12.26.2005
10:45 PM - 12:15 AM EDT
MDAchat / FSHDChat

froglady -- {welcome froglady}
froglady -- Thought for the night: The harder you work at what you should be the less you'll try to hide what you are...Day of Discovery
beckdildal -- {welcome beckdildal}
froglady -- Hey there. Glad you could make it
beckdildal -- hello froglady:0)
froglady -- You are having some kind of bad weather up there, huh?
beckdildal -- My brother is taking my parents out to IHOP tonight so I was able to maake it
beckdildal -- we had a mix of rain and sun showers today.
froglady -- My first trip to IHOP was in March when I went to CO. There was one across the parking lot from the hotel. Good food!
froglady -- We are still unseasonalably warm. We desparately need rain
beckdildal -- How was your Christmas?
beckdildal -- wish we could give you some of ours,,lol
froglady -- Beck, you wouldn't believe it. I was in bed all day with the stomach flu while the rest had Mexican food over at Pokeys :(
beckdildal -- aaaw, sorry to hear that!
froglady -- I am just barely here tonight, but I think I will make it through
froglady -- I needed to get my mind of myself tonight. LOL
hen -- {welcome hen}
beckdildal -- my hubby and i ate out at mexican today
froglady -- Hello hen: Welcome aboard
hen -- hello
beckdildal -- welcome hen:0)
hen -- ty frog, good to see you
hen -- how's it going beck
beckdildal -- How's it go going with you and your family hen?
froglady -- As soon as my tummy is back in control someone is going to take me out for Mexican Food!
hen -- we're all doing well thanks beck
hen -- how are you and yours?
hen -- yummy frog lol
hen -- my oldest dtr is in the hosp, she went in on dec 23
hen -- for shortness of breath, chest pains
beckdildal -- we had a good time with family this weekend hen. i made Indian food on Christmas DAy.
froglady -- Sorry to hear that Hen
hen -- she has lost a lot of weight, and her potassium level is low
hen -- thanks frog
beckdildal -- hen, did they find out what was wrong?
hen -- don't know if its the md or what yet
hen -- good for you beck
hen -- no they're still running tests beck, but she's been on oxygen this whole time
steelydon -- {welcome steelydon}
beckdildal -- hen, did the rule out a heart attack?
hen -- i'm very concerned
froglady -- Beck, I don't believe we have an Indian restaurant around here, at least not that I know of
hen -- hello steely
beckdildal -- hi there steelydon:0)
froglady -- Welcome aboard steelydon: Glad you are back
steelydon -- Hello hen, hello all
hen -- yes well i think so
hen -- they said she doesn't have pneumonia
hen -- i just don't know
hen -- how are you steely
beckdildal -- how have you been steely?
froglady -- How did your Christmas go Steely?
steelydon -- I've been ok, just busy with alot on my mind
beckdildal -- I haven't been online much during that past week since my brother has been visiting
steelydon -- Just family things here for Christmas
beckdildal -- he leaves to go back tomorrow
beckdildal -- where is pokey tonight froglady?
froglady -- That pokey has been getting phone calls all day. She will be on as soon as she can be
beckdildal -- steely, may i ask what's on your mind. is something worrying you?
froglady -- You guys are going to miss your brother after having had him for two weeks. Hopefully it won't be so long until you see him again
hen -- is everything ok steely
beckdildal -- i hope so froglady, and i'm sure mom does too.
froglady -- Steely, I told you the last time you were on that I would send you info on Pokey and my trip to Rochester, NY for FSH research. I haven't forgotten & will still do it
steelydon -- ok froglady thanks
steelydon -- I'm ok here
froglady -- Steely do you have a gig for New Years?
steelydon -- no lol
froglady -- Did you all see where they have found a medicine to help Myotonia MD?
