Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  09-20-2008

Topic:  Open Forum

Host: Murray Williams


BEGIN CHAT


murf: Morning
murf: This is the mens chat this morning
murf: Morning Screen
murf: How are you?
murf: 74 in Houston today and going to 88
murf: There are no storms in the Atlantic (YAHOO) and life is great!
murf: Hey Ron
murf: I thought I was alone on the planet
Ron: Hi Murf. Glad to hear that the storm passed east of you.
Ron: Did you have any wind dmage?
murf: only by a few miles but thats all that counts
murf: I was on the left (dry) side
Ron: Good.
Ron: Did you loose electricity?
murf: Just a few trees and a clean up; lots of nieghbors lost schingles
murf: Only for a few minutes 6 time but I had a new generator here
Ron: We had wind and rain but, it wasn't real bad.
murf: From Ike?
Ron: Hi Dart--How are you?
murf: Hey Dart
Dart!: All is OK here, and warm greeting to everyone!
murf: Hey Gary
murf: Ron from Ike?
Ron: Hi Poohsdaddy and Gary.
Gary_KC: Good morning. This is Gary Uchiyama joining from Kansas City. It is a nice sunny day in here.
Ron: Yes.
murf: Sunny and a great day ahead here
murf: WOW that was a big storm
Ron: Gary-you guys really had alot of rain.
murf: I will not be sticking around for any Cat 2 again
poohsdaddy: Good Morning. I missed out last time, because I had the wrong week.
Rick UK.: Hi guys.
murf: Hey pooh & rick
Ron: Hi Rick--Hi Trailblazer.
loshimo11: Good morning everyone. This is Luis Shimomura from San Francisco.
Gary_KC: Ron, Yes, we had lots of rain last week.
murf: tj.
TRAILBLAZER: good morning everyone, you too murf
poohsdaddy: Sunny and warm in WI today
murf: There is nothing in the Atlantic to get us!!!!! Yahoo
murf: It's a great day to be alive!!!!!!!!!!!!
TRAILBLAZER: Hey Ron how are you doing?
Ron: Do any of you guys have problems with your KD--better or worse lately?
murf: Any one got somethng on their mind they want to talk about?
TRAILBLAZER: Mine is worse
murf: Yup me too but still alive
Ron: In what way.
Dart!: How WORSE?
TRAILBLAZER: I have not had any problems on my right side but now my right leg and arm are experiencing symtoms
poohsdaddy: Yes--nearly fell down getting into the car after physical therapy, but pulled myself up and in anyway.
TRAILBLAZER: Hurting soreness and major tirdness and my neck is getting so sore it's making my spine hurt, I can not at times hold my head up!
murf: TJ I (like your whole family) think if you loose a little wieght you might notice an improvement
Ron: Ever since I went off the drug used in the clinical trial--I have been ALOT weaker.
TRAILBLAZER: That's the way to make me feel better, thanks murf
murf: TJ only stating a fact
murf: Me too Ron
Rick UK.: I have been having problems urinating. I'm undergoing some tests at the moment.
Gary_KC: It has been 5 years since I used a wheelchair. I have lost lots of leg and arm muscle, and getting weaker and weaker.
murf: Rick UK. How are you my facebook friend?
poohsdaddy: The pain in my legs and lower back seems worse on the rainy days lately. How about you??
Rick UK.: Just been on it today. Not done much with it, but will try to sort it out.
Ron: Isn't it amazing how we all have the same disease but experience different difficulties on a daily basis.
murf: You guys know we can now go to our doctors and ask to be put on Avadart (only under docs supervision)
Rick UK.: Have been busy sorting out housing situation etc.
murf: Ron We need to stay positive and keep humor in our lives!!!!!!!!!!
murf: Rick UK. how is that going?
TRAILBLAZER: When it proves to helpful maybe I will but I take enough pills now and the cost is too much already. My heart Dr. just prescribed nitro tablets for me. Another cost!!
Gary_KC: Ron, I agree with you. You have a good suggestion.
Ron: TJ--sorry to her that you are having such a tough time of it lately.
Rick UK.: Have been given a property by Local Authority, now have to get Social Services to spend money and adapt it. It will happen, but at a snails pace, lol.
TRAILBLAZER: Thanks, Ron
murf: Rick UK. You must have the same goernment as we do lol
Ron: Rick--it always moves at government pace. lol
Gary_KC: Murf, I wonder if the Avadart is still under human trial in NIH?
Rick UK.: I know, backwards! :p
murf: Trial will wind down ... last guys throgh in November and the we have a +/- 6 month (figure it out) time
poohsdaddy: Yes--I go back to NIH in two weeks; and my number is 41. There should be about 10 more to complete the clinic.
murf: We will hear from all the NIH doctors at the conference they will all be there
Rick UK.: I have been taking Amantadine to help with my fatigue, but it's not been very successful.
TRAILBLAZER: So did anyone in the study have a major improvement
murf: no doctor ... don't know
murf: Hey terry
terryW: Hi, Just woke up
