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Kennedy's Disease Chat Transcript 11-03-2007
Topic: Open Topic
Host: Terry Waite
TerryW: people should be showing up soon
Salsagirl: I'm a bit early for the chat
Salsagirl: I've just found out i'm a carrier
TerryW: not really, a bunch of us get hee early usually
TerryW: Glad you could make it
TerryW: where are you from
TerryW: do you have any sone with KD
Salsagirl: I'm from the UK
TerryW: oh, ok
Salsagirl: Not got any sons, I'm only 25. My dad got diagnosed with KD a couple of months ago
TerryW: it is late afternoon there right?
Salsagirl: it's about 2:30pm
Salsagirl: I was in california last week so im probably still on PST :)
TerryW: Our KDA conference starts next week in Las Vegas
Chuck entered the room.
TerryW: you missed the fires here?
Salsagirl: My fiancé were in Vegas about 10 days ago, if the dates had matched we'd have come
TerryW: Hi Chuck
TerryW: I wish you could have
Salsagirl: we had to change our itinarary as we were due to be in LA and San Diego when the fires happened. We went to Palm Springs instead which was lovely!
Chuck: Hi Terry - guess you are getting packed. I was at NIH last week and sent my best to all by Angela and Alison
Salsagirl: This website has been an excellent resource for me as there isn't a lot of information on KD available over here
TerryW: I will be packing tomorrow
TerryW: I am glad that we could help you Salsagirl
DarwynP entered the room.
TerryW: Hey Darwyn
Salsagirl: Hello all, I'm new here
DarwynP: welome salsa
Salsagirl: thank you
Salsagirl: are there any other KD carriers in here?
TerryW: My muscles are pretty much shot for today, Yesterday we woke to no water from the well and the tank was dry, seems one of our horses broke a pipe out in the pasture the night before.
TerryW: I had to did it out and repair it myself
Butch entered the room.
TerryW: the water is back online now
Butch: Hi guys--How are you doing today>
DarwynP: Good that you got water. Bad the work out!
jameson411 entered the room.
TerryW: SalsaGirl, we don't get that many carriers in these chats, I can schedule a Carrier only chat for you and the send out a notice if you wish and maybe some others will join in
TerryW: hi butch
Butch: Hi Anna Lea--It was great to talk with you last week.
fl-don entered the room.
jameson411: morning all
TerryW: Salsagirl, I will put a carrier only chat on the schedule for one of the upcoming chats
TerryW: Hi Don
fl-don: GM ALL
Butch: Salsagirl--stay on the chat--you will learn more about Kennedys.
Salsagirl: thanks terry that sounds good
DarwynP: I'm Having a rough day today also, couldn't get into my lounge chair. Wife still sleeping so using lap top in my wheelchair.
jameson411: hi fl-don
TerryW: Yes stay
Chuck: Hey Butch - I do believe we enjoyed twice as much as you could have. It was just great hearing from you.
fl-don: judy & i are in las vegas
TerryW: Sorry Darwyn
Salsagirl: We don't know very much about KD at the moment
TerryW: Don, how is the weather
Salsagirl: my dad isn't seeing a doctor or on any medication... i wonder if he should be
DarwynP: This is the place to be for KD info.
fl-don: 80 in day, 60 at night, sunny
Butch: Lucky you Don--at least I hope it is LUCKY. LOL
jameson411: i don't think there is any medication for KD right now
TerryW: Corrrect Jameson
Salsagirl: His doctor was really useless. They told him he had MND for the first 6 months
TerryW: only medication to help with some of the symptoms
DarwynP: Fly to Vegas tomorrow night
Salsagirl: which symptoms?
TerryW: like pain in muscles, twitching ect.
jameson411: most doctors have no idea. I refer them to this site to learn :-)
MikeG entered the room.
TerryW: Hi Mike
TerryW: See Salsa girl, here they all come
MikeG: Morning from sunny Florida!
Salsagirl: they certainly do!
MikeG: Hi Terry
Butch: Hi Mike, good to hear from you.
jameson411: interesting thing happened to me a few weeks ago. I got Bells-palsy
MikeG: I hope to put an eyeball on you next week
Salsagirl: The doctors then managed to lose the first blood test that they did for my dad to see if he had KD. It took 4 months for them to admit that and do another one!
