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Kennedy's Disease Chat Transcript 10-17-2009
Topic: Open Forum
Host: Terry Waite
DanT99: Good morning
TerryW: I am still trying to wake up, Califonia
TerryW: I have not been in chat for the past few times,
TerryW: I guess I have to play catch up
TerryW: Dan are you new
DanT99: This is my first joining the chat
TerryW: where are you from?
DanT99: I have read some of the transscrip @KDA
DanT99: I'm in Virginia
TerryW: the transcripts have some good info in them
TerryW: More people should be joining in soon
TerryW: hi Bill
DanT99: How many usually join gthese chats?
billeric: Good morning guys
TerryW: anywhere from 5 to 20
TerryW: we usually get 20 when doctors are chatting as guests
billeric: Hey it's early isn't it Terry?
TerryW: I am Terry, the co-founder of the KDA
TerryW: yes bill
TerryW: I wanted to sleep in and that is rare for me
TerryW: I am usually up early
TerryW: and to bed early
billeric: We are on Calif. time untill daylight savings goes off. Az. doesn't use daylight time.
TerryW: when does the time change back
billeric: Nov. some time.
billeric: Are the horses still treating you o.k. Terry?
TerryW: I am looking into getting a new vehicle
TerryW: my 92 4runner is old and tired
billeric: What kind?
TerryW: A GMC Acadia
TerryW: Lots of room to put a powerchair hoist in the ack so my wheelchair can go inside
TerryW: cars have gotten so exspensive
billeric: Neat vehicle. Are you using your powerchair most of the time?
TerryW: Not as much as I like, no cement here at the house
TerryW: and my 4runner lift on the back of it is getting all wobbly
TerryW: hi gary, lou
loutudor: Good morning!
billeric: I don't have one yet. Probably getting close.
TerryW: I have not been in chat for a while, some KD demons are getting to me
TerryW: dealing with them
gary_kc: Good morning, This is Gary joining from KC. It is overcast this moring this week.
TerryW: I have had a bad advancement of KD on me and its got me way down
gary_kc: Hi Terryw.
billeric: Seems we all go thru some stages where we really get down
TerryW: trying to get through it. Seems like so much to do and I can't get anything accomplished
TerryW: or it feels that way
TerryW: the simplest task wipes me out
billeric: My balance seems to be off for some reason lately
TerryW: my balance is gone, that is the biggest problem
TerryW: when I walk I stagger around, I look drunk
billeric: I don't know if therapy would help our balance issues
DanT99: balance is a problem after i've been standing for a couple minutes
DanT99: i have to be careful not to stagger-- the least mistep and down i go
TerryW: It has become very difficult even to take photos, I cant keep my balance unless I prop myself up against something
gary_kc: I can't stand up at all. :-(
TerryW: sorry gary :(
TerryW: did anyone get their flu shot
DanT99: if you don't mind, how old are you gary?
TerryW: I got the regular season shot
DanT99: getting mine next week
billeric: I got the regular one. Hoping to get the H1N1 as soon as I can
TerryW: Dan, just an FYI with KD, you can't use age as a tool for how you will be with KD. It affects us all differently
gary_kc: I took flu shot this week, but it was not incude N1H1.
TerryW: Some much older than me are doing better
TerryW: we all progress at different paces
TerryW: Has anyone heard of any side effects with the H1N1 shot yet
TerryW: I have not
loutudor: I haven't heard any negative effects
billeric: I notice that my walk is differnt lately. I think the hip-pelvis muscles have gotten weaker.
TerryW: I myself am a bit worried to take it. But that is just my opinion
MikeG: I don't think it's been out long enough to be tested - scares me...
TerryW: me also mike
MikeG: I got the regular yesterday - didn't even have any pain afterwards
loutudor: I've advised my son to get the injectable
MikeG: one thing e DON'T need is the flu!
TerryW: I know the feeling mike
TerryW: ANyone here watch the Dr. OZ show
TerryW: I like it
TerryW: learn a lot
MikeG: the MDA sent me a note yestereday to NOT get the nasal H1N1
MikeG: did anyone else see that?
TerryW: mike why did they say that
billeric: Not me
MikeG: let me see if I can find the link... brb
loutudor: Only the injectable is a dead virus...
TerryW: do a copy of it now and check it out later
MikeG: the shot I got was at Walgreens - complements of the MDA.
MikeG: they said the H1N1 would not be available till mid November... :(
TerryW: Everybody around town here is sick
billeric: I only know one person here who has the H1N1.
loutudor: I just read this morning H1N1 injectable will be available end of Oct for those with chronic illness
MikeG: The MDA says: "The intranasal form (sprayed into the nose) is already available in most parts of the country. However, it's important to know that this variety of the vaccine is not recommeded for those affected by neuromuscular disease since it contains an attenuated (weakened) form of the H1N1 virus."
