Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript  03-3-2007

Topic: Open Forum

Host: Murray Williams


Chat Participants:

Murf
TerryW
chumar
DarwynP
Butch
MICH
fl_don
Craig_h
mikeG
Robazbob
billeric
PA-Paul

BEGIN CHAT

 

DarwynP: Hi

Murf: Morning all

chumar: Good morning just went for a coffee

Murf: Hey chuck

chumar: Hello Murf

Murf: Darwyn

Murf: you guys going to the conference?

chumar: still working on passport,incometaxtime here in canada so that comes first

chumar: ha!

Murf: Get as much as you can!!

chumar: oh yes

chumar: you need any?

DarwynP: Have alot of things going on this year so, just trying to prioritise and confirm if we'll be there or not?

Murf: We'll be in the Golden Nugget this year Las Vegas

Murf: I always need some //2

chumar: ha! Ha! Ha!

Murf: I work holidays around these conferences now but did not in the beginning

DarwynP: Murf, what are the room rates?

Murf: 89 per night Sun through thursday and 20-30 higher on the weekend

DarwynP: Flights are $1400 for 2 of us right now.

chumar: wow

Murf: thats high

chumar: yea

chumar: tell them you gamble?

Murf: west jet fly to Vegas?

chumar: oh i'm sure

DarwynP: I was thinking of booking rooms now and waiting to see if some seat sales go on closer to Nov.

chumar: my friend is going to Phoenix for 400 return

Murf: try travelosity or hotwire

chumar: that from grande pririe ab

Murf: be cheaper to do that then rent a car

DarwynP: I've tried a few all seem to be close in price.

chumar: good idea

Murf: you never know

chumar: how long are you booking ahead?

DarwynP: That was if I booked now

chumar: oh wow

Murf: i'm driving. I got th haul 1 scooter & 3 chairs

chumar: kool

DarwynP: 4 days one way from here

chumar: oh

Murf: 2 from here

chumar: lol

Murf: TJ & I will make a 2 week holiday out of it

chumar: Murf what do you drive beside the scooter

craig_h entered the room.

craig_h: good morning

Murf: LOL It may take us a few extra days doing it that way //2

Murf: Morning Craig

chumar: hi Craig

DarwynP: Chuck, mother made it to see us for a couple days.

Butch entered the room.

Murf: Morning Ron

DarwynP: she was upset to see my progression, but happy to see for herself.

chumar: oh just the scooter //1

Butch: Good morning guys. How are you all doing?

craig_h: hiya butch

Murf: Darwyn - My mother just said the same thing

chumar: Darwyn are you still in the study?/

DarwynP: I think she said she was going to be in Williams lake now.

Butch: Chumar--I tried to talk with you earlier but you didn't respond.

DarwynP: Yes, I go to Betesda on April 9th

Murf: 51 in Houston & sunny for the next few days High of 75 //6

chumar: If my Mother was still aroung we might have finaly had some kind of an relationship

Murf: Thats great Darwyn !!!

Butch: Hey Murf--How is your foot coming along?

chumar: Butch sorry

Murf: Still swollen (ankle) but I can walk on it ok

chumar: Good mornoing Butch

craig_h: so if we all had swollen ankles, we could all walk ok ???

DarwynP: LOL

Butch: Murf--I just had another power chair donated to the KDA. It is used but in good condition. I'll be sending you photos of it.

Murf: Don't know I fell again last week 5 times this year but whos counting.

Butch: It is a Jazzy.

TerryW entered the room.

MICH entered the room.

Butch: It isn't how many times you fall but, how many times you get up. LOL

TerryW: Hi Everyone

Butch: Hi Terry.

TerryW: excuse my typing I am on a laptop

chumar: Hello Terry Hello Mich

Murf: Tj & I will be hauling 1 scooter and 3 chairs to the conference on a trailer

Murf: Morning Terry Mich

TerryW: I will be going to the Home and Garden show in a bit so I have to leave early

fl-don entered the room.

Murf: True Ron True

chumar: Kool

Murf: Morning Don

fl-don: GM ALL

Butch: Murf--what do you intend to do with them?

