Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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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...