gypsy -- {welcome gypsy}
gypsy -- hi all :o)
froglady -- This discovery was made at the Rochester NY Hospital
froglady -- Hello Gypsy: How are you doing. Haven't seen you in a bit
steelydon -- I'm becomimg more an more of a loner with the md I can't do alot of things, its just affecting my social life alot
gypsy -- you will never guess what i got from santa
froglady -- What?
beckdildal -- did you get a new computer gypsy?
gypsy -- yes beck one of my own :o)
pokey -- {welcome pokey}
beckdildal -- wow, gyspy. that's so exciting!
froglady -- That is too bad Steely. I know what you mean. I think it is worse when you are as young as you are
gypsy -- have to go my sister is leaving might be back hope everyone had a good christmas
froglady -- Hello Pokey. Welcome aboard. Did you have a phone call?
gypsy -- yes it's great beck will be much easier
pokey -- Hello beck, froggie, gypsy and steelydon.
steelydon -- take care gypsy
froglady -- So happy for you gypsy. Have a Happy New Year
steelydon -- hi pokey
pokey -- Happy New Year gypsy.
beckdildal -- You too gypsy and hope to see you online more with that new computer of yours
hen -- hi pokey
beckdildal -- Hi pokey:0)
hen -- hey gypsy, long time no see
pokey -- Hello Hen. I didn't know you were here. Sorry.
hen -- tc gypsy
hen -- its ok pokey
hen -- brb
froglady -- I am happy Gypsy got her own computer. She is going to be so happy with it I think
pokey -- Froggie, how are you feeling?
pokey -- Did you all have a good Christmas?
marie2354 -- {welcome marie2354}
froglady -- Pokey, I am doing pretty good. Nothing like taking your mind off yourself. When I am here I can do that
froglady -- Hello marie2354: Welcome to the FSHD chat
beckdildal -- hello marie:0)
steelydon -- yes pokey it was nice here family get together
steelydon -- hi marie
marie2354 -- FSHD stands for ?
beckdildal -- Marie, do you or someone you know have md?
froglady -- Facioscapulohumeral Muscular Dystrophy
beckdildal -- facioscapulohumeral dystrophy
pokey -- Hello marie2354. Welcome.
marie2354 -- my daug has mito
steelydon -- she might want the other room
froglady -- How old is your daughter Marie?
marie2354 -- well bye have a nice nite and chat 23
beckdildal -- steely, i think the mito chat is over for tonght
froglady -- Marie, the Mito chat is on now also I believe
marie2354 -- {goodbye marie2354}
steelydon -- ok i just noticed another on my way here
pokey -- Beck, did you get Ruby the Dutch's card?
froglady -- You're welcome to stay and chat with us Marie
mytishtash -- {welcome mytishtash}
steelydon -- hello mytis
mytishtash -- merry day after christmas day!!! hi everyone
froglady -- Hello mytish: Welcome aboard. Good to see your voice
beckdildal -- pokey, i did get the card and it was lovely.
froglady -- lol mytish, I like that one
mytishtash -- hi froglady, beck, pokey, marie, steelydon and who did i miss?
froglady -- hen
pokey -- Hi tish.
beckdildal -- hi mytish, i've been missing you. how have you been?
mytishtash -- today was the first day in 2 wks ive been able to get outta the house and do some shopping -- rain rain rain....
mytishtash -- hi hen -sorry i missed saying Hi to u :)
froglady -- Beck just offered to send some of it down our way. We are desparate for rain
mytishtash -- hi beck -- im fine. how have u been?
pokey -- How do you handle the rain with you working, beck?
steelydon -- i didn't mean to complain before i'm just tired of being weak and looking helpless
mytishtash -- was everyone's christmas good? did y'all get whatcha wanted? LOL
froglady -- You are among those who understand your feelings Steely
steelydon -- ..but i can still do alot, i look at it
beckdildal -- mytish, i've been having a good visit with my brother
pokey -- I had eleven souls here tish. We had a very lovely day except froggie was sick and couldn't come.
mytishtash -- wonderful, beck - im glad thats going well
pokey -- I got what I wanted tish - two of my children here. What could be better. lol
froglady -- Mytish, my Christmas was not a happy one because I had stomach flu, but I am better today. Whee!