DarwynP: Hey, the Society for Manitoban's with Disabilities are buying me a mid wheel chair fit to order.  I'll have to pay about $1000 in extras only.  I sure appreciate it.

chumar: Good Morn

billeric entered the room.

Murf: They will be there for any one that wants to use them

Murf: Morning Bill

MikeG entered the room.

billeric: Good Morning guys.

Murf: Moring mike

chumar: Darwyn have you joined the muscular dystrophy association??

MikeG: Good morning Murray

TerryW: Murf did you mention the news about Apache?

chumar: Morning

Murf: no

DarwynP: No, I haven't

Murf: Terry - go ahead

chumar: They have money and chairs for you too use

DarwynP: I see

TerryW: Our chat friend and KD associate Apache passed away 2 weeks ago Sunday night in his sleep

TerryW: after our last chat

chumar: You need to get an application on line then get your DR to sign it

Murf: Theere are rental but we will bring a few extra chairs

craig_h: wow, where was he? how old?

MICH: What a shock about Apache, how old was he?

TerryW: murf, what was his age?

Murf: mid 50's we think

TerryW: Apache was a volunteer on our conference comittes

craig_h: sad news

TerryW: Sad Loss

Murf: He was in Apache Junction

DarwynP: very sad

TerryW: yes

craig_h: oh, in Arizona?

Murf: yes

TerryW: AZ

chumar: Thats not good

craig_h: I think I passed thru there once

chumar: I guess we go anytime

Murf: we'll have a memorial page up when we get some details from his family

TerryW: We have not heard the cause yet

billeric: I hate to hear this about Apache.  I met him about a month ago when he was in Sun City to visit his mom.

chumar: good

DarwynP: that would be great

robazbob entered the room.

chumar: Morning Rob

robazbob: good morning everybody

Murf: Morning Rob

billeric: Hi Rob

Murf: Rob did you know Jerry?

robazbob: no I did not

TerryW: Apache rob

robazbob: did something happen to him?

TerryW: sorry to put a damper on thingsbut I thought you all should know

TerryW: He passed away

Rich entered the room.

TerryW: 2 sundays ago

Murf: Morning Rich

robazbob: that's very sad he will be in my prayers

TerryW: everyones

Rich: good morning to  you all

fl-don: 8 months till las vegas

chumar: Good morn

robazbob: good morning rich

PA-PAUL entered the room.

TerryW: save your change Don

Murf: Yup - what would you all like to see for topic in Las Vegas?

fl-don: //0

chumar: Morning Pa

Murf: Morning Paul

PA-PAUL: Hello All

fl-don: showgirls

Murf: //2 //2

Murf: Got them!

Butch: Murf--I would like to see a topic on how to win in Vegas. LOL

Murf: Don't gamle ... what else?

Murf: //1 //2 //1 //11

fl-don: we are planning to spend the whole week in vagas

Murf: TJ & I are too

Butch: Just attending the conference makes you a winner.

Murf: I have 5 rooms blocked starting Sunday

PA-PAUL: we are not sure we will be able to afford it so we have to wait until closer

Murf: First come first serve

chumar: Murf for me it would be "What works" as meds,exercis, etc

MICH: Would the typical and atypical life of a person with KD and its progression be a possibility?

fl-don: i find research topic most interesting for me

chumar: Like that Mich

Rich: that would be a good subject

Murf: Chuck - Meds; we don't know but I'n trying to get someone for exersise

billeric: Just a quick thought.  I have visited the MDA clinic here in Phoenix.  Not completely thrilled with my visit.  What do you think about a topic of MDA and KDA?  Does this make sense for anybody else?

Murf: Mich Ed has agreed to talk on that

fl-don: MDA has been great to me.  would love to discuss

robazbob: billeric I am a member of mda I think that would be good

Murf: Don we have the Thurday cut out for the reaserchers again

fl-don: great murf

Butch: Bill--do you mean how MDA and the KDA interact with each other.

Murf: Bill - I'm make note of that . maybe we can get someone from the MDA to come.