TerryW: wow, that is strange
TerryW: It can go away also
jameson411: what are the chances
fl-don: we are staying at the marriott's grand chateau near the aladdin
DarwynP: It is a cold one here today. 25 F
jameson411: it is already getting better
TerryW: I knew people that had it for a while and then it went away
DarwynP: looking forward to the 70's
jameson411: it is a mild case. No sever drooping
Butch: I have a terrable cold--alot of pflem and muccus. Not good. coughing alot.
jameson411: I think it was a cold that caused the palsy
TerryW: So Salsagirl, do you have any specific questions
Salsagirl: Just what should you do after diagnosis? do you see more doctors? or a physical therapist? We dont really know what to do now
Chuck: Salsagirl, where are you from? Guess we missed that.
TerryW: One of the things I wanted to ask everyone is what they do to help when they get the flu
DarwynP: Keep a eye on your blood pressure Jameson.
Salsagirl: UK chuck
Salsagirl: my dad has KD
Salsagirl: and im a carrier
DarwynP: Most of us have high blood pressure and that can lead to troubles
Salsagirl: what sort of troubles?
TerryW: Salsa, as a carrier I don't think that you would need a physical therapist sine carriers only show very mild symptoms
Salsagirl: my dad is on blood pressure pills
jameson411: ok. Currently i have the bp of an athlete (even though i haven't exersiced in 2 years)
Salsagirl: oh no i meant for my dad terry
TerryW: oh, ok
DarwynP: I think palsey is a form of a mild stroke, I could be out to lunch on that though!
Salsagirl: i see a physical therapist as i have problems with my walking anyway
Chuck: I have a granddaughter who is a carrier. She is in Puerto Rica and wants to get involved with Kennedy's Org. when she returns, however, she got pregnant - I wonder about her time......
jameson411: Yes, that is one cause
TerryW: Light exercise and stretching, we have a section on the website that has some exercise info
jameson411: but it wasn't what cause mine
jameson411: they ruled that out early
DarwynP: that is good
Butch: Anna Lea--How is Charles today? hope he is doing fine.
Salsagirl: Chuck, does your granddaughter know if her baby is KD free?
Salsagirl: ive seen a gene doctor about having children and it wasnt very positive...
TerryW: Salsa , it is under Discussion/support GENERAL TIPS
TerryW: Salsa, its a 50/50 chance on males
Chuck: Sorry to say the answer is No.
jameson411: I would think there is no point in testing a baby or child. With the advances coming, in 20 years this may be a treatable disease.
Salsagirl: That would be brilliant if it was
Butch: Anna Lea--what is going on?
Chuck: Our granddaughter is convinced the cure is not toooo far off.
jameson411: and that is the soonest someone who is a now child would start to show symptoms
TerryW: But if the KDA can help it our foal is to have a 0/0 chance in the future
TerryW: with research
fl-don: pbs nova, had a great series on epigenitics. very very interesting
Chuck: Butch, what do you mean what is going on?
Butch: You said the answer is no. What is wrong and is Chuck OK.
TerryW: what happened
Chuck: Oh, I replied to our granddaughter not being tested. I am sorry Charlie is doing ok today. You better get help with the cold.
Butch: Terry--When will you leave for Vegas? Hope you have a great time at the conference. I will really miss being with you all.
TerryW: WHen I get the flu nad my throat swells up and I choke constantly
TerryW: I leave monday Morning, driving
DarwynP: I haven't had a flue or cold since I've been diag.
Salsagirl: is it advisable to get a flu jab in the winter then?
jameson411: Remember Salsa, any male children you have won't show symptoms for 30-50 years from now. Long way off. And the advances in understanding KD are huge just in the last few years.
TerryW: I got mine 3 weeks ago
TerryW: Yes Jameson
DarwynP: Most docs recomend one
jameson411: I got a flu shot
Butch: I got mine about 3 weeks ago too. Maybe I waited too long.
jameson411: i'm a teacher, high risk for that kind of thing
Salsagirl: thats interesting to know, ill pass the info along
TerryW: that is a good time butch
DarwynP: Haven't got mine yet. I have an appointment later this month for one.
TerryW: It is good that I got mine 3 weeks ago sine in vegas will be in contact with lots of people from around the world
MikeG: Terry, how long a drive do you have?
DarwynP: I thought of that but couldn't get in.
TerryW: 6.5 hrs
TerryW: add eating, 7.5
Dart! entered the room.
TerryW: Hi Dart
jameson411: hey Dart
jameson411: I drove across the country this summer
Butch: Terry--Once again I want to thank you and Susanne for starting the KDA. It is amazing just how it has grown from your humble beginning in 2000. Thanks!!!!!