poohsdaddy: I have felt better with the NIH pills than before; and continue to exercise almost daily.
Rick UK.: Hi terry.
terryW: hi to everyone
TRAILBLAZER: Did it make you feel less tired?
murf: This pill was to stop the DHT from invading the nerve cell and killing it. it was not to make us run faster
murf: The trial was not for a cure
terryW: I am having real issues with my bi-pap, I cant seem to sleep with it after it ramps up to full pressure
terryW: anyone else have this issue
Rick UK.: no good for the Para Olympics then? :}
murf: sorry Rick :o
Ron: Hi Terry--glad to hear from you.
terryW: U 2
murf: terryW Yup I just threw my CPAP out for the same reason
Rick UK.: Pill not to make run faser.
murf: I wish
poohsdaddy: My neurologist gave me samples of Provigil to help with the tiredness; but insurance wouldn't cover it.
murf: :-)
TRAILBLAZER: I didn't think the trial was a cure but I would expect the Dr.'s to least tell you or you to tell the Dr.'s whether or not you felt improvement. Just asking questions because I don't know. I thought that would be okay!
Rick UK.: My sense of humour. It's late afternoon here.
murf: poohsdaddy I usee that too and seems to help when I need to drive in the morning
murf: Hey Darwyn
murf: TRAILBLAZER When they know they will tell us
Darwyn: hi
murf: How are you? Must be fall in Winterpeg
terryW: Murf I have tried 2 masks but the pressure gets so high that the full face mask starts blowing out air on the sides no matter how tight I make the mask. The nasan mask works fine until the pressure rises to full and then it blows out my mouth even though I wear the chin strap. I am frustrated
terryW: Nasal
Darwyn: just
poohsdaddy: He then gave me a prescription for Ritalin, but it made me more jittery. So, he switched me to Zolpidem at night to help me sleep better.
TRAILBLAZER: Terry, maybe the have the pap ramped too high for you! My bi-pap only ramps as much as it needs too automatically. I like bi-pap much better than c-pap
Rick UK.: Is there not a way to regulate the presure?
murf: terryW Same here I settled for the nasal mask and the problem is with my machine. we need to go in and get them tuned up
terryW: I am checking, I am waiting for a call back
murf: Rick UK. Must be set by the doctor
terryW: I think I need the Max pressure adjusted to be lower
murf: you can only set the ramp
terryW: correct Murf
poohsdaddy: Was there supposed to be a guest this morning?
terryW: nope pooh
Rick UK.: Ok. But is it not set up for each individual.
murf: murf I needed mine adjusted twice
terryW: will you settle for me :)
Ron: Yes!!It is Murf. LOL
murf: huh
murf: 8)
terryW: was answering pooh
TRAILBLAZER: I thought you have not been using yours Murf
poohsdaddy: You bet!!! It helps to hear from each of you!!!
murf: not for months
Ron: Murf--our gurest speaker.
Ron: GUEST
murf: say what?
murf: ;)
terryW: My machine is leased and they keep track of hours used and if you don't use it they will take it away
Ron: I wonder just what winter will bring. I know that I have gotten alot weaker lately.
TRAILBLAZER: Terry , you mean they don't buy yours for you?
terryW: If you use it regularly in one year they will buy it for you
murf: terryW My insurance pays for mine and I own it after about a year.
Rick UK.: Has anyone had problems with their bladder or prostate? I'm undergoing tests, but don't know if its the KD, drugs or something else at the moment.
terryW: it is $6,800
Ron: WOW
terryW: It i9s the best on the market supposedly
TRAILBLAZER: Yeah I just got a new bi-pap had my other for 6 years
murf: Mine was expensive too but I'm on my 3rd machine
murf: You guys can trade them in
terryW: THis new one is mostly used for andvanced ALS patients
TRAILBLAZER: mine was 6,000 as well
murf: they are smaller and more efficiant now
terryW: yes
TRAILBLAZER: Easier to fill with water
terryW: Darwyn, how have you been doing
murf: I use mine for about 2 years
terryW: any better
Ron: Rick--no bladder problems for me.
Darwyn: Terry, holding 4 now
terryW: hang in there
TRAILBLAZER: Well you gentlemen have a wonderful day and God bless. Gotta run have some guys coming over to clean the debris from storm out of my yard
Darwyn: can't talk now
poohsdaddy: That's a lot, but my friend just started Humera (as advertised) at $5,000 every two weeks.
Darwyn: just type
terryW: bye TJ
murf: We shouldn't have prostrate problems because of the way we handle DHT (Ithink) KD = not prostrate cancer
Rick UK.: bye TJ
terryW: :( farwyn
murf: something like that
terryW: darwyn
murf: cya
Ron: See upi TJ.
terryW: Darwyn, If I could give you 1/2 of my talking ability I would
Ron: So long TJ. stay healthy.
Darwyn: i'd take it. too frustratin
murf: Is it fall in Winterpeg yet?
terryW: I am sure it is