MICH: Bill, I'd add to MDA and KDA, the ALS/MND(motor neuron disease clinic) that we're technically apart of too with the SMA people

billeric: I guess Butch.  I am not sure what our relationship is.  Or how to use them.

chumar: Ok i give What is MDA?

fl-don: Muscular Dystrophy Assoc

chumar: aah lol

DarwynP: Something on mobility aids, and hygeine aids(bath/Shower etc.) that actually work

Murf: I've got a real good one two

TerryW: Well everyone,  We are headed out to the home & garden show.  See you all again soon.

chumar: brain not working sloooow

fl-don: say hi to susanne

Murf: take care Terry

Butch: So long Terry--stay healthy.

chumar: by Terry

PA-PAUL: a comparison of the MDA clincs everywhere would be great.  My local "WAS" great and now it takes a year in advance to get an appointment and for what ?? They clain just to check my "Progress"

billeric has left the room.

TerryW has left the room.

Murf: John C has agreed to line up two sex therapists

Murf: One female & one Male

craig_h: dang, meant to ask  Terry about the spring loaded milking stoll

craig_h: stool

chumar: females i hope

billeric entered the room.

Butch: I'll take the female you can have the male. LOL

DarwynP: That's right craig, forgot myself.

Murf: Welcome back Bill

PA-PAUL: me tyoo

billeric: Sorry guys_my fault

chumar: o ok

chumar: lol

PA-PAUL: mike from PA is not on here today is he??

PA-PAUL: bye

PA-PAUL has left the room.

Butch: Murf--I think having a representative from the MDA would be a great idea. We may find out what is available to us.

chumar: Anyone here of the Dutesteride study in Saskatoon,Sask??

Murf: Ron - on the list

robazbob: the mda paid for a brace for me and in 5 years will have 5000.00 for a motorized wheel chair

chumar: I went for blood tests yesterday to see if i qualify

Michael17860 entered the room.

Michael17860: Hi All

DarwynP: Haven't heard of it

robazbob: good morning

chumar: Hi Mich

craig_h: is it the same dutesteride trial as NIH?

Butch: Rob--why do you have to wait for 5 years for a chair?

Murf: They have a vey good support system for us

chumar: Not sure Craig

JACK entered the room.

craig_h: I just had my nine month check up with local doctor yesterday

Murf: MDA will only dish out a large sum every 5 yrs

MICH: Medicare might be a good topic too... but maybe too big a topic... disability... powerchairs and scooters... do you know if they now require an MDA doctor to prescribe mobility equipment or did MDA just get them to not be as strick with those with MD?

robazbob: every 5 years they have up to $5000.00 for what you need I got the brace 3-4 years ago  so i would have to wate

Murf: Morning Jack & Mike

JACK: MORNING

fl-don: medicare just bought me a new power chair

DarwynP: Is there a site on the internet about the trial in Saskatoon

JACK: HW IS EVERYONE DOING

chumar: Morning Jack/Mike

chumar: Still kicking here

DarwynP: craig go for my 6 month April 9

robazbob: has anyone checked into ss if so how did it go?

chumar: No i will send you info as i got the address from Terry

craig_h: hope it goes well Darwyn

Murf: Mich - we tried that but most medical insurance is state controlled so it offers different services in different states.... then theres Canada

Murf: I can say that as a Canadian

Butch: SS disability--Use bruce's guideline--It rewally works.

DarwynP: thanks c

chumar: Darwyn please send me your e-mail just incase i don't have it ok?

fl-don: mike and i took the wives dancing last night

Murf: Ron - It's good stuff

Murf: Don ??????????

DarwynP: This email address is being protected from spambots. You need JavaScript enabled to view it.

MICH: FL-DON, did they cover an elevating seat for you chair and did you use a regular doctors prescription or MDA clinic doctor?

fl-don: mda wrote up the need for power chair

fl-don: did nit need elevated seat

chumar: Darwyn i will send you the paper that they sent me

Murf: You're dancing?