steelydon -- is there anybody here who can't get up from sitting? i have to kneel up on things and bring myself to a stand
beckdildal -- pokey, i don't use an electric scooter or chair, so the rain is no problem for me.
mytishtash -- froglady- oh no! im so sorry to hear that. fsh and flu of anykind dont play well together - almost worse actually. i hope u recover soon
beckdildal -- ice and snow...now that's different, because it's slippery then
froglady -- Steely, I can't rise up from a sitting position at all without a lift
pokey -- Oh and I forgot to say - my new Son-in-Law was here.
steelydon -- i kneel on my bed, another chair, etc. and bring myself to a stand
steelydon -- ok froglady
mytishtash -- pokey-- what fun!
steelydon -- ice an snow isn't good beck
froglady -- Thanks mytish, I am already better
steelydon -- its downright dangerous
mytishtash -- pokey - new family members are always a blessing
steelydon -- i have enough on wet grass etc
pokey -- That's interesting steelydon. We all learn ways to get where we want to go. I use my arms an awful lot to help pick myself up. I also have a lift recliner and a lift on my electric scooter. I don't use them any more than I have to so I will keep my strength as long as possible.
froglady -- Steely in all honesty these things that help me up and around are making my quality of life 100% better
beckdildal -- steely i just got a special seat to use for gardening that will make it easier for me to get up and down. but i can still get up off my couch. my mom uses a lift recliner chair to help her get up.
steelydon -- you mean it lifts you beck?
pokey -- I use my arms too much at times and they get very sore.
steelydon -- good froglady
froglady -- Pokey I was wondering how you did with your new son-in-law
pokey -- Beck, does your gardening seat have wheels?
froglady -- Mytish, did you have your children with you for Christmas?
pokey -- I did great froggie. He just fit right in. He was terribly tired though from working such long hours during the holiday season.
steelydon -- pokey thats why i don't want much assistance i want to use what i have: the strength thats still there
beckdildal -- pokey, i couldn't find the one they advertised in Quest which has the wheels. this one fold up and you have to get up to move it.
pokey -- That is how I was when I was younger about walking without helps.
steelydon -- its seems since i got my braces for drop foot my ankles have gotten weaker cause i don't use them like i did walking without them
beckdildal -- steely, it has arm rests on it that i can grasp onto to get up. i also use my arms to help me get up and down, like pokey.
mytishtash -- froglady--i was alone this time- but its ok. my sons devoted over an hrs time per phone call to me, my step daughter did the same as well as the ex hubby! daughter was on the road from elko, nv to reno. but she finally called me last nite and -u guessed it - we spoke for nearly an hr -- it was good! full day just on the phone!
steelydon -- can we exercise? is it bad for our muscles?
pokey -- One thing you have to be careful about, steely, is that if you take a bad fall, you will have to start using more helps which is what happened to me. I fell and broke my hand, then decided a cane might be a good idea.
froglady -- Steely I was falling far too much when I got my first braces, and they said the braces were the lesser of the two evils
steelydon -- good beck, sounds like me, i use my arms and shoulders alot that way to
froglady -- That's great Mytish
hen -- sorry, gotta go, tc all
steelydon -- they are hard to walk in i had mine 12 yrs now and they are still so awkward
hen -- hope to see you here next week
hen -- God bless!
beckdildal -- This is what it looks like: http://www.floriantools.com/Merchant2/merchant.mv?Screen=PROD&Product_Code=JBI2000&Category_Code=
steelydon -- take care hen
froglady -- good night Hen. Have a blessed New Year and come again
beckdildal -- night hen, come back often
mytishtash -- g'nie hen
pokey -- Steely, I read in the Quest magazine that they have decided it is ok for FSH'rs to exercise. Did any of you read that article?
froglady -- Steely everything new that you have to get used to is a real struggle
froglady -- I thought I read that too Pokey, but do not remember which issue it was in
steelydon -- which issue pokey?