Dart!: G'Morning All!
MikeG: wow! that's worse than my flight!
jameson411: 4 week adventure
TerryW: Murray and TJ are on the road right now to Vegas
TerryW: Road trip
MikeG: at least you won't have jet-lag to deal with
TerryW: you are welcome Butch
DarwynP: My flight is almost 4 hrs.
Salsagirl: i was in Vegas about 10 days ago, the weather was amazing!
jameson411: do you have the conference in Vegas every year, or do you move it around?
TerryW: I will visit my mother while in Vegas, she lives there
DarwynP: I hope thw weather is the same
Salsagirl: it was roasting hot
Salsagirl: we saw Elton JOhn in concert!
Butch: Roadsting is good for KDA people.
jameson411: i don't like hot weather.
Salsagirl: its nice and cool inside though everywhere is air conditioned
MikeG: I don't like cold weather.
jameson411: but then again, cold weather robs me of dexterity
jameson411: i'll have to move to Hawaii
TerryW: me also Jameson
DarwynP: I find high 80's hard to breathe
fl-don: phantom of the opera is here at the venetian
Salsagirl: We took a gondala ride at the venetian
jameson411: took my wife to phantom in NY.
Salsagirl: its really weird as when you're inside it's like you're outside
DarwynP: I tried to get tickets to 'KA" circ de sole, but no wheelchair left
Butch: Don--when did you get away from the gaming tables to go see a show?
fl-don: wife makes me go 2 culture. i will hit the poker tables soon and often
jameson411: i prefer chess
TerryW: Eat some Yogurt, get your culture that way
jameson411: any chess players here?
jameson411: good one Terry
Salsagirl has left the room.
TerryW: looks like she was booted from the chat room
jameson411: i don't think we scared her off
jameson411: more likely bored her :-)
jameson411: has anyone here ever tried to buy a "universal design" house
jameson411: aka handicap accesable
TerryW: I need to schedule an upcoming chat just for carriers
Butch: What's that?
jameson411: home designed for wheelchaired people
jameson411: things like outlets are waist high, counters are lower, open shower... etc
jameson411: big doorways, no stairs.
Butch: Every house I go to is handicapped accessible. If not I don't go. LOL!! We have our challenges don't we?
DarwynP: No, haven't heard of being built in my town. Imagine you design and build your own though?
jameson411: The house we currently live in is very small. Once i'm in a chair, we'll have to move.
kellyC_ entered the room.
jameson411: I heard that type of house flies off the market
jameson411: hi kelly!
kellyC_: good morning
TerryW: If I go to a friends house and they have stairs only out fron to get into their house I stand at the base of them and throw rock at the door until they answer
Butch: Hi Kelly. How are you?
kellyC_: good! ty butch
DarwynP: I was lucky the condo apartment I'm in, has wide doorways already and bathroom is big enough for my chair.
jameson411: little rocks i hope
TerryW: Actually I crawl up the steps
TerryW: if no hand rail is there
Butch: Terry really rocks.
kellyC_: yeah my granpa used to do that to before he passed away! CRAWL...
Chuck: How do you get up from crawling?????? I can't seem to do that.
TerryW: it is getting very hard
Chuck: Perhaps age has something to do with it - 80???
jameson411: i'm learning that dignity parameters has to be redefined with this disease.
TerryW: easier to get up when I have more strength in morning but gets really bad in afternoon
DarwynP: Hey Kelly I think I read that you are in P.a. now. My dad is in a home there. He has Alsheymers.
TerryW: My neighbor friend is 83 and both now get around about the same
kellyC_: is that rite Darwyn? yes i live in PA now
jameson411: Anyone have issues with throat cramps?
Butch: Where in PA.
kellyC_: sask prince albert
TerryW: Jameson yes when I yawn sometimes
DarwynP: Prince Albert Saskatchewan
DarwynP: I try to get there at least once a year.
jameson411: I talk for a living (teacher) and a few days ago my throat started to twich and get crampy
kellyC_: oh ok....
TerryW: sometimes those cramps in the throat area seem like they almost want to cut off the air
MikeG: I used to have throat cramps before taking Neurontin or Gabapentin.
TerryW: never does though
DarwynP: My mother lives in Kinistino
jameson411: tell me about those Mike
jameson411: i have frequent cramps
kellyC_: Really.... gosh ur orinally from sask then hey?
MikeG: I take 2 300mg caps at night - helps me sleep too!
DarwynP: Born in Kinistino, left when I was 3
kellyC_: ic... ic.....
jameson411: too cold for ya Darwyn?