DarwynP: Great

fl-don: here in sun city center, they have entertainment aND MIKE AND I TOOK WIVES TO DANCEW

fl-don: we watch

Murf: LOL

Murf: Thats fun too

MikeG: I did actually dance one slow dance with Paula...

fl-don: i do poker, not dancing

fl-don: right, mike does twist

chumar: Is that not the same

MikeG: Great band!  The Diamonds.

fl-don: 50's group

Butch: What else can we schedule for the conference? Most of us are hungry for information about KD and its progression and challenges.

Murf: Cool was Neal there?

MikeG: twist my ankle...

Murf: Ron - it progresses and it has its challenges //1

fl-don: if ya can get irs to discuss tax benefits.  i tried to get irs before but was not sussessful

Rich: Yea, any info that  I can pass on to my doctor will be valuable

Butch: You are soooo Right.

fl-don: depends on how busy office is

MICH: FL-DON, last question, was it a prescription from a regular doctor or MDA doctor to get the chair?

Murf: Taxes might be a good one to clear up

chumar: Question - Is anyones legs feeling better than there arms???

fl-don: prescription from MDA

craig_h: is KDA mainly North America? does like Europe and Asia have something similar?

robazbob: not mine legs are always more problematic

fl-don: maybe a CPA could do the taxc bit

Murf: Chuck - my legs are worse than my arms

billeric: Legs worse Chumar

Murf: Craig - there is a major population in Japan

DarwynP: legs worse

chumar: For me its my legs that are better than my arms

JACK: LEGS AND ARMS BOTH GIVE ME TROUBLE

chumar: interesting

Murf: Craig - this is a disease that 3rd world contries will find hard to uncover.

Michael17860: I think that they are = Its just that we use our legs more

craig_h: Murf, I don't mean the condition, I meant like the association. I guess what I'm getting at, would more of an international scope be of benefit?

Murf: So may not be diagnosed correctly

MikeG: my hands, fingers, toes, legs, and arms give me trouble.

robazbob: does anyone have reflexes left? the doctor beats on me to find them and usaully doesn't

MikeG: balance is a big problem lately

Murf: France and Australia have websites and assoc

chumar: What is that, no none here

billeric: Almost none Rob

DarwynP: i still have good reflex rob

JACK: STILL GOT REFLEXES JUST SLOWER THEN THEY USED TO BE

Murf: France is still going but I think Australia fizzled

Butch: Rob--no reflexesa since I was a teenager.

fl-don: its hard to tell what symptoms are due to KD and which ones are due to age???

DarwynP: walking and balance in the toilet

Murf: robazbob: none for 10 yrs +

Butch: Reflexes--sorry--fingers don't work so good.

Rich: I think Australia has merged with MDA

MICH: It's my legs and arms... but happy when I went back to the ALS/MND clinic after two years of hooky to find nurse cratchit the PT was no longer there and the new PT said save your energy, you can decide whether making it down the hall or swimming is best on certain days.

robazbob: mich ummm juicy fruit lol

JACK: IS ANY ONE GOING TO THE NIH THIS WEEK

Murf: MICH: good advice

Murf: I'm building a endless pool in the back yard this year

DarwynP: nope

Murf: I can't go to public pools and I need exersise

robazbob: would a endless pool be a pond?

chumar: darwyn are you done there?/

DarwynP: not till 2008

DarwynP: october

chumar: oh ok

Murf: robazbob: nope its a small pool you can turn on a current to swim aganst

robazbob: sounds good I would have the getting in and out of the pool problem

Murf: Therapudic and Tax deductable in the US

Murf: You get the lift for you or stairs and sit

Murf: Check this out guys online

robazbob: we should design a lift like a motor stand to put us in the pool and pull us out

MICH: Rob, our local pool here has a basket for hoysting me out of the pool

Murf: ya, just like a bruno lift for your chair but water proof

fl-don: they make a water powered lift chair to assist the disabled.  we have one here in sun city center.  works great

billeric: They have such a device at one of the Sun City pools Rob

Murf: MICH: thats great.....not mine

robazbob: thats awesome I need to find a pool like that the mda in az was very little help

fl-don: where sun city center billeric?

robazbob: thanks bill i will look into it do you have phone # or address?