pokey -- I believe it was in the next to last Quest.
pokey -- Good night Hen and Happy New Year.
mytishtash -- i threw caution to the wind a couple of yrs ago and started exercising at the local YMCA. it did wonders for me and the fshd. just dont overdo is the key.
steelydon -- my doc said walking is the best exercise for me which i try to do as much as i can
froglady -- One thing is for sure if you don't use it you lose it.
pokey -- Yes tish, I believe that it is fine and just don't overdo.
steelydon -- but weather, like windy out forget it
beckdildal -- mytish, we've been having some wild swings in weather haven't we??
pokey -- Yes steely, wind is not for me. I have gotten into trouble in the wind.
steelydon -- did that chair cost and arm or a leg beck?
mytishtash -- i cant go back to it tho as the lordosis has reached its breaking point - im extremely careful in my movements now. crunch and grind - ewww! LOL
froglady -- I know what you mean Steely. I do not do wind at all
pokey -- Steely, when I walked with the walker I would get as close to a wall as possible and hug it. lol
mytishtash -- beck -- ive gone back to no heaters and have my back door open again -- its been very warm down here. i like it tho!
steelydon -- i can't believe my afo braces costs $1007.00 and that was 12 yrs ago
pokey -- Beck, would that gardening thingy be good for in the house as well?
steelydon -- i hear ya pokey
froglady -- Steely all these helps are attrociously expensive. It should be against the law
beckdildal -- pokey, it would work in the house as well and it's not that expensive
steelydon -- i use nothing to walk with but i walk slow
pokey -- If I walk much with my walker now, my knees kill me. They are worn out from locking them the doctor told me.
pokey -- I think my knees are so bad also because I have taken so many falls on them.
steelydon -- think of a kid who needs them as he or she grows
froglady -- Steely that is the way our brother walks. He looks like he is going to fall backwards when he walks also
gypsy -- {goodbye gypsy}
beckdildal -- compared to afos anyway...it's about $35
pokey -- When I walk, I lean forward. Interesting.
steelydon -- only thing i ever broke in a fall was my left big toe and its my driving foot it hurt but i still drove, i have a left foot gas pedal in my truck
beckdildal -- my afos were paid for by a grant from the MDA clinic, thankfully
steelydon -- yep i hear they pay now
pokey -- My right foot is better than my left so I am in good shape in the car when I drive.
mytishtash -- i drive left footed too- but the gas pedal is still where its s'posed to be!
pokey -- That must be interesting tish. LOL
pokey -- Froggie, did you ever try to use your left foot for the gas?
froglady -- MDA will help with some expenses, but there are rules that must be followed and limitations as to what they will pay
steelydon -- my left one broke about 3" above the heel and i fixed it with stainless steel, small plates
steelydon -- this past summer it broke
mytishtash -- haha! could be, pokey - but its just to simple - i support the left foot/leg with my right one - and gas/brake very effectively! ive always driven that way --even before the fsh took hold
beckdildal -- pokey, my achilles tendon is stretched out more on my right foot and i think it's because i use it to brake and accelerate.
froglady -- No, Pokey, I cant use my left foot either. but I have a hand brake on the left side
beckdildal -- lucky you are good at fixing things steely
mytishtash -- Oh! and i drive barefooted - thats always been constant too. when i went for my dr. lic - the tester just gave me a wierd look! LOL
pokey -- Beck, is your right foot/leg stronger?
steelydon -- my left arm and left leg are my strongest, its why i have a left foot gas pedal
pokey -- LOL tish.
beckdildal -- some afos they make have a hinge in them. i've always used ones that are rigid myself.
steelydon -- i have a steering wheel knob but i hardly ever use it
gypsy -- {welcome gypsy}
mytishtash -- beck is my witness to this!
froglady -- That is great you could fix your brace Steely. I have to pay to get mine fixed and it isn't cheap
pokey -- My afo is rigid also.
