marciamellows -- What is your new job sweet and how is the family?
redheader -- awesome sweetheaven
sweetheaven -- my new job is companion ( home health aid ) family is doing akind ok
elliebedelia -- I have worked for home health companion also in the past and enjoyed it very much now I do it private work sometimes
barryc -- now, just to date myself... after I finished my masters degree, electric boat company in New London, offered me a job... Julie and I were seriously considering it, since we liked the CT shoreline... but did not take it after all...went on to live in FL
marciamellows -- Bette, do those special glasses you have for the droopy lids help?
babykayla -- bette, sorry to hear! Have you ever tried glasses with eyelid rests?
bette -- Lisa, they just said it would not work and that was from the Chief Opthomologis/Plastic surgeion at UCLA.
babykayla -- I've seen them advertised
redheader -- well, gotta go, getting sleepy take care all, sweet dreams
sweetheaven -- ellie it feels so good to have my foot back in the door with the companion
barryc -- right now we are looking for a "family caregiver" to get Julie up and out from time to time, to cook for us (I hate cooking!) and do sundry things around the house. Then, I will play more and maybe do some quicky trips.
sweetheaven -- night redheader
elliebedelia -- nitey nite red
redheader -- {goodbye redheader}
marciamellows -- Did anyone make New Years Resolutions that they have kept or already broken?
bette -- Marcia, they help somewhat but now my eyes don't adjust well and have trouble focusing . It's always something.
sweetheaven -- i have
sweetheaven -- i wanted to stop smoking did it for one week and went right back into smoking again
barryc -- I resolved to not make a resolution, unless I gained weight, and I have not. OMEN
elliebedelia -- i have cloudy eyesight and will be so glad to have caterac surgery!
babykayla -- marcia, I have a New Years Resolution to try and get out and walk everyday. I haven't been once yet! Oops
marciamellows -- sweet, how did you stop smoking for one week? Cold turkey?
bette -- I rersolved to get out of bed when I woke up. Never kept it.
sweetheaven -- yeah cold turkey
elliebedelia -- oh sweet you can do it just keep trying I did and I quit I do know its easier said than done though
barryc -- Terry had cateract surgery just last month.. he vision is now perfect, and he only wears glasses to read. Go for it, Ellie.
bette -- {goodbye bette}
sweetheaven -- until I got a phone call about my grandma being in the hospital and grandpa crashed up his car
elliebedelia -- I have to wait till anext January to be covered with medicare
elliebedelia -- Has anyone signed up for the medicare drug plan?
sweetheaven -- it was not a good way to start off the new year , i feel like every year never go's right something always happens
sweetheaven -- no
marciamellows -- Congradulations to Terry on his successful cataract surgery. Unfortuneately Jeff was not as pleased with his cataract surgery.
elliebedelia -- my mom had hers done, both eys and doesn`t need glasses now
barryc -- Ellie, if you switch to United Medicare, the drug plan is free, and pretty good.
sweetheaven -- can i ask something
lost1112 -- go ahead sweet
elliebedelia -- oh bary thankyou so much I will look into that so many people are so confused as to what to do
marciamellows -- My oldest daughter is a case manager for developmentally delayed infants. She just got a new job as head teacher at a preschool for special needs children and is very excited. She was missing hands on with the children and tired of pushing papers.
sweetheaven -- does low blood pressure and low blood sugar come with the MD
lost1112 -- can't answer that one um barry can you help
marciamellows -- sweet Jeff has MMD and has a tendency towards high blood pressure and has high blood sugar (diabetes).
elliebedelia -- marcia she is very special to be able to have a job like that
lost1112 -- i have high sugar and high pressure
sweetheaven -- my md is also progressing aliilte bite faster
elliebedelia -- my B/P is creeping upward
sweetheaven -- my dr's are saying it is from the MMD I am so confused any more
sweetheaven -- mine can drop to 70/38
elliebedelia -- I don`t know but B/P can be caused by so musc like stress and lots of different things
lost1112 -- i think i have read somewhere that it is related but just not sure where i read this
sweetheaven -- my dr's are telling me that i have hypo diabetes
resses99 -- {welcome resses99}
sweetheaven -- ok lost1112
elliebedelia -- hypoglycemis sweet?
lost1112 -- a family memeber of mine with MMD also is hypo
sweetheaven -- yeah ellie
marciamellows -- Hi resses99. Please introduce yourself.
resses99 -- Hi. I need some info about Congenital Myotonic Dystrophy is this the right place? I'm in the process of being approved for adoption and there is a little sweetie with this.
elliebedelia -- hi resses
lost1112 -- this is the place resses
resses99 -- Sorry took me a while. I've never seen a chat room like this. I am from Canada. THanks
sweetheaven -- hi resses and god bless you for taking in a sweet child with md
marciamellows -- reeses. you are definitely in the right place. What are your questions or concerns?
elliebedelia -- we have lots of info resses
sweetheaven -- glad to meet you resses
resses99 -- Well. Its not finialized yet. What happened was I inquired about her to know more and they wont give it to me unless I put in a form of intrest so I did
marciamellows -- How old is she and do you know any of her symptoms?
sweetheaven -- ok i have to get some sleep big day for me tomorrow see you all nest week big hugs to everyone
lost1112 -- night sweet
elliebedelia -- night also fron NH everyone
marciamellows -- resses, you are definitely in the right place, but the chat line is about to close. You are very late. Please join us again next week earlier.
resses99 -- She is about a year and a half I know she can smile and she doing good with her fine motor skills but she is behind in her gross motor skills.
lost1112 -- night ellie thanks
elliebedelia -- did you want the book lost??
resses99 -- sorry Thanks later everyone
lost1112 -- yes please thank you