Rick UK.: I will just have to wait until I have seen the specialist. Might give me a better idea.
Darwyn: leaves just starting 2 chang
murf: It's pritty up there when that happens
poohsdaddy: Does anyone else take Celexa or Cetalopram?? My regular doctor had me start it recently.
murf: pretty
Ron: I have been having ALOT of pain in my wrist. I think it is from using the cane. But I need it when walking any kind of distance.
Darwyn: I found a prgm on internet that talks for me
terryW: Murray are you flirting with me
terryW: LOL
murf: I just started clonazepam
terryW: cool darwyn, Dragon naturally speaking?
murf: terryW correcting my spelling ... sorrt Terry your not my type
murf: :p
Darwyn: no e-triloquist
terryW: darwyn, I never heard of that
murf: Ron Get a wrist brace
murf: and rest
Ron: Have one--use it some of the time.
Darwyn: itis good, has preprgrmd frazes
murf: Darwyn which one?
terryW: Murf I take that
terryW: Klonopin
terryW: I need to leave the room early, see ya all later
murf: cya Terry take care
Ron: Stay healthy Terry.
terryW: bye
Darwyn: e-triloquist
poohsdaddy: There are several ointments that can help to relieve some of the pain--Aspercream, Bio-Freeze, etc.
Rick UK.: I'm finding it more difficult to walk now, but the lower back pain causes lots of problems. It just takes so long to get seen by our health service.
Ron: I use biofreeeze--seems to help.
murf: Rick UK. Most people never see me stand up any more
murf: I shift from seat to seat
Rick UK.: I'm trying to get an electric power chair at the moment. It may take some time.
murf: walking is down to 10-15ft
murf: Rick UK. I wish we could send you one
poohsdaddy: I've also used heat wraps such as Therma Care for my hip or lower back a few times.
Rick UK.: Thanks. I have a charity looking into it for me.
Ron: I think that we should stand and walk as much as we can. Giving in to using a chair or scooter means we need it not just WANT it.
murf: Ron I'm sick of breaking bones
Ron: I hear you Murf.
Rick UK.: I agree, but its knowing when your body has had enough excersise.
murf: Rick UK. you got that right
murf: its hard to fall in the water
murf: lol
Darwyn: time to choke down breakfast. c ya later
Ron: LOL
Darwyn: bye
murf: CYa Darwyn
Rick UK.: lol. I go swimming and do my exercising there, once a week. It does help.
murf: Tae care
murf: Take
Rick UK.: Bye Darwyn
Ron: So long Darwyn.
poohsdaddy: We have a place that has used scooters and medical equipment at reasonable rates. Maybe, you could find someone like that in your area too.
murf: 3dam finger are not working lately
murf: This is all I got left ... typing
Rick UK.: It's getting the right type of chair, as I'm a big chap.
murf: Rick UK. Most are built for us
Rick UK.: Thats what I need and hopefully will gat.
murf: we're prayin' for ya
murf: oh and Love the jokes ... keep them coming
Rick UK.: Will do.
murf: Rick UK. check out my facebook page
Rick UK.: I will do that and I will ad TJ to mine as well.
murf: are we going to see you in Baltimore this yr?
Rick UK.: Its just taking time to get to know how to use it.
murf: He needs it .. Depressed I think
murf: Just play you can't break it
poohsdaddy: I would like to attend the Conference, but not able to get there this year.
Rick UK.: I would love to, but the finances won't stretch that far, sadly. I will have to leave it to next year.
murf: Any one have something they want to tal;k about?
murf: Rick UK. We'll send pictures
loshimo11: Has there been any talk as to where the conference will be in 2009?
murf: and think of you
Rick UK.: Thats great.
murf: loshimo11 on the west coast
loshimo11: Whoo Hooo!!!! Close to home!!!
murf: probably San Diego but not sure
murf: loshimo11 good then we'll see you there
Ron: Well gentleman--I must go for now. Stay healthy till next we chat. Bye.
Rick UK.: bye Ron.
murf: Cya Ron at 1 pm for you
loshimo11: Gots to go as well. Stay vertical everyone!!!
murf: loshimo11 cya good idea :}
Rick UK.: I'm also off as well. Will speak to you all soon. Good luck.
murf: Rick UK. cya Rick take what you can get
poohsdaddy: Thanks to all. I've got to get up and moving about too. Bye.
murf: poohsdaddy you stay up-right too
Gary_KC: I got to go, too. Talk to yours next chat.
murf: Cya Gary
murf: Dart you still there
murf: hey Dean
murf: we were just login off
dean: Hello guy's
murf: but you got me now
dean: I guess Iam late
murf: set your clock for one hour earlier
murf: any thing you want to talk about?
dean: I am on eastcoast time
Dart!: Sorry for hanging in, but had to leave for a bit
murf: 10:30 EST
dean: I will talk to you in two weeks
murf: ok
murf: you guys ok?
murf: I'll sign off now
murf: see you in two weeks
Dart!: I missed a lot of conversation, and was trying to catch up, but see that we are alone now, and don't want to hold you up, so will bid you g'day.

END CHAT