Murf: These are things you tell MDA about then they tell you if it qualifies for assistance

billeric: Sun City Az. Don.

fl-don: thanks

fl-don: we are in sun city center, tampa fl

chumar: Float face down for a few seconds in the pool they will get you out //0

MICH: FL-Don, are you ever in Arizona?

billeric: Ill call you Rob.  Have your #

DarwynP: lol

Murf: Florida should have a lot of legislation for the disabled and seniors

fl-don: no, was in sun city center in las vegas

robazbob: thanks billirec

Murf: chumar: LOL

fl-don: wuz looking 4 a poker game

Murf: fl-don: talk to TJ

fl-don: fl is good to disabled

Michael17860 has left the room.

Butch: Texas has a great program for the handicapped. Just saving on taxes means alot when we are on a fixed income. Murf--can yoiu elaborate?

Murf: Is everyone doing ok?

chumar: Darwyn are you still working??

Rich: fading

Murf: Ron - promise not to get mad?

Butch: You bet.

DarwynP: Yes,hoping for a while yet.  It is getting harder to get going though.

Murf: Texas is a great state for the average person including handicapped not to pay much income tax

DarwynP: Only good excuse to get out.

Murf: Uncle George just made alamoney payments tax deductable

Butch: What about sales taxes.

chumar: Darwyn it would be good if you could come out to our camp in BC for a few weeks or a month this summer

Butch: Lucky stiff.

Murf: Vechiles you haul your chair in are NO STATE TAX

fl-don: sales tax deduction was extended by congress laste last year

Murf: Interst on houseing is tax deductable

chumar: Darwyn Stress free

doughboy entered the room.

Murf: Pools for medical purposes and all house improvements are Tax deductable

DarwynP: I'm not mobile enough to be camping. If it wasn't for work I probabbly wouldn't get out much.

MikeG: I've got to go - I've been in and out of the house trying to supervise some people working on my driveway resurfacing.  I need to stay on top of them.  Take care everyone and I'll chat with you later.

MikeG has left the room.

Murf: Good afternoon TJ

doughboy: Good morning

fl-don: bye mike

DarwynP: Everyone one else at home is gone all day too.

doughboy: Bite me

fl-don: mikeg's mother passed away last week

Butch: It sure was great to see so many on the chat today. We have learned and shared alot of info today.

Murf: be nice

DarwynP: I don't feel stressed but, I'm sure there is some effect.

doughboy: I'm always nice Murf.

fl-don: she had been sick for years

Murf: Don - sorry Mike

chumar: Darwyn i feel alot better physicaly when i am out there.

DarwynP: That's good to hear.

Murf: CHuck thats the trick. We have to "feel better"

JoeK entered the room.

doughboy: I think the stress is because of our fear of when, what will happen s!  The unknown factor

DarwynP: Anything that feels better is always a bonus.

Murf: Hey Joe

JACK: GOOD BYE ALL. HAVE TO GO WASH MY TRUCK

JACK has left the room.

Butch: Murf--How is Weezies step daughter doing?

doughboy: Not 2 good

chumar: I dom't know if its the water the sunshine, or the quiet

Murf: TJ - let us know

chumar: yes

robazbob: dough you hit the nail on the head I could feel great and go do something and the worry and nervousness wear me down

doughboy: She had her 7th surgery yesterday, They started putting in plates, pins & screws.  Said it will be going on for another 6 months, Butch

doughboy: Robazbob,

craig_h: y'all take care, see ya next time

chumar: Bye

Butch: Sorry to hear shes still in so much pain and suffering.

doughboy: I guarantee you that when my pain starts hurting me, I start getting anxiety, which is stress

Butch: So long craig--dstay healthy

doughboy: Thanks Butch, you know Weasers my sister

fl-don: heading out to a ballgame so u all take care, bye

fl-don has left the room.

Murf: Then I have to go roll you around in the gravel TJ

Murf: you always feel better after that

Butch: Right TJ--She is one great individual.

craig_h has left the room.

doughboy: Yeah, then I have to give Murf a call to rescue me when I start feeling depressed

doughboy: What bout me Butch! LOL

Murf: I bought the steaks yesterday TJ

doughboy: What steaks?