TerryW: I have friends that are nurses at the hospitals here and I am staying clear of them
billeric: Thanks for the warning Mike.
MikeG: wash your hands often and carry Purell...
DanT99: In Virginia it seems mainly children &young people are getting H1N1,at least what the local news reports
TerryW: I wash my hand probabaly 15 times a day and carry sanitizer in all the cards, anywhere I go I use it after contact with any foreign object such as Pens, shopping carts ect.
TerryW: in all the cars
MikeG: yes, but we should be in the 'at risk' catagory and should get it as soon as it's available.
MikeG: good idea Terry
loutudor: KD is a chronic illness and you can get the vaccine early
TerryW: Dr. Oz show talkked about flu figting foods,,, Garlic, elderberries, sardines, fennel,
TerryW: Boosts up the immune system
MikeG: Garlic - to keep people away from YOU! :D
TerryW: same as sardines
MikeG: how about salmon - I LIKE that...
TerryW: I ate so much spinach as a kid so I would grow up big & strong. Popeye lied to me LOL
MikeG: and elderberry wine...
TerryW: 200 out of 700 students at the local school are out sick here right now
gary_kc: I like enough sleep that keeps me good health condition.
MikeG: they closed some schools over here Terry
gary_kc: Terry, it is so bad about 30 perecent.
TerryW: its going to get worse they say
MikeG: our MDA director's daughter got it - said it was so bad she couldn't even move. Didn't want to do anything but stay in bed.
billeric: Wow, we don't need anything else to disable us.
MikeG: that's the truth!
MikeG: I have 4 more weeks of wearing the boot... :( - can't wait to get it off!
MikeG: it REALLY throws your balance out!!!
billeric: What did you break Mike?
MikeG: two bones in my left foot
billeric: Ouch! nasty fall I'll bet.
MikeG: the usual knee giving out and down you go...
MikeG: I was stepping forward and my left foot folded back toward the knee - broke #3 & #4 metatarsals
cdh17901: Hi, this is Stan. Carla logged in under her ID while I was at the bank and doing shopping. This is the first year I got a flu shot. Have never had the flu in 57 years, nor a flu shot. My Dr. says I should not get the H1N1 vaccine, but is checking further.
billeric: Falling is definetly our worse nightmare. I have fallen twice in the last month but ended up with only bruises and scratches.
MikeG: you're pretty lucky Stan - what's your secret to not getting the flu?
cdh17901: I'm lucky. Never broken a bone.
MikeG: you ARE lucky!
TerryW: Stan lives in a cabin in the alaskan mountains LOL
TerryW: food is flown in
cdh17901: I think it's in the genes. I really don't eat right, nor do I take any of those remedies or vitamins. I've never had the Mumps either, among other things. I actually live in Albion, MI. Grew up in Detroit.
billeric: I take calcium twice a day hoping that if I fall-prevent braking something.
cdh17901: It's my nephew that lives in North Pole, Alaska.
MikeG: must be the genes!
TerryW: I have been out in the sun a lot getting lots of Vitamin D
MikeG: me2 Terry
TerryW: the sun sure helps with sepression
MikeG: and juicing everything I can
TerryW: carrot juics is also good to fight off flu
MikeG: I usually juice a whole pack of carrots a day
cdh17901: I attribute my health to playing in the pole barn. My nephew and I put rear spring perches and shckles on our friends truck last week. Had to pull the bed off to get good access. 5 hours to do the job, without air tools. Not bad for three cripples. I have pictures.
MikeG: with tomatoes, celery, ginger, apples, etc...
TerryW: what is a Pole Barn?
billeric: We envy you cdh
MikeG: really! I can't even change my oil anymore!!!
TerryW: How many KDers does it take to change a lightbulb?
billeric: Me either
MikeG: used to do all sorts of work on my cars but not anymore.
TerryW: None, we have to have someone else do it
loshimo11: I can't even lift the hood.
TerryW: thank ou, I will be here all week, remember to tip your waitress
loutudor: Keep the great sense of humor!
TerryW: I try
TerryW: thats what save me
loshimo11: Having a sense of humor is what keeps me going.
MikeG: good medicine!
MikeG: well, I need to get ready to meet some friends for lunch. I hope everyone stays healthy and doesn't get the flu this season - or EVER. Until next time. Take care.
cdh17901: Answer: It takes 3 KDers to change a light bulb. One to hold the bulb, and the other two to hold him up and steady.
loshimo11: Take care MikeG.
loutudor: Bye and keep laughing...
TerryW: I have to go also, chat with you all again soon.
billeric: Thanks Terry. Catch you later.
cdh17901: Take care everyone. Play safe, stay healthy
billeric: Bye folks
DanT99: y'all have a good day and stay vertical
loshimo11: Take care everyone.