froglady -- WB Gypsy
pokey -- Welcome back gypsy.
mytishtash -- my sons afo's have hinges on the ankles. he gets around very well
beckdildal -- pokey, the quads in my right leg are, but the muscles that raise my feet are about the same
mytishtash -- wb gypsy
steelydon -- yes beck thanks, my former sheet metal experience
froglady -- My braces have hinges as well
steelydon -- ....and froglady
steelydon -- hinges are new to me
pokey -- I can still raise my right foot, but not the left.
beckdildal -- linda, you always seem to need the bare minimum of clothing and shoes. me on the other hand...i layer.
mytishtash -- beck - that nearly sounds risque!!! but, u r right - the less the better for me
pokey -- Beck, froggie has to layer and I am like tish. LOL
beckdildal -- they gave me the option of getting the hinges last ime i got new afos, but because i'm used to the other i decided not to get hinges.
froglady -- Steely, I think those steering wheel knobs used to be called suicide knobs. lol
mytishtash -- yay!! im not alone!!! LOL
pokey -- How is the weather in your country, gypsy?
mytishtash -- neckerknobs....
froglady -- lol Mytish, that is the best one yet
steelydon -- i agree froglady, lol, i can't wear a shirt with cuffs, they get caught on it
steelydon -- its good for coming out of uturns is about all
mytishtash -- thats what they're called!!! heard that thru the streetrodder meetings i used to go to.
steelydon -- the old cars had them i hear 'standerd''
froglady -- I used to have one on an old 39 ford coupe. I loved that thing. That was back in the 50's
mytishtash -- ok- the readers will love this -- i "heard" that they are called that - so the male driver can have his arm around his date in the front seat, whilst driving- and sneak a kiss too - hence - "necking" -- neckerknob.
froglady -- Pokey remember the fender skirts on that old ford. lol
beckdildal -- my aunt had one of those steering wheel knobs on her car, but so far i've not used one
steelydon -- i would imagine everybody here drives a truck or something high that you don't have to struggle to get out an up
mytishtash -- froglady- ex and i had 2 39 ford deluxe coupes.
pokey -- LOL tish. That is probably true.
froglady -- right Steely. I have a small Ford Ranger
steelydon -- its why i bought my chevy S10
pokey -- Yes steely, I have a SUV.
steelydon -- HIT the nail right on the head froglady LOL
froglady -- Right Steely. lol
steelydon -- ahhhh everybody, lol
beckdildal -- steely, i have a dodge intrepid. i can't get into trucks very easily becuase i have to step up.
gypsy -- weather has been really werd col;d for several day now hot again
pokey -- Yes, froggie, I do remember the fender skirts. That was a really neat car.
froglady -- Beck the with the little trucks you just back up to the seat and sit down
steelydon -- me niether beck, alot of vans are high my parents was but not their new plymouth is butt level, lol
mytishtash -- i must be the only one here thats perm. in the whchair or pwrchair -- i have a sideramp van.
steelydon -- my S10 is butt level
pokey -- Yes my SUV is the level steely said. lol
steelydon -- lol
froglady -- LOL Pokey
pokey -- Tish, how do you like the van with the sideramp? I see them advertised and they look pretty neat.
steelydon -- yes mytish but you get around, thats what counts
froglady -- Mytish do you not stand up at all?
mytishtash -- pokey- my van is 1995 chrys. town/country -- ramp deploys from underneath the slider door. its great! leaves lots of room inside the van
pokey -- I get in the car and hubby puts my cart on the lift in the back of the car.
mytishtash -- the only thing thats "butt level" are the things i transfer from/to -- LOL --- no, i havent stood up since mid 80's
froglady -- Mytish then you are using your wheel chair as the driver's seat?
mytishtash -- steelydon-- beck can tell u - im very independent and take total care of myself.
pokey -- Froggie, what does Ruby the Dutch call that thing that lifts her from one thing to another?
beckdildal -- it's getting harder for mom to get in and out of my car, though.