Butch: You have a great sister. What more do you want? LOL LOL

Murf: For dinner!!

doughboy: Hey I joined Nutri system, going to try & lose some weight

Murf: Good one Ron - She is

DarwynP: Well, i'm going to run, till next time Bye!

Murf: DarwynP: Take care

doughboy: Yeah she's flying in from Canada today

DarwynP has left the room.

Murf: She had to come back to warm up?

Murf: LOL

robazbob: I am off as well bye for now thanks for the insperation I always feel great after these  chats

Murf: Sorry guys

doughboy: Can u make the steaks pepper crusted like Texas Land & Cattle can, Murf?

Butch: I must be going for now--Hope you all stay healthy till next we chat. BYE!!!

Murf: robazbob: Take care....don't fall

Butch has left the room.

doughboy: Bye Butche

Murf: doughboy: yup better

JoeK has left the room.

robazbob: try my best thank you

robazbob has left the room.

billeric: Good chat guys.  Talk to you in a couple weeks.

MICH: I've found that I seem to be the only KDer the MDA doctor has seen in years, does anyone else find themselves  the only one in there state or province?

doughboy: bye roba

billeric has left the room.

Murf: wow.....was it something I said?

doughboy: Murf you ran everyone off, did you take a bath lastnight?

Murf: I was for a long time

Murf: Thats what it was!!!!!!!

doughboy: Murf who is robazbob?

Murf: MICH: you need to put out a call. I bet there are more in Utah

doughboy: Do I know Chumar and Rich?

MICH: Great to talk to youall...off to take my grandson to a show or something

Murf: Don't know maybe not

doughboy: If not, hello guys, I'm from Texas, the one they call THE GREAT T J!

Murf: MICH: take care

Murf: I think TJ scared everyone off

doughboy: Maybe so!

Murf: Chuck your doing ok?

doughboy: Whatcha doing today Murf

Murf: Cold?

Murf: Waiting for you to give me an estimate on landscaping

MICH has left the room.

doughboy: Come pick me up & I'll dsign your landscaping, I've been up since 2 A M & too tired 2 drive

Murf: Have a snooze and come down tomorrow

doughboy: Felt like I couldn't get my breath & was choking all night

Murf: Get your machine checked out

doughboy: Went & bought some Mucinix this morning, hope it helps

Murf: whats that?

doughboy: Yeah something ain't right

Murf: did you change your filter?

doughboy: Mucinix breaks up mucas and phelm and gets it out of your chest, really works for me

Murf: ok

doughboy: Hell no I did change my filter, last time was 4 months ago

Murf: well maybe....just maybe it could be plugged. I'd check that out //1

chumar: Sorry Murf i am doing fine and you?

Murf: I'm doing ok

doughboy: All right well I'm going to bed Murf, I'll see ya later, I'll call you.  Bye all

Murf: the Cold affected me greatly

doughboy has left the room.

chumar: Thats a big problem

Murf: I had to move to the warmth and got lucky

Murf: Do you have family close to help you?

chumar: Oh yes

chumar: Murf Are you still employed

Murf: That helps big time. My parents come down to escape the winter.

Murf: Yes but I don't know hor long I can go

Murf: May be another 2 yrs I hope

chumar: Yea not a bad idea i am thinking about Phoenix myself

Murf: Houston has a lot of humidity and that is a killer too

Murf: Phoenix is nice and dry

chumar: I have a gold mine / placer claimin BC you are wellcome to come

Murf: 15 yrs ago I'd be on the road already

Murf: I love that sruff

Murf: and BC

Murf: I spent a lot of time fiahing all over there

chumar: Well anytime you are wellcome to live out there if you want, great water,lots of sunshine

Murf: And you have a standing invitation any time here in Houston

chumar: well thank you might just do that

Murf: Any time your welcome

Murf: I should get going

chumar: you too let me know we have alot of room out there and in Grande Prairie also

chumar: ok take care

Murf: You take care chuck

Murf: tks

END CHAT