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Kennedy's Disease Chat Transcript 03-3-2007
Topic: Open Forum
Host: Murray Williams
Murf: Morning all
chumar: Good morning just went for a coffee
Murf: Hey chuck
chumar: Hello Murf
Murf: you guys going to the conference?
chumar: still working on passport,incometaxtime here in canada so that comes first
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.
Murf: thats high
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
DarwynP: 4 days one way from here
Murf: 2 from here
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 ???
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
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?
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
craig_h: oh, in Arizona?
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.
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
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?
chumar: Morning Pa
Murf: Morning Paul
PA-PAUL: Hello All
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
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
PA-PAUL: mike from PA is not on here today is he??
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
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 ??????????
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?
fl-don: here in sun city center, they have entertainment aND MIKE AND I TOOK WIVES TO DANCEW
fl-don: we watch
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
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
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
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: 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 #
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??
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
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
craig_h: y'all take care, see ya next time
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?
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: 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
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: tksEND CHAT