froglady -- Pokey she calls it big bertha
mytishtash -- froglady - no- i transfer from pwrchair to drivers seat - its a 6way pwrseat and turns 90degrees - its great
froglady -- Wow, mytish, that is great. You are amazing.
pokey -- Before the SUV I had a little Nissan Sentra and I really liked it, but I got to where I had a very difficult time getting out of it.
beckdildal -- she does steely, i've met mytish in person and she lives in her own apartment.
steelydon -- good mytish, i don't like depending on anybody here, i'm pretty independent
mytishtash -- nooo, im not -- just playing the hand thats dealt.
pokey -- O that is great for you tish.
beckdildal -- froglady, is it a hoyer lift that you are talking about?
froglady -- Guys we have ten minutes left for tonight's chat
mytishtash -- i like my independance. no one to answer to but ME!
froglady -- Yes, Beck, that is it
mytishtash -- type fast!!!
beckdildal -- Just to let you all know we have about 9 minutes left in chat
froglady -- LOL mytish, that's right
mytishtash -- ty pokey
pokey -- Our sister that uses the lift can't stand alone any more either.
mytishtash -- im hoping that tomorrow wont be rainy - i need to get to the dollar store--
froglady -- Mytish, it sounds like your disease has progressed more than most of ours have on the chat tonight
pokey -- You are so funny tish - I don't want to be caught any where near a store for a while. LOL
steelydon -- i bought a pretty blue lift chair 12 yrs ago but i gave it to my mother, in its place sit my steel guitar, i get up well in my room without it
steelydon -- ...it took up to much room in here, lol
froglady -- Well better a steel guitar than a lift chair until you really need it
mytishtash -- froglady - im at the med/severe end of the "fsh stick". LOL
pokey -- Does your Mom have FSH, steely?
froglady -- I have two lift chairs. One for pokey when she comes to visit
gypsy -- night all have a good week might be able to get to chat more often now :o)
steelydon -- yes froglady lol
steelydon -- no pokey
froglady -- I hope so Gypsy. I am so happy for you with your new computer. Have a Happy New Year
mytishtash -- nite gypsy
pokey -- Good night gypsy. I am so happy you have your own computer now. See you next week.
gypsy -- thanks you too froglady
beckdildal -- i made the mistake of trying to go to a movie today. all the tickets were sold out by the time i got there.
steelydon -- i have 4 sisters i'm the oldest, none have it an niether of my parents
froglady -- What were you going t osee Beck?
mytishtash -- oops beck! LOL
pokey -- Have you seen "Chronicles of Narnia" beck?
beckdildal -- froglady, you are so thoughtful:0)
steelydon -- nite gypsy
beckdildal -- pokey, that's the one i was going to see today along with mom
froglady -- Thanks Beck
pokey -- Steely, it is good that none of the rest of your family have this.
froglady -- Pokey I have four of the Chronicles of Narnia anytime you want to borrow them
lysol -- {welcome lysol}
steelydon -- yes pokey thanks i'm glad
pokey -- Five of us have FSH and some nieces and nephews.
beckdildal -- hi lysol:0)
lysol -- 'ello all
froglady -- Hello Lysol: You almost missed the chat. How are you
steelydon -- hi lysol
mytishtash -- hi jason - yer late and chat is counting down in seconds now!!!
pokey -- Hello Lysol. You like to have missed us. Did you have a nice Christmas?
beckdildal -- i was just getting ready to wish everyone a Happy New Year and say goodnight
lysol -- Christmas was nice. Is the door closing?
mytishtash -- see u all next wk -if i can remember to be here!! happy new yr and have a good week all
froglady -- I really, really do wish everyone a Happy and safe New Year and hope to see you all next week
steelydon -- Goodnite all and take care email me anytime>> steelydon1@aol.com
pokey -- I wish you all a Healthy, Happy and Prosperous New Year.
beckdildal -- how did the meeting at the U of W go, regarding the research project.
beckdildal -- Chat is going to close any minute now, lysol