MikeG: I haven't had the dry drowning experience since I've been taking it.
kellyC_: so darwyn... are u still in the NIH trial?
kellyC_: I had to drop out myself
DarwynP: Yes, as soon as get out I can feel everything tighten up and have a hard time moving about
jameson411: i'll ask my nuerologist about it. any negative side effect?
MikeG: Gabapentin is the generic for Neurontin.
MikeG: No - just makes you sleepy.
TerryW: How come Kelly
DarwynP: They took me out of the trial, due to my breathing scare. I was on the drug, but they wanted to be safe instead of sorry as far as the drug goes.
jameson411: do you need a prescription?
kellyC_: oh travelling issues.. with the passport etc.... My past caught up with me terry
MikeG: np though - it's very common
DarwynP: Have you looked into the trial in saskatoon kelly?
kellyC_: no i have not Darwyn
MikeG: your neurologist shouldn't hesitate writing you a script for it.
fl-don: i assume we will hear about research updates at conference?
jameson411: ty mike
DarwynP: Chumar (chuck) said there was a dutastride trial there also.
jameson411: any of you do physical therapy?
kellyC_: yes there is i heard that to..... there is 2 guys with KD in that study..
TerryW: Yes Jameson, Chores on the 5 acres
DarwynP: Yes, beer to mouth. lol
TerryW: feeing all the animals
MikeG: got your flu shots yet, Terry?
jameson411: you amaze me terry
TerryW: cleaning stalls
TerryW: I am about at my end
jameson411: i struggle with a walk in the park
TerryW: it is getting almost impossible, I keep falling in Manuer
TerryW: not a pretty site
jameson411: hopefully horse...
TerryW: softer than cement though
kellyC_: I used to Corral clean for this compant in saskatoon... that was a stinky job lol
DarwynP: Seriously though, i am too weak to do much so just try stretching and moving as much as possible
TerryW: I need to find a good stable boy
TerryW: to do chores around here
Butch: Givsw youthe incentive to get upo though doesn't it Terry. LOL
TerryW: hard to find a good one because houses are not real close to each other here
kellyC_: so how do u like the northeren part of Cali...Terry as appose to Simi Valley... its alot quieter i suppose hey?
Butch: Maybr you ought to look for a stable girl>>>>
TerryW: Yesterday I had to replace a broken PVC ater line from the well, I got so friustrated because I could not cut the PVC pipe
TerryW: It took me 1.2 hr
TerryW: my hands are shot today
TerryW: arms also
TerryW: Yes Kelly, almost to quiet, In the country no one can hear you scream
TerryW: yell for help
DarwynP: Yes, it doesn't take much to get to the point where just holding the saw is a challenge.
Butch: We must work within our limitations....It will always take us longer to do a relatively easy job.
TerryW: I yell at myself often
TerryW: My dogs hear me
Butch: Teach the dogs to cut pipe.
DarwynP: If I yell no one would here me as the words won't come
DarwynP: Have to be relaxed
MikeG: I had the same problem with cutting just 1 1/2 inch pipe Terry - better to use a saw.
TerryW: When I cant do something myself I get so frustrated that I yell at myself when I am alone, I then ask god why is he playing this cruel trick on me
MikeG: just need to find other ways to do things - or get someone else.
Dart!: You carry a cell phone when you are out and about, don't you, Terry? And perhaps a referee type whistle?
jameson411: it can be hard to count blessings when you can't do simple tasks anymore
TerryW: No cell reception on my property (dead Zone)
Butch: Don't think of what you can't do but be thankful for what you can do,
TerryW: I am looking into a long range house wireless goes 4-5 miles
MikeG: that's bad - no carriers at all?
DarwynP: You got that right Butch
TerryW: nope mike
norminstormin entered the room.
MikeG: $700 is not bad especially if you need it like you do.
kellyC_: well you take care...alll of you I have to now see ya next chat session...
Butch: Hi Norm
kellyC_ has left the room.
jameson411: bye kelly
MikeG: yep - I need to go too. See some of you next week! Take care.
MikeG has left the room.
Chuck: Must go. Hope you all have a good meeting, a fun time and a safe journey to and from.....
Butch: So long Mike
DarwynP: There is cheaper ones out there. I just can't think of the brand name right now. I might even have one. I was a telephone tech. remember.
Butch: Bye Anna Lea.
Chuck has left the room.
TerryW: I have to go and take my dog to the vet, until next time...END CHAT