Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  11-03-2007

Topic:  Open Topic

Host: Terry Waite



TerryW: Hello

Salsagirl: Hello!

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

TerryW: sons

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!

TerryW: :)

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: Hi

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

TerryW: k

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 :-)

Salsagirl: :)

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: really?

jameson411: yep

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

jameson411: yes

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

TerryW: good

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

jameson411: ?

Salsagirl: my dad has KD

jameson411: why

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.

jameson411: yes

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: goal

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.

TerryW: whewwwww

TerryW: :)

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.

TerryW: cool

jameson411: i don't like hot weather.

Butch: Roasting---sorry

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

MikeG: yep

jameson411: i'll have to move to Hawaii

jameson411: :-)

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.

jameson411: incred

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

TerryW: LOL

Butch: LOL

jameson411: i prefer chess

TerryW: Eat some Yogurt, get your culture that way

jameson411: any chess players here?

jameson411: lol

jameson411: good one Terry

Salsagirl has left the room.

TerryW: looks like she was booted from the chat room

TerryW: hmmmm

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

TerryW: Kidding

Butch: Hi Kelly. How are you?

TerryW: LOL

jameson411: lol

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.

TerryW: kidding

kellyC_: yeah my granpa used to do that to before he passed away! CRAWL...

DarwynP: //1

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?

jameson411: ;-)

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?

MikeG: yes

TerryW: oh

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.

MikeG: yw

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: LOL

jameson411: lol

TerryW: feeing all the animals

TerryW: Horses

TerryW: cats

TerryW: dogs

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

jameson411: yuck

TerryW: not a pretty site

MikeG: :(

jameson411: hopefully horse...

TerryW: softer than cement though

TerryW: yes

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

kellyC_: //2

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

TerryW: yes

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: 1/2

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.

Butch: lol

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

jameson411: ya

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

TerryW: $699

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

norminstormin: hello

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...